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pnutallergymom
12-27-2009, 09:04 PM
Welcome to our Pre-Trip Report. I apologize in advance for the length of this history. Its hard to summarize all that Brigitte has been through.:)

Our lives would be forever changed on August 18, 2006 by the addition of our fourth childprincess:. There had been many indications early on in the pregnancy that our little girl would be born with major health issues. We just never had any idea how severe they would be.

Finally at 36 weeks the decision was made to induce labor. 14 hours later, Brigitte was born. We knew she wouldn’t be breathing as she had bilateral pleural effusions and she was immediately transferred to the NICU where she would spend the next 11 days. During these days she was intubated and on life support for the first 4 days of life. She was diagnosed with multiple cardiac anomalies and genetics was called in for a consult due to her dysmorphic facial appearance. She was given a clinical diagnosis of Noonan Syndrome by one of the leading NS cardiovascular geneticists in the country at Children’s Hospital Boston.

To date, Brigitte has spent over 240 nights at CHB. She has had 15 major surgeries and over 40 procedures requiring general anesthesia. What we initially thought was a complex heart defect would soon turn into much more. Open heart surgery, being the easiest thing we have faced so far. Who would have thought? She has diagnosis that include Noonan Syndrome, Mild CP, dysautonomia, failure to thrive, low tone, reflux, constipation, global developmental delay, pulmonary stenosis, hypertrophic cardiomyopathy, ASD, intestinal malrotation, laryngeal cleft, strabismus, ptosis, growth hormone deficiency, common variable immunodeficiency, medically induced PTSD, chronic aspiration, asthma, and more I am forgetting. We currently see specialists in the following fields: Cardiology, Genetics, GI, Pulmonary, Gen. Surg, Endocrine, Immunology, Psych, Ophthalmology, Complex Care, Otolaryngology, Orthopedics, Neurology, and Infectious Disease. Her current accessories now include a gtube, a broviac central line, and SMO's. Her current medications are Neurontin, Clonidine, Trazodone, Prevacid, Miralax, Senna, Melatonin, Atropine drops, Flovent, Albuterol, Periactin, Tev-Tropin, and IVIG...we are starting ethanol locks this week as well on her line.

In the last 10 weeks, Brigitte has been hospitalized 3 times and has had a surgery each of those stays. After a marathon run of 18 mo of not gaining an ounce of weight despite having her first 30 day run without an antibiotic and being relatively healthy, the decision was made to start her on TPN. The changes we saw in her in the first 6 weeks were incredible! She started talking, took her first steps and gained almost 4lbs. Then the irritability started and so did the low grade fevers. She had a line infection just 6 weeks after having it placed. We immediately started treatment with Vanco, but then the cultures started to grow out a second bug. She was now growing two different bugs, which later were identified by the CDC in Atlanta as a strain of staph only found in dirt. No idea where this came from, but she was getting worse as the hours went on, so the line came out. We believe that had that line stayed in another 12 hours, she would have been in the PICU. We made the right decision, but Brigitte’s body didn’t agree. So 3 weeks ago, she went back in to have another Broviac placed.

The hospital stays have gotten harder and harder as Brigitte gets older and understands so much more. For the last year, she cries when we pull into the parking garage. It is near impossible to take her temperature, let alone examine her. During one of the recent hospitalizations her team ordered a psych consult where she was diagnosed with PTSD. She is now taking 2 different anxiety meds, and another sleep med just to get through the night.
Despite all she has been through, she is such a happy little girl when she is well. She has made amazing strides in the last few months. TPN has definitely been a miracle for her. She attends a special needs inclusion pre-school 3 days a week. She receives PT, OT and Speech at school, as well as privately at home. We are very optimistic that things will get better as long as we can give her the adequate nutrition she needs. She is very different from most kids with NS. The theory is that she is hyper metabolic and just requires so many more calories than normal…..and more than we can give her. Having an ongoing heart issue isn’t helping matters either!!

So, as I am sure most of you who have “sick kids” can relate, Brigitte sure could use a break! A week of fun!! No doctors, No appointments!! We are super excited and are counting down the days!!

In case you didn’t catch it in the beginning, Brigitte is our 4th child. Brenna is 8. Jake is 7. Sean is 6. The kids have been through so much. It isn’t easy on them either. Not only are they constantly worried they will never see their sister each time she goes to the hospital, they lose mom for a bit too. My husband, Bryan, and I are very lucky to have a wonderful support system. Our parents jump right in and take care of picking up the slack when Brigge is in the hospital. It has made it a bit easier, but nobody can take the place of mom and dad, especially when you are scared. They are growing up to be amazing, compassionate children. I am so very blessed to have them, as is their baby sister. They deserve this trip as much as their sister does. We are so grateful to have been given this opportunity from MAW. What an amazing organization.

As it stands now, our adventure will begin on April 24th- April 30th. We are extending it to May 5th!!! I don’t want to feel rushed at all. If the kids want to spend all day at the pool, then that is fine with us. My goal is to come home relaxed and feel like we are very lucky to be able to extend the time so we can really slow down and enjoy!!

We are staying at Animal Kingdom Lodge and haven’t decided where we will spend the last 5 days. We have an opportunity to stay at the Swan on a really good discount, but haven’t made up our minds yet.

maroo
12-27-2009, 10:24 PM
HI there!

Oh my goodness! Those line infections are crazy bad!

I can't keep everyone straight... Are you guys staying at AKL because GKTW is full that week? We had to stay at The Contemporary because GKTW was full - we still had a great time (but we had much older kids on the trip)!

At least with the long stay, you guys will have time to go to GKTW a lot and attend the parties, etc, even if you don't sleep there!

And you will get to do your star! So that is awesome! Your kids are going to love the place!

And of course Disney! :rotfl:

pnutallergymom
12-28-2009, 08:30 AM
Hi Maroo,

Brigitte's actual wish was for Disney...but more specifically, she wanted to Open Magic Kingdom with all the characters at the morning opening ceremonies. Our local MAW is working on it, but are pretty sure it won't be able to happen:sad1:. So since she is soooooo into Mickey and Minnie, we decided it would be best to stay onsite. Originally, we weren't going to have a rental car, but after meeting with our wonderful wish granters last week, that has changed. So we will be able to attend a few of the events at GKTW:). We are planning on doing Mayor Claytons Bday party the day we get in and definitely Christmas on the Thursday night as well. We had no intentions on utilizing the passes to US/IOA, but since we have the rental, we will now incorporate those into our plans as well.

We are actually thrilled to be staying at AKL. I think it is going to be an experience in itself!!:cool1: We are very fortunate to be able to extend the vacation so that we can have alot of down time!! Our plans are to do some pool days, some rope drops (but those will mean early nights too) and also some late mornings so that we can stay out late some nights too!!

I have already made some ADR's. I'm thrilled to say we have reservations for Chef Mickey's, Ohana, Cape May, and Le Cellier!! I have been a loooooong time lurker on the Dis but am excited to be planning this trip. One thing I am struggling with is trying to let go and let some magic happen!! Thank you for your dedication to all the families on Wish Trips. You are truly amazing!!

Momofwishkid
12-28-2009, 01:12 PM
Hi Shannon, Im so glad you started a PTR. It sounds like Bridgette and the whole family are in need of a nice restful vacation. Im so happy she was able to get her wish and Yes I thik AKL will be awesome. Cant wait to follow along with you.

maroo
12-28-2009, 02:43 PM
I am so glad to hear that you guys have decided to get the rental car! That will be alot easier than taking a cab and then not being able to go back and forth!

:goodvibes

AlternateEgo
12-28-2009, 04:58 PM
Oh your plans sounds wonderful! :wizard:

dmbfan
12-28-2009, 09:09 PM
Wow that is awesome that you get stay at AKL and still be able to go to GKTW...:cool1::cool1::cool1::cool1::cool1::cool1:I did not know you could both as a wish trip...that is like a wish trip and half...:thumbsup2

Than I guess you will not be missing to much by not staying at GKTW...:banana:However the drive from Disney itself to GKTW can take about anywhere from 20-30 mins...but if you have alot of down time, than it should work out good for all.

Can't wait to follow your PT...:wizard:

pnutallergymom
12-29-2009, 03:16 PM
So, I am excited to share that I booked our extra days at the Swan today!! I am going to have to re-do my itinerary now!! Isn't that just terrible:thumbsup2!

For those of you who have gone on your wish trips already, do you know if the passes to the parks have to be used during the 7 days of the wish trip? I thought I was told by our wish granters that they needed to be used within a year? Just wanted to clarify that.

