PDA

View Full Version : Off to see the "Real Tree" - April 19th - April 26th! Ali's Wish Trip PTR!


Pages : [1] 2

kellyw8863
12-12-2009, 09:45 AM
Okay, I've been hesitant to start one of these, because I haven't been totally convinced that Ali was going to choose WDW as her "one true wish," but now she's stuck on the zoo, and more specifically, seeing the giraffes. So I'm thinking Animal Kingdom should satisfy that, right?!

Now to introduce the members of our family, starting with my youngest, Alison, since she is the reason why I am here.

Alison is four years old and has been diagnosed with mitochondrial disease. Basically what that means is that her body is incapable of producing the energy necessary to sustain life. This occurs at the cellular level, so even though she looks great, what's going on inside her body isn't always so great. Individuals who are symptomatic and diagnosed before the age of five generally have a poor prognosis with an 80% mortality rate by the age of ten. Currently, there is no cure and no real treatment. Our best bet for the time being is a collection of vitamins, antioxidants, and cofactors.

Though she was only diagnosed this past June, she has had problems since birth. She was hospitalized for the first time when she was two months old because she would choke while nursing and turn blue. However, these spells were attributed to reflux, and her GI didn't look in to it much further. By the time she was four months old, she was an exceedingly miserable baby who cried most of the hours of the day and didn't sleep - ever. It was during one of these "episodes" that we finally drove her two hours to Children's Hospital Boston because we simply couldn't do it any more.

A series of abdominal x-rays showed that her large intestine was so distended that it was the size of an adults. Her GI began thinking Hirschsprung's Disease, so she was hospitalized and underwent an inpatient clean-out (think: colon prep for a colonoscopy) and tons of testing. We were so, so fortunate to be patients in one of the top motility clinics in the country but even still, her GI couldn't find a source for her intestinal problems.

http://i93.photobucket.com/albums/l71/kellyw8863/AliinHospitalMay06.jpg

Fast forward a couple of months and right around her first birthday, she had her first MRI. The primary reason was to assess some crazy head growth in that at a year old, her head was the circumference of a full grown adult's. However, her spine was scanned as well and it was discovered that she had a tethered spinal cord where the end of her spinal cord was attached to something at the base (it should be free-floating). Because of the insane constipation issues (three inpatient clean-outs in a six month period) and the fact that she was also showing some developmental delays (not walking and barely crawling, or even rolling), she underwent spinal cord detethering three weeks later, which was to be her first major surgery. Following the surgery, her constipation improved and she started walking. We thought that perhaps her "issues" were beginning to resolve. Little did we know this was just the beginning.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_1324.jpg

Alison grew into a very "sick" little girl. She always had something - sinus infections, pneumonias, and ear infections. She was still choking when she drank liquids, so when she was two years old, she was referred to an otolaryngologist to investigate why she was having so many problems swallowing. She had a "triple scope" (endoscopy, bronchoscopy, and laryngoscopy) that revealed something called a laryngeal cleft, which basically is a hole in the larynx that allows fluids to pass from the esophagus to the trachea and into the lungs. That explained why she was so sickly and why she got so many pneumonias. The doctors also discovered that she had quite a bit of lung damage from aspirating so much.

She was scheduled for surgery in January of 2008, which would be most challenging since it is a very delicate procedure and required a period of intubation post-surgery. I will never forget watching her as she was wheeled out of the OR "bagged," even though it was only because of the endotracheal tube. She spent the next 24 hours in the ICU sedated and intubated. Her surgeon did not give her a good prognosis saying that the size of the cleft could not account for the degree of aspiration, and that we should start considering neuromuscular diseases as the cause.

http://i93.photobucket.com/albums/l71/kellyw8863/049.jpg

Three months later is the first that mitochondrial disease was mentioned as a possibility. Her GI felt that it was logical considering the issues that she had with her GI tract (swallowing and colon), as well as all over low tone that was not resolving with age nor physical therapy. Her neurologist felt otherwise, and after the two of them battled it out, Ali was scheduled for a muscle biopsy the following fall. We received the results approximately three months later that showed serious defects in complex I and IV enzyme activity. Blood work and genetic testing supported this result, and Ali was formally diagnosed in June of 2009.

http://i93.photobucket.com/albums/l71/kellyw8863/ReadyToWalk.jpg

To date, Ali has a number of medical diagnoses including macrocephaly, astigmatism, dysphagia with chronic aspiration, reflux, laryngeal cleft (repaired), asthma, an atrial septal defect, tachycardia, bilateral hip dysplasia, tethered spinal cord (repaired), global hypotonia, hypermobility, multiple drug allergy syndrome, and autonomic dysfunction. I think that's it. For specialists, she is regularly followed by complex care services, neurosurgery, neurology, cardiology, opthamology, orthopedic surgery, pulmonary, gastroenterology, allergy/immunology, and metabolics. She wears bilateral AFOs, has problems with fatigue and chronic pain, and has a g-tube. According to her GI, we are definitely looking at some type of ostomy in her future, but we're trying to put it off for as long as possible. Over the course of the day, she takes nine different medications and receives 1500mls of fluid through her g-tube.

Despite everything that she has been through, she has faced it all with grace and a sense of determination that amazes me. She is funny, spirited, and oh so smart. All in all, I would say that she totally deserves to receive her "one true wish."

Thanks for reading - I had no idea that this would be so long! I'll have to come back to post about the rest of the family and start with the planning questions - off to do some shoe shopping!

Kelly

yinyanggirls
12-12-2009, 10:06 AM
Your PTR is started! Hurray! Ali has been through so much, as have all of you. We can totally relate.

If you get the "Unofficial Guide to WDW" there is an accompanying website that shows the predicted crowd levels throughout the year. The week of 4/17 starts out a little high (7s if I remember) but goes down to 4 or 5 by the end of the week. We are planning to do the less crowded parks early (SW, US, IOA) and then end the week with Disney. Let me know if you want any more specifics. I hope you get your dates soon! And it's never too early to reserve any meals you might want. You can always cancel later....

Momofwishkid
12-12-2009, 10:57 AM
Yay another wish PTR! Ali seems like an amazing little girl. Im sorry she has gone through so much. I cant wait to hear more about your planning and family.

kellyw8863
12-13-2009, 09:40 AM
Hello ladies, thanks for stopping in!:goodvibes You know, she has been through a lot, but it's all she (and we) knows, so it's all good. It's hard to wish away a disease (or disorder, or condition, etc.) when that is part of who your child is. With all my heart, soul, and being, I wish that she didn't have to endure the surgeries, procedures, ill effects, etc., but selfishly, I also love who she is, and I think that everything she has been through has given her a sense of spunk that is hard to otherwise imagine. Does that make sense?

So on to our other children...

Maya is six years old and the big sister. In many ways, she was almost "sicker" as an infant than her sister was. She was a happy baby except for when I tried to feed her. Then, all heck would break loose. She was put on reflux meds, which helped only minimally. When she was three months old, she was found to have a rather large atrial septal defect (Are you sensing a trend here? Yes, heart defects run in my husband's family, and he has the scars to prove it:laughing:), but her cardiologist did not feel that the ASD had anything to do with her eating issues. At four months, she was officially declared "failure to thrive" and had a feeding tube placed.

http://i93.photobucket.com/albums/l71/kellyw8863/Mayasleeping2.jpg

We continued to have "issues" throughout her first year and despite the fact that she was 9.5 pounds at birth, she had yet to even double her birth weight by the time she was a year old. At one point, her pediatrician even accused me of not feeding her and had her admitted to the hospital under the supervision of a social worker. As horrifying as it was to be accused of something so awful, it was a true turning point for us. We left her GI and pursued treatment at Children's Hospital Boston. Prior to the accusations, we had been hesitant to take that route because after all, Children's was for the "really sick kids," and except for Maya's weight and "happy to starve" attitude, she was as healthy and happy as could be.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0195-1.jpg

We were hooked up with a fabulous GI at Children's who reassured us that we were doing everything right, and that Maya's distaste for eating had nothing to do with us. Within six months, she had her diagnosed with gastroparesis and prescribed medication to help her stomach work better. It was like a miracle - for the first time ever in her life (at almost two years old), Maya asked for something to eat. We had turned the corner.

Now at six years old, Maya's heart defect has resolved and she is no longer on medication to help her eat, though she is still quite picky and on the small side. She is in first grade, smart as a whip, and loves the Disney princesses. Every time Ali says her wish is to go to the zoo, Maya adds in "at Disney." She wants to make sure that we get there.:lmao:

http://i93.photobucket.com/albums/l71/kellyw8863/SummerFun009-1.jpg

Unfortunately, the grocery store and other chores are calling me. I'll be back later to finish the introductions!

pipersmom
12-13-2009, 10:29 AM
Hooray! I'm glad you started your PTR even without dates, I did the same thing and I think it makes the time go faster :) The girls are so sweet. I love the sense of community here among the wish trippers, you can really tell when someone "gets" it, and in my eyes, any support is a good thing! I've met a lot of very cool other people on my PTR as well, as I'm sure you will. Looking forward to reading more about you and your family and trip preparations!

Momofwishkid
12-13-2009, 06:27 PM
Maya is just adorable. Im glad her tummy issues are all better Im sure that was hard to go through.

yinyanggirls
12-14-2009, 09:41 PM
Hello ladies, thanks for stopping in!:goodvibes You know, she has been through a lot, but it's all she (and we) knows, so it's all good. It's hard to wish away a disease (or disorder, or condition, etc.) when that is part of who your child is. With all my heart, soul, and being, I wish that she didn't have to endure the surgeries, procedures, ill effects, etc., but selfishly, I also love who she is, and I think that everything she has been through has given her a sense of spunk that is hard to otherwise imagine. Does that make sense?


Makes perfect sense. Phoebe's cognitive delays make her so sweet and innocent. She has her stubborn, whiny moments, but she is truly an angel and while it's hard to adjust to this life we never imagined, I can't imagine HER any other way.

So on to our other children...

Maya is six years old and the big sister.
Now at six years old, Maya's heart defect has resolved and she is no longer on medication to help her eat, though she is still quite picky and on the small side. She is in first grade, smart as a whip, and loves the Disney princesses. Every time Ali says her wish is to go to the zoo, Maya adds in "at Disney." She wants to make sure that we get there.:lmao:

http://i93.photobucket.com/albums/l71/kellyw8863/SummerFun009-1.jpg

That's the happy "ending" one can only hope for - for issues to resolve, for answers to questions, for no more surgeries or medications! What a blessing for her to have come through that part of her life.

Unfortunately, the grocery store and other chores are calling me. I'll be back later to finish the introductions!

Can't wait!!!

cantwaittoseemickey
12-15-2009, 11:06 AM
Can't wait to hear more about your lovely family. Welcome!

kellyw8863
12-16-2009, 02:55 PM
Hey, ladies, thanks for reading! I can't believe how incredibly busy things have been! I'll need to set aside time later to finish introductions - work is killing me!

yinyanggirls
12-16-2009, 04:12 PM
Hey, ladies, thanks for reading! I can't believe how incredibly busy things have been! I'll need to set aside time later to finish introductions - work is killing me!

No worries! You've got plenty of time. ;)

dmbfan
12-16-2009, 08:41 PM
Hey Kelly...have not heard from you in a week, how are things? How did the apt with Dr K go? Any word from the wish granters yet?

Next week when your out of school, give me a buzz....:wizard:

kellyw8863
12-18-2009, 03:43 PM
Hey Kelly...have not heard from you in a week, how are things? How did the apt with Dr K go? Any word from the wish granters yet?

Next week when your out of school, give me a buzz....:wizard:

Things here have been crazy! I've had tons going on at work in addition to the usual stuff. I'm so ready for vacation! The appointment went okay. He confirmed what we already knew, that the antibiotic issue is huge. It's really going to impact our ability to treat infections aggressively, which is what he relies on to prevent regressions. It's really quite overwhelming if I stop to think about it (which I don't;)) The good news is that we hammered out a fantastic acute illness plan for when she gets sick. It was such a productive appointment since she wasn't actually with me.

No word from the wish granters yet, but I did break down and call the Springfield office today. She confirmed that two granters had been assigned and said that if we don't hear by next Wednesday to call back and let her know. I hate the not knowing!

How are you guys doing? Thanks for posting the Starlight photos - they came out great! I'll try to post ours tonight. We just got the flash drive with all the pictures on it yesterday. How is your Disney planning coming along?

dmbfan
12-18-2009, 06:38 PM
Hey...so glad your appt went good...and that you got a good plan in place, that always makes a huge difference.

I sent you a message on facebook, so if you get a chance to go read it.

Our Disney trip is pretty much planned and done...all I need to do a week before we leave is have the HHC sent out his stuff to the resort. We are also just waiting to hear what night we are going to volunteer at GKTW, all I know is we are doing a 5-9pm, just not sure what night.

Give me a call next week if you want, I have some more stuff to tell you if you go to Disney...:wizard:

kellyw8863
12-20-2009, 11:06 AM
Hey...so glad your appt went good...and that you got a good plan in place, that always makes a huge difference.

I sent you a message on facebook, so if you get a chance to go read it.

Our Disney trip is pretty much planned and done...all I need to do a week before we leave is have the HHC sent out his stuff to the resort. We are also just waiting to hear what night we are going to volunteer at GKTW, all I know is we are doing a 5-9pm, just not sure what night.

Give me a call next week if you want, I have some more stuff to tell you if you go to Disney...:wizard:

I did get your message, thanks! I'm hoping that we can catch up next week. Will travel for lunch, if you're up to it!:goodvibes

That's awesome that your planning is done. You use NEHT, right? And they'll ship the stuff down there for you? Not that we have tons of stuff that Ali needs, but that would be awesome if we didn't have to schlepp her formula, bags, and all that stuff. I'll have to look into that!

kellyw8863
12-20-2009, 11:28 AM
Okay, a brief moment of quiet, so I'm going to try and finish up introductions.:cool1:

Gabriel is seventeen years old and the newest addition to our family. Last January, I was walking through the lobby of the high school where my husband and I both teach, and I ran into Gabe who was in the process of being removed from his home by DCFS. I had Gabe in class the year before, and my husband also knew him from winter track. We talked about it and couldn't really come up with a reason NOT to take him in, so two days later, he was placed with us. This was last January, and I can't imagine life any different.

http://i93.photobucket.com/albums/l71/kellyw8863/GabeSanta2.jpg

We have been truly blessed, as he has been a wonderful addition to the family. The girls both adore him, and he has taught my husband and I so much about life. Every day, I am amazed that he could have endured what he did for as long as he did with such grace. It really is difficult to explain what a good kid he is without actually meeting him.

Now for my husband and I, we have been married for eight years and together for ten years. We met at a private school for children with severe special needs and were both in a master's program to receive degrees in teaching children with intensive special needs. I eventually decided that wasn't for me and moved to western Massachusetts to pursue a master's degree in English education. He followed, and the rest, as they say, is history. We have a very naughty chocolate lab named Jake and an equally naughty kitty named Zoe.

When all is said and done, we are so thankful that we live such a charmed life and we couldn't be happier.

So that's it for our family! Thanks for reading!

pipersmom
12-20-2009, 12:21 PM
I did get your message, thanks! I'm hoping that we can catch up next week. Will travel for lunch, if you're up to it!:goodvibes

That's awesome that your planning is done. You use NEHT, right? And they'll ship the stuff down there for you? Not that we have tons of stuff that Ali needs, but that would be awesome if we didn't have to schlepp her formula, bags, and all that stuff. I'll have to look into that!

Afternoon, Kelly :)

Don't worry about shipping stuff down until after you talk to your wish coordinator, I think most chapters will pay & make the arrangements for that type of thing as part of the wish. Our chapter is paying to rent a vest for Piper while we're there so I don't have to drag ours all over the place!

Gabe is so handsome! You all are so wonderful to take him in, we need more people and teachers in the world who show that type of empathy towards kids in general. :love:

Momofwishkid
12-20-2009, 12:58 PM
Hi Kelly,
What an amazing family you have. Gabe definetley sounds like he has made the fam complete. Im so glad he was able to find you and your DH. Cant wait to read more.

dmbfan
12-20-2009, 02:20 PM
Yes, NHT shipped all of Jake's TPN, IV fluids, all his supplies, including meds. They made sure it was there by Friday, and we go there Sat. We did not have to pay for anything. Our MAW chapter does not do going away party's and did not pay for his supplies to be shipped. Do you have a nurse at NHT, or do you go thru the enteral department?

The Village will supply u with an IV pole.

kellyw8863
12-21-2009, 07:31 PM
Thanks, ladies! He truly has made our family complete. We are so lucky we found each other!

Christine, it was great talking with you tonight! I swear, we just need to get together outside of the hospital where we can actually chat. We do not have a nurse through NEHT - we just go through enteral with varied results. Depending on where she is at when we do finally go, we may just as well bring our own stuff with us and then buy Pedialyte as we go from Wal-Mart down there. That is good to know about the IV pole, though. It's easier to use in the dark then just tossing everything in the back pack.

Well, the news of the evening is that we did hear from our wish granter!:dance3::dance3: I actually screened the call the first time because I recognized it as a local name and number, and was afraid it was a parent from my husband's track team calling to yell at him for punishing the kids at practice today (long story, but they deserve it). The second time, I answered the phone because I was afraid it would wake up the girls.

He did ask if we had any idea what Ali would wish for, so I did tell him that the one thing she has been consistent with is asking for the zoo. He kind of laughed and said, "Well, this should be interesting." He said his schedule is pretty booked up between now and the first of the year, so unfortunately, it doesn't look like we will meet until after the 4th. Kind of a bummer, but at least I feel better knowing that things are moving in the right direction!

So in the meantime, we'll just enjoy the holidays and keep praying for health. The girls' child care provider has been bringing her sick child here to work with her. The first day wasn't so bad because he was only coughing a bit, but by today, he was truly hacking up a lung. Not a good thing for a kid with mito, asthma, and chronic lung disease who cannot take any antibiotics outside of the picu. We need her to stay healthy!

kellyw8863
12-21-2009, 07:36 PM
Okay, small world moment. Ali's wish granter is indeed the father of one of my husband's athletes and student where I teach. Hilarious.

dmbfan
12-21-2009, 08:27 PM
YEAH....:cool1::cool1::cool1::cool1: It had to have been our talk about Give Kids The World tonight...:cool1::cool1::cool1: I am just so excitied for you, of course if Ali says she wants Disney and the Franklin Park Zoo..:rotfl2:

This really is a wish of a lifetime for a child that loves Disney....:woohoo:

kellyw8863
12-21-2009, 08:29 PM
YEAH....:cool1::cool1::cool1::cool1: It had to have been our talk about Give Kids The World tonight...:cool1::cool1::cool1: I am just so excitied for you, of course if Ali says she wants Disney and the Franklin Park Zoo..:rotfl2:

This really is a wish of a lifetime for a child that loves Disney....:woohoo:

Dorchestah here we come!:cool1::cool1::cool1:

pipersmom
12-21-2009, 08:34 PM
Woohoo..I'm so glad you heard from your wish granter!! At least now you know when you'll have contact again. I think it's neat that it's someone you all know at least somewhat that will be facilitating your wish, at least you know how to get in touch with him ;) I'm sorry you can't meet until after the 4th, I know the waiting is hard!! :hug:

Momofwishkid
12-21-2009, 10:55 PM
:yay: Im so glad you heard from your wish granter and how funny he is a parent. DH better watch the punishing J/K :rotfl:

kellyw8863
12-23-2009, 03:01 PM
Woohoo..I'm so glad you heard from your wish granter!! At least now you know when you'll have contact again. I think it's neat that it's someone you all know at least somewhat that will be facilitating your wish, at least you know how to get in touch with him ;) I'm sorry you can't meet until after the 4th, I know the waiting is hard!! :hug:

Thanks! It's really okay. Now we at least have contact and it feels like things are moving in the right direction. And things will be so busy around here that I'm sure the time will fly by!

:yay: Im so glad you heard from your wish granter and how funny he is a parent. DH better watch the punishing J/K :rotfl:

Right?! I did find out, though, that his son does not run track so we're at least in the clear on that one. But when I was getting ready to put the kids to bed last night, I was explaining it all to DH, who was like, "Wait...What did you say his name is?" And when I told him, he was like :scared1:. He works for the town, and we have had several run-ins with him (not necessarily bad) over some things going on in our development. DH even has his phone number in his cell phone.:lmao:

I am thrilled to announce that school is officially out for winter break.:cheer2: It was nothing short of a hellish two weeks with six fights, two drug busts, one drug overdose, and many mouthy teenagers. And for the record, I work in a high school, not a prison. It's been crazy. Now to get everything done in the next 24 hours!

On that note, I better get off the 'puter and do something!

Momofwishkid
12-23-2009, 06:27 PM
Wow! It sounds like you have had a crazy time lately. Where do you live, I'll be sure not to move there. J/K I know high schools every where are crazy now a days. Makes me scared for my kids getting to that age. Hope you have a much deserved relaxing winter break.

maroo
12-26-2009, 10:42 AM
I finally found you!

Thank you for pointing this out!

Your family is precious.

Have you guys seen the movie Blindsided? It seems like it is about football...but it sounds a lot like your family! Made me smile from ear to ear to hear that you guys have taken in Gabriel. He seems like a very nice young man!

I hear you on the high school junk. I went to a very interesting junior and high school myself here in Little Rock. In Junior High the student who sat next to me in Honors English was gunned down on the school playground...and that was YEARS before school shootings were everywhere. :sad2:

I can't wait to see how the wish granting talks go!! I hope she doesn't end up at her local zoo. :rotfl:

You guys have got to make sure (assuming you go to Disney) that you eat at Boma at the Animal Kingdom Lodge - and check out the Savannah. :cloud9:

cantwaittoseemickey
12-26-2009, 10:58 AM
What a handsome young man Gabe is. How wonderfuly you have given him a awsome family and life.I hope you are able to meet with the Wish granter soon after the 1st.

Applemomma
12-26-2009, 11:38 AM
Just found your PTR and I'm already in love with your family!! Can't wait to hear about all your adventures!

kellyw8863
12-26-2009, 08:21 PM
Wow! It sounds like you have had a crazy time lately. Where do you live, I'll be sure not to move there. J/K I know high schools every where are crazy now a days. Makes me scared for my kids getting to that age. Hope you have a much deserved relaxing winter break.