Thanks!!

kellyw8863
12-29-2009, 03:23 PM
So, I am excited to share that I booked our extra days at the Swan today!! I am going to have to re-do my itinerary now!! Isn't that just terrible:thumbsup2!

For those of you who have gone on your wish trips already, do you know if the passes to the parks have to be used during the 7 days of the wish trip? I thought I was told by our wish granters that they needed to be used within a year? Just wanted to clarify that.

Thanks!!

I don't think they need to be used during the seven days. I want to say that I have read TRs where people have extended their trips so that they did not have to use all the passes in such a short period of time, but I'm sure there are people out there who know more about this than I do.

I'm so interested to read how your trip planning goes with AKL. We're hoping to extend our trip by a day or two and pay OOP to stay there. I so wish that DH and I could get the time off of work to extend even longer, which we could if we went in the summer, but Ali would not be able to tolerate the heat. Oh well!

dmbfan
12-29-2009, 04:34 PM
We were given 3 day hopper passes, 2 US/IA and one Seaworld. Plus the GKTW button has your child's name and dates for your trip. Plus the GAC pass also has your last day of your wish trip on it. This might be something you need to talk to GKTW about ( as they are the ones that hand out your packet) but since your not stay at GKTW, not sure how that works.

But I am guessing you will have to pay of pocket for any extra days at the park.

maroo
12-29-2009, 05:59 PM
So, I am excited to share that I booked our extra days at the Swan today!! I am going to have to re-do my itinerary now!! Isn't that just terrible:thumbsup2!

For those of you who have gone on your wish trips already, do you know if the passes to the parks have to be used during the 7 days of the wish trip? I thought I was told by our wish granters that they needed to be used within a year? Just wanted to clarify that.

Thanks!!

The passes to the parks expire 14 days after the first use.

But they are "complimentary" passes...so they can not be upgraded for any additional days. Of course, this gets messed up since those first few days of the ticket are the most expensive. So if you have to buy one day...it is going to cost a bundle, unfortuntately.

Your GKTW button and GKTW issued GAC will have your specific wish trip dates on them. I am sure that your button would continue to be recognized...but not sure about the GAC. Most attractions will accept that button like a golden ticket...but some will ask for the GAC - depends on the CM. They "may" not see that it is expired...but I would not chance it.

I would go to Guest Relations on the first day of the OOP part and let them know...especially since it is more than a couple of days of an extension AND it goes into a new month. I would think that would be more noticable to the CM's. Take the GAC you already have and explain the situation and hopefully they will issue you another GAC with the green light.

maroo
12-29-2009, 06:09 PM
We were given 3 day hopper passes, 2 US/IA and one Seaworld. Plus the GKTW button has your child's name and dates for your trip. Plus the GAC pass also has your last day of your wish trip on it. This might be something you need to talk to GKTW about ( as they are the ones that hand out your packet) but since your not stay at GKTW, not sure how that works.

But I am guessing you will have to pay of pocket for any extra days at the park.

This works a lot like it does for a reg wish trip - they actually already have the GAC stamped before you even get there and it is in your orientation packet. It will say that it was issued at GKTW, even if you are staying at a Disney Resort - so when you are in the parks, the CM's really won't know the difference. This works really well for the families staying onsite because they have a "I have to go NOW" wish trip and GKTW is full, so I guess that is why they handle it that way - which is good for you guys!

pnutallergymom
12-29-2009, 10:18 PM
Thanks you guys. I just wanted to be sure we weren't going to be rushed into using those passes in the first 7 days. I know that I have to pay for more out of pocket if I need them...luckily we have a friend who might be able to get us some more for free, but if not and we need them, we'll just purchase them at the park.

I'm not worried about the GAC either. Anybody with a disability can get one at guest services. We have had one the last two trips to the parks and at US/IOA....and granted we didn't just walk right onto rides, but we were treated really well. Brigitte will be just fine as we typically just have her sit in her wheelchair when we are in lines since she can't stand for long periods of time. I have used TGM in the past and have NEVER waited in a line for more than 10-15min at a time anyways. Despite having the "golden ticket" or GKTW button, I plan on following most of TGM touring plans as I find they are a great resource to use to tour the parks!! I highly recommend them!! That and a few of the touring books are fabulous resources!!

yinyanggirls
12-29-2009, 11:18 PM
Sounds like you know what you're doing! Our last day at GKTW is the 24th, but we are then leaving WDW area. Depending on flight times we may go back one last time before we fly out on the 30th. We'll see.:rolleyes1

dmbfan
12-30-2009, 10:28 AM
I have used TGM in the past and have NEVER waited in a line for more than 10-15min at a time anyways. Despite having the "golden ticket" or GKTW button, I plan on following most of TGM touring plans as I find they are a great resource to use to tour the parks!! I highly recommend them!! That and a few of the touring books are fabulous resources!!

Can I ask what TGM touring plans?

pnutallergymom
12-30-2009, 10:58 AM
The TourGuideMike plans are great:)!! I have used all of them, but especially the one for MK. They are based on visiting the parks on Green (awesome touring) Yellow (be careful, could be a bit crowded) and Red (stay far, far away)!!

There are certain ways to "tour" the park. TGM is a private tourguide that you can hire to take you around the park......$$$$$$ But, you can subscribe to the site and build your own touring plans for I think 24.95.

Basically, it tells you to get to Rope Drop first...hit the rides in a certain order, sometimes securing FastPasses, sometimes not.....heading back to the resort for a "break" and then coming back and touring the park again in a specific order.

I was very skeptical at first, but the first time we used the touring guides, it was a fabulous vacation. I can honestly tell you, we never waited more than 10-15min for a ride, if at all. They are very similar to the Unofficial/Official Guide to Disney. Those are both VERY good as well. I just like TGM site a bit better...just a little easier to navigate!! I knew how much it worked for us, when friends of Bryan's went the same week and told us that their vacation was awful...they waited for hours in lines, the kids were hot and miserable...they couldn't wait to go home!!! I was like "we're we in the same place? Ours was GREAT"!!:confused3

As you know, Christine, sitting at CHB waiting for the docs to do rounds leaves you with LOTS of time on your hands. I managed to get hooked on Disney while trying to figure out how to make some of the "bad stuff" disappear for the kids. So thats how I planned our first vacation. I followed this board, and TGM and we had an AMAZING trip the first time. The second time, not so much. I didn't plan....didn't have the touring plans, figured I could wing it..........it wasn't what we were used to at all, and we came back VERY disappointed.

You should look into it for your next trip. It really does make a difference.

dmbfan
12-30-2009, 11:08 AM
As you know, Christine, sitting at CHB waiting for the docs to do rounds leaves you with LOTS of time on your hands.

Do you go to Boston Children's too?

Thanks I will look into that site for sure...Thanks..:thumbsup2

pnutallergymom
12-30-2009, 11:20 AM
Yes, we do!! 9south is our new home too. We used to go to 8south (CICU) and 8east, but since we are focusing on just GI stuff at the moment that is where we go.

Dr. Kamin is Brigitte's GI doc....love him!! We have seen Dr. B a few times too. He's a great guy! Dr. Nurko is the one who has had to place her GJ and has done all of her botox. We are actually headed in there today. I have to see Denise and Nicole about Brigitte's site (not looking so great) plus she is starting the ethanol locks, so we have to do a trial in clinic today. Dr. K called and wants to talk about increasing her PN as well. Right now we use it as supplementation 3x a week and then run D5 1/2 the other 4 days, but she isn't gaining any weight, so I think he wants to go up another day a week:sad2:

Its funny, we actually see your other friend over at Floating once a year just for a "make sure CHB is doing what they should" appointment.!!

dmbfan
12-30-2009, 01:03 PM
Have we meet before? How did you know we were on 9South too? If we have meet and I do not remember, I am so sorry...:guilty:

I know Dr K, we had him when he was still a resident..:rotfl: Ever since I pushed Jake to get off TPN, he has been hospital free...TPN was just causing to many problems. The only negative thing is Jake has lost about a totally of 10lbs since coming off the TPN, he now weights in at a lovely 46lbs at 9 years old...but his current GI seems to be ok with it.

Who is our friends over at Floating? You talking about Dr Flores? He is just wonderful and so greatful he has been other things to try, cause Children's had no other solutions except keep him on TPN...and we refuse to let that happen.