We live out in North Central Massachusetts, and it's actually a great place to live. Unfortunately, there is also a lot of rural poverty out here and a lot of kids who have nothing to look forward to over the holidays. The good definitely outweighs the bad, and our community really is filled with wonderful people. I hope you had a great holiday!

I finally found you!

Thank you for pointing this out!

Your family is precious.

Have you guys seen the movie Blindsided? It seems like it is about football...but it sounds a lot like your family! Made me smile from ear to ear to hear that you guys have taken in Gabriel. He seems like a very nice young man!

I hear you on the high school junk. I went to a very interesting junior and high school myself here in Little Rock. In Junior High the student who sat next to me in Honors English was gunned down on the school playground...and that was YEARS before school shootings were everywhere. :sad2:

I can't wait to see how the wish granting talks go!! I hope she doesn't end up at her local zoo. :rotfl:

You guys have got to make sure (assuming you go to Disney) that you eat at Boma at the Animal Kingdom Lodge - and check out the Savannah. :cloud9:

Hi Maroo! Thanks so much for linking me up! We actually took Gabe out to dinner and to see The Blind Side a couple of weeks ago, and it did certainly hit close to home for all of us. As corny as it sounds, we do really feel as though our family is now complete. He's such a good kid and has given as much to us as we have to him.

You know, as challenging as teaching high school is, I truly, truly love what I do. Just the night before (the 22nd), we had about 15 of my students here Christmas caroling, and it really made my night. And then there's always those moments when I'm walking down the hall and hear a group of students talking about something we did or read in class that morning, and my day is made. The violence does make things difficult, though. I'm sorry that you had the experience of knowing someone who was gunned down.:sad2:

I can't wait to meet our wish granter, though my husband has met him on several occasions.:rotfl: It will be interesting to see where things go with the whole zoo thing. We are planning on extending our trip by one night and staying at the Animal Kingdom Lodge, assuming that we can get away with booking only a single night there.

I do hope that you had a wonderful holiday and that you are all rested up after your trip. I am full of admiration for you for all that you do for the wish families over here and elsewhere.:goodvibes

What a handsome young man Gabe is. How wonderfuly you have given him a awsome family and life.I hope you are able to meet with the Wish granter soon after the 1st.

Thanks! He is such a good young man. It's amazing how well he has turned out with all the garbage that he has been through. I just pray that we are able to give him what he needs as he enters adulthood. How are things going with you guys? Did you all have a nice holiday?

Just found your PTR and I'm already in love with your family!! Can't wait to hear about all your adventures!

Hello there! We have a good time around these parts and truly just enjoy being together. Thanks for reading!

Well, we talked to the wish granter again on the 24th, and it looks like we'll be getting together sometime the week of the 4th. He's having a hard time coordinating with his partner, so it's unlikely it will happen before then. But that's okay. Everyone is busy this time of year, which is to be expected.

We had a great day yesterday. The girls' big gift was a DS for each, and Gabe's big gift was a Playstation 3. We spent way, way too much money this year, but it was so important to us to make sure that Gabe had a good first Christmas here. He has never received gifts that were just for him and he literally came to us with nothing. And I know it's not about the gifts, but it's also hard when he's never had anything. You can just tell that he's so pleased.

Poor Ali has hit rock bottom. She's been fighting a cold all week, and add to that a series of very long days. By this evening, she was screaming that her legs hurt and she wasn't tolerating anything through her tube. Tomorrow we'll spend some time laying around and PLANNING, and hopefully she'll be back to new on Monday. We're off to see Nemo on Ice through the Starlight Foundation, so hopefully she's feeling better.

Off for a piece of Coldstone ice cream cake before it disappears!

kellyw8863
12-27-2009, 02:38 PM
I just posted a "year in review" to Ali's caringbridge page if anyone is interested. The link is in my siggie.:goodvibes

dmbfan
12-27-2009, 05:45 PM
I just posted a "year in review" to Ali's caringbridge page if anyone is interested. The link is in my siggie.:goodvibes



Just read it...love the positve attitude...:thumbsup2...of course you have always had one..lol...anyway...glad things are going well on the medical side of things at the moment, and I pray that 2010 is even a better year health wise for Ali. Well, I am sure we will catch up by phone this week....:dance3::dance3::dance3::dance3::dance3:

kellyw8863
12-27-2009, 09:41 PM
Meh. You've certainly seen me in many not so shining moments.:rotfl2: At any rate, I'll give you a ring. I hope you guys had a great Christmas!

kcandbella
12-27-2009, 09:53 PM
Just found your PTR and am in awe of your wonderful family. I can't wait to read more!

KateMW
12-27-2009, 11:41 PM
Just found your PTR and am in awe of your wonderful family. I can't wait to read more!

Me too!:banana:

kellyw8863
12-28-2009, 01:37 PM
Just found your PTR and am in awe of your wonderful family. I can't wait to read more!

Me too!:banana:

Hey there!:goodvibes Thanks so much. I think our family is pretty nifty myself, but then again, I am biased.:rotfl:

Ali's still hanging in there. We're dealing with temps off and on still, but I'm not convinced she has a sinus infection. Quiet day yesterday and today, so hopefully she'll have turned a corner by tomorrow. We'll see!

Momofwishkid
12-28-2009, 02:01 PM
Im sorry Ali is dealing with the temps and hope she is better soon. I havent had a chance to go read her year-in-review but I plan on doing it soon.

pnutallergymom
12-28-2009, 07:39 PM
Hi Kelly,

I just wanted to check in and see how Ali was feeling tonight. Hoping you guys aren't headed inpatient. Keeping you all in our thoughts and prayers. Can't wait to hear more about your trip plans.

pipersmom
12-28-2009, 08:13 PM
Hey Kelly..
Keeping Ali in our thoughts and prayers and hoping the extra rest helped!! :hug:

yinyanggirls
12-28-2009, 08:20 PM
Hi Kelly, I've missed so much this past week! I think my list of subscribed threads lies to me sometimes. It is not always showing me which ones have new posts. Anyway, I'm so sorry to hear Ali is so sick. This is the one and only thing I hate about this time of year. I hope she's doing better tomorrow. It's frustrating when it goes beyond a week!
On the wish side of things, our wish granter came alone because her partner had another appt. She gave me all of her contact info, just in case, but months later, we've only ever dealt with the one we first met. How funny that you guys already knew yours.
Sounds like you had a nice Cmas. I know what you mean about trying to make up for Gabe's past. I think he got the best Cmas present ever, with his new family. ;)
I'll be sure to check in more often, now that I know my list is lying to me. :rolleyes:

kellyw8863
12-29-2009, 01:42 PM
Im sorry Ali is dealing with the temps and hope she is better soon. I havent had a chance to go read her year-in-review but I plan on doing it soon.

Hi Kelly,

I just wanted to check in and see how Ali was feeling tonight. Hoping you guys aren't headed inpatient. Keeping you all in our thoughts and prayers. Can't wait to hear more about your trip plans.

Hey Kelly..
Keeping Ali in our thoughts and prayers and hoping the extra rest helped!! :hug:

Thanks for the thoughts, ladies.:goodvibes Unfortunately, I think we may be fighting a loosing battle. In a last ditch effort to keep her home, I bought some stuff to irrigate her sinuses, but she's starting with the goopy eyes, which is usually a sure-fire sign of an infection. I'm going to give the saline stuff until tomorrow to work, and if there's no improvement, I imagine we'll be heading in. It's just so frustrating because it seems like overkill for a sinus infection.

Hi Kelly, I've missed so much this past week! I think my list of subscribed threads lies to me sometimes. It is not always showing me which ones have new posts. Anyway, I'm so sorry to hear Ali is so sick. This is the one and only thing I hate about this time of year. I hope she's doing better tomorrow. It's frustrating when it goes beyond a week!
On the wish side of things, our wish granter came alone because her partner had another appt. She gave me all of her contact info, just in case, but months later, we've only ever dealt with the one we first met. How funny that you guys already knew yours.
Sounds like you had a nice Cmas. I know what you mean about trying to make up for Gabe's past. I think he got the best Cmas present ever, with his new family. ;)
I'll be sure to check in more often, now that I know my list is lying to me. :rolleyes:

No worries! I find the same thing with the subscribed threads. I also find that I'll think I subscribed and then when I go to check it, I find the thread isn't part of my list afterall. Weird.

Okay, so with all the talk about the thwarted plane bomb incident, I'm starting to get very concerned about flying with all of Ali's medical stuff. She has meds that definitely will equal more than 3oz for the week and since they're all compounded, I'm sure as heck not going to check them. If our bags ever got lost, we would not be able to replace the meds easily and the cost to do so would be prohibitive. The formula and pedialyte I'm not worried about because it sounds like the HHC will ship directly there, but what about the meds? Anyone run into this?

pipersmom
12-29-2009, 01:48 PM
I could be wrong, Kelly, but I know our chapter has told us to get a list of ALL her prescribed meds and equipment and have her Dr put that they must remain with Piper at all times. As long as you have that documentation, and all the meds are in original, labelled bottles the airlines can't give you any grief about them.

I've stopped bothering to subscribe to threads, I just go through every day and look for all the threads I've posted to (they have a check mark on the box.) With my dial-up it was taking me forever to go back and forth to the user cp!!

pnutallergymom
12-29-2009, 02:09 PM
Okay, so with all the talk about the thwarted plane bomb incident, I'm starting to get very concerned about flying with all of Ali's medical stuff. She has meds that definitely will equal more than 3oz for the week and since they're all compounded, I'm sure as heck not going to check them. If our bags ever got lost, we would not be able to replace the meds easily and the cost to do so would be prohibitive. The formula and pedialyte I'm not worried about because it sounds like the HHC will ship directly there, but what about the meds? Anyone run into this?

Kelly,

Don't worry one bit about the meds. We have traveled twice with Brigitte. I have gotten a letter from her pediatrician/specialists that list all of the meds we are carrying on. I also bring them in the original prescription containers with her name and the drug name on it. Some need to be kept cold, so I bring a soft sided refrigeration bag and add an ice pack to it. I have never had a problem. The only time I had an issue was with benadryl. It is one of her meds, but was already in an open container and was more than 3oz. They did give me a some hassle with that, but I made sure it was on her med list and they did test it!! Bryan said I should have just let them toss it and bought another one...but I was pissed at that point and I like to argue!! I won!! Got to keep the bottle. This time, I will bring a small bottle that hasn't been opened yet.

The only other issue I had was with her sternotomy wires. I literally had to strip her down and show the scar as the TSA person could not believe that an 8mo old baby could possibly have wires in her chest that would set off the metal detector. He shut right up after I took her shirt off.....and apologized. I did have a letter about that as well, but I like I said, he just didn't believe me.

My guess is that things will calm down again soon...and by the time you go, unfortunately, they'll be back in their ho hum ways again!! Just bring all of your documentation. Are you flying out of Manchester or Boston?? MHT has a "medical line" that you can go through and it did save us some aggravation the second time we flew. I would ges that BOS does too.

Definitely ship as much down as you can. It is so much easier!! Do you use Infusion Solutions/NEHT? They are great about doing this. Just be sure to catch them before they ship your order to you for the month you are going...otherwise, you will have to ship it yourself right to the resort.

yinyanggirls
12-29-2009, 02:48 PM
If your chapter is willing to ship stuff for you, maybe they could do it far enough ahead that you can verify it's arrival before you leave? If GKTW verifies receipt I'd feel more comfortable than trusting the airline! That is complicated. Security always takes longer with Phoebe because they have to check the chair separately. They wand it and also take samples from the cushions with needles (I guess to test for powders?). We are used to it and just try to allow a few extra minutes for this testing. When we get to the door of the airplane we then have to "gatecheck" her chair where a porter takes it under the plane and loads it there. I always get a little nervous letting her chair go, even though it's going right under the plane and not through the whole luggage system of the airport. I guess a wheelchair is easier to come by than meds in that situation. In the past we have carried her to her seat but it's been a few years. I think we might try the plane's aisle chair this time and see if it's easier. Even on Wish trips we don't get to leave these worries behind. ;)

dmbfan
12-29-2009, 03:46 PM
We had no problems with Jake meds and IV pump when we went there. We had our Drs notes and stuff and no one even looked at them.

NEHT shipped everything to GKTW and we had about three huge boxs brought to our villa shortly after arriving there.

For this trip, I talked to my nurse and they will ship everything for me so I do not have to deal with it, and since all his meds are in IV form, they will just send it down there as well.

I am hoping by the time we leave, all this airport hype will have slowed down.

By the way, I forgot to ask, what is Ali taking for formula now?

Momofwishkid
12-29-2009, 03:57 PM
Good question Kelly, I had been wondering the same thing about the meds. Now I have my answers. Look like I need to contact Gavin's doc about a note. Does anyone know if it has to be a note from the prescribing doc or could it be just from a pedeatrician? Would be a pain to have to get a note from each specialist.

dmbfan
12-29-2009, 04:17 PM
We got our note for our GI, but that is who does the TPN/IV Fluids, Tube feeds and his meds...so for us it was easy.

You just need one note stating how many meds your taking ( say you need to travel with 3 liquid meds and 1 pill med) and make sure it has the hospital's letterhead on the top.

Again they never looked at our letter, but I was told this is they ldrs like to do it...not sure what that means:rotfl:

erika412
12-29-2009, 10:23 PM
Hi Kelly! I'm subbing.

kellyw8863
12-29-2009, 10:36 PM
Kelly,

My guess is that things will calm down again soon...and by the time you go, unfortunately, they'll be back in their ho hum ways again!! Just bring all of your documentation. Are you flying out of Manchester or Boston?? MHT has a "medical line" that you can go through and it did save us some aggravation the second time we flew. I would ges that BOS does too.

Definitely ship as much down as you can. It is so much easier!! Do you use Infusion Solutions/NEHT? They are great about doing this. Just be sure to catch them before they ship your order to you for the month you are going...otherwise, you will have to ship it yourself right to the resort.

I imagine we'll fly out of Boston, though Manchester is closer for us. But being that we're going through the MA/RI chapter, my assumption is that they automatically go to Boston. We do use NEHT. That would be great if they would do a split order.

If your chapter is willing to ship stuff for you, maybe they could do it far enough ahead that you can verify it's arrival before you leave? If GKTW verifies receipt I'd feel more comfortable than trusting the airline! That is complicated. Security always takes longer with Phoebe because they have to check the chair separately. They wand it and also take samples from the cushions with needles (I guess to test for powders?). We are used to it and just try to allow a few extra minutes for this testing. When we get to the door of the airplane we then have to "gatecheck" her chair where a porter takes it under the plane and loads it there. I always get a little nervous letting her chair go, even though it's going right under the plane and not through the whole luggage system of the airport. I guess a wheelchair is easier to come by than meds in that situation. In the past we have carried her to her seat but it's been a few years. I think we might try the plane's aisle chair this time and see if it's easier. Even on Wish trips we don't get to leave these worries behind. ;)

Do you know if they will "gate check" a stroller if you use that stroller as a "wheelchair"? If she's having a bad day, she'll need it right up to the last minute. Especially if it is early in the morning. I can't believe that they even test the stuffing in Phoebe's chair! I agree with you on shipping versus trusting the airline. I have had a bag lost before, and it stunk!

We had no problems with Jake meds and IV pump when we went there. We had our Drs notes and stuff and no one even looked at them.

NEHT shipped everything to GKTW and we had about three huge boxs brought to our villa shortly after arriving there.

For this trip, I talked to my nurse and they will ship everything for me so I do not have to deal with it, and since all his meds are in IV form, they will just send it down there as well.

I am hoping by the time we leave, all this airport hype will have slowed down.

By the way, I forgot to ask, what is Ali taking for formula now?

Does NEHT just do a split order? She really doesn't have that many supplies. She'll have the pump on her back, and then she'll just need the formula, pedialyte, extra bags, syringes...okay, I guess it's more than I thought, especially if I plan for worst case scenario (e.g. tape, gauze, extra button, etc.). For formula, she's taking Nutren Jr., though we're supposed to be trialing Boost because it has more calories but less volume. She doesn't like it, though. It makes her gaggy. In general, I don't understand why we're all of a sudden having stomach issues.

Good question Kelly, I had been wondering the same thing about the meds. Now I have my answers. Look like I need to contact Gavin's doc about a note. Does anyone know if it has to be a note from the prescribing doc or could it be just from a pedeatrician? Would be a pain to have to get a note from each specialist.

I hope that the note can come from a single source. Otherwise, I'll be chasing docs down from two different hospitals. Not fun!

I don't know what I'm still doing up. If Ali isn't considerably better tomorrow morning, we'll be heading into the ped, which means we'll probably be heading into Boston. I know something major is going on because she's having major GI issues that are the opposite of what we usually deal with, lots of leakage around her GT, and she's not tolerating much through the tube, which doesn't make sense to me. She'll nibble and actually ate a bowl of Spaghetti-Os for dinner, but after 15 minutes of having her pump run, she'll start crying for me to turn it down. I just can't wrap my head around the idea of an ICU stay over a sinus infection. I know it's because of the antibiotics, but it just seems like overkill. I should probably get some sleep because if she does end up being admitted, sleep will be hard to come by.

kellyw8863
12-29-2009, 10:37 PM
Hi Kelly! I'm subbing.

Hello there! We posted at the same time. Good to "see" you here!

yinyanggirls
12-29-2009, 11:28 PM
Yes, you can gate-check a stroller, even if it's not used as a wheelchair. Anyone can. Just inform the check-in people and fill out a different colored tag for it.

dmbfan
12-30-2009, 09:19 AM
hmmmm, what is a split order...:confused3

Hope Ali is doing much better today..:thumbsup2

kellyw8863
12-30-2009, 09:25 AM
hmmmm, what is a split order...:confused3

Hope Ali is doing much better today..:thumbsup2

1/4 of the order go to GKTW and the rest here. Unfortunately, she's not doing better and we're having a hard time putting the ephemeral "plan" into action. Dr. K. is out of town and the plan is not in the computer. I'm a bit frustrated right now.:mad:

maroo
12-30-2009, 09:36 AM
1/4 of the order go to GKTW and the rest here. Unfortunately, she's not doing better and we're having a hard time putting the ephemeral "plan" into action. Dr. K. is out of town and the plan is not in the computer. I'm a bit frustrated right now.:mad:

oh no.

Praying for you guys right now. :hug:

dmbfan
12-30-2009, 10:00 AM
Ahhh I see...I get weekly oders, so I am not 100% sure how that works. Just ask them they will be helpful.

Are you gettng the pedilyte covered yet?

pnutallergymom
12-30-2009, 10:10 AM
NEHT will definitely do a split order. It is so much easier. I did make sure that I had them ship it down a few days before our arrival, that way I could call to be sure that they had it, just in case. Worst thing would be to get there and not have any supplies!!! I have never had an issue with any of it.

You can definitely gate check the stroller as well. We actually wheel Brigitte right onto the plane and put her in her car seat and then fold up the wheelchair. The only thing I will say is that we did have some issues with the bolts coming loose on her WC the last time we flew...It was just because of the bumping around under the plane that they shook loose. This time I will have Bryan pack his wrench etc. in his bag so that we can tighten things up when we get to the resort.

As far as the note goes, I just had my pedi write it for us. They did write the letter for her sternotomy wires separately, though. Made it easier to hand that specific letter to the person wanding her and not having to look through the entire med list!! We were actually able to just wheel Brigitte through the metal detector the last time since she can't walk really well. They did wipe it down with "detection" wipes etc...it wasn't much of a problem at all. Then they just wanded her down over in private space away from everyone.

It sounds so complicated, but as long as you have all of your documentation, you will be fine. Its more of a time consuming process, but does go pretty smoothly. I would definitely make sure to get to the airport EARLY....it does take a LONG time to get through security, especially since you will be going on school vacation week and the airport will be filled with families!!

kellyw8863
12-30-2009, 10:31 AM
oh no.

Praying for you guys right now. :hug:

Thanks, Maroo.:goodvibes

Ahhh I see...I get weekly oders, so I am not 100% sure how that works. Just ask them they will be helpful.

Are you gettng the pedilyte covered yet?

All of Ali's are by the month. Nothing really expires, so I imagine that's why. No TPN or IV fluids here. Pedialyte is not covered yet, but that is my fault. I haven't done anything to request the letter of necessity. I've just been buying the WalMart brand, which is pretty inexpensive. And, she's not tolerating much through her tube, so it's lasting longer.

NEHT will definitely do a split order. It is so much easier. I did make sure that I had them ship it down a few days before our arrival, that way I could call to be sure that they had it, just in case. Worst thing would be to get there and not have any supplies!!! I have never had an issue with any of it.

You can definitely gate check the stroller as well. We actually wheel Brigitte right onto the plane and put her in her car seat and then fold up the wheelchair. The only thing I will say is that we did have some issues with the bolts coming loose on her WC the last time we flew...It was just because of the bumping around under the plane that they shook loose. This time I will have Bryan pack his wrench etc. in his bag so that we can tighten things up when we get to the resort.

As far as the note goes, I just had my pedi write it for us. They did write the letter for her sternotomy wires separately, though. Made it easier to hand that specific letter to the person wanding her and not having to look through the entire med list!! We were actually able to just wheel Brigitte through the metal detector the last time since she can't walk really well. They did wipe it down with "detection" wipes etc...it wasn't much of a problem at all. Then they just wanded her down over in private space away from everyone.

It sounds so complicated, but as long as you have all of your documentation, you will be fine. Its more of a time consuming process, but does go pretty smoothly. I would definitely make sure to get to the airport EARLY....it does take a LONG time to get through security, especially since you will be going on school vacation week and the airport will be filled with families!!

Thanks for the info! I just hate flying, period, which is probably where all my anxiety is coming from.:laughing:

dmbfan
12-30-2009, 04:17 PM
How did today go....please tell me your home...:hug:

Do you want more pedilyte, cause I can get an order and give them to you. I think I get 6 or so a month...:confused3

kellyw8863
12-30-2009, 04:34 PM
How did today go....please tell me your home...:hug:

Do you want more pedilyte, cause I can get an order and give them to you. I think I get 6 or so a month...:confused3

We're home, and oh so very frustrated. We were there for an hour and a half, and Ali would not let the pediatrician near her. She threw a fit like I have never seen her throw. She would not even let him look in her ears, and she is known for being super cooperative. Heck, the last time she got an IV placed, she held her arm out for the nurse. But, that stupid PEG change ruined her. This is why I wanted sedation, and I'm so angry at myself that I let the GI talk me out of it.

So, we came home with a culture kit to try and do it ourselves. The thing with that is we won't be able to get one until tomorrow. That means driving an hour back there to drop it off. It won't be ready for 24 hours after that, which brings us to New Year's Day. And of course, the weekend has to follow the holiday, so we won't get any answers until Monday. So much for treating suspected/confirmed infections aggressively. CCS called around 4pm to see if we "got anywhere today." Ummm...No? I thought they were supposed to help with that.

And then for icing on the cake, the pediatrician announces, "I wouldn't be so concerned if her immune workup wasn't abnormal." Ummm...What? No one ever told us it was abnormal. He said he wouldn't consider it grossly abnormal, but he felt it was abnormal enough that her immune function is definitely a factor in all these illnesses and infections. I think this is the most frustrating day we've had in a long time. Looking at her, I'd put money on the fact that she has an infection, but instead of doing something about it, I guess I'm just going to sit here and hope that I am wrong.

I think I really just need some sleep. Tonight is Garth's turn to get up and wipe butt all. night. long. I'm beginning to think that constipation isn't such a bad thing afterall.;) But first, off for Mexican and a BIG margarita.

Thanks for asking. It's Garth's turn to put the kids to bed tonight so I'll look for you online (here or FB). If you're around and not doing anything, I'll give you a call. I'd love to hear how your Christmas was and how your Disney plans are coming along.:goodvibes

erika412
12-30-2009, 04:38 PM
Oh no Kelly. What a day. You deserve a couple of those big old margaritas.

dmbfan
12-30-2009, 04:46 PM
Thanks for asking. It's Garth's turn to put the kids to bed tonight so I'll look for you online (here or FB). If you're around and not doing anything, I'll give you a call. I'd love to hear how your Christmas was and how your Disney plans are coming along.:goodvibes

I will be around at 8:30 if you want to call or talk. Sorry it did not go as planned, I hope tomorrow brings a much better day. :hug:

Momofwishkid
12-30-2009, 04:56 PM
Oh Kelly, Im so sorry you had such a lousy day :hug: I know how frustrating it can be when you dont get the answers you want and need. Gavin is known for being very uncooperative with the docs so I feel for you. Enjoy those margarita's and try to get some rest. I hope Ali does Ok and you get those answers soon.

yinyanggirls
12-30-2009, 10:07 PM
I hate when I let people go against what I know isn't going to work. I have a couple of horrible memories like that too. The worst one was when she was waking up from anesthesia after eye surgery and I just sat in the waiting room way longer than they said it would take, not asking questions, not knowing what was going on. They finally came and got me as a last resort to try and calm her. They didn't think it would be good for the parents to see their kid so agitated. WHAT??? As soon as I held her she calmed down, even though she was still whining and wouldn't open her eyes. Makes me so mad I didn't ask questions when I was sitting there waiting....
Anyway, have a grande margarita and enjoy your night "off". ;)

pipersmom
12-31-2009, 07:15 AM
I'm sorry you had such a hard time yesterday, Kelly. I'm with Melissa..it bites when you know what the best thing would be for your child and the Drs totally disregard it. Hoping you have a better day today! :hug:

kayrosek
12-31-2009, 11:15 PM
Hi, I stumbled onto your PTR and I'm hooked. The way your oldest daughter was as a baby sounds so much like the way my son Jonnie was. He coulden't tolerate food, coulden't gain weight and was constantly sick. Also the story of you guys taking in Gabe made me cry. I was one of those kids with a disturbing childhood and one of my highschool teachers offered to take me in. It diden't work out but the offer alone changed my life. It touched me in a way I cannot describe and I have never forgotten it. I'm so sorry to hear Ali is sick I hope she feels better soon and doesn't have to endure too much more in the mean time. I can't wait to read more!

maroo
01-02-2010, 12:29 AM
Hi, I stumbled onto your PTR and I'm hooked. The way your oldest daughter was as a baby sounds so much like the way my son Jonnie was. He coulden't tolerate food, coulden't gain weight and was constantly sick. Also the story of you guys taking in Gabe made me cry. I was one of those kids with a disturbing childhood and one of my highschool teachers offered to take me in. It diden't work out but the offer alone changed my life. It touched me in a way I cannot describe and I have never forgotten it. I'm so sorry to hear Ali is sick I hope she feels better soon and doesn't have to endure too much more in the mean time. I can't wait to read more!

:hug:

kellyw8863
01-02-2010, 10:25 AM
Thanks, ladies, for the commisseration regarding the whole doctor thing. I hate having so many hands in the pot, so to speak. It makes it that much more difficult to figure out who needs to do what. And, for better or for worse, we really rely on Ali's complex care pediatrician (coordinates care with all of her specialists), who is just fabulous and knows us very well. When I called on Wednesday, neither he nor his nurse was in. I hate that these things always happen on the holidays!

Hi, I stumbled onto your PTR and I'm hooked. The way your oldest daughter was as a baby sounds so much like the way my son Jonnie was. He coulden't tolerate food, coulden't gain weight and was constantly sick. Also the story of you guys taking in Gabe made me cry. I was one of those kids with a disturbing childhood and one of my highschool teachers offered to take me in. It diden't work out but the offer alone changed my life. It touched me in a way I cannot describe and I have never forgotten it. I'm so sorry to hear Ali is sick I hope she feels better soon and doesn't have to endure too much more in the mean time. I can't wait to read more!

I'm glad you stumbled in! How is Jonnie now? Have you been able to find relief for him? Thanks for sharing your story about your own childhood. You know, the funny thing is that we never intended to do foster care, and if you ask us if we consider ourselves foster parents now, we would tell you, "no." We love the completeness that he has brought to our family, and we can't imagine things otherwise. I'm sorry that things didn't work out for you, and I'm hopeful that you found another path.:hug::hug::hug:

So happy New Year, everyone! Poor Ali is still sick, but we cultured her sinuses on Wednesday, and the culture so far is normal. Now we're just keeping our fingers crossed that something else hasn't/will not develop. We finally uploaded pictures from our camera, so I thought I'd go ahead and share some here.:goodvibes

The girls on Christmas Eve...
http://i93.photobucket.com/albums/l71/kellyw8863/Holidays20090152.jpg

Sprinkling reindeer food...
http://i93.photobucket.com/albums/l71/kellyw8863/AliReindeerFood2.jpg

The girls' and their beloved DSes...It was all they wanted from Santa...
http://i93.photobucket.com/albums/l71/kellyw8863/GirlsDS.jpg

Gabe thinking he's getting a PS3, but it's really a backpack...
http://i93.photobucket.com/albums/l71/kellyw8863/GabeBackPack.jpg

And finally, the PS3 hidden in a box of Nutren Jr...
http://i93.photobucket.com/albums/l71/kellyw8863/GabePlaystation.jpg

And finally, I asked this question over on the Wish Trippers thread, but I figured I'd ask it here, too. If GKTW if full for the week that you want to go, does that mean you can't got at all, or does it mean that you can go but not stay at GKTW? Just curious as to how that works.

pipersmom
01-02-2010, 01:17 PM
Kelly, I can only answer from our experience. Melissa had asked for the same dates we did and was told there was no space that week. We got that same week she had asked for. Our assumption is that each chapter/region must have a certain number of spots allotted for each period of time? Just to keep things fair, I guess. So I'm crossing my fingers you get the week you requested. I'm not sure exactly how they choose who has to pick different dates and who they would put on site at WDW. I hope everything will work for you to be able to go on those dates, it sounds like they would try to work with you knowing you would have to wait a year otherwise. :hug:

Edited to add: I completely forgot to comment on the pics..I hate it when I do that!! The girls look so :cutie: in their matching pj's. And the look on Gabe's face in the pic where he's holding the PS3..He's just glowing..I can only imagine how great that made you guys feel! It almost made me cry....

dmbfan
01-02-2010, 06:42 PM
Those pictures are great. Both the girls are just tooo sweet...:lovestruc

I love how you totally fooled Gabe with the ps3...:rotfl2: We did the same thing Hannah and her new Ipod...:rotfl:

kayrosek
01-03-2010, 10:49 AM
Kelly those pictures are adorable. It looks like your family had a wonderful Christmas. I'm sorry Ali is still sick but glad her culture was clear hopefully she's on the road to feeling better soon. Jonnie is my little miracle child. We never did find alot of answers to why he was the way he was. We got a few minor diagnosis and then found out he had major food allergies and intolerences (at that time there were five foods he wasen't allergic to). Even staying away from the "bad" foods diden't help completley at first but with an extremly high calorie diet he started gaining a little weight. Now at nine he's nearly average weight for his height (although he's quite short for his age). Most of his intolerances have disapeared and he has only a few allergies left. His developmental delays were attributed to Autism and he has several learning disorders but he's doing great. Thanks for asking and sorry that was so long I promise I wasen't trying hijack your thread.

kellyw8863
01-03-2010, 02:33 PM
Kelly, I can only answer from our experience. Melissa had asked for the same dates we did and was told there was no space that week. We got that same week she had asked for. Our assumption is that each chapter/region must have a certain number of spots allotted for each period of time? Just to keep things fair, I guess. So I'm crossing my fingers you get the week you requested. I'm not sure exactly how they choose who has to pick different dates and who they would put on site at WDW. I hope everything will work for you to be able to go on those dates, it sounds like they would try to work with you knowing you would have to wait a year otherwise. :hug:

Edited to add: I completely forgot to comment on the pics..I hate it when I do that!! The girls look so :cutie: in their matching pj's. And the look on Gabe's face in the pic where he's holding the PS3..He's just glowing..I can only imagine how great that made you guys feel! It almost made me cry....

It's so WEIRD how it all works! At any rate, we should know something soon. We're supposed to touch base with her wish granter at the beginning of the week.

Those pictures are great. Both the girls are just tooo sweet...:lovestruc

I love how you totally fooled Gabe with the ps3...:rotfl2: We did the same thing Hannah and her new Ipod...:rotfl:

Thanks.:goodvibes Did you get pictures of Hannah? Isn't it fun messing with them?! You can totally see on Gabe's face that he's trying to be appreciative, but he's also wondering, "What the heck?!":rotfl2:

Kelly those pictures are adorable. It looks like your family had a wonderful Christmas. I'm sorry Ali is still sick but glad her culture was clear hopefully she's on the road to feeling better soon. Jonnie is my little miracle child. We never did find alot of answers to why he was the way he was. We got a few minor diagnosis and then found out he had major food allergies and intolerences (at that time there were five foods he wasen't allergic to). Even staying away from the "bad" foods diden't help completley at first but with an extremly high calorie diet he started gaining a little weight. Now at nine he's nearly average weight for his height (although he's quite short for his age). Most of his intolerances have disapeared and he has only a few allergies left. His developmental delays were attributed to Autism and he has several learning disorders but he's doing great. Thanks for asking and sorry that was so long I promise I wasen't trying hijack your thread.

Thanks! We did have a good Christmas! Spent waaaayyyy too much money, which means we'll be eating cheap for the next couple of months, but it was so worth it! I'm glad that Jonnie seems like he is doing better. Do you have a PTR/TR here where I can "stalk" you?:rotfl2: I'd love to read more about your family! And don't worry at all about "hijacking" my thread. I'm loving the people I am meeting here!

Ugghh...I can't believe back to school tomorrow. Good for the kids, bad for me. I have so much to do in the next week and a half before exams and grades close. I haven't even BEGUN to make my exams yet, and I have four classes worth to create. ACK!

Wish granter this week. Yippee! I can't wait. It will be nice to make things a little bit more "official." At any rate, I'm having a hard time controlling myself, and I've already started working on autograph books.:yay: And, we created an online account for our Disney Visa so we can get a card for those Disney Dollars.

Okay, I need to go do some more cleaning up and make a grocery list. And a shower would be nice.:rolleyes1

Momofwishkid
01-03-2010, 04:13 PM
Very cute pics! We do reindeer food every year too. Of course it's all the better when there's snow on the ground which we didnt have this year. Love the look on Gabe's face when he gets his PS3 :thumbsup2 good job on the trickery

yinyanggirls
01-03-2010, 10:48 PM
Love the Cmas jammies! How cute that they all wanted just one thing. Tessa still wants everything she sees commercials for, and Phoebe doesn't care. Phew!

I remember all too well, the stress of not having dates yet, and not being able to reallllly start the planning! I'm glad you get to talk to the WG soon!

dmbfan
01-04-2010, 09:58 AM
Hoping you pop on tonight and say " We got the call"...:cool1::cool1::cool1:

kayrosek
01-04-2010, 11:13 AM
I too am waiting to here that you got the call hope it happens soon. I don't have a TR I've been debating starting one. I found the Dis 1 1/2 before our WDW trip (our first ever) so there was no time for a PTR. We've been back a month and the idea of writing a TR seems daunting. This trip was wonderful there were amazing reasons behind it, but everyone here is sick of hearing about WDW and I need someone to share it with who isen't sick of hearing about it so now I'm thinking I'll start one.

dmbfan
01-04-2010, 04:53 PM
Ahh because my facebook is acting up, I am not sure you got my message....but I have to reorder some supplies and did not know if you want the pedilyte for Ali?

Hope that call come today....:cheer2::cheer2::cheer2::cheer2::cheer2:

dmbfan
01-04-2010, 07:21 PM
Ahhhh KELLY....WHERE ARE YOU????......:yay::yay::yay::yay::yay::yay:

kellyw8863
01-05-2010, 09:09 AM
Ahhhh KELLY....WHERE ARE YOU????......:yay::yay::yay::yay::yay::yay:

:rotfl2::rotfl2::rotfl2:

I feel asleep putting the girls to bed. Wish granters are coming Saturday at 5:30pm!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

yinyanggirls
01-05-2010, 09:10 AM
So we have to wait another 5 days!?! I think we're in more suspense than you. J/K - not possible. ;)

kellyw8863
01-05-2010, 04:29 PM
Very cute pics! We do reindeer food every year too. Of course it's all the better when there's snow on the ground which we didnt have this year. Love the look on Gabe's face when he gets his PS3 :thumbsup2 good job on the trickery
Thanks! I'll be honest - the only reason we did it this year is because someone else made it for the girls.:rolleyes1 I mean well, but I tend not to get around to stuff like that. I'll lend you some of our snow. We have tons!

Love the Cmas jammies! How cute that they all wanted just one thing. Tessa still wants everything she sees commercials for, and Phoebe doesn't care. Phew!

I remember all too well, the stress of not having dates yet, and not being able to reallllly start the planning! I'm glad you get to talk to the WG soon!

Maya and Ali do the same thing, but when asked what they wanted most from Santa, they both said the DS. But, if we go to the store, or they see commercials, they are the same way.

I too am waiting to here that you got the call hope it happens soon. I don't have a TR I've been debating starting one. I found the Dis 1 1/2 before our WDW trip (our first ever) so there was no time for a PTR. We've been back a month and the idea of writing a TR seems daunting. This trip was wonderful there were amazing reasons behind it, but everyone here is sick of hearing about WDW and I need someone to share it with who isen't sick of hearing about it so now I'm thinking I'll start one.

Just take it one day, or even 1/2 day, at a time!

So we have to wait another 5 days!?! I think we're in more suspense than you. J/K - not possible. ;)

I know! And I should be grading research papers and making final exams, but I know I'm going to spend the time here instead.:surfweb:

Did you all do something for your wish granters when they came? How long did the visit last? Ours are coming right at 5:30, so I'm wondering about nibblies or something.

Momofwishkid
01-05-2010, 04:50 PM
Hi Kelly, when our Wish granters came we made cookies and went over Gavin's wish mural. They were only over for about a half hour but Gavin is very antisocial when it comes to new people so this could be why it was so short.

dmbfan
01-05-2010, 08:56 PM
Yeah....:cool1::cool1::cool1::cool1: Sat will be here before you know it.

I for one can't wait..( however I still wish you were going next month..:guilty:) but that is me being selfish...:rotfl:

We need to make a date to go out for dinner and drinks soon, plus I need to give you the pedilyte..:woohoo:

We will talk soon...:dance3::dance3::dance3::dance3:

dmbfan
01-08-2010, 05:52 PM
Tomorrow is the big day...:cool1::cool1::cool1: I am so super excitied for you all...I can't wait to read how it went tomorrow night. BTW, I also have all that pedilyte for you, 5 bottles...:thumbsup2

pnutallergymom
01-08-2010, 09:17 PM
Hi Kelly!!

Just wanted to wish you tons of luck with the "zoo" tomorrow!! Have a blast and be sure to post as soon as you can!!

BTW.....if you need more Pedialyte, I have TONS....and a TON of extra supplies too!! Just let me know what you might need.

Good Luck!!!!

kellyw8863
01-09-2010, 07:21 AM
Hi Kelly, when our Wish granters came we made cookies and went over Gavin's wish mural. They were only over for about a half hour but Gavin is very antisocial when it comes to new people so this could be why it was so short.

Yeah....:cool1::cool1::cool1::cool1: Sat will be here before you know it.

I for one can't wait..( however I still wish you were going next month..:guilty:) but that is me being selfish...:rotfl:

We need to make a date to go out for dinner and drinks soon, plus I need to give you the pedilyte..:woohoo:

We will talk soon...:dance3::dance3::dance3::dance3:

Tomorrow is the big day...:cool1::cool1::cool1: I am so super excitied for you all...I can't wait to read how it went tomorrow night. BTW, I also have all that pedilyte for you, 5 bottles...:thumbsup2

I can't believe it is here already!:cool1::cool1::cool1: I have so much to do today for work, and I am so unmotivated to do it. I just can't focus! At any rate, thanks for getting the Pedialyte. I'll give you a call either tomorrow or this week (let me know what's good for you), and maybe we can make some arrangements to get together soon. Give Nicky a heads up, and maybe the three of us can meet for lunch or dinner, or something.

Hi Kelly!!

Just wanted to wish you tons of luck with the "zoo" tomorrow!! Have a blast and be sure to post as soon as you can!!

BTW.....if you need more Pedialyte, I have TONS....and a TON of extra supplies too!! Just let me know what you might need.

Good Luck!!!!

Thanks, Shannon!:goodvibes The camera is charged and ready to go, so I'm sure we'll have lots of pictures to go along with it. Thanks for the offer for supplies, but I think we're actually good! We finally got our HHC to send us some back up supplies (though they're still stingy with the extensions), but where she's only on Pedialyte/water, we really don't need that much. How is Brigitte doing? Did things go okay with cardiology?

This has been such a crazy week! Good thing, because it certainly made the time go by more quickly. Next week is exams and I teach three semester courses, so I've been swamped trying to get my exams done and grades together. To complicate this, I have all seniors, so I've also been trying to identify seniors who are at risk of failing, which in turn means that they will not be able to walk at graduation in the spring. Can you say stress?!?!

Thankfully, Ali has been doing well through all of this. She seemed to come through whatever crud she had relatively unscathed. She still looks terrible, but is definitely better.

Maya is having a very difficult time understanding that this is Ali's wish. She just doesn't understand why they can't share it. Our wish granter did say that he was bringing gifts for both girls, so that's good, but Maya wants to be the one to actually declare, "I want to go to Disney." Ali is still adamant that she wants the zoo to see the monkeys and the lion. I guess the giraffe is now out. I know it's supposed to be only the wish child's wish, but at this point, I have no qualms about speaking up and suggesting Disney. Ali is still getting what she wants, and I know that she will absolutely LOVE Animal Kingdom. She is only four and her ability to express what she wants and likes is really pretty basic.

Okay, so I should probably get my Saturday chores done. Nine more hours!:banana::banana::banana:

pipersmom
01-09-2010, 07:44 AM
Good luck with the wish granters tonight! I wish I had good advice for you about dealing with Maya's feelings, but I haven't had to deal with that at all only having Piper. I'm glad the time has passed by quickly for you, but sorry you're feeling stressed! :hug: Hopefully things will smooth out for you after exams this coming week.

Wee Annie
01-09-2010, 08:37 AM
Maya is having a very difficult time understanding that this is Ali's wish. She just doesn't understand why they can't share it. Our wish granter did say that he was bringing gifts for both girls, so that's good, but Maya wants to be the one to actually declare, "I want to go to Disney." Ali is still adamant that she wants the zoo to see the monkeys and the lion. I guess the giraffe is now out. I know it's supposed to be only the wish child's wish, but at this point, I have no qualms about speaking up and suggesting Disney. Ali is still getting what she wants, and I know that she will absolutely LOVE Animal Kingdom. She is only four and her ability to express what she wants and likes is really pretty basic.
:

Kelly,
My wish child was only three when we met with the wish granters, not particularly articulate, and so shy she hardly speaks to strangers anyways. I know she wants to go to Disney because we had to cancel our trip last year due to her diagnosis, and her older sisters REALLY want to go. I had no qualms whatsoever suggesting Disney to them. Elke's sisters have truly suffered throughout this, and I think of this trip for them as well as for her. That being said, of course one of the wish granters took the time to develop some rapport with Elke and try to "speak" to her (don't know if Elke really spoke back) and figure out what she liked. But I pointed them in the direction of WDW, and don't feel bad about it.

Good luck!

Ann

Momofwishkid
01-09-2010, 12:42 PM
Hi Kelly, today's the day. Im so ecited for you guys. I know you dont have alot of time but maybe you could have Maya and Ali work together on a Wish collage to show the wish granters. That's what we did and it helped the other kids feel like they were apart of it. We just took a large piece of construction paper and wrote Wish trip on top and then printed a bunch of pics of things all 3 kids wanted to see and do anlong with their favorite charcters and glued them on. It was also good since Gavin was very reluctant to even talk to the wish granters. Good Luck and the volunteers are so great Im sure they will make both girls happy.

dmbfan
01-09-2010, 06:13 PM
WELL....:banana::banana::banana: I am thinking DISNEY WORLD it is by now...:dance3::dance3::dance3: My guess would be even if she said Franklin Park Zoo, her granters would do a double take on that one.