We did the locks with Jake for a while and it made a huge help. We do not do them anymore, cause we are just using his line for IV fluids and IV meds. Being on TPN, the locks are great. Good Luck today.

kellyw8863
12-30-2009, 05:02 PM
I hope everything went well today!

pnutallergymom
12-30-2009, 09:59 PM
Christine, we haven't actually "met" before...but we did talk on the phone a loooong time ago....before Brigitte got her fundo!! It was like 3 yrs ago. I think I have seen you walking in the halls before too. I am pretty good friends with Jessica and Eithene. You would probably know who Brigitte is if you saw her....red, curly hair...very tiny!!!:goodvibes And yes, it is Dr. Flores that we see every year, just for a quick check! Dr. K consults w/him alot about Brigitte.

Things didn't go great at all today, actually. She has a suture abscess on her line site...so that needs to be addressed. Worse though, she has lost 1.2 kilos in 12 days. I was in shock. We ran a bunch of labs, all of which look good, but Dr. K ordered a Chest X-ray and it showed a significant prominence in her pulmonary vasculature. Her echo a month ago during her line infection also showed that her pulmonary regurgitation had increased from moderate to severe. She is going to end up needing a valve replacement, something we were really trying to hold out on for as long as possible. It is just affecting so many of her other systems now, that the writing is on the wall. We are going to increase her PN to 4nights a week now too in the hopes it will give her a bit of a boost. So, I guess we'll see.

pipersmom
12-30-2009, 10:36 PM
I'm so sorry things didn't go better for you today, Shannon. I always worry about line infection with Piper's port, but knock wood we haven't had one yet. Hoping the PN will help, and keeping you in our thoughts and prayers. :hug:

yinyanggirls
12-30-2009, 10:39 PM
Can I ask what TGM touring plans?

I'm guessing she's talking about Tour Guide Mike. He has a link here off of the DIS. The Unofficial Guide to WDW also has a website (touringplans.com) that offers plans as well.

dmbfan
12-31-2009, 12:55 PM
Christine, we haven't actually "met" before...but we did talk on the phone a loooong time ago....before Brigitte got her fundo!! It was like 3 yrs ago. I think I have seen you walking in the halls before too. I am pretty good friends with Jessica and Eithene. You would probably know who Brigitte is if you saw her....red, curly hair...very tiny!!!:goodvibes And yes, it is Dr. Flores that we see every year, just for a quick check! Dr. K consults w/him alot about Brigitte.

Things didn't go great at all today, actually. She has a suture abscess on her line site...so that needs to be addressed. Worse though, she has lost 1.2 kilos in 12 days. I was in shock. We ran a bunch of labs, all of which look good, but Dr. K ordered a Chest X-ray and it showed a significant prominence in her pulmonary vasculature. Her echo a month ago during her line infection also showed that her pulmonary regurgitation had increased from moderate to severe. She is going to end up needing a valve replacement, something we were really trying to hold out on for as long as possible. It is just affecting so many of her other systems now, that the writing is on the wall. We are going to increase her PN to 4nights a week now too in the hopes it will give her a bit of a boost. So, I guess we'll see.

Wow, I feel awful cause I do not remember...:eek: I am sorry. I am SOO glad you see Dr Flores, has he tried the long J tube on her yet? This is what helped get Jake off TPN ( and my putting my foot down on it)?

I am sorry they have to increase her TPN...I will say it took Jake almost 5 months of being on 7 days of TPN for 12 hours to some weight gain. He really started to gain nicely before we took him off it, but with a couple of line infections, and blood transfusions, and the GI's there not wanting to do anything to "try" to get see what we can do to get him off TPN, the weight became a non issue. We did see an increase of the infections and lab issues once we started going from 12 hours to 16 hours and increasing calories.

Not sure what will happen when we go back for our next appt, cause he is below the weight line that Dr B wanted him to be at, and since we know pushing the J feeds did not work so well, plus he also did not gain, but contiune to lose, we may have to go back to TPN, but it would only be a couple days a week since he is starting to eat food by mouth, and I do not want him to loose that again. But we will see. We gave it a good almost 7 months...and who knows, maybe dr Flores will have another plan for us.

If Dr F has not mentioned the long J tube I would go back and talk with him. He has so many good ideas than Dr N had...which was nothing...:sad2:for us.

cantwaittoseemickey
12-31-2009, 02:07 PM
Dropping by to say hello:) So sorry to hear the apt didnt go well. Hugs!

Sounds like you have a very exciting trip planned!

pnutallergymom
01-02-2010, 03:17 PM
Thanks you guys. We'll figure it out somehow!! I think the one thing that drives me crazy is that when you know something is wrong with your child and the doctors do to, that it takes FOREVER to make plans to "get a plan in place"...and even then, those plans are rarely acted on the way that you are promised they will!! So frustrating!!

Anyways, I am trying to keep myself busy with reading all the TR and researching and researching all things DISNEY!!!!!

Nothing like a little Disney Magic to put you in a good mood!!!

dmbfan
01-02-2010, 07:13 PM
I would at least ask Dr Flores about the long J tube since you already have him as a dr, it is worth a shot and better than full time TPN. Good Luck

pnutallergymom
01-04-2010, 08:52 PM
I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.:sad1:

I spoke to our wish coordinator today, so that was a ray of sunshine!!!:) She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

yinyanggirls
01-04-2010, 09:06 PM
I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.:sad1:

I spoke to our wish coordinator today, so that was a ray of sunshine!!!:) She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

I'm so sorry for the medical worries today. It is hard to make those tough choices for our kids. :hug:
Glad your trip is moving along. It is nice to have fun things to "worry about" as well.

StefaniLyn
01-04-2010, 11:43 PM
I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.:sad1:

I spoke to our wish coordinator today, so that was a ray of sunshine!!!:) She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

Sorry to hear about the new medical news. Is there any chance the could do the surgery with a catheter?

I will keep you both in my prayers.

pipersmom
01-04-2010, 11:48 PM
I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.:sad1:

I spoke to our wish coordinator today, so that was a ray of sunshine!!!:) She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

I'm so sorry you're having to deal with that right now hon. :hug: I am glad you got to speak with your wish coordinator today though, and that you guys have things to plan for that don't involve Drs and hospitals!

SueM in MN
01-05-2010, 01:19 AM
Can I ask what TGM touring plans?

Tour Guide Mike - one of the sponsors of the Theme Park Board. He was a WDW VIP Tour Guide, started his own private guide business and a tour planning service.

Momofwishkid
01-05-2010, 01:30 AM
Im so sorry you have this news to deal with. I know how hard it is when your facing surgeries. :hug:
Im so glad you got to talk to your WG and have some good news to think about.

kellyw8863
01-05-2010, 05:48 PM
I'm sorry to read this update. Who do you guys see in cardiology? Have they done an echo recently to see how things look?

cantwaittoseemickey
01-05-2010, 07:23 PM
I can't even believe it!! She is down again today to 11.1k from 11.3 on Wednesday!! She looks awful. Her eyes are so sunken in, they look black and blue. Her cardiologist called today and is slightly concerned with the changes in her chest x-ray...but more concerned about her increase in respirations. He did mention it may be time for another open heart surgery...specifically placing a conduit in ther right ventricular pathway to the pulmonary artery.

I know in my heart that this is probably what she needs, but just can't stand to think of more and more surgeries and nights in the hospital.:sad1:

I spoke to our wish coordinator today, so that was a ray of sunshine!!!:) She was going to book our rental car today!! I am so glad that Brigitte has this wish to look forward too!!!

Hope all of you are doing well!!

Im so sorry sweetie. Big (((HUGS)))

pnutallergymom
01-06-2010, 07:58 PM
I'm sorry to read this update. Who do you guys see in cardiology? Have they done an echo recently to see how things look?


Kelly, we see Dr. Fulton. He is a wonderful man, just very conservative. I know that is good most of the time...but not when your kid is fading away in front of you day by day. She did have an echo in November when we were in for the line infection. Her pulmonary regurgitation has gone from moderate to severe just since April. She also has some left to right shunting due to her ASD....that has yet to close. So its time, I just dread the thought of it.


Thanks all of you for your very kind words. Brigitte is down to 11.0k. I can't believe she is still losing. We have the cardiology appt. tomorrow. Hopefully we will get some answers...if not I have a secondary plan in place that may be bringing us to Florida sooner rather than later. I am setting up a 2nd opinion at Miami Children's Hospital, with a very prominent surgeon who left Boston to become the director in Miami. We have been in touch by email a few times this week and he is very interested in Brigitte's case. He is optimistic he can help.

So, tonight I bounce back and forth between setting up ADR's and researching cardiac options!!