Can't wait to hear about it...but however a LITTLE bummed that you will not be going during Feb vacation...BUT that is ok..I am still super excitied...:woohoo:

I already told Nicky that the three of us are going to get together some weekend for Dinner and Drinks...we just have a do it on a nice that it is NOT snowing out..:rolleyes1 JK...I will be waiting to see an update soon..:hug:

pnutallergymom
01-09-2010, 06:33 PM
Was just stopping in to look for an update!!! Hoping that your meeting was all you expected and more!!!!!;)

kayrosek
01-09-2010, 10:05 PM
Just wanted to stop by, hope your meeting went well. I can't wait to hear about it.

kellyw8863
01-10-2010, 09:31 AM
Thanks, ladies! So the big day finally arrived, and guess what?!?! She picked Disney!:dance3::dance3::dance3::dance3:

Well, not technically. She said that her wish was to actually "see the monkeys, the giraffe's, the hippopotamuses, and the real tree." Her wish granter Kent caught on to the "real tree" reference, and brought up the huge tree in the middle of Animal Kingdom. Both girls started screaming, and it was all done at that point.:rotfl2:

At any rate, here are some pictures...

They were coming at 5:30, so we put together some cheese and crackers, and veggies and dip. I knew the kids would be hungry, and the adults probably would, too. Ali was my little helper.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0903-1.jpg

At about twenty past five, the girls assumed their position at the front window.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0906.jpg

Mom, I think they're here!

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0907.jpg

And, they're gone. They thought they went to the wrong house, so as quickly as they pulled into the driveway, they left. Notice the look on Ali's face.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0908.jpg

And, they're back again!

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0909.jpg

The girls waited by the door to make sure the wish granters knew they were at the right house.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0912.jpg

And here they come! I think this is my favorite picture. The look on her face is priceless.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0911.jpg

Kent and Kim were so thoughtful, and brought Disney princess gifts for both the girls.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0915.jpg

And then last picture, here are the girls with Kent and Kim.

http://i93.photobucket.com/albums/l71/kellyw8863/IMG_0918.jpg

We had so much fun!

We gave Kent and Kim our April dates and were told that it should not be a problem since we cannot do the summer due to a documented heat intolerance. The only question is whether or not there will be room at GKTW, but Kent said that he has seen much quicker turn-arounds where everything worked out fine. And, it turns out that the Western MA office does do send off parties, so we talked a little bit about that last night, too. Nothing huge, but thoughtful and something to look forward to.

So that's it for now. I have so much school work to do today, and I don't feel like doing any of it. I just want to play around here!

pipersmom
01-10-2010, 09:36 AM
Okay.. I looove the progression of the looks on Ali's face as it goes from..here they come..there they go..to...they're here..they're really here!! That grin is awesome, and you can just see her whole face lighting up! I'm glad the meeting went so smoothly..very smart of Ali to mention the big tree! Woohoo for pressies and a send-off party! Hoping you get your dates soon so you can really start planning!!

:banana: party: :banana:

Applemomma
01-10-2010, 10:39 AM
Yay!!! You're going to Disney! You're going to Disney!!party::mickeyjum:mickeyjum

Momofwishkid
01-10-2010, 11:11 AM
:cool1: Im so glad it went smoothly and they caught on to the big tree reference. Disney here you come! :banana::yay:

dmbfan
01-10-2010, 12:51 PM
:cool1::cool1::cool1:...the pictures are too cute...LOVE IT...:cool1::cool1:

That is also cool about the send off party...the Boston one does not do it, nor do they give you any shirts or buttons...however we were lucky that our friends gave Jake a great going away party.

I am sure you;ll be just FINE getting room at GKTW...plus they have added on ALOT of villages, so I think you will be great.

Call me this week and we can plan a night out..:dance3::dance3:

yinyanggirls
01-10-2010, 01:24 PM
Those pics are priceless!!! Good thinking to grab the camera. :thumbsup2
Did they tell you when they will be able to confirm your requested dates?

kayrosek
01-10-2010, 11:14 PM
Great pics. I have this annoying habit of forgetting to grab my camera so I think it's amazing that you have all those really cute pics. "The real tree" how precious and how perfect. It's great the wish granters caught onto that so quickly.

erika412
01-11-2010, 07:47 AM
Those pictures are great!

kellyw8863
01-11-2010, 04:49 PM
Okay.. I looove the progression of the looks on Ali's face as it goes from..here they come..there they go..to...they're here..they're really here!! That grin is awesome, and you can just see her whole face lighting up! I'm glad the meeting went so smoothly..very smart of Ali to mention the big tree! Woohoo for pressies and a send-off party! Hoping you get your dates soon so you can really start planning!!

:banana: party: :banana:

Yay!!! You're going to Disney! You're going to Disney!!party::mickeyjum:mickeyjum

:cool1: Im so glad it went smoothly and they caught on to the big tree reference. Disney here you come! :banana::yay:

Great pics. I have this annoying habit of forgetting to grab my camera so I think it's amazing that you have all those really cute pics. "The real tree" how precious and how perfect. It's great the wish granters caught onto that so quickly.

Those pictures are great!

Thanks, ladies! We're pretty darn excited. Though Maya had a look of sheer panic on her face when Ali kept saying "the real tree" over and over.

:cool1::cool1::cool1:...the pictures are too cute...LOVE IT...:cool1::cool1:

That is also cool about the send off party...the Boston one does not do it, nor do they give you any shirts or buttons...however we were lucky that our friends gave Jake a great going away party.

I am sure you;ll be just FINE getting room at GKTW...plus they have added on ALOT of villages, so I think you will be great.

Call me this week and we can plan a night out..:dance3::dance3:

I was really surprised when she said it. It sounds like they do t-shirts, too, or at least I had to put down sizes. Maybe that's just a standard form. Let me know when you're around this week and I'll give you a ring!

Those pics are priceless!!! Good thinking to grab the camera. :thumbsup2
Did they tell you when they will be able to confirm your requested dates?

They said hopefully soon!:woohoo:

So I just finished faxing birth certificates, insurance policies, etc. to MAW. They said once they had everything that things should move quickly, that Disney is a pretty easy trip for them to book, so hopefully we'll hear something in the next couple of weeks. It sounds like worst case scenario, we won't stay at GKTW, but he thought we'd be okay. Keeping our fingers crossed!

Applemomma
01-11-2010, 05:32 PM
Please tell us Gabe gets to go too?! He'll have some much fun....I can just picture him riding Dumbo with one of the girls with a huge smile on his face :)

kellyw8863
01-11-2010, 05:42 PM
Please tell us Gabe gets to go too?! He'll have some much fun....I can just picture him riding Dumbo with one of the girls with a huge smile on his face :)

Because of some things that have happened recently, it is an extremely complicated situation, but yes, as of right now, our intention is to have him come with us.:goodvibes

Thumper321
01-11-2010, 07:58 PM
Just wanted to say hi! I'm so glad I get to follow your story. We're waiting for dates as well, so maybe we can try not to go insane together. It's so hard to wait in between steps. :rolleyes1: Sorry to hear about the issues with Gabe. Hope you are able to work it all out before the trip. Let us know when you get your travel dates!

kayrosek
01-12-2010, 12:09 AM
Well I'll be crossing my fingers that GKTW is available and that Gabe can go with you, hopefully it will all work out you guys deserve the perfect magical trip.

maroo
01-12-2010, 07:47 AM
Woo hoo!!! So glad she wished for Disney!

And great job on the Wish Granters part - to pick up on the Animal Kingdom references! :laughing:

pnutallergymom
01-12-2010, 08:06 AM
Yay!!!!!!:cool1:

Disney, here you come!!!!:banana:

I LOVED the pictures!!! BTW, Ali looks great in her pics!! Glad to see she was able to fight that scare off!!! Keep up the good work Ali, you too Kelly;)

kellyw8863
01-16-2010, 08:07 AM
Just wanted to say hi! I'm so glad I get to follow your story. We're waiting for dates as well, so maybe we can try not to go insane together. It's so hard to wait in between steps. :rolleyes1: Sorry to hear about the issues with Gabe. Hope you are able to work it all out before the trip. Let us know when you get your travel dates!

Thanks! We have tentatively firm dates, if that makes sense.:rotfl2: We were told that April 20th - 26th is pretty much a sure thing. Any word on your dates? I need to go check out your PTR!

Well I'll be crossing my fingers that GKTW is available and that Gabe can go with you, hopefully it will all work out you guys deserve the perfect magical trip.

Thanks! We will be staying at GKTW, and Gabe will be going with us, but not as part of MAW. Apparently he's not considered an immediate family member.:sad2: We are going to try and pull it together to pay OOP, though.:thumbsup2

Woo hoo!!! So glad she wished for Disney!

And great job on the Wish Granters part - to pick up on the Animal Kingdom references! :laughing:

Our wish granters were very sweet! He was very excited when he realized he knew what she was talking about.:rotfl2:

Yay!!!!!!:cool1:

Disney, here you come!!!!:banana:

I LOVED the pictures!!! BTW, Ali looks great in her pics!! Glad to see she was able to fight that scare off!!! Keep up the good work Ali, you too Kelly;)

Woot! Thanks, Shannon. Any word from Miami yet? Thinking of you guys!

Okay, so it's been kind of a long and stressful week, but it does seem as though we have dates. They couldn't do our original (or even our second choice) dates because she said they don't book school vacation weeks.:confused: So we're scheduled for April 20th - 26th. I've made a last minute plea for the 19th - 25th so that we don't have to take time off for work, but I'm not sure they will do it. Our teaching contract says that we cannot take days off at either end of a school vacation or long weekend, so I dread having to spring that one on them.

The other blip is that they will not include Gabe because he is not considered an immediate family member. This really bothers me, more because of the idea of it than anything else, but we will be paying OOP because there is no way we could go and not bring him. For as long as he lives in this house, he IS a member of the family. So, we'll refrain from extending our trip (easy since it doesn't make sense to extend at the beginning and we won't be able to extend at the end because of the work conflict), and we'll have to be more conservative with character meals. But, it's worth it to keep our family together.

And on that note, does anyone know if park tickets are transferrable? We have friends who live in Florida who could potentially buy Gabe's tickets, but I don't want to ask them to do that only to find out that the tickets are nontransferrable. I am going to make one last plea for help with these from MAW, but I'm not optimistic.

pnutallergymom
01-16-2010, 08:19 AM
Hi Kelly,

I don't know anything about the tickets being transferable or not. But, what about doing Disney's Give a Day, Get a Day with Gabe?? It was super easy, and at least that would be one ticket you wouldn't have to purchase. We did ours on Thursday night, and it was super easy. We weren't even there for 2 hrs. I haven't looked lately, but before, there were even some activities you could do at home. I think it was for Jayme's Fund Initiative "lil MDG's"....you had to decorate a shoebox at home and then put a small donation (no minimum required) and then send in a picture of yourselves making it.

The other thing is to go on mousesavers...if your friends can't buy the tix, they usually have the cheapest ticket prices available.

I hope you are able to get your dates changed. Is it just your specific chapter that doesn't do the school vacation thing?? It doesnt' have anything to do with GKTW, right??

Well, hopefully you can get back into the planning phase!!!

kellyw8863
01-16-2010, 08:24 AM
Hi Kelly,

I don't know anything about the tickets being transferable or not. But, what about doing Disney's Give a Day, Get a Day with Gabe?? It was super easy, and at least that would be one ticket you wouldn't have to purchase. We did ours on Thursday night, and it was super easy. We weren't even there for 2 hrs. I haven't looked lately, but before, there were even some activities you could do at home. I think it was for Jayme's Fund Initiative "lil MDG's"....you had to decorate a shoebox at home and then put a small donation (no minimum required) and then send in a picture of yourselves making it.

The other thing is to go on mousesavers...if your friends can't buy the tix, they usually have the cheapest ticket prices available.

I hope you are able to get your dates changed. Is it just your specific chapter that doesn't do the school vacation thing?? It doesnt' have anything to do with GKTW, right??

Well, hopefully you can get back into the planning phase!!!

Thanks, Shannon, I totally forgot about Give a Day, Get a Day! I think that will be great for all of us! I will also check out mousesavers for the rest of the days. I'm not sure if it's a chapter thing. We were told that GKTW was not the problem, that the problem is the flight. They said first that there are no direct flights left for the morning of the 17th, and then when we asked about other vacation dates, we were told they don't book vacations period. That's the only time we can go!

And I'm definitely getting back into the planning phase. I'm going to spend the morning making ADRs and setting up an itinerary. I'll post it as soon as I've got it all together.:goodvibes

Momofwishkid
01-16-2010, 10:51 AM
I am so happy to hear your going to be going and with Gabe. I still cant believe they do not consider him a immediate family member :scared1:
Good luck with your ADR's.

kayrosek
01-16-2010, 01:30 PM
I'm so glad Gabe gets to go bu t it is a bit disapointing that they don't consider him family. The give a day get a day sounds like a good idea and I can't wait to see your itinerary.

pacrosby
01-16-2010, 02:00 PM
As far as tickets go, the person who buys the ticket doesn't have to necessarily use it but once it's put through that turnstile the same person has to use it each time (they use some sort of finger print indentification system). Does that make sense?

GAD/GAD would be a great idea because you could then take the 79 dollars (the worth of a one day ticket) and apply it to a multi-day. It would end up making Gabe's 3 day park hopper much more affordable.

I'm actually not surprised to hear that they don't want to ok trips on school vacation weeks. The airfare is so much more and they really try to keep the cost down as much as they can. When we asked to extend they said that it would depend on whether it would increase the cost of the airfare. As a result we were ok to extend to the 18th but not any longer as the airfare jumped dramatically after that time (probably peak holiday fare).


I'm sorry that they won't pay for Gabe. I know that hat is a such a big disappointment for you. I think they have to have rules/policies in order to keep things simple. Yes your situation is legitimate but other people might try to take advantage if they were more flexible and then they'd have to spend more time trying to verify each and every situation. They probably just want to streamline the process so policies are put in place and then, that's that. Bummer for you guys though. I'm pretty sure he will be able to stay at GKTW with you for free and will be able to eat there for a dollar a meal. That will help. Like you said it's the tickets, and the airfare. Don't forget that they have been known to be pretty generous as far as the expense check. If you guys don't typically eat big and expensive meals, you may find that you still have plenty of money for food in the park, including a couple of character meals (try breakfasts, they are MUCH less expensive than dinners).

woohoo on the going away party!!! We didn't get one and we were out of the springfield office too.


Pamela


Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

kellyw8863
01-16-2010, 02:26 PM
I am so happy to hear your going to be going and with Gabe. I still cant believe they do not consider him a immediate family member :scared1:
Good luck with your ADR's.

I'm so glad Gabe gets to go bu t it is a bit disapointing that they don't consider him family. The give a day get a day sounds like a good idea and I can't wait to see your itinerary.

Thanks, ladies.:goodvibes

As far as tickets go, the person who buys the ticket doesn't have to necessarily use it but once it's put through that turnstile the same person has to use it each time (they use some sort of finger print indentification system). Does that make sense?

GAD/GAD would be a great idea because you could then take the 79 dollars (the worth of a one day ticket) and apply it to a multi-day. It would end up making Gabe's 3 day park hopper much more affordable.

I'm actually not surprised to hear that they don't want to ok trips on school vacation weeks. The airfare is so much more and they really try to keep the cost down as much as they can. When we asked to extend they said that it would depend on whether it would increase the cost of the airfare. As a result we were ok to extend to the 18th but not any longer as the airfare jumped dramatically after that time (probably peak holiday fare).


I'm sorry that they won't pay for Gabe. I know that hat is a such a big disappointment for you. I think they have to have rules/policies in order to keep things simple. Yes your situation is legitimate but other people might try to take advantage if they were more flexible and then they'd have to spend more time trying to verify each and every situation. They probably just want to streamline the process so policies are put in place and then, that's that. Bummer for you guys though. I'm pretty sure he will be able to stay at GKTW with you for free and will be able to eat there for a dollar a meal. That will help. Like you said it's the tickets, and the airfare. Don't forget that they have been known to be pretty generous as far as the expense check. If you guys don't typically eat big and expensive meals, you may find that you still have plenty of money for food in the park, including a couple of character meals (try breakfasts, they are MUCH less expensive than dinners).

woohoo on the going away party!!! We didn't get one and we were out of the springfield office too.


Pamela


Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

I think we're definitely going to do GAD/GAD! Thanks for the info!

yinyanggirls
01-16-2010, 08:20 PM
Kelly, I can't believe they aren't paying for Gabe. I know you don't want to push it, because you feel grateful for the gift to Ali, but that's not right! Is he placed with you in an informal arrangement? If he's not "technically" your foster child I guess I could see their reasoning. I'm sure there have been some to try and milk the system. I hope they reconsider when they realize that your willingness to pay OOP for him shows that there is no other option in your mind.

dmbfan
01-16-2010, 09:20 PM
I know we alreay talked tonight, just want you to know that I have faith that all will work out fine...you are going to have a wonderful MAW trip, with the whole family...love ya...:grouphug:

Applemomma
01-17-2010, 06:18 AM
Hi Kelly....just a quick word about the tickets...if your friend buys him a ticket with a Florida resident discount, Gabe won't be able to use it because they ask for the Florida id at first use I believe. Not a 100% sure on this but look into it. The other thing is that someone could get him a ticket for a lesser amount of days and then you can upgrade it once you're there; kind of like splitting the cost.

Take care and inspite of this bump in the road you're going to have a blast! I want to see a picture of Gabe on Dumbo!

kellyw8863
01-18-2010, 10:17 AM
Kelly, I can't believe they aren't paying for Gabe. I know you don't want to push it, because you feel grateful for the gift to Ali, but that's not right! Is he placed with you in an informal arrangement? If he's not "technically" your foster child I guess I could see their reasoning. I'm sure there have been some to try and milk the system. I hope they reconsider when they realize that your willingness to pay OOP for him shows that there is no other option in your mind.

Thanks, Melissa. No, it's a formal arrangement. I'm going to fax the paperwork to MAW, even though they said that they rarely change their minds after they've made a decision. I just want them to understand that there is no option for us to make it more legal than it already is. KWIM?

I know we alreay talked tonight, just want you to know that I have faith that all will work out fine...you are going to have a wonderful MAW trip, with the whole family...love ya...:grouphug:

Thanks, Christine, for being such a good friend.:goodvibes

Hi Kelly....just a quick word about the tickets...if your friend buys him a ticket with a Florida resident discount, Gabe won't be able to use it because they ask for the Florida id at first use I believe. Not a 100% sure on this but look into it. The other thing is that someone could get him a ticket for a lesser amount of days and then you can upgrade it once you're there; kind of like splitting the cost.

Take care and inspite of this bump in the road you're going to have a blast! I want to see a picture of Gabe on Dumbo!

Thanks for the info. We had already decided against doing it because in hindsight, it just felt dishonest. I think we're going to have him do GAD to defray part of it, and then we'll work the rest out.

kellyw8863
01-18-2010, 12:11 PM
I just want to cry right now. We just got our flight times and dates, and they have us traveling almost 10 hours on the first day in order to get from here to Orlando, which includes leaving from an airport over two hours away when we have two within an hour, and then changing planes in Nashville. Do they even understand what it is going to be like to get Ali and everything that goes with her off one plane, through an airport, and onto another one when she's already been traveling the better part of the day? I tried to explain that I don't understand when I see lots of options when I go directly to the Northwest website, but I don't feel like I'm getting anywhere. I'm really at the point where I'd just like to book and pay for our own flights, but she said they're not allowed to do that because this is supposed to be at no cost to the family. I'm so frustrated.:headache:

Thumper321
01-18-2010, 12:41 PM
I'm so frustrated.:headache:

:hug: I'm only at the beginning of our planning, but I understand a small part of the frustration. I hope that things get better and that after the actual trip, all of this won't matter anymore. Keep your head up! :hug:

Momofwishkid
01-18-2010, 01:18 PM
I just want to cry right now. We just got our flight times and dates, and they have us traveling almost 10 hours on the first day in order to get from here to Orlando, which includes leaving from an airport over two hours away when we have two within an hour, and then changing planes in Nashville. Do they even understand what it is going to be like to get Ali and everything that goes with her off one plane, through an airport, and onto another one when she's already been traveling the better part of the day? I tried to explain that I don't understand when I see lots of options when I go directly to the Northwest website, but I don't feel like I'm getting anywhere. I'm really at the point where I'd just like to book and pay for our own flights, but she said they're not allowed to do that because this is supposed to be at no cost to the family. I'm so frustrated.:headache:

:hug: I completley understand your frustration. They have us traveling for almost 12 hours. FLight leaves at 8:00 am and lands in Orlando at 8:30pm With a 2 hour layover in Dallas and plane change. It's very overwhelming and I dont understand it at all! I was very upset about it but I did get over it. Just try to think of all the good stuff that will happen on your trip and the time difference is in their also. :hug:

kellyw8863
01-18-2010, 03:38 PM
Miranda, thank you. I do hope that things are going smoothly with your own planning!

Jennifer, I feel for you. We have no time difference here, so we would have had to leave the house at about 4am and we probably would have settled in around 5pm at GKTW. Honestly, if that was our only option, we would not be able to do it. She just would not have been able to handle it with her fatigue issues. I am sorry that you have to spend that entire first day traveling. I can't imagine...

Well, after my initial bout of whining, we are booked to leave Manchester, NH at 11:55am on the Monday, April 19th, and return leaving Orlando at 5:10pm on Monday, April 26th!!!! I owe a huge, huge thank you to Jessica at the Western MA field office, as she has put up with all of my phone calls and has truly worked with me to make this happen. I can't say enough at this point, and I'm definitely going to be sending her a little something to show our gratitude. I can now officially say I can't wait for April 19th!

pnutallergymom
01-18-2010, 04:45 PM
You have dates!!! :cool1: You have times!!! :banana:

So happy for you!!!! Are you flying SW Kelly?

Ok!! Keep me posted!! So excited for you guys!!!! :thumbsup2

kellyw8863
01-18-2010, 05:56 PM
You have dates!!! :cool1: You have times!!! :banana:

So happy for you!!!! Are you flying SW Kelly?