Hope you all are doing well!! I am enjoying following all of the other Wish Trips that are in the planning phase as well!!!

pipersmom
01-06-2010, 11:28 PM
Keeping you guys in my thoughts and hoping you get some positive forward progress tomorrow, Shannon. I know how frustrating it can be to not have answers. Good for you on being proactive and having a back-up plan..I hate that so many parents view a Dr as a god and let them have total control of their child's health. :hug:

kellyw8863
01-09-2010, 09:07 AM
I think cardiology there in general is very conservative. I remember when Maya was a year old, we had her evaluated for severe FTT by both GI and cardiology, as heart defects run in DH's family. At a year, her ASD was 10mm and his assumption was that it was even bigger a year prior when she was first dx'd at another hospital. Despite the fact that Maya had fallen way off the charts, he still took a wait and see approach even though GI was insistent that the problem was cardio related. In the end, it ended up being a good choice and it was closed by the time she was 4, but I know what you mean about their conservativeness. Have you heard anything from Miami? Any more trip planning?:goodvibes

pnutallergymom
01-09-2010, 06:59 PM
So Brigge's cardiologist emailed yesterday to tell us they can't get her an MRI until February 16th:sad2:......given the state that she is in, it is concensus that this is just to long to wait. We are going to move forward with the cath first.

In Disney Wish planning news, I have gone ahead and made some ADR's:cool1:and a preliminary itinerary for the wish portion of our trip!!!

Our flights are great, leaving Manchester on April 24th at 10:40 with arrival in Orlando at @1:40pm. We will pick up the rental car and hit WalMart to pick up snacks, juice boxes and most definitely some adult beverages as well;)!!

We will probably head over to AKL, check in and unpack and maybe hit the pool for a little while and grab a quick bite to eat. We are planning on doing dinner at GKTW and Mayor Claytons Bday party...we have orientation at 7:45.

On Sunday April 25th I have ADR's at Donalds Tusker House for breakfast at 8:10...then we are going to AK for the morning and try to be back to the lodge by 1pm for a nap/pool...then we will do DHS for the evening.

On Monday I think we will try to do US/IOA for the day...I have ADR's at Chef Mickeys for 7:05, but will probably cancel that and either do the Hard Rock or Margaritaville for dinner. I know that the HR gives a discount for Wish Families, is it just on merchandise or is it food/beverages as well??

On Tuesday We will head to MK for Rope Drop:cool1:!!! We will probably stay here until early afternoon as well, and then head back to recharge for a bit....we have ADR's for Ohana (my favorite)at 6:25..then will head back into the park for Spectro and Wishes.

On Wednesday I am thinking this may just be a down day for us....not sure though. Thinking we will sleep in, do the pool for a while and then maybe go back to US/IOA for the rest of the night.

Thursday we will do breakfast at Boma and then maybe do Epcot for the day. We are planning to head over to GKTW for dinner and the Christmas Party.

After writing this down and looking at again, I may switch some of this around!! It is looking way to commando for me...I know we will have the extended part of our vacation to relax. I wish there wasn't so much to cram in during the wish part!!! Isn't that just a terrible dilemma to have:rotfl:!!!

Ok...looks like I have ALOT of tweaking to do!!!

pipersmom
01-09-2010, 10:51 PM
Woohoo for ADRs..Boma and Ohanas both sound so good to me! I'll be anxious to see what you thought! Your plans looked good to me, but you saw how much I have crammed into mine, lol. I thought yours looked pretty laid back ;) Awesome that you're going to take advantage of the things at GKTW.

I'm sorry you're going to have to go with the cath..every time Piper is put under it just bites, she does not come out of anesthesia well at all, and the respiratory risks involved..ugh. Keeping Brigitte and your family in my thoughts, hon :hug:

Momofwishkid
01-09-2010, 11:58 PM
:thumbsup2 It looks like your plans are coming along great! Your doing so many ADR's, thats awesome.
Im sorry about the cath and will be keeping Bridgette in my thoughts.

yinyanggirls
01-10-2010, 02:05 AM
It's so difficult to fit it all in! Tough decisions!
Does the WalMart carry "adult beverages"? Florida is technically "the south". I remember being so confused when we moved to Texas and the groceries didn't carry liquor. But the DRIVE-THRU liquor stores carried milk and eggs. :rotfl2:

pnutallergymom
01-10-2010, 04:17 PM
It's so difficult to fit it all in! Tough decisions!
Does the WalMart carry "adult beverages"? Florida is technically "the south". I remember being so confused when we moved to Texas and the groceries didn't carry liquor. But the DRIVE-THRU liquor stores carried milk and eggs. :rotfl2:

Melissa, that cracks me up!!!:rotfl2:

You can buy beer and wine at the Wal-mart there, but right outside (you can actually see it from inside Wal-Mart) is a small liquor store that carries everything else!!

After posting my itinerary the other day, I did go ahead and change quite a bit of it!!

4/24 Arrival Day check in at AKL then GKTW for dinner, orientation, Mayor Claytons BDAY

4/25 Boma breakfast 8:35
AKL/DHS

4/26 Universal/IOA

4/27 MK Ohana 6:25

4/28 Epcot 2:15 Le Cellier and maybe back to MK at night

4/29 US/IOA Kona Cafe 9:50am GKTW Christmas Party

4/30 SW Cape May Cafe 5:50


Do you guys know if the passes to US/IOA are park hopper passes??

This is still probably going to change a million times!!! I am waiting to hear back about our day of service and I am hoping we will be able to do that and get an extra day for one of the parks at Disney World.

yinyanggirls
01-10-2010, 04:54 PM
I believe they are hoppers. Pamela just posted her TR about US/IOA and they did two in one day and went back again the next.

pnutallergymom
01-11-2010, 09:28 AM
I finally figured it was time to put some faces to the names!! Hope you enjoy!!!
http://i669.photobucket.com/albums/vv51/pnutallergymom/September-28_0703.jpgBrigitte and I


http://i669.photobucket.com/albums/vv51/pnutallergymom/November-14_0923.jpgBrigitte





http://i669.photobucket.com/albums/vv51/pnutallergymom/October-30_1354.jpgBrenna, Jake, Sean and Brigitte

Momofwishkid
01-11-2010, 10:41 AM
Aww! What an adorable family you have. I love Bridgette's curly hair!

yinyanggirls
01-11-2010, 12:59 PM
Yay! Pictures! It helps me remember who's who, so thank you! I love the pumpkin patch shot.

pnutallergymom
01-12-2010, 02:15 PM
Not that I have alot of people following along my PTR :sad2:, but for those of you who are, Thank You :love:, and I wanted to let you know that Brigitte is going to have her second cardiac catheterization on Thursday Jan 21...the MRI is scheduled for February 16th. So things are headed in a good direction :)......finally!!!

I was happy to hear that you can get tickets to Aquatica from GKTW!! Have you looked online at their website?? It looks really cool :cool1:!! I think we might try to do that if we can squeeze it in!!

I'm glad you enjoyed the pictures of the kids!! Brigitte likes to sit in my lap and scroll through all of your PTR and TR and look at the pictures!! I showed her ours, and she said "Dat Me!!":rotfl: She loves looking at everything and she always wants to see Minnie::MinnieMo

Hope you guys are having a good day!! Thanks again for following along!!

yinyanggirls
01-12-2010, 04:05 PM
Tessa likes looking at this board also, but I think she likes the smilies the most. :lmao:

I hadn't looked at the website. I'm afraid I'll like it and then have even more things to squeeze in!

kellyw8863
01-12-2010, 04:22 PM
I'm following! It's just been crazy at work with exams and the end of the semester coming up, so I don't always get a chance to post. Thanks for posting the pictures - Brigitte looks exactly as I remember!

pipersmom
01-12-2010, 04:31 PM
Not that I have alot of people following along my PTR :sad2:, but for those of you who are, Thank You :love:, and I wanted to let you know that Brigitte is going to have her second cardiac catheterization on Thursday Jan 21...the MRI is scheduled for February 16th. So things are headed in a good direction :)......finally!!!

I was happy to hear that you can get tickets to Aquatica from GKTW!! Have you looked online at their website?? It looks really cool :cool1:!! I think we might try to do that if we can squeeze it in!!

I'm glad you enjoyed the pictures of the kids!! Brigitte likes to sit in my lap and scroll through all of your PTR and TR and look at the pictures!! I showed her ours, and she said "Dat Me!!":rotfl: She loves looking at everything and she always wants to see Minnie::MinnieMo

Hope you guys are having a good day!! Thanks again for following along!!

Woohoo for pictures..your family is so beautiful! I'm glad you're getting some forward progress on the medical front and will keep you all in my thoughts as the appts get closer. :goodvibes I haven't looked at Aquatica either..the site freezes up my dial-up..lol! Maybe today while I'm at Gram's!