Ok!! Keep me posted!! So excited for you guys!!!! :thumbsup2

Thanks, Shannon.:goodvibes Yes, we're flying SW - that will be a first for me!

Momofwishkid
01-18-2010, 05:57 PM
:cool1: I am so glad you were able to get better times. That is so great they were able to work with you. I have to admit Im quite jealous!

Thumper321
01-18-2010, 08:35 PM
Well, after my initial bout of whining, we are booked to leave Manchester, NH at 11:55am on the Monday, April 19th, and return leaving Orlando at 5:10pm on Monday, April 26th!!!! I owe a huge, huge thank you to Jessica at the Western MA field office, as she has put up with all of my phone calls and has truly worked with me to make this happen. I can't say enough at this point, and I'm definitely going to be sending her a little something to show our gratitude. I can now officially say I can't wait for April 19th!

Congratulations!!! I know you must be thrilled to have that part of it settled! I've got a question though. Ali made her wish on Jan. 9, right? I'm just curious because Aidan made his on Jan. 5 and we haven't heard a word other than to ask us whether we wanted to meet Tink or go to Disney. I'd really like to know what's happening. But then again, it's only 2 weeks tomorrow, so maybe I'm just rushing it.

dmbfan
01-18-2010, 08:46 PM
So glad you have your dates and times down. How did everything go with Gabe? Were they able to consider him living with you FULL time, even though he has been for a year now, or did you just POP for him?

:grouphug::grouphug::grouphug::grouphug::grouphug: :grouphug:

kayrosek
01-18-2010, 08:55 PM
I'm so glad things are working out better for you now. I hope they continue to and that they reconsider about Gabe.

yinyanggirls
01-18-2010, 11:32 PM
Hurray for dates! I already commented but wanted to hurray on your PTR. I know all of us DISers will be the most knowledgeable ones there, but it's still nice to know there will be people there we "know" and can bug with questions if needed. :laughing:

kellyw8863
01-19-2010, 06:22 PM
:cool1: I am so glad you were able to get better times. That is so great they were able to work with you. I have to admit Im quite jealous!

Thanks! Don't be jealous.:hug: Where are you traveling from?

I'm so glad things are working out better for you now. I hope they continue to and that they reconsider about Gabe.

Thanks!


So glad you have your dates and times down. How did everything go with Gabe? Were they able to consider him living with you FULL time, even though he has been for a year now, or did you just POP for him?

:grouphug::grouphug::grouphug::grouphug::grouphug: :grouphug:

No dice. We're just going to pay for him. My inlaws are going to help with it, and he's all signed up for GAD/GAD, so we'll make it work. Question for you - who did you contact to have your sister stay at GKTW with you? Did you go through MAW or did you call GKTW directly?

Hurray for dates! I already commented but wanted to hurray on your PTR. I know all of us DISers will be the most knowledgeable ones there, but it's still nice to know there will be people there we "know" and can bug with questions if needed. :laughing:

Thanks! I'm looking forward to crossing paths while we are down there. It's funny - I usually recognize the kids before I recognize the adults.:rotfl:

Congratulations!!! I know you must be thrilled to have that part of it settled! I've got a question though. Ali made her wish on Jan. 9, right? I'm just curious because Aidan made his on Jan. 5 and we haven't heard a word other than to ask us whether we wanted to meet Tink or go to Disney. I'd really like to know what's happening. But then again, it's only 2 weeks tomorrow, so maybe I'm just rushing it.

It is SUCH a relief! Yes, her wish granters came on the 9th, we faxed birth certificates on the 11th, and we heard from MAW on the 13th. I wouldn't think it would hurt to give a quick call. You could always say that you are just calling to make sure that they have everything they need in order to move forward. I hope that you hear something soon.:hug:

Okay, so I've been working on an itinerary, and this is what I have so far. Thoughts and feedback are welcome!

Monday, April 19th
Leave NH and arrive in Orlando at 3:15. We'll spend the rest of the day/evening relaxing at GKTW

Tuesday, April 20th
This is our big MK day since it's the only other "good" day to visit the park during which both Spectromagic and Wishes are happening. We're going to start with breakfast with Lilo and Stitch, so I'm thinking that we may have to go back to GKTW at some point so Ali can crash, but we might split up for that.

Wednesday, April 21st
Planning a slow day. Maybe do SW and then just kick around GKTW. Maybe visit DTD for a bit after dinner since there's not much at GKTW that night. Then again, maybe not. It will depend on the kids.

Thursday, April 22nd
Day split between DHS and EP. We have lunch reservations for Akershus, and then of course there's Christmas at GKTW!

Friday, April 23rd
US/IOA. We're thinking at this point, Ali is going to be pretty wiped. We're going to have to play it by ear, and I want her well-rested for when she goes to see the "real tree"!

Saturday, April 24th
AK! Nothing big planned for the day. Originally we had wanted to do breakfast at Tusker House, but where we're paying for Gabe OOP, we had to pare things down a bit. Not big deal! We do have ADRs at Rainforest Cafe depending on how the day goes and what we feel like by the end.

Sunday, April 25th
Check out of GKTW and move over to AKL! We have ADRs at Boma for that night, but otherwise, our plan is to do NOTHING!

Monday, April 26th
Fly out at 5:10pm.:sad2:

Momofwishkid
01-19-2010, 10:16 PM
Were coming from Wa state so pretty much as far away as you can get within the country :laughing:
Your plans look good and you are getting a night at AKL :cool1: It will be here before you know it!

maroo
01-19-2010, 10:46 PM
Your night at AKL is going to be AWESOME!!! :)

Your plans look great!

:)

pnutallergymom
01-20-2010, 10:50 AM
Your plans look great Kelly!! We'll see you at AKL!!! I am so happy that everything seems to be working out!!!

Wee Annie
01-20-2010, 12:28 PM
Kelly,

I am so excited that we are going to overlap time periods at GKTW! As you know, we are going from 4/17 - 4/23. We are planning to then extend our stay for several days, so we may bump into each other at WDW later on!

Your itinerary looks good. We are also planning on DHS for the Thursday (wanted a shorter day before the Christmas party), and we are planning on doing AK that Saturday, the 24th (after we move hotels). So we may bump into each other there.

I kind of chuckle to myself with all of us making these plans. I know we need to, but I catch myself thinking about how Elke's medical condition may make us change plans at a minute's notice, though (we too have to rush to the ER for a fever, etc). I know we're all in the same boat here, and have all had to learn to change plans last minute due to medical emergencies. So I do chuckle as I see all of us merrily planning away, knowing that we are oh-so-used to having to "roll with the punches"!

Have fun planning!
Ann

kellyw8863
01-20-2010, 04:47 PM
Were coming from Wa state so pretty much as far away as you can get within the country :laughing:
Your plans look good and you are getting a night at AKL :cool1: It will be here before you know it!

I had no idea you were traveling from so far away! Seriously, that is about as far away as it gets! I HATE flying, so I'm not sure I could do it if that was the case.:worship:

Your night at AKL is going to be AWESOME!!! :)

Your plans look great!

:)

Thanks, Maroo! I keep going back and forth regarding whether or not it is worth it to spend the money for just one night, though we did get a very good deal through expedia. It will be a total bummer if the weather is lousy and we can't enjoy the outdoors, but then again, it really fits with Ali's wish to be near the animals. I just keep going back and forth!

Your plans look great Kelly!! We'll see you at AKL!!! I am so happy that everything seems to be working out!!!

Do you know where at AKL you are going to be? We were able to upgrade to a pool view room for just $5 more, so I'm hoping that means we'll actually be close to the pool. I know that's where Ali will want to spend all of her time, so it will be nice to have it convenient. The girls thought it was pretty cool when we spent a night at the Holiday Inn in Wilmington, so they don't exactly have high standards.:rotfl2:

Kelly,

I am so excited that we are going to overlap time periods at GKTW! As you know, we are going from 4/17 - 4/23. We are planning to then extend our stay for several days, so we may bump into each other at WDW later on!

Your itinerary looks good. We are also planning on DHS for the Thursday (wanted a shorter day before the Christmas party), and we are planning on doing AK that Saturday, the 24th (after we move hotels). So we may bump into each other there.

I kind of chuckle to myself with all of us making these plans. I know we need to, but I catch myself thinking about how Elke's medical condition may make us change plans at a minute's notice, though (we too have to rush to the ER for a fever, etc). I know we're all in the same boat here, and have all had to learn to change plans last minute due to medical emergencies. So I do chuckle as I see all of us merrily planning away, knowing that we are oh-so-used to having to "roll with the punches"!

Have fun planning!
Ann

I am, too! Where are you guys staying when you extend your trip? We won't be doing any parks because we're only extending by one day, but we're looking forward to relaxing and doing nothing.

I hear you on the whole plan thing. My husband teases me, but it's just so nice to obsess over something that is not medical. At one point, I had an itinerary for February (just in case), April 17th - 23rd (just in case), and then April 19th - 26th. I spent all afternoon yesterday cancelling ADRs.:lmao: I'm trying not to think of the possibility that she could end up in an ER (or worse yet, admitted) down there, though it seems to happen every time we do take a vacation. This summer, we ended up in the ER every other Monday for three weeks in a row because all of our vacation plans fell at the end of the summer.:scared1:

Selfishly, I wish you were doing a PTR so I could follow along!

I'm not feeling that great tonight, and it seems that Ali isn't either. I have a headache that I can't get rid of, and I just feel blah. Ali looks terrible, but says that she feels fine. We've had such a good run with Ali (or at least it feels that way) where we've been able to avoid doctors and hospitals that I loathe the possibility she could be coming down with something. We go for antibiotic allergy testing next Thursday, so I'm praying that she doesn't get anything between now and then. If the testing shows she can take meds in the penicillin family, our lives will become so much easier and less stressful. So healthy vibes until then!

pnutallergymom
01-20-2010, 05:26 PM
Oh Kelly....I hope you and Ali aren't coming down with anything. That is the last thing you guys need right now.

I have no idea where we are staying at AKL...letting that one be a surprise!!! I am so glad your in-laws are going with you though. That will make it so much easier on you guys. We took my mother with us last Feb. and it was great. We even got to have "date night" when the kids went to bed!! It was so great to just get out and have a few drinks with the kids being safe and sound!!! Maybe you guys could do that on your night at AKL!! I hear the bar area is great there, or you could always get brave and go over to the BW area and go to Jelly Rolls!!

I was just thinking about Ali and the heat too, can you guys bolus Pedialyte through her tube throughout the day? You probably already do it, but just thought I'd mention it!! We have even added pedialyte to her overnight feeds as well when it is hot and that has helped too!!

Were you able to get all the ADR's you wanted?? I have been having great luck!! The hardest part is trying to decide!!!

kellyw8863
01-20-2010, 05:43 PM
Oh Kelly....I hope you and Ali aren't coming down with anything. That is the last thing you guys need right now.

I have no idea where we are staying at AKL...letting that one be a surprise!!! I am so glad your in-laws are going with you though. That will make it so much easier on you guys. We took my mother with us last Feb. and it was great. We even got to have "date night" when the kids went to bed!! It was so great to just get out and have a few drinks with the kids being safe and sound!!! Maybe you guys could do that on your night at AKL!! I hear the bar area is great there, or you could always get brave and go over to the BW area and go to Jelly Rolls!!

I was just thinking about Ali and the heat too, can you guys bolus Pedialyte through her tube throughout the day? You probably already do it, but just thought I'd mention it!! We have even added pedialyte to her overnight feeds as well when it is hot and that has helped too!!

Were you able to get all the ADR's you wanted?? I have been having great luck!! The hardest part is trying to decide!!!

It will make it so much easier. They are seasoned travelers, so I have no concerns there. I would be STOKED if we could get out for an hour or two on our last night there. We have very good friends in Jax, so I'm hoping that we can meet up with them at some point as well.

When Ali is under metabolic stress, she cannot handle boluses well at all. The first thing that shuts down for her is her GI tract. And because she can't protect her airway and has all of the antibiotic issues, we are not supposed to run fluids at night, though sometimes we do at very slow rates. We were told to add ice to the bag to bring down her core temperature when it is hot, which we've done with success, though it sometimes causes cramps for her. We have a cooling vest, but it doesn't work in the humidity. So I'm stressed about it. We do have an appointment with Dr. Korson for right before we go, so I'm sure we'll get some things in place then.

We are having good luck with the ADRs, and you're right - it is hard to decide! So far, we're just doing Akershus for lunch (Maya's request) and Lilo and Stitch for breakfast (Ali's request). We also have ADRs for Rainforest Cafe at AK in case we're looking for something and Boma for our night at AKL. Though I am wondering if we would be better off canceling RC for dinner and instead doing the character breakfast at Tusker House. We don't really have plans to see the "traditional" Disney characters, so that might be nice. What do you have brewing for the week?

kellyw8863
01-23-2010, 07:19 AM
For those of you who have already been, or, at the very least, are seasoned Disney travellers, did you find that your expense check was enough to cover regular counter-service meals with a couple of sit-down meals thrown in? I know we have too many character meal plans -

1900 Park Fare (dinner)
50s Prime Time Diner (lunch)
'Ohana's (breakfast)
Rainforest Cafe (dinner - but will likely cancel - I only made it because my in-laws do like to eat out)
Tusker House (breakfast)
Boma (dinner)

We do plan on drinking water in the parks so we're not paying for drinks, and we also plan on buying snacks at WalMart and bringing our own. Though, I know the reality of NOT indulging in a Dole Whip or Mickey ice cream is slim. We do have at least one day where we plan on eating every meal at GKTW. And, it's likely that my inlaws will pick up the tab on several meals while we're out and about, but I certainly don't want to expect it or to count on it.

So what do you think? The only ones that are "musts" are 1900 Park Fare, as Maya LOVES the princesses, and 'Ohana's because Ali keeps talking about Lilo and Stitch. And Boma makes sense because we'll be spending that night at AKL anyhow. Thoughts or tips?

Thanks so much!

Momofwishkid
01-23-2010, 11:30 AM
I cant help to much but from what I hear the expense check varies widely between chapters. Anyway from a couple hundred to over a thousand. I know how hard it is to plan when you just dont know. Some people have been able to call and just ask them about the amount.

maroo
01-23-2010, 01:31 PM
I second Jennifer's thoughts on the expense check question.

One thing you could do is plan to snack a lot (bring your own) at the parks and eat a big breakfast at GKTW and then pool your money into the buffets in the evenings. They will have a TON of food...so I think it is do-able.

And seeing characters will be relatively easy. They will be at GKTW two days a week (in the morning) and you won't have to wait in lines at the parks for them either...so if it is just about seeing the characters, I wouldn't worry about that so much.

Great places to see them all pretty quickly ... DHS has an indoor character place in the Animation Studio - with lots of characters. Epcot has a Character Spot with all of the big ones, too. AK - they are all at Camp Mickey. For the main characters.

:)

pnutallergymom
01-23-2010, 07:08 PM
Hi Kelly,

I would definitely call your chapter and try to ask them if they could give you a ballpark figure. I know that our chapter gives us an allowance for all 3 meals a day, and an allowance for tips.

That being said....the meals at CS places are HUGE. Bryan and I often split a meal. My two boys always share a kids meal, and Brigitte usually picks off that too...couple of FF and a bite of a chix nugget and she's done. You can also split meals at the TS meals, unless it is buffet. Another suggestion I have seen people do is to order a double cheeseburger and ask for an extra bun. Then you have enough to feed 2 for the price of 1.

Have you looked at the menus on www.allearsnet.com?? They will give you the prices so you can get a general idea about how much the prices are. If your looking for some more inexpensive ideas, look at Trails End. There buffet is one of the most inexpensive meals onsite, and they also have takeout. The food there is exactly the same as at HDDR (which is amazing). We have seen the show, but Bryan's only request this time around is he NEEDS the fried chix from HDDR. So we are going to go to Trails End (get their takeout) sit on the porch at Pioneer Hall and then take the kids over to Chip and Dales campfire. They show a movie and you can get smores ($). Its a fun, relaxing night. We try to take the boat over, as it just makes it a little more special for the kids.

Also another thing to think about, which we are doing a couple of days, is to try to schedule the latest lunch at places. Then you can just get a snack or something for dinner. Lunch is generally more inexpensive than dinner too.

Have you been over to the restaurant board yet? There are a few threads that show all the food porn!! You can get a good idea at how large the portions are.

kayrosek
01-23-2010, 10:53 PM
Well I don't know anything about the expense check although I would agree you should just call them, explain you are trying to make some plans and would be better able to do that if you had an idea how much the expense check would be. I do have a couple of thoughts from our recent trip. I brought snacks to the resort and carried them in to the park in my purse we snacked on nuts, raisins, crackers and such throughout the parks. We diden't eat three meals a day even though we had free dining. The others are right the portions are huge, but not just the meal portions alot of the snacks are giant too. One night we were too hungry for the little things in my purse but not ready for dinner. The five of us split three snacks in Epcot and still had some left over and two of my kids are big eaters. Another time my three kids split a CS chicken strip meal as a snack and DH and I split a baked chicken meal and we were all fine after words. I agree with Maroo. Eat one large meal at GKTW and one TS meal at the parks. Bring in a few snacks and if you guys are still hungry share some snacks or a couple meals from a CS place. Another thing if you can schedule the last lunch of the day at places instead of a dinner time it is cheaper. In that case you could eat a large breakfast in the morning and snack before and after a big late lunch. We did that a few times.

yinyanggirls
01-23-2010, 11:37 PM
Your itinerary looks great. You've kept the most important things in mind, especially the energy level. I have quite a few ADRs also and keep wondering if it's too many. We are big on restaurants. Whenever our salary allows, we eat at a sit-down restaurant twice a week. Having never been to WDW (I was a teen and only did Epcot) there are so many choices we want to try! One word of caution I read on other TRs is that the TS places do take time out of your day. If you are trying to get a lot of things done, it might be hard to have more than one TS per day, or any at all for that matter. But. if your kids are good in restaurants, it might be a nice break from the heat, the walking and the excitement of the park. These are fun dilemmas to have! ;)

dmbfan
01-25-2010, 06:18 PM
WOW, Kelly looks like things are coming along nice....:thumbsup2 Just think your trip will be here before you know it.

How AWESOME!!!:cool1::cool1:

cantwaittoseemickey
01-25-2010, 09:09 PM
I am loving your adr's. I cannot wait to read your trip report on how they all went:) I still don't know how much our expense check is but I didnt make any adr's. Im hoping we can get in to T Rex without them. ;)

pacrosby
01-25-2010, 10:05 PM
Hi Kelly,

Re: the expense check and whether or not it covered our meals..........in a word, for us, YES...........and then some. I couldn't believe the amount they allotted for lunch in the parks but I must admit we don't go for expensive food much. We did two character breakfasts (1900 Park Fare and Confisco Grille @ IOA) Rainforest Cafe in AK, T-Rexx in DTD and Sci-Fi Diner in HS plus assorted counter service restaurants for quick meals and snacks. I think we barely spent 2/3 of our food allottment on food. Do you know how much your getting?

I noticed you talked to Jessica in the MAW office. I did most of my talking with Jenna. Did you happen to mention your involvement here with the Disboards? I thought it would be such a great idea if they routinely passed this forum on to families going on WDW Wish Trips but when I called, I ended up having to talk to Jessica and she, sadly, was less than receptive. Maybe if you mentioned it too, how helpful it has been (maybe Shannon too), it might open her eyes a bit and make her reconsider (I also suggested maybe hooking a new family up with one who had already been to GKTW but that really went over like a lead balloon LOL).

I had lost track of your PTR there for awhile but that I've found it I dan get myself caught up. Looks like things are moving in the right direction. I'm glad to hear that their inability to pay for Gabe didn't derail you guys.


Pamela:santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

Thumper321
01-26-2010, 09:58 AM
We're like you guys. We have no idea of even a ball park range of the expense check. We've only schedule 3 ADR's right now. I would like to schedule 1 or 2 more, but I want to know what MAW is covering, and what we'll be covering. Your plans sound great! I keep changing our itinerary. I think I'm on my 4th draft, and we've only had official dates for 4 days. :rotfl:

kellyw8863
01-26-2010, 05:52 PM
Thanks, ladies, for all of your feedback regarding ADRs and eating in the parks! I truly appreciate it!:goodvibes

Hi Kelly,

Re: the expense check and whether or not it covered our meals..........in a word, for us, YES...........and then some. I couldn't believe the amount they allotted for lunch in the parks but I must admit we don't go for expensive food much. We did two character breakfasts (1900 Park Fare and Confisco Grille @ IOA) Rainforest Cafe in AK, T-Rexx in DTD and Sci-Fi Diner in HS plus assorted counter service restaurants for quick meals and snacks. I think we barely spent 2/3 of our food allottment on food. Do you know how much your getting?

I noticed you talked to Jessica in the MAW office. I did most of my talking with Jenna. Did you happen to mention your involvement here with the Disboards? I thought it would be such a great idea if they routinely passed this forum on to families going on WDW Wish Trips but when I called, I ended up having to talk to Jessica and she, sadly, was less than receptive. Maybe if you mentioned it too, how helpful it has been (maybe Shannon too), it might open her eyes a bit and make her reconsider (I also suggested maybe hooking a new family up with one who had already been to GKTW but that really went over like a lead balloon LOL).

I had lost track of your PTR there for awhile but that I've found it I dan get myself caught up. Looks like things are moving in the right direction. I'm glad to hear that their inability to pay for Gabe didn't derail you guys.


Pamela:santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

We don't know how much we're getting, and honestly, other than obsessing here, I'm okay with that. I have to admit, our experiences with J. have been a bit...lackluster. I feel guilty saying that because we, too, are so thankful to even have this opportunity, but I always find myself apologizing over and over whenever I talk with her. I will mention hooking people up with this board, though. I'll let you know what happens!

We're like you guys. We have no idea of even a ball park range of the expense check. We've only schedule 3 ADR's right now. I would like to schedule 1 or 2 more, but I want to know what MAW is covering, and what we'll be covering. Your plans sound great! I keep changing our itinerary. I think I'm on my 4th draft, and we've only had official dates for 4 days. :rotfl:

You know, I'm glad you checked in here, because for some reason, you're not on my subscribed list, and I thought for sure I had added you! I know we have more ADRs than we'll probably use, but I'm having such a hard time deciding.:rolleyes1

Well, hold on to your hats. Gabe has decided that he does not want to go on Ali's wish trip. So, we're not taking him. I would be lying if I said I'm not hurt/disappointed. I can't help but feel that he would rather stay home than spend QT with our family, even if it is at Disney. Intellectually, I know that isn't the case, but...it's just weird thinking he won't be with us.

On that note, does anyone have any experience with Southwest's cancellation policies? I'm hoping that they will hook us up if I explain the situation...

pacrosby
01-26-2010, 10:23 PM
HI Kelly,

I'm so disappointed to hear of your similar experiences with the office there. I had hoped that I had just caught her on a bad day. The other J was wonderful when I would call. I wish I had caught her on that day when I was passing on the info about the Dis. Such a lost opportunity.

So Gabe doesn't want to go now????? Did he tell you why? IDK, guess I'm just being nosey. I'm surprised.

As long as the arrangements are made through MAW I don't think you need to be the least bit concerned about flight changes/cancellations. But I guess I must have missed something.................why would you have to cancel????? I'll go back and reread.




Pamela :santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

yinyanggirls
01-26-2010, 11:51 PM
Oh, I'm sad he doesn't want to go! I guess I'm nosy too, but I can't help but wonder why? Is it just normal teenage angst? Or does he know that MAW isn't paying for him? ARGHHHH!! That would make me mad if that was the reason. Dang it!

Anyway, I wonder if they don't want people to research too much because they would have certain expectations? I would think one chapter does things the same for each family but who knows?

I also, don't want to ask about our expense check (haven't even been told we'll get one, so that would be awkward! :rolleyes:). It's not going to affect my planning because one way or another we'll pay for everything we do. If we don't have the money going in we'll use credit and pay it off later. I'm not normally an advocate of credit cards, but it IS a WISH trip. :cool1:

pacrosby
01-27-2010, 04:11 AM
Anyway, I wonder if they don't want people to research too much because they would have certain expectations? I would think one chapter does things the same for each family but who knows?



Hmmmm Melissa has a good point there. I was thinking of all the info the disboards can provide Wish trippers re: GKTW though and WDW in general, not MAW so much. I mean when you really think about it, is a Wish trip the kind of trip you want to take where you no nothing until you get there? I think they think (did you follow that) that the 'surprise' factor is part of the excitement but it would be nice if the families who wanted to be able to plan more had the ability to do so. You can't plan when you don't know what to expect. Heck, you don't even get the info about GKTW until a week or two before you go and even then, what you get is minimal. When I explained to J how the boards were essentially responsible for Matty's Gingerbread Man wish coming true (at Disney and at GKTW) she was less than enthused. It was really wierd.


Ok....sorry to go negative there. I repeat, I am so grateful for MAW. They did a wonderful thing for Matty and my family. I just think of what so many Wish trippers don't know until so late in the process (or in some cases will never know) and how much more fabulous their trips could be if they knew sooner (or knew at all).



Pamela

dmbfan
01-27-2010, 08:40 AM
Really? Gabe does not want to go? I am shocked too...but than again at 17, maybe being with his friends is more fun....I hope he does change his mind though, cause he would have a trip of a lifetime as well. However I just wish our oldest was honest with us when we paid OOP to take him on Jake's MAW trip, cause during the trip and after the trip he said he wished he never went, as his cell phone and his girlfriend was the most important thing to him than...and he just told my MIL he was kinda shocked we did not ask him to go back with us next month....:confused3 ...hmmmm, maybe it was because you already told us you wish you did not go, than why on earth would we take you again...:confused3...Ok getting off my teen soapbox here...:rotfl:

Hope tomorrow goes well by the way...I will be waiting to see how she does with the testing...:grouphug:

maroo
01-27-2010, 08:53 AM
I think the general feeling...from the folks I have talked to with MAW...is that they really don't like so much the idea of all of us getting together on here and comparing notes.

I am sure there are several reasons for this...but not the least of which is that each chapter...and even each trip specifically...is so different. Each chapter gives different things to the family and I am sure if someone was being snarky they could straight up ask why this family got that or that family got this.

And they don't want the families to really plan. At least that has been the impression I have been given...that they don't like for the family to "worry" about anything. And I can see that. But those of us that are planners...it makes me worry to not plan something as special as a wish trip.


As far as Southwest...

They will let you cancel and get a "credit" for future travel for ANYONE within a year.

I personally use Southwest all the time. If I had a credit, for example, I could use it for me, give it as a gift to someone or even sell it to someone for cash - all they need is the confirmation number and name on the ticket and they can use the "funds" leftover once you cancel.

PS: As hard as I am sure this is...don't be too worried about Gabe not wanting to go. I am sure there could be a bunch of reasons...but he obviously really loves you guys and what you are doing for him is going to change his life forever. Even if he doesn't fully get that now (and I hope he already does) - he will certainly get it later in his life. Hang in there. :)

kellyw8863
01-27-2010, 03:35 PM
HI Kelly,

I'm so disappointed to hear of your similar experiences with the office there. I had hoped that I had just caught her on a bad day. The other J was wonderful when I would call. I wish I had caught her on that day when I was passing on the info about the Dis. Such a lost opportunity.

So Gabe doesn't want to go now????? Did he tell you why? IDK, guess I'm just being nosey. I'm surprised.

As long as the arrangements are made through MAW I don't think you need to be the least bit concerned about flight changes/cancellations. But I guess I must have missed something.................why would you have to cancel????? I'll go back and reread.




Pamela :santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

You know, it's really fine. I hate not talking to people in person because I otherwise don't know how to read them. She has been helpful enough, I just can't help but feel like I'm always putting her out when I call. That's why we have email, right?!:rotfl:

As for Gabe, I'm not sure what brought about the change. We had a huge blow-up a couple of weeks ago over some really stupid stuff he pulled, so we have started this whole communication book thing where he writes in it every day and we respond. Over the weekend, he had written that he was reconsidering going to Disney because he's feeling like he needs a break from our family, and he's too nervous about turning 18 to have fun.:confused3

And then last night, he said that he definitely doesn't want to go, that he wants to go spend the week with his younger bio brother instead. So we told him that would be fine, but that if he thinks he doesn't want to go, then he needs to decide and can't base it on alternative plans in case those plans fall through. We told him it was too much of a financial commitment for him to waver back and forth, and he told us to cancel his ticket. And as far as we know, that's the end of the story.

And we don't all have to cancel, but MAW did make his flight arrangements using our credit card so that we'd all be on the same flight. Therefore, I'm assuming it's our responsibility to cancel his flight since he's not an official wish trip participant.

Oh, I'm sad he doesn't want to go! I guess I'm nosy too, but I can't help but wonder why? Is it just normal teenage angst? Or does he know that MAW isn't paying for him? ARGHHHH!! That would make me mad if that was the reason. Dang it!

Anyway, I wonder if they don't want people to research too much because they would have certain expectations? I would think one chapter does things the same for each family but who knows?

I also, don't want to ask about our expense check (haven't even been told we'll get one, so that would be awkward! :rolleyes:). It's not going to affect my planning because one way or another we'll pay for everything we do. If we don't have the money going in we'll use credit and pay it off later. I'm not normally an advocate of credit cards, but it IS a WISH trip. :cool1:

I'm sad, too! In all fairness to him, I guess we never really asked him if he wanted to go and instead just assumed that he did. I mean, who wouldn't?!

I suppose you're right that there are people who would have certain expectations. I admit that I am guilty of that after reading of other foster children being included as part of the wish family.:rolleyes1

I don't think the expense check will hugely affect our planning, either. Especially not now that we won't have another adult mouth to feed. I know everything will work out!

Really? Gabe does not want to go? I am shocked too...but than again at 17, maybe being with his friends is more fun....I hope he does change his mind though, cause he would have a trip of a lifetime as well. However I just wish our oldest was honest with us when we paid OOP to take him on Jake's MAW trip, cause during the trip and after the trip he said he wished he never went, as his cell phone and his girlfriend was the most important thing to him than...and he just told my MIL he was kinda shocked we did not ask him to go back with us next month....:confused3 ...hmmmm, maybe it was because you already told us you wish you did not go, than why on earth would we take you again...:confused3...Ok getting off my teen soapbox here...:rotfl:

Hope tomorrow goes well by the way...I will be waiting to see how she does with the testing...:grouphug:

It's funny, because we were JUST talking about this! You know, I'd be lying if I said there isn't a tiny part of me that is relieved.:rolleyes1 It will definitely be more relaxed not having to worry about a teenager in the mix, but I know Garth is really disappointed because his roller coaster buddy bowed out! And, it will certainly make it easier financially.

Thanks for the wishes on tomorrow. I'm nervous! How is Jake doing with the TPN? I hope that it's been an easy transition for you all...:grouphug:

I think the general feeling...from the folks I have talked to with MAW...is that they really don't like so much the idea of all of us getting together on here and comparing notes.

I am sure there are several reasons for this...but not the least of which is that each chapter...and even each trip specifically...is so different. Each chapter gives different things to the family and I am sure if someone was being snarky they could straight up ask why this family got that or that family got this.

And they don't want the families to really plan. At least that has been the impression I have been given...that they don't like for the family to "worry" about anything. And I can see that. But those of us that are planners...it makes me worry to not plan something as special as a wish trip.


As far as Southwest...

They will let you cancel and get a "credit" for future travel for ANYONE within a year.

I personally use Southwest all the time. If I had a credit, for example, I could use it for me, give it as a gift to someone or even sell it to someone for cash - all they need is the confirmation number and name on the ticket and they can use the "funds" leftover once you cancel.

PS: As hard as I am sure this is...don't be too worried about Gabe not wanting to go. I am sure there could be a bunch of reasons...but he obviously really loves you guys and what you are doing for him is going to change his life forever. Even if he doesn't fully get that now (and I hope he already does) - he will certainly get it later in his life. Hang in there. :)

Thanks, Maroo! It does make sense.:goodvibes I guess it's just hard for me to understand not planning something like this! So even though the ticket is in Gabe's name, I could use it for myself? If this is the case, I think I may need to plan a trip to Florida to visit some old friends!

And thanks for the encouragement about Gabe. In the past couple of weeks, we've all had to shift our goals a bit. It's taking some getting used to, but it will all be fine!

Ali has some pretty important allergy testing tomorrow, so if you all wouldn't mind keeping her (and us) in your thoughts, that would be great. I updated her CaringBridge page (in my siggie), but in a nutshell, she's being tested for allergies to penicillin, sulfa drugs, and cephalosporins. This is a HUGE deal, because right now, she is literally allergic to every class of antibiotics and has tentatively been diagnosed with something called multiple drug allergy syndrome. Because of the mito, we are supposed to treat all potential infections aggressively to prevent major regressions, but we can't because of the antibiotic issue. So hopefully tomorrow, we will find that she can tolerate something! I will update after we get home.

Momofwishkid
01-27-2010, 07:05 PM
I will be keeping Ali in my thoughts tommorrow and hope it comes out she can tolerate something. :hug: Are they doing something like the allergy scratch test??

kellyw8863
01-27-2010, 07:25 PM
Thanks, Jennifer. She's having 8 scratch tests and 12 intradermal injections. It's bound to be a very unpleasant morning.

yinyanggirls
01-27-2010, 09:31 PM
Oh man, what a test! I asked about testing Tessa for allergies (just dust, foods, etc) and her ped said that it could change as she grows or show things that aren't a problem for her. Sounded like it just wouldn't be worth it. Then he changed his mind and gave me a referral. Weird. Anyway, hoping that Ali has some good results. Will you know instantly or do they have to read them and compile a report?

jessica52877
01-27-2010, 11:45 PM
Just joining in. I enjoyed meeting your family and I am disappointed that Gabe isn't joining you but I really can see why he might not want to go for several reasons.

Your family is adorable! I must get to bed now. I got carried away reading all 11 pages!

Thumper321
01-28-2010, 06:34 AM
Good luck today, Ali and Kelly! Hope that everything goes as easy as possible and that you get the answers you need!

maroo
01-28-2010, 10:12 AM
Praying for you guys. For peace and comfort - regardless of the outcome today. I hope it is nothing and that you guys are doing great!

We are praying for you guys!

kellyw8863
01-28-2010, 01:34 PM
Thanks for the thoughts.:goodvibes It was a truly miserable morning with truly miserable results. She reacted to everything but ceftriaxone, and even that was questionable.:sad2:

And as if her morning wasn't stressful enough, we took her to the Rainforest Cafe for lunch as a "treat," and let's just say she wasn't a fan. I guess I'll be cancelling those ressies for RC at AK.:rotfl:

pnutallergymom
01-28-2010, 02:03 PM
Awww. Kelly, I am so sorry you guys didn't have a better morning.
Wish things were different. Sorry. :sad2:

What were there thoughts about how to treat future bugs? And what about the ceftriaxone? Can you use it or not?

Momofwishkid
01-28-2010, 02:10 PM
Oh Kelly Im so sorry the results werent good. How did Ali tolerate the tests? So may I ask what you do from here? Will they just go ahead and try the questionable med if she needs something or do they have a defferent plan in place? :hug:
She dosent like RFC :scared1: Was it the noise? Im a little afraid it will be to noisey for Gavin.

kellyw8863
01-28-2010, 02:13 PM
Awww. Kelly, I am so sorry you guys didn't have a better morning.
Wish things were different. Sorry. :sad2:

What were there thoughts about how to treat future bugs? And what about the ceftriaxone? Can you use it or not?

No thoughts. We didn't see her allergist today, as he wasn't in clinic. We just got a long list of things that she cannot take and were told that he will be contacting us before the end of the week to discuss what we should do in the event that she does need an antibiotic. I do know that this means there is nothing she can take on an outpatient basis.

As for the ceftriaxone, the nurse said it would have to be administered IV, that it can be given IM, but it's usually paired with something else when it's done that way. She couldn't tell whether it was a positive result because Ali's skin is so sensitive anyway. It was "borderline," meaning she could have a reaction if/when we give it to her.:sad2:

kellyw8863
01-28-2010, 02:17 PM
Oh Kelly Im so sorry the results werent good. How did Ali tolerate the tests? So may I ask what you do from here? Will they just go ahead and try the questionable med if she needs something or do they have a defferent plan in place? :hug:
She dosent like RFC :scared1: Was it the noise? Im a little afraid it will be to noisey for Gavin.

She HATED the noise. Every time an animal would screech, she would jump ten feet and start crying. She finally resorted to keeping her ears covered while Garth fed her. We thought she'd love it.:scared1:

As for the tests, she didn't tolerate them well at all. She had 8 on her back and another 9 in her upper arm. The ones on her back were the scratch tests, so those weren't bad, but the ones in her arm were all intradermal and it took three of us to hold her down. I'm not sure what we do from here. I know in the past, they've talked about doing rapid desensitization whenever she needs abx, which is fine. It's just with the mito, suspected infections need to be treated aggressively, and we can't do that now.

Thanks for the thoughts.:goodvibes

pnutallergymom
01-28-2010, 02:26 PM
As for the ceftriaxone, the nurse said it would have to be administered IV, that it can be given IM, but it's usually paired with something else when it's done that way. She couldn't tell whether it was a positive result because Ali's skin is so sensitive anyway. It was "borderline," meaning she could have a reaction if/when we give it to her.:sad2:

I have seen Cef given IM a million times without it being paired with anything. What was she talking about?? We used to do it at my Pedi office ALL the time. Now, whether or not she will react to it, obviously is an entirely different issue.....but, I just wanted to let you know that it absolutely can be given alone. Something just to question the MD with when you talk to him.

Good Luck Kelly! Hang in there!!

Applemomma
01-28-2010, 02:31 PM
Thanks for the thoughts.:goodvibes It was a truly miserable morning with truly miserable results. She reacted to everything but ceftriaxone, and even that was questionable.:sad2:

And as if her morning wasn't stressful enough, we took her to the Rainforest Cafe for lunch as a "treat," and let's just say she wasn't a fan. I guess I'll be cancelling those ressies for RC at AK.:rotfl:

:grouphug::grouphug: Wish things had gone better for you guys today ....I'll keep praying!

maroo
01-28-2010, 03:01 PM
Thanks for the thoughts.:goodvibes It was a truly miserable morning with truly miserable results. She reacted to everything but ceftriaxone, and even that was questionable.:sad2:

And as if her morning wasn't stressful enough, we took her to the Rainforest Cafe for lunch as a "treat," and let's just say she wasn't a fan. I guess I'll be cancelling those ressies for RC at AK.:rotfl:

I am so, so sorry.

I am not sure how I missed this...I saw it on your CB first.

:hug::hug::hug::hug::hug::hug::hug::hug::hug::hug: :hug:

pacrosby
01-28-2010, 09:27 PM
sorry to hear of the unfortunate results:hug:

and I'm sorry to hear that she didn't enjoy Rainforest. Not to sound insensitive but I must admit that I actually giggled at the thought of your poor girl jumping everytime the restaurant erupted. There's alot of erupting in there and therefore there must have been alot of jumping!!!!! Just so you know.........I'd suggest you keep her far away from T-rex in DTD too:rotfl:




Pamela:santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

Thumper321
01-28-2010, 10:39 PM
:hug::grouphug::hug::grouphug::hug::grouphug: I'm so sorry that you guys had a rough day. I wish you had gotten better news. I hope that the doctor can give you a game plan and put your mind at ease a little bit.

yinyanggirls
01-28-2010, 11:36 PM
What a day! I'm so sorry that the results were not what she needed! I hope the doc can get creative and figure out another way to treat her when necessary.
And how sad that she was not enjoying RC. I bet after her rough morning, all of her sense were on protective overload. Poor girl, and mom. :hug:

dmbfan
01-29-2010, 08:47 AM
I was just reading your CB site this am....:sad1: Sorry it did not turn out the way you had hoped. I do not know anything in this area, so please forgive me for not be able to offer any advice.:hug:

I pray she contiunes to stay infection free for a while....my guess is otherwise you have to go to the hospital...:sad2: Just a thought, what did they use for antibotics in the past when she had infections?

Call me if you wanna chat..:grouphug:

kellyw8863
01-29-2010, 12:40 PM
I have seen Cef given IM a million times without it being paired with anything. What was she talking about?? We used to do it at my Pedi office ALL the time. Now, whether or not she will react to it, obviously is an entirely different issue.....but, I just wanted to let you know that it absolutely can be given alone. Something just to question the MD with when you talk to him.

Good Luck Kelly! Hang in there!!

Thanks, Shannon. I'll definitely ask about it. After doing some reading, my guess is that she said that because after doing some reading, it seems that ceftriaxone doesn't offer great coverage. I know both times that Maya had it for kidney infections, she was on something else at the same time. We haven't heard from Dr. L. yet, so I'm not sure what the plan is.

I hope that Brig is feeling better soon - it seems I read she has RSV? Poor baby.:grouphug:

:grouphug::grouphug: Wish things had gone better for you guys today ....I'll keep praying!

Thank you for the thoughts and prayers - they mean a lot!

I am so, so sorry.

I am not sure how I missed this...I saw it on your CB first.

:hug::hug::hug::hug::hug::hug:

Thanks, Maroo, and thanks for leaving a message in her guestbook.:goodvibes

:hug::grouphug::hug::grouphug::hug: I'm so sorry that you guys had a rough day. I wish you had gotten better news. I hope that the doctor can give you a game plan and put your mind at ease a little bit.

Unfortunately, I know the results are grim because they confirm what we already assumed to be true. But, a plan would be good because that is one thing that's lacking. Thanks for the thoughts!

What a day! I'm so sorry that the results were not what she needed! I hope the doc can get creative and figure out another way to treat her when necessary.
And how sad that she was not enjoying RC. I bet after her rough morning, all of her sense were on protective overload. Poor girl, and mom. :hug:

It was totally our fault. She was still on edge from the morning and RFC just put her over the edge. We did have a good laugh about it last night, though. Not that it was funny, funny, but you know what I mean. Thanks for the thoughts!

I was just reading your CB site this am....:sad1: Sorry it did not turn out the way you had hoped. I do not know anything in this area, so please forgive me for not be able to offer any advice.:hug:

I pray she contiunes to stay infection free for a while....my guess is otherwise you have to go to the hospital...:sad2: Just a thought, what did they use for antibotics in the past when she had infections?

Call me if you wanna chat..:grouphug:

Thanks, Christine.:goodvibes In the past, we still had antibiotics to work with, but then we'd lose them 1/2 way through the course of treatment. So last spring, we lost Zithromax. Then with this past sinus infection, we started with Bactrim in the ER but she broke out in hives. Then we tried levofloxacin, and again, she broke out in hives. The last one she tried was cefixime, and she broke out in hives. That was the end of the line with antibiotics, but at that point, she had enough days of ones that she reacted to before reacting that the infection cleared. But, it left us with nothing. Does that make sense?

I'll try to give you a call in the next week or so to make plans to get together! Have fun celebrating Jake's birthday!

sorry to hear of the unfortunate results:hug:

and I'm sorry to hear that she didn't enjoy Rainforest. Not to sound insensitive but I must admit that I actually giggled at the thought of your poor girl jumping everytime the restaurant erupted. There's alot of erupting in there and therefore there must have been alot of jumping!!!!! Just so you know.........I'd suggest you keep her far away from T-rex in DTD too:rotfl:




Pamela:santa:
Matty's Wish Trip PTR http://www.disboards.com/showthread.php?t=2325607
Matty's Wish Trip TR "Mom, Dad, 3 Kids, and a Gingerbread Boy" http://www.disboards.com/showthread.php?t=2356739

Oh, believe me, we had a good laugh about it last night! Though now she's saying that she wants to go back as long as her sister Maya is with her. So we'll see!

So thanks again, ladies, for all the thoughts, prayers, hugs, and words of encouragement.:goodvibes She's having a rough day today and is all broken out in hives. I went to work this morning but came home early to be with her since she's so miserable. She's also running a temp, but I'm pretty sure it's just a metabolic fever. Hopefully, it's not something else. We'll see!

dmbfan
01-29-2010, 02:35 PM
Oh no, sorry to hear Ali has a temp...how high is it? Hannah has been running fevers on and off this last week, along with a bad sinus thing going on. She dose seem better today, fever wise.