Momofwishkid
01-12-2010, 04:53 PM
Not that I have alot of people following along my PTR :sad2:, but for those of you who are, Thank You :love:, and I wanted to let you know that Brigitte is going to have her second cardiac catheterization on Thursday Jan 21...the MRI is scheduled for February 16th. So things are headed in a good direction :)......finally!!!

I was happy to hear that you can get tickets to Aquatica from GKTW!! Have you looked online at their website?? It looks really cool :cool1:!! I think we might try to do that if we can squeeze it in!!

I'm glad you enjoyed the pictures of the kids!! Brigitte likes to sit in my lap and scroll through all of your PTR and TR and look at the pictures!! I showed her ours, and she said "Dat Me!!":rotfl: She loves looking at everything and she always wants to see Minnie::MinnieMo

Hope you guys are having a good day!! Thanks again for following along!!

Im so glad things are moving in the right direction :thumbsup2 I love following your report and your kids are sooo cute!
I was just looking at the Aquatica website today. I think were going to pass it up. It looks so cool but me being "Pooh" sized I think I'll stay out of a bathingsuit. :rotfl:

pnutallergymom
01-12-2010, 05:36 PM
Im so glad things are moving in the right direction :thumbsup2 I love following your report and your kids are sooo cute!
I was just looking at the Aquatica website today. I think were going to pass it up. It looks so cool but me being "Pooh" sized I think I'll stay out of a bathingsuit. :rotfl:

This is exactly how I feel!!! When we went last year, I felt so skinny...even got a 2 piece bathing suit :banana:!! This year, NOT so much :scared1:!! I started weight watchers yesterday...I am hoping to lose between 15-20lbs so I can actually feel good taking a picture!!! I figure 3.5 months should be plenty of time to do it!!!

Thanks you guys for all the compliments on the kids pictures. I LOVE them to death :lovestruc: even though most days I do want to hang them out with the laundry :laundy:!!!

maroo
01-13-2010, 09:25 AM
I am here! Just lurking!

Lots of people will be reading and not able to post - especially with all of the iPhones out there (easier to read than post on the small devices). :)

Momofwishkid
01-13-2010, 12:12 PM
This is exactly how I feel!!! When we went last year, I felt so skinny...even got a 2 piece bathing suit :banana:!! This year, NOT so much :scared1:!! I started weight watchers yesterday...I am hoping to lose between 15-20lbs so I can actually feel good taking a picture!!! I figure 3.5 months should be plenty of time to do it!!!

Thanks you guys for all the compliments on the kids pictures. I LOVE them to death :lovestruc: even though most days I do want to hang them out with the laundry :laundy:!!!

Im with ya, I want to lose 15-20 and only have 1.5 months to do it :scared1: yeah I have been procrastinating :goodvibes those dang holidays just ruined it. You should have plenty of time in 3.5 months. I have faith we can do it.:cheer2:

pacrosby
01-13-2010, 12:31 PM
Hey Shannon...............I'm lurking too!!! I'm so immersed in our TR that I don't post too much to other threads anymore but I'm watching (always watching:rotfl:).

Nice to see the px. It actually helps me keep everyone straight when I can put a face to a name.

Sorry to hear about the cardiac woes:hug: Are you planning on actually taking Bridgette down to Miami for a 2nd opinion or perhaps they will simply use test results and reports you already have. Matty's surgeon (the one from his first two open hearts) left right before his 3rd. I was bummed big time. Loved him.

Keep the faith


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

Applemomma
01-13-2010, 01:05 PM
I'm here too and praying for you!

Trip Report lurkers are like mice in the house....for every one you see there's 100 more! :rolleyes1

pnutallergymom
01-14-2010, 03:06 PM
Awwww....you guys are great!!! I was feeling lonely:lmao:!!!

Pamela, I sent all of her info to Miami last week. They were supposed to have "grand rounds" on her yesterday at 3pm and then get back to me today. Nothing like waiting by the phone all day :headache:!! I even had to call comcast to figure out how to use the call forwarding feature on my phone this morning so I could run out for a bit!! :lmao: You know how it is waiting for doctors!!! I am hoping that they will just give me their opinion and it will be exactly the same as Bostons. Guess we'll have some MAJOR decisions to make if they think differently and really think they can do something differently to "fix" her. We are ready to go down there though, if we need to.

Tonight, we are doing our Give a Day, Get a Day volunteer service. We are heading to a child care center from 6-8 to clean up and organize the toys. I will let you all know how it goes. The kids are excited!!

I posted this over on the main board, but for those of you who have already been on your wish trips, when were you given the "passport" for all of the other amusement parks?? I know that Water Country is one of them, and was thinking my kids would love to go there again this summer, but it is so $$$$$!! Can you go unlimited times or is just a one time thing??

Thanks you guys!!!

maroo
01-14-2010, 03:27 PM
You get the Passport when you check out of GKTW.

Not sure how they will handle that with you guys. Is GKTW full that week and you guys are in overflow? Or was AKL your request? I am not sure if GKTW makes a designation?

If you are overflow, I am almost positive you will get one when you do your check out procedures for GKTW. They had to mail ours, because Lauren was really sick and we never did get back to GKTW. :(

But if you are an AKL guest, then that may supercede if you are not overflow? I have no idea?

Either way, the Passport is constantly changing. The companies in there are volunteer and depending on what response they get from families, they may or may not continue to provide their benefit, if that make sense. So a company that is in there today may not be in there the next time they print it.

Most of them, I think, were one time only things...but some may have been more than one. :confused3

pnutallergymom
01-14-2010, 03:47 PM
Thanks Maroo!!

AKL was our request, but I also was told that it was full that week, so it worked out well for us!! Who knows, though!!

So tell me more about the "checkout" procedure at GKTW...were you guys supposed to have done that even though you were staying at the CR??

Thanks!!

pacrosby
01-14-2010, 09:47 PM
Just for a heads up - yes they are all listed as being for one visit only. Water Country was on our list in December as well as the NE attractions: StoryLand, Santa's Village, Splashtown USA (Maine) and Six Flags (Agawam) and Roger Williams Park Zoo (Providence). There's a fair amount in the Tri-State area (NJ/NY/PA) so if you were up for a weekend you could combine a couple and only pay for accomadations (that's what we are planning - I'm hoping for a very full spring/summer)

Of course maroo brings up another issue. You could call them upfront and find out rather than just wait and see.


Hey btw: I just noticed our time in WDW this Spring will overlap with yours (we'll be there 4/29 -5/4)!!



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

pipersmom
01-15-2010, 09:10 AM
Just checking in this morning, hoping you've heard something back from Miami and that you all enjoyed your volunteering! :hug:

pnutallergymom
01-15-2010, 09:21 AM
I haven't heard anything from Miami all day :confused:!! Hoping this morning. I sent an email to the surgeon this morning... Crossing my fingers!!

The volunteering was great last night!!! I was so happy to do it with the kids. They were wonderful :goodvibes...and I think really learned alot. I didn't tell them that we were getting a ticket to Disney for doing it. I didn't want them to think that they always have to get something in return for helping others, that sometimes it is just nice to do something for someone.

We arrived at about 5:45 and they put us right to work!! It was at a childcare center. We had to wash all the little chairs in the classrooms. Perfect job for the kids!! We were done by 7 and home in time to do meds, hook Brigge up to the pumps for the night, tuck them all in, and mommy got to sit and watch the Grey's/Private Practice crossover!!!! :happytv: All and all a good night!! Except for the fact that my husband conveniently got called for OT last night and didn't go :sad2:. Oh well!! I will let you all know how long it takes to receive our vouchers.

pipersmom
01-15-2010, 09:29 AM
I hope you hear from them today, I know how the waiting is! I'm glad you guys enjoyed your volunteer stint last night, and that you got home for Grey's/PP..I LOVE those shows! Mark & Lexie better get back together or I'm going to be :mad: ! I have to say though..Naomi & Sam's daughter getting preg..just a bit too predictable! We'll have to see what happens. ;)

cantwaittoseemickey
01-15-2010, 10:53 AM
I hope you hear from Miami soon hun((hugs)). The childcare cleaning sounds great. I wasn't able to find anything in our area.

I didnt know about the passports that is cool.

Momofwishkid
01-15-2010, 12:00 PM
Hoping you hear the news your looking for soon. I hate the waiting game.
Your volunteering sounds wonderful! I wish they had one like that near us.

pnutallergymom
01-17-2010, 07:41 PM
Thanks everyone for all the good wishes!!

We heard from Miami on Friday morning! I had been going crazy waiting, and then realized that I was being silly, sitting and waiting by the phone!

So, I called Comcast and figured out how to use the call forwarding feature and forwarded the calls to my cell! :idea:

I guess they had a HUGE video conference on Wednesday. It included 18 cardiologists, 3 Cardio-Thoracic Surgeons, and a handful of Anesthesiologists. I was impressed!! :woohoo: It has often taken me weeks, sometimes months to get a care conference for Brigge in Boston!! The conclusion is that they wouldn't do anything different than our team in Boston. I was very happy to hear this!! :banana: I think my biggest fear was, what if they come back with a totally different course of treatment, then what would we do?? :confused3

So, we are moving forward with our original plans. Brigitte has pre-op on Wednesday and then the Cardiac Cath is on Thursday. Keeping our fingers crossed that everything goes well. She is such a RockStar princess:, that I don't expect any issues!! If they just go in and take some measurements etc., we should be home on Thursday night...if they decide that they might dilate some of her arteries or even attempt to close the ASD, then we will likely stay overnight. They have a bed booked for her already.

Moving on to more important things ;), would those of you who have emailed Sea World with your special requests, mind sharing the email address you used?? TIA!!!

Momofwishkid
01-17-2010, 08:05 PM
Im so glad they got back to you and you git the news you were hoping for. Im sure that makes it easier to go ahead with the plans. I'll be keeping Bridgette in my thoughts.
As for SW we called but I have the e-mail of the woman who wrote us with the confirmation. Im assuming she is the the person who handles these things. I'll look it up and PM you.

kellyw8863
01-18-2010, 11:01 AM
Thanks everyone for all the good wishes!!

We heard from Miami on Friday morning! I had been going crazy waiting, and then realized that I was being silly, sitting and waiting by the phone!

So, I called Comcast and figured out how to use the call forwarding feature and forwarded the calls to my cell! :idea:

I guess they had a HUGE video conference on Wednesday. It included 18 cardiologists, 3 Cardio-Thoracic Surgeons, and a handful of Anesthesiologists. I was impressed!! :woohoo: It has often taken me weeks, sometimes months to get a care conference for Brigge in Boston!! The conclusion is that they wouldn't do anything different than our team in Boston. I was very happy to hear this!! :banana: I think my biggest fear was, what if they come back with a totally different course of treatment, then what would we do?? :confused3

So, we are moving forward with our original plans. Brigitte has pre-op on Wednesday and then the Cardiac Cath is on Thursday. Keeping our fingers crossed that everything goes well. She is such a RockStar princess:, that I don't expect any issues!! If they just go in and take some measurements etc., we should be home on Thursday night...if they decide that they might dilate some of her arteries or even attempt to close the ASD, then we will likely stay overnight. They have a bed booked for her already.

Moving on to more important things ;), would those of you who have emailed Sea World with your special requests, mind sharing the email address you used?? TIA!!!

I'm glad that you finally heard from Miami and that their recommendations mirror those of Boston's.:woohoo: It certainly makes it easier to move forward with difficult decisions when their seems to be a consensus that it's the right thing to do. We felt similarly when we scheduled Ali's airway reconstruction. Boston said it needed to be done, that we didn't have a choice, but we ended up going to MEEI. The surgeon there said not only did we not have a choice, but that it needed to be done NOW. It stunk, but it was certainly a relief to know that we were making the best decisions for her.

I know nothing about Sea World, and to be honest, I'm not even sure that we are going to go if we have to pay OOP for Gabe. It just doesn't seem like it would be worth the ticket price for him to go and feed the dolphins. But I'm interested to see what kind of plans you have up your sleeve. Maybe I'll change my mind!

Oh, and I love the whole TGM thing. I'm having a blast over there!

maroo
01-18-2010, 01:00 PM
Thanks Maroo!!

AKL was our request, but I also was told that it was full that week, so it worked out well for us!! Who knows, though!!

So tell me more about the "checkout" procedure at GKTW...were you guys supposed to have done that even though you were staying at the CR??

Thanks!!

Hi there! :)

I have been away from the DIS for a few days and just saw this question.

Yes, we were supposed to check out on the last day with GKTW.

But they didn't have a car on the last day...I had to drive Lauren's wheelchair back to MS - so they had no car. They had to ride Magical Express to the airport - so there was no way to get to GKTW. But, yes, we were supposed to check out at GKTW.

Since we couldn't...they just mailed us all of her checkout stuff and it included the Passport info. :)

So if they do it the same way, then you should get a Passport.

pnutallergymom
01-18-2010, 01:19 PM
http://i669.photobucket.com/albums/vv51/pnutallergymom/100_5788.jpg
http://i669.photobucket.com/albums/vv51/pnutallergymom/100_5796.jpg
http://i669.photobucket.com/albums/vv51/pnutallergymom/100_5830.jpg
http://i669.photobucket.com/albums/vv51/pnutallergymom/100_5844.jpg

pnutallergymom
01-18-2010, 01:22 PM
Sorry they were so big!! I have to figure out a way to resize them!!! But, on the bright side, you got an up close and personal look at the kids!!!! :lmao:

Momofwishkid
01-18-2010, 02:50 PM
Love the pics. Your so lucky you have snow! We havent gotten anything this year. Looks like the kids love playing in it.
By the way, I forgot that info for you. Sorry. Will get on that right now.

pnutallergymom
01-18-2010, 03:28 PM
Thanks so much Jennifer!!! Got it!! Glad you enjoyed the pictures!! Luckily, we have had a pretty mild winter so far. The snow looks so beautiful when it has freshly fallen!!

So, wanted to let you all know that we already got our vouchers for the Give a Day, Get a Day promotion!! We did our volunteer work on Thursday and I got the email today!! Just need to print them off and we are good to go!!!

pnutallergymom
01-19-2010, 10:16 PM
So I am writing to you live from the blue recliner at Boston Childrens :scared1:. Have a great view of the city tonight...

Brigitte spiked a fever today up to 101...so here we sit waiting for blood cultures and running a viral panel.

She is tachy, feverish, and just plain miserable :sad2:. We spent 4hrs in the ED watching Disney Parades...waiting for a bed. We are finally settled on what was our home for the first two and a half years....the cardiac floor.

I am SOOOOOO sick of this!!! The kids at home are hysterical. They don't do well when unplanned admissions happen. They boys do ok in there own quiet way, but Brenna just cries and cries...she misses her baby sister and her mom. :sad1:

At least I have a few days to get the rest of my ADR's in order. Thinking about checking out the DISigner board to make some family T-shirts.. Got nothing but time now!!

I can't wait to get to DISNEY!!!!

Momofwishkid
01-19-2010, 11:07 PM
:hug: Im so sorry Bridgette isnt doing well and I'll be keeping her in my thoughts for a quick recovery and also the kids at home. I know how difficult it can be on them.
Good luck with the ADR's. You should be far enough out to get everything you want. Keep us updated.

Thumper321
01-20-2010, 02:54 PM
:hug: I had lost your PTR thread until you posted on Amanda/Piper's PTR! I'm so sorry to hear about being in the hospital. It seems that Club Med is popular this week. In fact, I'm not completely sure that we'll avoid an admission with Aidan this week. His SPO2 is down, but that's a different story. I am glad to hear that things are moving forward as far as Disney goes. I'm subbing so I'll be able to stay updated a little better. Hugs, thoughts, and prayers for you, Brigitte, and the rest of the family! How long do you think they'll keep her? If it's going to be a while, I could send cards to Brigitte and siblings as well if it would help. It's hard on everybody when one is in the hospital.

kellyw8863
01-20-2010, 05:00 PM
I'm sorry that you guys are inpatient. Does the cardiac floor have private rooms? I think that's one of the biggest downsides of being picked up by CCS - most of their rooms are not private, and I hate sharing.:rotfl:

At any rate, I hope that cultures come back normal and that you guys are out of there soon.:hug:

pnutallergymom
01-20-2010, 05:10 PM
Thanks you guys!!

I hope Aidan can manage to stay home!!! THinking of you guys!!!

Kelly, 8east does have privates. We are in one because she is on Enhanced precautions...Lucky her!! Thankfully, she isn't in much of a playing mood so she isn't fussing to much about not going out and walking to the playroom. We have brought the toys to her, but she just wants to watch Mickey and Minnie. The sharing of rooms is one of the things I can't stand about CCS, amongst others!! So glad we don't deal with them that much. Luckily we have a great GI doc who really manages most of her care and we go to 9south and those are all privates. They are a little worried about her cardiac status thats why we came to 8E. This was our home for the first 2.5yrs of life, so everyone knows us!!!