Hope Ali feels better soon...:hug:

kellyw8863
01-30-2010, 07:58 AM
Oh no, sorry to hear Ali has a temp...how high is it? Hannah has been running fevers on and off this last week, along with a bad sinus thing going on. She dose seem better today, fever wise.

Hope Ali feels better soon...:hug:

Thanks! She's doing much better today, so I'm sure it was just a reaction to everything from the day before.:goodvibes

My sweet girl before she really knew what was coming...

http://i93.photobucket.com/albums/l71/kellyw8863/AliAllergyTesting.jpg

dmbfan
01-30-2010, 08:01 AM
Ohh poor Ali...she still looks so sweet though:cloud9:...glad she is feeling better today..:dance3:

Momofwishkid
01-30-2010, 11:11 AM
What a cutie! Glad she's feeling better today.

pnutallergymom
01-30-2010, 07:17 PM
Glad she is feeling better. Cute pic!! Were those PJ's from Children's Place I spied her wearing?? If so, Brigge has the same ones...and LOVES them!!

dmbfan
01-31-2010, 07:25 PM
Ohh Kelly....I hope your watching the grammy's tonight....DMB is nominated in two categories tonight in the grammys...:cool1::cool1::cool1::cool1::worship::wo rship::worship::worship::worship::woohoo::yay::yay ::yay::cheer2::cheer2::cheer2: Are you as excitied as I am...:thumbsup2

kellyw8863
01-31-2010, 07:59 PM
What a cutie! Glad she's feeling better today.

Thank you.:goodvibes

Glad she is feeling better. Cute pic!! Were those PJ's from Children's Place I spied her wearing?? If so, Brigge has the same ones...and LOVES them!!

Those are CP pajamas! We do Christmas PJs every Christmas Eve. I was such a procrastinator this year that I waited until Christmas Eve morning, and then was so irritated that I couldn't find red PJs.:rolleyes1 But in hindsight, I LOVE these PJs. They're so soft and cute!

Ohh Kelly....I hope your watching the grammy's tonight....DMB is nominated in two categories tonight in the grammys...:cool1::cool1::cool1::cool1::worship::wo rship::worship::worship::worship::woohoo::yay::yay ::yay::cheer2::cheer2::cheer2: Are you as excitied as I am...:thumbsup2

Yup! How much did you love him and Neil Young in their Hope for Haiti performance? I'm loving me some Black Eyed Peas right now, but what the heck are they wearing?!

kellyw8863
01-31-2010, 09:50 PM
Ohh Kelly....I hope your watching the grammy's tonight....DMB is nominated in two categories tonight in the grammys...:cool1::cool1::cool1::cool1::worship::wo rship::worship::worship::worship::woohoo::yay::yay ::yay::cheer2::cheer2::cheer2: Are you as excitied as I am...:thumbsup2

He rocks.:cool1::cool1: Going to bed!

dmbfan
02-02-2010, 07:55 AM
He rocks.:cool1::cool1: Going to bed!

Everytime I see Dave, I melt and feel as though I have gone to heaven...:worship: He looked SOOOO good...:love:

kellyw8863
02-03-2010, 03:07 PM
So as part of Maya's 100th day of school celebration, she was asked to draw a picture of herself in 100 years. Can you guess what she drew? A picture of herself horizontal in a hole in the ground with Xs for eye and someone standing above the hole shoveling in dirt. She said she explained to her teacher that she's not going to look like anything in a 100 years because she's going to be dead.:rotfl2::rotfl2::rotfl2: That girl cracks me up.

Not much planning going on here at the moment. Word got out that Gabe was bagging on the trip, so the kids at school started in on him that he's crazy not to go. So we asked him if he had a change of heart, and he said no. I don't get it. But at least we know we made the right choice to cancel his plane ticket. I was afraid that we'd cancel it and then he'd change his mind. Oh well, I guess.:confused3

Momofwishkid
02-03-2010, 03:26 PM
That is so funny :rotfl: She's a smart girl. Im still sorry Gabe chose not to go but glad you made the right decision to cancel the ticket.

dmbfan
02-03-2010, 09:17 PM
Too cute...:rotfl: As for Gabe, I think you made the right choice...teens will be teens...what can you do right.

kellyw8863
02-08-2010, 11:02 AM
It's been one heck of a week here at Chez Weiderman. On Wednesday, our nanny/nurse quit effective immediately, on Thursday I came down with what I thought was the flu but ended up being strep throat, on Friday, G. ran away forcing us to call the police, and on Sunday, we learned that he plans on taking off from here the day that he turns 18. To say that we are stressed would be a gross understatement.:rotfl2:

Let's start with the nanny/nurse. We hired her in August with the understanding that she would be able to commit to giving us the academic year. Well, she must have "celebrated" her new employment because a month later, she came to us telling us that she was pregnant and due in June. Considering that she was considered high risk due to pre-term delivery of her last son, she was hoping to make it to the end of April. Fast forward to the past week. She decided that she's been feeling "funny" a lot and had her care transferred to a high risk OB. And that, folks, was the end of our professional relationship. I do understand that she needs to do what she needs to do in order to have a healthy pregnancy and child, but at the same time, it's not exactly easy to put a kid like Ali into a daycare situation.

Then on Thursday, I woke up with a scratchy sore throat. By 10 in the morning, I had spiked a fever and was feeling worse than I have ever felt before. I came home from work and crashed. I woke up Friday feeling even worse than I did on Thursday, called the doctor, but no one called me back. Woke up Saturday morning and committed to go to the ER if the doctor couldn't fit me in. She took one look in my throat and said, "Why didn't you call sooner?":headache: Strep test was hugely positive and I started antibiotics Saturday afternoon. I didn't go to work again today because strep as an adult is infinitely more miserable than I remember it being as a kid. I haven't eaten nor slept since Wednesday night. This stinks.

And then on Friday, G. ran away because he likes neither our rules nor our expectations. I imagine all teenagers would like to run away at some point because they don't like their parents rules/expectations, the difference here being we do not have a history with him so we really don't have a whole lot of influence in the grand scheme of things. He has decided that he does not want to stay here anymore because we simply ask to much of him. Apparently asking him to call when he is going to be late, to speak to us with respect, and to do the garbage on Mondays is too much. Oh, I forgot completing homework on time. That's another killer. He will be leaving here of his own accord on his 18th birthday, meaning we will say our goodbyes the day before we leave for Disney.

So that's pretty much our week in a nutshell. But we do have some things to look forward to like February vacation!:dance3: It's not even like we're doing anything exciting. Monday and Tuesday, Ali will be admitted to Children's for further allergy testing in an attempt to see just how allergic is allergic. That will be fun. Not. But then on Thursday, we're going to Disney Celebrations on Ice through the Starlight Foundation. That should be a blast!:dance3::dance3: And then on Friday, we have an advocacy day at the State House in an attempt to get a house bill passed in support of mitochondrial medicine research. We will be meeting with Senators Kerry and Brown and with Representative Olver from our home district.

As for Disney planning, Pamela (pacrosby) is throwing me for a loop! I was all set to kind of back off with SW and US, but after reading her trip report and looking at all the pictures, I'm pretty gung ho about both! We need to schedule in time to spend at GKTW, so I'm still in the process of trying to figure that out, but it's all good!

Thumper321
02-08-2010, 12:10 PM
I'm so sorry that you've had such a tough week! :hug: Have you been able to find a temporary replacement for Ali's nurse/nanny? Are you feeling better now? As far as Gabe, I think that you are right. This is typical teenager stuff, but you don't have the history with him that it would take to tip the scales a little bit. I'm really sorry that he's making things tough for your family though. I know that you guys love him, and it's got to be tough planning to say goodbye right before your vacation. This seems to explain though why he refused to go on the trip. I just feel bad that you've had such a hard week. I hope that things get better and you get a little bit of a break for a while. Hang in there!

And as for the itinerary, I've decided it is never truly finalized. Mine seems to change constantly. :rotfl: But we're pretty set on doing both SeaWorld and US/IOA. Actually, if my contact with US so far is indicative of anything, there is no way that I would consider not going to US! Keep us posted on what you decide.

Momofwishkid
02-08-2010, 02:50 PM
Kelly Im so sorry you are having such a tough week. :hug: I hope your feeling better from the strep and things work out with Gabe.
As for itenerary, I thinkit definetley changes constantly but In my opinion SW and US are a definete DO. It's so hard to fit it all in but Im sure it will be worth it.

pacrosby
02-08-2010, 09:39 PM
Kelly! YIKES!! Here's a hug from the Crosby family :grouphug:


The nurse situation..............what can you do huh? Can't be mad at her but the aggravation is certainly understandable. Obviously I don't understand anything about the specificity of Ali's needs but, are there any short-term nursing options available through home health agencies? At least until you find a more permenant solution. I do so understand your not being all that thrilled about a day care placement.

And Gabe??!! Did that throw you for a loop or have things been cooking for awhile? Sure teenagers don't always 'like' rules and expectations but that's quite an extreme reaction. Perhaps an inkling of where he 'came' from and what he was used to. IDK.....what can I say? Nothing really :hug:

And sick as well ???? A girl can't catch a break huh?


Glad to hear you have some fun to look forward anyway. We are thinking of going to Disney on Ice over vacation as well. Hopefully you'll be back to 100% by then.

Sorry to hear I threw such a monkey wrench into your planning ;)

yinyanggirls
02-10-2010, 01:18 AM
Sad about Gabe, hopeful about the additional tests, frustrated with Nanny, and totally commiserate on the strep. I've had tonsillitis twice in the past year and it totally stank!!! I hope you're feeling well soon can get life back to some semblance of normal!

Wee Annie
02-10-2010, 07:31 AM
Kelly,

sorry to hear things have been so challenging recently. I hope you are feeling better, and will be thinking of Ali next week as her tests are run. Elke is having an impt procedure on Monday too, so I will definitely be thinking of you all.

And I agree about your issues with planning! I was going to virtually write off IOA/US and SW, but now think that that would be a mistake. I may still write off SW, in the quest to keep our schedule less hectic and with more down time at GKTW, but who knows??? I will begin truly planning it out next week. Can't wait to share plans!

Ann

kayrosek
02-10-2010, 07:54 AM
So sorry things have been so difficult latley.:hug: Hope things get better soon.

kellyw8863
02-11-2010, 01:39 PM
Hi ladies. Gabe is gone. We are heartbroken.:sad1::sad1::sad1:

Momofwishkid
02-11-2010, 02:01 PM
Kelly, I dont even know what to say but wantd to offer you a big :hug:.

pnutallergymom
02-11-2010, 02:36 PM
Oh Kelly, I am so sorry. :hug:

Wee Annie
02-11-2010, 02:48 PM
Kelly,

I am so sorry to hear that. I wish had something more helpful to say. But I am truly sorry.

Ann

erika412
02-11-2010, 07:34 PM
I'm sorry.

Thumper321
02-11-2010, 07:38 PM
I wish I knew what to say, but I don't so I'll just give you hugs. :hug::hug::hug::hug::hug: I'm so sorry. :sad1:

yinyanggirls
02-11-2010, 09:16 PM
From what you've shared with us here, I have no doubt that the time he spent with you will be invaluable to him at some point in his life. That doesn't make losing him any easier, but maybe at some point, he will be able to come "back". So sorry you guys' hearts are breaking. :grouphug:

dmbfan
02-11-2010, 10:05 PM
Hi ladies. Gabe is gone. We are heartbroken.:sad1::sad1::sad1:

Kelly what happened??? I am so sorry...I know how much you and Garth put into Gabe, making sure he had the best chance in life...do NOT ever doubt yourself....he must not have realized how lucky he was.

I am here if you need to talk...:grouphug:

kayrosek
02-12-2010, 09:55 PM
I'm so sorry to hear that. I have to echo Melissa's thoughts. I have no doubt that the time he spent withyou will be invaluble to him in some way in the future. You did an amazing thing by taking him in. I'm so sorry you guys are hurting right now, thinking of you and sending lots of :hug::hug::hug: your way.

pipersmom
02-13-2010, 11:57 AM
Kelly, I just got caught up and I'm so sorry to hear about everything you've been going through between sickness and the struggles with Gabe. I agree with Melissa also, and think that at some point he will realize what a mistake he made by choosing not to be a part of your wonderful family. :hug: I know you're hurting, hoping that all your planning will help take your mind off things a bit. :hug:

Piper says to tell you all a big "hello"!

Momofwishkid
02-13-2010, 11:05 PM
Thinking of you guys today. Hope everyone is Ok. :hug:

kellyw8863
02-14-2010, 07:25 AM
Thank you, to each and every one of you for all of the positive thoughts, prayers, and hugs. It's been a difficult couple of days, but we're doing okay. Intellectually, we know we made the right decision. He wasn't making any progress here and actually became his own worse enemy. We kept asking for help and DCFS wasn't giving it. This is almost a perfect example of how the system fails older kids. But, he's in a great place right now, a woman who solely works with teenage boys and who knows the system inside and out. Emotionally, it doesn't make it any easier. We're hopeful that even though he isn't living here, that we can continue to be "family" to him. The girls and I are getting together a care package for him that we'll mail out this week. It's important to me that he knows we still love him and care for him.

And in the midst of all this, Ali will be admitted to Children's tomorrow for more allergy testing. Since she failed the skin testing with the exception of ceftriaxone, the next step is to do what's called a graded challenge. Her allergist doesn't trust the negative skin results because the test is imperfect, so he wants this done before he will declare cef a safe drug for her. It's not going to be fun by any means, and I'm terrified she will have a severe reaction to it. She does react to other third generation cephalosporins and had a significant reaction to penicillins (also beta-lactam), so it's not outside the realm of possibility. I guess the upside of all this is that I will have plenty of time to get caught up with everyone's PTRs here.:cool1:

So thanks again for the thoughts. I really do value all the support that I receive here.:grouphug:

pipersmom
02-14-2010, 08:03 AM
Morning, Kelly. I'll be keeping you and Ali in my thoughts tomorrow in hopes that the challenge goes off without a hitch. I know how stressful it is to be so limited in antibiotic choices. :hug: I'm glad Gabe is in a good place, at least you don't have to worry about that. Keep us updated on the challenge. Are they just talking an overnight admission?

Momofwishkid
02-14-2010, 10:30 AM
Im so glad to hear Gabe is in a good place. I will be thinking af Ali tomorrow and hoping for no major reactions. Happy Valentine's to you all! :hug:

kayrosek
02-14-2010, 12:33 PM
Happy Valentines Day Kelly. You'll be in my thoughts and prayers tomorrow for sure. Hope everything goes as well as possible with the allergy testing.

yinyanggirls
02-14-2010, 02:18 PM
Sounds like a good placement for Gabe. When we were fostering we were called about a sibling group and guilted into taking all three of them thinking it was going to be short term while they got grandma approved. They said they were going to split them up because they couldn't find anyone to take all three. I had Phoebe, plus a 4 month old, 3 yr old, and 4 yr old. I couldn't say no and I couldn't ask them to separate the sibs, so I took all three. I was a mess. Phoebe was freaking out and wanting all my attention, the 3 yr old was getting hurt because he tried to do things on his own that he wasn't able to do, and the 4 yr old wanted to be his mother because that's what she was used to. I would hide in the closet and cry because I knew I couldn't handle them but didn't want to send them away. They were sweethearts all of of them and didn't deserve yet another disruption in their lives. I finally called the CW hoping that they would say grandma was almost done, but no, she said it would be "a while". I asked her to start looking for a placement that could take all three and she apologized that she didn't read our report that Phoebe was severely delayed and had special needs. Thankfully they found a home the next day that took all three, had experience but no other kids at the moment. I felt so guilty, but I do think that it was fate, God, whatever, that used me to keep them together just for that week. I doubt they will remember me, being such a short time and so young, but I feel good knowing that I helped them get somewhere better. That long story was to say, your time with Gabe was not a waste. Hopefully, this new placement will help him in many ways, and they will appreciate you for the love you still offer him. You guys are awesome for accepting the challenge and giving it your all.

Mtopher4
02-15-2010, 10:17 PM
Hi Kelly and Ali.. I was reading your PTR...

(((((Hugs))))))
Lisa and Ashley age 5 soon to be Wish kid :-)

pnutallergymom
02-16-2010, 02:05 PM
Hey Kelly,

Just stopping in to send a big hug :hug:....hoping the allergy testing is going well.

kellyw8863
02-17-2010, 07:14 AM
Thinking of you guys today. Hope everyone is Ok. :hug:

Im so glad to hear Gabe is in a good place. I will be thinking af Ali tomorrow and hoping for no major reactions. Happy Valentine's to you all! :hug:

Thank you for thinking of us and happy (belated) Valentine's Day to you, too!:goodvibes We're actually doing okay. We do feel in our heart of hearts that we made the best decision that we could, though we continue to be very frustrated with DCFS. We have heard nothing as to how he is doing, but we pray that he also sees this as his opportunity to get his act together.

Morning, Kelly. I'll be keeping you and Ali in my thoughts tomorrow in hopes that the challenge goes off without a hitch. I know how stressful it is to be so limited in antibiotic choices. :hug: I'm glad Gabe is in a good place, at least you don't have to worry about that. Keep us updated on the challenge. Are they just talking an overnight admission?

Thank you for the thoughts.:goodvibes I never would have thought that the whole antibiotic "issue" would be our biggest concern, especially in light of everything else that she has going on. The allergy attending when she was in for testing raised his eyebrows more than a few times.:rotfl:

Happy Valentines Day Kelly. You'll be in my thoughts and prayers tomorrow for sure. Hope everything goes as well as possible with the allergy testing.

Thank you! Happy Valentine's Day to you, too!:goodvibes

Sounds like a good placement for Gabe. When we were fostering we were called about a sibling group and guilted into taking all three of them thinking it was going to be short term while they got grandma approved. They said they were going to split them up because they couldn't find anyone to take all three. I had Phoebe, plus a 4 month old, 3 yr old, and 4 yr old. I couldn't say no and I couldn't ask them to separate the sibs, so I took all three. I was a mess. Phoebe was freaking out and wanting all my attention, the 3 yr old was getting hurt because he tried to do things on his own that he wasn't able to do, and the 4 yr old wanted to be his mother because that's what she was used to. I would hide in the closet and cry because I knew I couldn't handle them but didn't want to send them away. They were sweethearts all of of them and didn't deserve yet another disruption in their lives. I finally called the CW hoping that they would say grandma was almost done, but no, she said it would be "a while". I asked her to start looking for a placement that could take all three and she apologized that she didn't read our report that Phoebe was severely delayed and had special needs. Thankfully they found a home the next day that took all three, had experience but no other kids at the moment. I felt so guilty, but I do think that it was fate, God, whatever, that used me to keep them together just for that week. I doubt they will remember me, being such a short time and so young, but I feel good knowing that I helped them get somewhere better. That long story was to say, your time with Gabe was not a waste. Hopefully, this new placement will help him in many ways, and they will appreciate you for the love you still offer him. You guys are awesome for accepting the challenge and giving it your all.

I didn't realize that you did fostering, too, though I may have known that and just forgot in my old age.:rolleyes1 I can't believe the guilt and belittlement that some social workers use. You would think that they would be more concerned with placing children in the right homes than simply placing them, period. I'm sorry that you had a difficult experience, too, but it's funny how things work out, isn't it? Thank you for sharing your story.:grouphug:

Hi Kelly and Ali.. I was reading your PTR...

(((((Hugs))))))
Lisa and Ashley age 5 soon to be Wish kid :-)

Hi there, and welcome!:cheer2: I need to go check out your PTR!

Hey Kelly,

Just stopping in to send a big hug :hug:....hoping the allergy testing is going well.

Hi Shannon - Thanks for checking in on us! I hope that you guys are doing well.

Thanks, everyone, for checking in on us and for all the thoughts, prayers, and hugs. I did a full update on Ali's Caringbridge page, but in a nutshell, the allergy testing went well. She "passed" the ceftriaxone challenge, but it's a little more complicated than pass/fail. We do, at least, have confidence that she will not experience anaphylaxis the next time she receives it. So other than the fact that they had a very difficult time placing the IV, it was a rather uneventful stay.

http://i93.photobucket.com/albums/l71/kellyw8863/Allergy2.jpg

I was hoping to get caught up with everyone while there, but I could not get my laptop to connect to the Internet there. So, off to do so now after I pour a second cup of coffee!:surfweb:

pipersmom
02-17-2010, 09:10 AM
Kelly, I'm glad things went as well as they could with the challenge. It's scary when a reaction kicks in, and hard when you know that particular drug is one the bugs are really sensitive to. :hug: Hooray for Disney on Ice tomorrow, be sure and take lots of pictures!

Momofwishkid
02-17-2010, 10:11 AM
Hi Kelly, Im so glad the challenge went pretty well and no major reactions for Ali. :cool1:

yinyanggirls
02-18-2010, 02:02 AM
What a relief with the test. At least *something* went smoothly. :rolleyes:

erika412
02-18-2010, 05:39 PM
I'm glad it went well!

jenb1023
02-18-2010, 08:22 PM
I finally got a chance to read your whole PTR. I am so sorry how things have been going for you lately. On the bright side, your trip will be here before you know it! I don't know if you are still working on your ADR's or not but we have been to the Tusker House breakfast twice and loved it both times - good food and good character interaction. It is a little loud though.

kellyw8863
02-19-2010, 08:50 AM
Kelly, I'm glad things went as well as they could with the challenge. It's scary when a reaction kicks in, and hard when you know that particular drug is one the bugs are really sensitive to. :hug: Hooray for Disney on Ice tomorrow, be sure and take lots of pictures!

Hi Kelly, Im so glad the challenge went pretty well and no major reactions for Ali. :cool1:

What a relief with the test. At least *something* went smoothly. :rolleyes:

I'm glad it went well!

Thanks, ladies.:goodvibes Hopefully things will quiet down around here for a while!

I finally got a chance to read your whole PTR. I am so sorry how things have been going for you lately. On the bright side, your trip will be here before you know it! I don't know if you are still working on your ADR's or not but we have been to the Tusker House breakfast twice and loved it both times - good food and good character interaction. It is a little loud though.

Hello there! We're really okay with everything. Things always have a way of working out. Thanks for the feedback on the Tusker House. Now I'm thinking that we'll add it back!

So yesterday was Disney Celebrations on Ice, which was a great time! The Starlight Foundation really did a terrific job with the event. We started with breakfast in Legends, which is the premier lounge at the Garden for season ticket holders, etc. It was neat looking at all the sports memorabilia, especially since I have such fond memories of attending events there with my dad when I was a kid. And, the food was great!

http://i93.photobucket.com/albums/l71/kellyw8863/AlionLap.jpg

The organizers were also able to arrange a visit with Mickey and Minnie. I was pleasantly surprised that Ali was not afraid of them at all! And they had arts and crafts for the kids, which was great because the girls took all of two minutes to eat their breakfast.

http://i93.photobucket.com/albums/l71/kellyw8863/MickeyMinnieandGirls.jpg

http://i93.photobucket.com/albums/l71/kellyw8863/Coloring.jpg

Our pictures didn't come out that great, and in hindsight, I really wish that we had brought our DSLR, but the welcome letter we received said no cameras at all. And then before the performance began, they made an announcement that photography during the show for personal use was welcomed.:confused3 I guess that's what we get for following the rules as outlined in the letter. At any rate, we were able to get a halfway acceptable picture of Stitch and the princesses.

http://i93.photobucket.com/albums/l71/kellyw8863/Stitch.jpg

http://i93.photobucket.com/albums/l71/kellyw8863/DisneyonIceMickey.jpg

The skating was great - Garth and I both really enjoyed it. Maya "got it" more than Ali did, and even sang along with most of the songs. It was so fun to see her eyes light up every time a new character came out onto the ice. Ali was so hyper-focused on Stitch that I don't think she enjoyed any of it until she saw him.:rotfl2: Honestly, I think she was a little young for it and actually seemed bored by the end of it. Though that could have been because she was having a really bad day in general. But overall, it was a blast and we are so glad to have had the opportunity!

pacrosby
02-19-2010, 09:05 AM
Hey Kelly...............

glad to hear all went well with the testing :)

We were at the Garden on Sunday for Disney on Ice. Everyone really enjoyed it. That Starlight Foundation is really something huh? I've heard you and someone else talk about it on here before. I'm glad to here you all had fun (I'm sure Ali enjoyed it too, just maybe alittle too long to maintain her attention)

pipersmom
02-19-2010, 09:20 AM
I'm with Pamela, I need to look into the Starlight Foundation and see how active it is around here. I'm glad the girls had a good time, and if nothing else it was a good test run for Ali with the characters. The girls looked so cute! :hug:

kellyw8863
02-19-2010, 09:24 AM
Good morning, ladies!:goodvibes The Starlight Foundation has been wonderful. I'm still floored at what a wonderful job they did with yesterday's event. All of the kids got Disney toys to bring home with them and a beautiful pin (princess crowns speckled with rhinestones, but of a wonderful quality). And, our seats were great. I know Christine (DMBFan) also belongs, and has done lots of great things through them. I would highly recommend looking into it!

kellyw8863
02-19-2010, 09:25 AM
Oh, and Pamela, is it just me, or was Aladdin pretty fine looking?:rotfl2:

Momofwishkid
02-19-2010, 11:19 AM
Hi Kelly, the Disney on Ice sounds like it was alot of fun!!

jenb1023
02-19-2010, 06:24 PM
Looks like a great time! We love Disney on Ice! We go so often that when I get a notice in the mail about the next one DD calls it an invitation. :lmao:

kellyw8863
02-20-2010, 09:40 AM
Hi Kelly, the Disney on Ice sounds like it was alot of fun!!

Looks like a great time! We love Disney on Ice! We go so often that when I get a notice in the mail about the next one DD calls it an invitation. :lmao:

It was a lot of fun! I haven't been in YEARS, and "back then," it was called the Ice Capades.:rotfl2:

I just wanted to give a shout out to all of the Big Give folks and to thank you all from the bottom of my heart. We are so thrilled to be included. The girls will be over the moon. And, I'm looking forward to be able to give back once we return from our trip.:goodvibes

pacrosby
02-20-2010, 10:02 AM
I must've been busy stuffing my face with the disgusting nachos and cheez whiz plate when Aladdin was floating across the ice :rotfl: as I don't specifically remember him


What I do remember were all the 'broom's during Mickey's little Sorcerer gig there. They were so cool!



Ok............so you notice Aladdin, I notice the 'brooms'. What does that say about me :lmao:


Ah yes..............the Ice Capades!!!! Are you 'old' enough to remember those????

Congrats on the Big Give. Your girls are gonna look fabulous in those clothes. Better get your camera ready!!!

kellyw8863
02-20-2010, 10:27 AM
I must've been busy stuffing my face with the disgusting nachos and cheez whiz plate when Aladdin was floating across the ice :rotfl: as I don't specifically remember him


What I do remember were all the 'broom's during Mickey's little Sorcerer gig there. They were so cool!



Ok............so you notice Aladdin, I notice the 'brooms'. What does that say about me :lmao:


Ah yes..............the Ice Capades!!!! Are you 'old' enough to remember those????

Congrats on the Big Give. Your girls are gonna look fabulous in those clothes. Better get your camera ready!!!

Unfortunately, yes, I am old enough to remember. And Dorothy Hamel.:scared1:

pacrosby
02-20-2010, 10:41 AM
Ahhhhhh I do notice you have left off your age in your siggie. How convieeeeeeeenent;)

hmmmmmmmmmm

You can't be any older than me so fess up there girl!!!!!!!




btw: I had a Dorothy Hamel haircut in Junior High (not all athat attractive let me tell you :rotfl2:)

Momofwishkid
02-20-2010, 10:43 AM
Congrats on the Big Give!! They are amazing. Cant wait to see what you get.

Thumper321
02-20-2010, 11:00 AM
Congrats on the Big Give! :woohoo: I know that I have been so excited to watch our packages come in over the last couple of weeks. I'm sure the kids are going to be even more excited! :yay::yay::yay: It is really amazing to see what these people do for the kids.

:disrocks:

kellyw8863
02-20-2010, 11:08 AM
Ahhhhhh I do notice you have left off your age in your siggie. How convieeeeeeeenent;)

hmmmmmmmmmm

You can't be any older than me so fess up there girl!!!!!!!




btw: I had a Dorothy Hamel haircut in Junior High (not all athat attractive let me tell you :rotfl2:)

First of all, you don't even look close to the age you have listed in your siggie.:goodvibes I had the Dorothy Hamel haircut when I was in about 2nd - 3rd grade, so that should give you an idea.;) My brother, who is four years older than I am, was obsessed with her and used to have her photos hanging around his bedroom. That should be enough clues!

Congrats on the Big Give!! They are amazing. Cant wait to see what you get.

Congrats on the Big Give! :woohoo: I know that I have been so excited to watch our packages come in over the last couple of weeks. I'm sure the kids are going to be even more excited! :yay::yay::yay: It is really amazing to see what these people do for the kids.

:disrocks:

It truly is amazing. I had no idea that this community even existed before I started researching Disney for Ali's Wish Trip. It's just such a wonderful, supportive group of people.:lovestruc

pnutallergymom
02-20-2010, 02:30 PM
I LOVED the pics of Disney on Ice!!! I think Brigitte would have enjoyed that a little more than all those Princesses I'm trying to shove down her throat!!!:rotfl2:

I am so happy you guys are getting to be part of the Big Give!!! :yay::dance3: Can't wait to see more pics of the girls!!! Congrats!!!! :cool1:

yinyanggirls
02-20-2010, 04:36 PM
Yay! How fun to receive a Big Give. :worship:

pipersmom
02-20-2010, 04:57 PM
Woohooo for the Big Give! :banana: party: Ali and Maya are going to look sooooo cute! :cutie:

TinkerbelleMom
02-20-2010, 09:25 PM
It's good to meet you and your family!! I always read through as much of a PTR as I can when I'm involved in the Big Give. I had to laugh at the day that was so terrible you were looking forward to a large margerita...when I've had a crummy day I've been known to say I want a margerita in a glass big enough to bathe a small child in. :) Hope all your days between now and the trip are all good ones.

xanphylus
02-20-2010, 10:34 PM
Alright! I will come out of lurking once again and say hello! :goodvibes
I have been reading your pre-trippie for a while now, but I usually don't say too much... Unless it's Piper's mommies page of course... :lmao:
Your daughters are gorgeous! And Ali looks like she has a fire inside her that just screams!! I bet she can be crazy some days! :rotfl2: My 9 year old gives me a run for my money and my 1 year old even more so, but Ali's eyes just look full of life and like she just wants to live it to the fullest with mommy running after her!! :lmao: I love it! :lovestruc

kellyw8863
02-21-2010, 08:27 AM
I LOVED the pics of Disney on Ice!!! I think Brigitte would have enjoyed that a little more than all those Princesses I'm trying to shove down her throat!!!:rotfl2:

I am so happy you guys are getting to be part of the Big Give!!! :yay::dance3: Can't wait to see more pics of the girls!!! Congrats!!!! :cool1:

Too funny about the princesses.:rotfl: It was a great show because it wasn't all princesses. Their "Halloween celebration" was phenomenal and included all of the Disney villains, including the dude from the Nightmare Before Christmas. It really was a lot of fun. I hope that Brigitte is feeling better soon.:grouphug:

Yay! How fun to receive a Big Give. :worship:

Woohooo for the Big Give! :banana: party: Ali and Maya are going to look sooooo cute! :cutie:

Thanks, ladies. I'm still overwhelmed by their generosity.:love:

It's good to meet you and your family!! I always read through as much of a PTR as I can when I'm involved in the Big Give. I had to laugh at the day that was so terrible you were looking forward to a large margerita...when I've had a crummy day I've been known to say I want a margerita in a glass big enough to bathe a small child in. :) Hope all your days between now and the trip are all good ones.

Thanks for stopping by!:goodvibes I remember that night, and I think I even had more than one, but I like your line about a glass big enough...:lmao: I think I'm going to have to steal that one. Thank you for all that you do for the wish families - it really is amazing.:goodvibes

Alright! I will come out of lurking once again and say hello! :goodvibes
I have been reading your pre-trippie for a while now, but I usually don't say too much... Unless it's Piper's mommies page of course... :lmao:
Your daughters are gorgeous! And Ali looks like she has a fire inside her that just screams!! I bet she can be crazy some days! :rotfl2: My 9 year old gives me a run for my money and my 1 year old even more so, but Ali's eyes just look full of life and like she just wants to live it to the fullest with mommy running after her!! :lmao: I love it! :lovestruc

Hello there! Thanks for the compliments on the girls.:goodvibes Ali definitely has a fire in her. We like to say it's the key to her survival.:rotfl2: Wow - A 9 year old and a 1 year old - I imagine they keep you heading in different directions! Thanks for all that you do for the wish families - it truly makes the difference between a great experience and an unbelievable experience.

kellyw8863
02-21-2010, 09:09 AM
I swear these pictures make sense...;)

http://i93.photobucket.com/albums/l71/kellyw8863/Tube004.jpg

http://i93.photobucket.com/albums/l71/kellyw8863/Tube001.jpg

http://i93.photobucket.com/albums/l71/kellyw8863/Tube002.jpg

http://i93.photobucket.com/albums/l71/kellyw8863/Tube003.jpg

I know they're huge, but I wanted it to be clear exactly how her tubing runs.

erika412
02-21-2010, 09:13 AM
She's gorgeous.

kellyw8863
02-21-2010, 09:23 AM
Thanks.:goodvibes

Thumper321
02-21-2010, 09:52 AM
She's got a Zevex! And a backpack! And a Mic-Key! I am going to have to show this to Aidan. He hasn't ever met another kid with a G-Tube. I mean, his doll has one, but not a real kid. Thanks for posting these!

pacrosby
02-21-2010, 10:46 AM
First of all, you don't even look close to the age you have listed in your siggie.:goodvibes I had the Dorothy Hamel haircut when I was in about 2nd - 3rd grade, so that should give you an idea.;) My brother, who is four years older than I am, was obsessed with her and used to have her photos hanging around his bedroom. That should be enough clues!


Ok, I'm known to be pretty good at math......................I've got a pretty good idea :)

And thanx for trying to make me feel good :rotfl:. While I'm not exactly sure how old I do 'look' I do know that I seem to defy many's expectation of the 'almost 50 year old' mother of young children. You know.............."those poor kids, being raised by such an 'old' woman, no fun, no energy, old enough to be their grandma etc. etc. etc........................." :lmao:


btw. No age is one thing. No px???? Where are the px of Miss Ali's momma???? Huh? Huh? Huh?



Hey.....didn't you say you lived in Princeton???? We were going to go to Wachusett today but got up too late. Maybe next week. Do you guys ski?

kellyw8863
02-21-2010, 10:47 AM
She's got a Zevex! And a backpack! And a Mic-Key! I am going to have to show this to Aidan. He hasn't ever met another kid with a G-Tube. I mean, his doll has one, but not a real kid. Thanks for posting these!

We're so fortunate in that we have several friends whose children have g-tubes. It certainly helped when we were planning to have it placed. We love the Zevex. When Maya was little, she had an NG tube for a while and had the Kangaroo. It was marketed as portable, but there was no way she could have lugged that thing around. This we just throw in the backpack and Ali goes about her business. We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

It's truly a blessing and a curse. Some days I hate it, and I definitely hate changing out the button, but most days I love it. I love not having to fight over medications, and I love being able to give her what she needs when she needs it. How long has Aidan had his for?

Thumper321
02-21-2010, 11:12 AM
We're so fortunate in that we have several friends whose children have g-tubes. It certainly helped when we were planning to have it placed. We love the Zevex. When Maya was little, she had an NG tube for a while and had the Kangaroo. It was marketed as portable, but there was no way she could have lugged that thing around. This we just throw in the backpack and Ali goes about her business. We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

It's truly a blessing and a curse. Some days I hate it, and I definitely hate changing out the button, but most days I love it. I love not having to fight over medications, and I love being able to give her what she needs when she needs it. How long has Aidan had his for?

We love our Zevex, too! Aidan had an NG tube to start also, and got his G-tube when he was a year old. He started with the Kangaroo, and it worked okay until he became more mobile. But when he started walking at two years, he couldn't carry the Kangaroo. That's when I insisted on the Zevex. The difference in weights is tremendous! When Aidan first started walking, he was 18 pounds. The Kangaroo weighed over 5 pounds, and the Zevex weighed less than 3 pounds with his formula. Of course, he takes more formula now, but it is still a manageable weight. And we love the backpack. He can flip, hang, and do normal kid stuff with it.

Aidan has learned to change out his own button now, and I think that makes it a lot easier. I mean, he doesn't inflate/deflate the balloon, but he pulls it out and puts the new one in. I think it gives him a little control over the situation, and that makes it easier on him, which in turn makes it easier on me.

I know what you mean about the love/hate relationship. It's so much easier than the NG tubes, and it makes getting Aidan what he needs a lot easier. But there are also times when I want to curse the darn thing. :headache: Like when the balloon bursts and it falls out or when the reflux valve quits working and formula goes everywhere, or when the med port accidentally gets opened in the middle of the night and I spend the whole day cleaning Aidan, the linens, and the mattress. :laughing: Aidan will have had his for 5 years in June. I hope the day comes where he might not need it anymore, but I'm so glad that he has it now.

Going to look up the AMT now. . . ;)

Thumper321
02-21-2010, 11:16 AM
We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

Now that I look closer, is that the AMT in the pictures? I thought Mic-Key from first glance, but the Mic-Key doesn't have the green inside the balloon fill port.

Wee Annie
02-21-2010, 01:54 PM
We're so fortunate in that we have several friends whose children have g-tubes. It certainly helped when we were planning to have it placed. We love the Zevex. When Maya was little, she had an NG tube for a while and had the Kangaroo. It was marketed as portable, but there was no way she could have lugged that thing around. This we just throw in the backpack and Ali goes about her business. We no longer use the Mic-Key for the button. We switched to the AMT Mini-One because it is lower profile and has a more durable anti-reflux valve, and we will never go back to the Mic-Key. The Mic-Key used to catch on everything.

It's truly a blessing and a curse. Some days I hate it, and I definitely hate changing out the button, but most days I love it. I love not having to fight over medications, and I love being able to give her what she needs when she needs it. How long has Aidan had his for?

Wow. Definitely learning things from this discussion -- thanks!! Elke has a Mic-Key button, and we have used the Kangaroo pump -- really a pain to lug around!!!! I will have to look into the AMT Mini-one if it seems like her g-tube days will be prolonged. Right now, I'm just so thankful for the Mic-Key button! So much better than the NG tube!

Btw, thanks SO much for posting the pics of Ali and her button/tubing! I just called Elke to the computer to look at them, and Elke was absolutely enthralled! Wanted to see more! She has never met another child with a g-tube (most the ped. oncology patients don't end up needing them). So thanks -- it was truly nice for her to see. And now I'll be telling her that we can see Ali at GKTW too (we're arriving 4/17).

I've been quiet for a while on these boards, and will probably never be the most active, but am looking forward to planning those April days ahead of us, and seeing what all you have planned!

Wee Annie
02-21-2010, 01:57 PM
Forgot to mention that I had the ubiquitous Dorothy Hamill haircut in 4th and 5th grades, which puts me in between you two re age....

kellyw8863
02-21-2010, 01:58 PM
It is the AMT, and we love, love, love it. The anti-reflux valve is much more durable than the Mic-Key (at least in my opinion), and it has a significantly lower profile. The kits are better, too. They come complete with lube, a 10ml syringe, a 60ml syringe, gauze, two extensions, and an introducer that you insert into the button so that the "stem" doesn't keep flopping all over the place when you're trying to push it through the stoma. I also like the extensions better, though the AMT is completely compatible with the Mic-Key feed sets. I use the AMT extensions primarily when we run fluids at night because they have a "catch" on them so the med port doesn't pop open on accident. Otherwise, we just use the Mic-Key extensions.

My only complaint is that when we first change the button to a new one, it can be really tough to get the extensions to snap in. Sometimes it takes a little extra finagling, but it seems to loosen up after a week or so. I imagine it's this same tightness that means they don't "blow" as quickly as the Mic-Key. FWIW, Ali has never complained that it can be hard to push the extension in except for when my hands are cold, which is most of the time.:rotfl2:

I'll see if I can find an old Mic-Key and take a picture of it side-by-side with the AMT.

kellyw8863
02-21-2010, 03:19 PM
Ok, I'm known to be pretty good at math......................I've got a pretty good idea :)

And thanx for trying to make me feel good :rotfl:. While I'm not exactly sure how old I do 'look' I do know that I seem to defy many's expectation of the 'almost 50 year old' mother of young children. You know.............."those poor kids, being raised by such an 'old' woman, no fun, no energy, old enough to be their grandma etc. etc. etc........................." :lmao:


btw. No age is one thing. No px???? Where are the px of Miss Ali's momma???? Huh? Huh? Huh?



Hey.....didn't you say you lived in Princeton???? We were going to go to Wachusett today but got up too late. Maybe next week. Do you guys ski?

:rotfl2::rotfl2: I HATE pictures of myself. I am basically the antithesis of photogenic. Not to mention that I am one of those woman who holds on to every. single. calorie. (and then some) while breastfeeding in the rare event that the world experience some type of holocaust so that I could not eat for a week yet still continue to feed my child. So while I'm no longer breastfeeding (though I nursed Ali for almost 2 years - can't beat free hospital food for breastfeeding mothers:rotfl2:), I am still hanging on to that damn baby weight (my fault). That's a really long way of me saying here's a picture, as terrible as it may be.

http://i93.photobucket.com/albums/l71/kellyw8863/014-2.jpg

We live about 15 - 20 minutes northwest of Princeton, and no, we don't ski. Well, I should clarify that. I did at one time, as did my husband. Ali can't do cold and we just haven't gotten around to it with Maya. I do drink a mean hot toddy though while sitting by the fire!

pipersmom
02-21-2010, 04:19 PM
Yanno...it would be easier to see ya if the piccie was bigger than 1x2!! LOL! So crafty you are ;) If I can post pics of myself, anyone here can! :hug:

erika412
02-21-2010, 04:29 PM
If I can post pics of myself, anyone here can! :hug:

I'll ditto that- about myself of course!

kellyw8863
02-21-2010, 04:54 PM
Wow. Definitely learning things from this discussion -- thanks!! Elke has a Mic-Key button, and we have used the Kangaroo pump -- really a pain to lug around!!!! I will have to look into the AMT Mini-one if it seems like her g-tube days will be prolonged. Right now, I'm just so thankful for the Mic-Key button! So much better than the NG tube!

Btw, thanks SO much for posting the pics of Ali and her button/tubing! I just called Elke to the computer to look at them, and Elke was absolutely enthralled! Wanted to see more! She has never met another child with a g-tube (most the ped. oncology patients don't end up needing them). So thanks -- it was truly nice for her to see. And now I'll be telling her that we can see Ali at GKTW too (we're arriving 4/17).

I've been quiet for a while on these boards, and will probably never be the most active, but am looking forward to planning those April days ahead of us, and seeing what all you have planned!

I don't know how I missed your post! In a couple of weeks, or so, you'll see why I posted the tubing pics - I'm so excited! Maya had an NG tube for a while when she was an infant, but we never had to switch it out to a GT. Ali was the exact opposite - never had the NG and went right to the GT. Because of her difficulty with swallowing, we really didn't have a choice, and since mito is progressive, we know that it's a permanent thing for her. I am hopeful that we can meet up at GKTW - I think that would be neat! I know Ali would like to see another little one her age with the same hook-ups she has. She knows of older boys with them, but no little girls.

Yanno...it would be easier to see ya if the piccie was bigger than 1x2!! LOL! So crafty you are ;) If I can post pics of myself, anyone here can! :hug:

I'll ditto that- about myself of course!

I know, I know.:rolleyes1 We were really rushed during the meet and greet, so even cropping/enlarging won't really help. It's just a bad picture. We are going to take advantage of the Photopass while we're there, though, and I'm determined to have some family pics. I've been doing South Beach in preparation, and while I will not be throwing on a two-piece, I'm hopeful that I won't at least be mortified having my pic taken (typed as the timer goes off for the peanut butter cookies in the oven - oops!).