She tested positive for RSV today. So we can at least stop the vanco and meropenem. They are still hopeful that the cath can happen tomorrow morning. As long as she has a decent night, and doesn't spike a temp, she will go to the cath lab in the AM. They are going to keep her tomorrow night too.

kellyw8863
01-20-2010, 05:34 PM
Ugh, that stinks about enhanced precautions, but at least you are in a private room. We've had pretty good experiences on the CCS floor (our worst has been general pediatrics), though the last time she was admitted, she was having a Go-Lytely clean-out and the charge nurse decided at 5:30 in the morning to move us to another room to a bed away from the bathroom to free up a "big kid bed" for an admit. I pretty much pitched a fit that they were going to move Ali, who was newly potty trained, to a bed away from the bathroom, and then expect her to make it there in time with her limited mobility, hooked up to pumps and IVs, and not poop in her pants. The charge nurse's response? We'll put her in a diaper. Because apparently the dignity of a four year old doesn't count. I told her to forget a diaper and get a mop instead because that was going to be her job for the next 36 hours. It's amazing how quickly after that they were able to find another big kid bed. But that's really the only sketchy experience we've had with CCS. Most of Ali's stuff is GI related as well, but unfortunately, her issues are always multi-systemic which rules out the GI floor for her. We used to end up either there or the neuro floor.

I hope that Brigitte's feeling better soon and that everything goes well with the cath tomorrow morning.

maroo
01-20-2010, 05:49 PM
Does Bridgett have any of those online e-card sites we can use to send cards? You may not want to give out enough info to send her one anyway (which I can totally understand) - but I would love to send her one if you would like! :) Brighten her day some! :)

Ugh, that stinks about enhanced precautions, but at least you are in a private room. We've had pretty good experiences on the CCS floor (our worst has been general pediatrics), though the last time she was admitted, she was having a Go-Lytely clean-out and the charge nurse decided at 5:30 in the morning to move us to another room to a bed away from the bathroom to free up a "big kid bed" for an admit. I pretty much pitched a fit that they were going to move Ali, who was newly potty trained, to a bed away from the bathroom, and then expect her to make it there in time with her limited mobility, hooked up to pumps and IVs, and not poop in her pants. The charge nurse's response? We'll put her in a diaper. Because apparently the dignity of a four year old doesn't count. I told her to forget a diaper and get a mop instead because that was going to be her job for the next 36 hours. It's amazing how quickly after that they were able to find another big kid bed. But that's really the only sketchy experience we've had with CCS. Most of Ali's stuff is GI related as well, but unfortunately, her issues are always multi-systemic which rules out the GI floor for her. We used to end up either there or the neuro floor.

I hope that Brigitte's feeling better soon and that everything goes well with the cath tomorrow morning.

Wow! GO MOM!!!

:woohoo:

pnutallergymom
01-20-2010, 06:09 PM
Thanks Maroo!! I don't think CHB does have one of those, but you can send messages to her from the www.childrenshospital.org site. There is a link on the home page to send an email to her!! She loves "mail"!! You are all so sweet.

Kelly, I have an ongoing "hate" relationship with CCS. Brigittte's issues are always multi-systemic too, but I pretty much refuse to deal with CCS anymore...I don't deal well with being told one thing in clinic and then having something totally different happen with the new "team" on the floor. I actually utilize the PACT team mostly and they have been very helpful. So I end up being Brigitte's case manager, which is exhausting at times, but nobody knows her like I do and nobody ever will!! And I especially hate 9East for the exact reasons you do!! We did a two week stay in the spring there and although we never moved, we had multiple roommates almost every night and always at 2-3am. They are impossible to deal with.

kellyw8863
01-20-2010, 06:34 PM
Thanks, Maroo. You know who I have to thank for that? Christine. I've always been two steps behind her in terms of dealing with things, and she's been a God-send in terms of helping me advocate for Ali.

Shannon, I think that must be when I met you and Brigitte. Ali had her GT placed in May - does that sound about right? Jessica and Christine were also inpatient at the time. Who is Brigitte's CCS doctor? We are very, very lucky in that we have Dr. Berry, who is wonderful. He has been there for us night and day. There is no way we could do without CCS at this point, because we need someone to coordinate her care with Dr. Korson over at Floating. It stinks having her team split between two different hospitals.

DisMomAmy
01-20-2010, 09:10 PM
Hi Shannon! I followed you over from Amanda & Piper's PTR. I'm also from NH and we'll be at Disney the same week as you guys. Looks like we might have some of the same parks planned on the same days. (I use Tour Guide Mike too.) :thumbsup2

Your family is beautiful! I'm excited to count down to April with you.

Good Luck with Brigitte's current hospital stay... :goodvibes

pnutallergymom
01-20-2010, 09:42 PM
Kelly, we see Dr. Berry too. Its a really long story..I had a post all written out and then the wireless went down here at the hospital and I lost it!!! GRRRRRR....He is a great guy, just when Brigitte was having ALOT of issues and we were trying to figure out how/when to place the CVL, his wife had just had her baby and he just wasn't totally there for us. I understand, but the ball was dropped in alot of ways and it made a stay which should have been only a few days, turn into a few weeks. Its not just him though, we have issues with lots of doctors who want to just lump Brigitte into the "she has noonan syndrome, so it has to be this way" camp...when in reality, she doesn't play by the NS rule book and can't be treated as such. The general concensus from most of her doctors and genetics is that she also has an undiagnosed disease in addition to the NS and CP.

Amy, welcome!!!! Thanks so much for dropping by. I am going to catch up on your PTR right now!!!!

pacrosby
01-21-2010, 03:19 AM
OH NO So sorry to hear about your admission. I see these beautiful px of smiling faces in the snow and then.................. Hope Bridgette is feeling better.:hug:

You did say you're on the cardiac floor right? Is Maura one of your nurses?? If you get her be sure to tell her Matty Crosby says 'hi' ! She's known Matty from the beginning, 7 yrs ago. We saw her last 1/1 when we went in for Matty's birthday.

I've been away from the boards for a couple of days, Need to get caught up!



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

Applemomma
01-21-2010, 08:07 AM
Hi,

I've been lurking but just wanted to say I'm sorry about being stuck in the hospital again. Hopefully today things will look up! :hug:

Dawn

maroo
01-21-2010, 10:44 AM
Will you PM me the info I need to send her a message? I will need her full name, right? You can send via PM to protect your privacy...if you want. :)


Thanks, Maroo. You know who I have to thank for that? Christine. I've always been two steps behind her in terms of dealing with things, and she's been a God-send in terms of helping me advocate for Ali.


I am so glad. It is such a small world!

OH NO So sorry to hear about your admission. I see these beautiful px of smiling faces in the snow and then.................. Hope Bridgette is feeling better.:hug:

You did say you're on the cardiac floor right? Is Maura one of your nurses?? If you get her be sure to tell her Matty Crosby says 'hi' ! She's known Matty from the beginning, 7 yrs ago. We saw her last 1/1 when we went in for Matty's birthday.

I've been away from the boards for a couple of days, Need to get caught up!



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

WOW! :eek: Talk about a small world!

pnutallergymom
01-21-2010, 12:04 PM
Hi everyone!!

Some have asked about sending Brigitte and E-card...if you would like, please feel free to send it to my email address. pnutallergymom@yahoo.com

You are all so kind. Thank you again!!! She would love it!!

Pamela,

Maura says hello!! She has been our nurse forever too!! Luckily, she has been on the last few days and has been assigned to Brigitte!! Gotta love the 8E and 8S nursing staff!!!

yinyanggirls
01-21-2010, 01:01 PM
UGH! I HATE RSV!!! Phoebe had it in January, seven years ago. She was just a baby. I have to say out of all the admissions and surgeries and stuff, our stay for RSV was the worst. Shouldn't have been such a bad ordeal. Hope she's over it FAST!!!!

Thumper321
01-21-2010, 04:41 PM
This is from Brigitte's Care Page. I hope Shannon doesn't mind me posting it here. I just thought more prayers and positive thinking couldn't hurt.

Hi everyone,

She just went back about 5min ago. It took ALOT of ketamine to get her sedated enough to leave Bryan and I. They are more and more amazed at how high her tolerance is.

They are going to try and do as much of the procedure with as much conscious sedation as possible. If they end up having to any "interventions" and she needs to be intubated, then they will. There is a big concern that if she needs to be intubated it will irritate her enough that she will need to stay on the vent and will go to ICU...and there aren't any beds available in CICU, so she would have to go to 11south, which is just the "general ICU".

We will get an update every hour from her nurse, Erin. As long as the wireless stays up...I will update the CP...

Love,

Shannon

pnutallergymom
01-21-2010, 09:36 PM
Thanks Miranda!! I don't mind at all!! I LOVE this board. You guys are all so great and totally "Get It"!!

As you may know, Brigitte is back on the floor, resting comfortably.

We did get very surprising news. It turns out she doesn't have a right coronary artery or any of the vasculature that goes with it.

Now the waiting game begins as to what we do about it!!

Thank you all for your outpouring of support. It means so much.

xanphylus
01-22-2010, 01:11 PM
Hello! I am yet another lurker on your PT! :goodvibes I sometimes come out of lurking... and here I am! I have been praying for you guys and just wanted to let you know that there are more people than you know who are thinking about all of you guys and your precious kids!! Hope all goes well!

pnutallergymom
01-22-2010, 01:19 PM
Hi Everyone,

Just wanted to let you know that Brigitte is HOME!!!! :cool1:

She is napping right now...and is pretty tired!!

Cardiology is taking a lets "watch and wait" approach in regards to the missing coronary artery. Seems as if the left side has taken over and made its own network to take care of the whole heart. It may create issues down the road, but for now we are perfectly content to be waiting!!

Thank you all SO MUCH for all of your support, prayers and love. :) I LOVE this board. You guys are great!!!! :grouphug:

Thumper321
01-22-2010, 01:34 PM
I am soooo glad to hear that Brigitte is home and that the absent coronary artery isn't an immediate threat! We're on our way to the doctor now, but I wanted to tell you I'm glad you're back!:hug:

Momofwishkid
01-22-2010, 04:23 PM
:cool1: Im so glad you guys are home and Bridgette is doing well.

cantwaittoseemickey
01-22-2010, 07:13 PM
Im so glad to hear Bridgette is home and doing well. Please tell her she is in our thoughts. Glad to hear the other side is helping. We hope and pray there are no problems in the future. hugs!

pacrosby
01-22-2010, 09:55 PM
Glad to hear you guys are home and that Bridgette is feeling better. Matty's got one of those 'watch and wait' issues going on with an aortic arch that is folded over on itself (in addition to all the other obvious issues that come with living with 1/2 a heart). Kind of a double edged sword isn't it? So glad that they aren't actually choosing to go in and do something now, yet kind of fearful of the potential that still looms in the distance. Can't spend time worrying about the what-ifs though right? Let's focus on the positive:) Give that girlie hug for us!!!


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

kellyw8863
01-23-2010, 07:45 AM
I'm glad you guys are home.:hug:

Applemomma
01-23-2010, 09:35 AM
Glad you're home! That must make your other kids pretty happy too. :hug:

dmbfan
01-25-2010, 07:11 PM
Just reading this now, sorry that Brigitte ended up in the hospital, however I am glad your home now. Hope she feels better soon.

cantwaittoseemickey
01-25-2010, 08:35 PM
Checking in to see how Brigette is feeling:grouphug:

Thumper321
01-26-2010, 11:00 AM
Is everything okay? Haven't heard anything since Brigitte got home. Hoping that you've just been too busy to post, and that nothing's wrong. :hug:

pnutallergymom
01-26-2010, 11:09 AM
Awwww...you guys are all so sweet!! :goodvibes

Things are of course crazy here!! Jake was home sick yesterday :sick:, and I have Sean and Jake home today. Jake has bronchitis and started some zithromax yesterday...and Sean, well....I think he just missed his Mommy last week :love:!! He does have a cough and needs a rest day so his asthma doesn't flare up!! Miss Brigitte went back to school this morning!! :banana: She has to have her IVIG infusion as soon as she gets home....blah!!!

What have we been doing??? Looking at Food Porn on the restaurant thread, making more ADR's, and ordering some pillowcase dresses off of Etsy for the girls to wear to Disney!! Now the boys have me hooked on the DisIgns thread and want some Mickey Patriots/Red Sox/LongHorns shirts....aye, aye, aye!! So trying to figure out how to make or buy those!!! I am also obsessed with the Tie Dye Mickey Shirts!!! So, I think some basting and dying is in our future :rotfl2:!! I love how they look....and my DH has even agreed to wear one on our trip!! How is that for picking shirts to have that MAW button stand out????

Oh....and I got an email from the Littlest Heroes Project!! Hoping to coordinate something while we are down there!!! With our luck, it will rain! :lmao:

I will try to update later with our list of ADR's!! Did I mention we LOVE to eat???? I have had the hardest time figuring these out!! Everything just looks sooooo good!!! :cool1:

dmbfan
01-26-2010, 02:00 PM
Oh....and I got an email from the Littlest Heroes Project!! Hoping to coordinate something while we are down there!!! With our luck, it will rain! :lmao:

We did this when we went on Jake's trip. Our lady was AWESOME and it did rain..:rotfl: but they all still came out amazing ( she also did the picture in my siggy) If you do not have a name of one yet, let me know I am can send Shawna's information.

Hope the other kids start feeling better soon too.

Momofwishkid
01-26-2010, 03:47 PM
Oh I hope the kids are better soon. :hug: :yay: the littlest heroes project sounds amazing. Im thinking of looking into it after we get back from Disney. We definetley want to see pics when you get back.

kellyw8863
01-26-2010, 07:54 PM
I'm sorry the sickies have hit your house.:hug:

I can't wait to see your ADRs!

pacrosby
01-26-2010, 11:09 PM
sorry to hear the kids are not feeling well. I've been in bed all day myself.............hoping it doesn't spread to someone else (you know how that goes).

Keep up the planning. And if you don't mind my ignorance.............what the heck are 'pillowcase dresses'???? You can only imagine what vision that conjures up in my head: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 Man" http://www.disboards.com/showthread.php?t=2356739

pnutallergymom
01-27-2010, 08:37 AM
LOL!!! :rotfl2:

Pamela, here is a link to a pillowcase dress!!
http://www.etsy.com/view_listing.php?listing_id=38184522

I think they are adorable! Nice and comfy in the heat. In the winter you can throw a shirt on underneath. When they get to small to wear as a dress, you can wear it as a top!!

I don't think I am going to get a day without kids yet this week! Brenna is home today with conjunctivitis!! :scared1: How fast before that spreads to the rest of them?? :sad2:

Tonight we are going to Disney on Ice Princess Classics!! We are really excited!! The boys, ummmm....not so much. :confused3 We got tickets from the Starlight Foundation. Another great organization!! I will try to get some good pics, and post them tomorrow!!

On another note, I am starting to get a bit nervous about all the character ADR's I've booked. I know I can cancel if I need to if the first one doesn't go well. My fear is Princess Brigitte! She LOVES to look at the characters from a distance, but the second they come near her, the screaming begins :scared1:!! It makes me happy to see her having age appropriate reactions, but I really want her to like them!! LOL!! Thinking it isn't going to happen! Oh well..:rolleyes:

Hope you all have a good day today!! :goodvibes

noahsketomom
01-28-2010, 01:30 PM
Hi Shannon,

I was so glad to find your PTR! Hello from a fellow new englander! Our kids are almost the same ages also! You guys are going just after us. I'm so sorry to hear about all the illness. Hope you guys have been through the worst of it!! You have a beautiful family --- Bridgitte's curls are gorgeous!!!

Thanks for sharing your planning with us -- you guys deserve to have a RESTFUL and FUN time!!!!

Best,

dmbfan
01-29-2010, 09:43 AM
Hey Shannon, did you find a photographer for your Littlest Hero Project for your Disney trip?

pnutallergymom
01-29-2010, 10:11 AM
Hey Shannon, did you find a photographer for your Littlest Hero Project for your Disney trip?

Christine,

You must be reading my mind!! I was going to PM you this morning...and well, Brigitte happened!! :rotfl: And now we are getting ready to head to the Pedi at 11. This RSV is kicking the you know what out of her!! :sad2: She hasn't slept in a few days....you know how it is!! So hoping we can get some abx for her (green, nasty runny nose)...and get her on her way!!!

So, I am PM'ing you now!!:) Before I forget!! I have a feeling that we will be having quite a quiet weekend and that will give me plenty of time to research photographers and all things Dis!!! :cool1:

cantwaittoseemickey
01-29-2010, 02:32 PM
Oh I hope everyone feels better soon! We had heard from Littlest Hero's as well but once I submitted my photographers I never heard back from them so I just gave up:(

Momofwishkid
01-29-2010, 02:36 PM
Hoping your pedi appointment goes well and you get some abx so Bridgette gets better soon.

DisMomAmy
01-29-2010, 03:59 PM
I'm glad Brigitte is home & back to school! Sorry to hear everyone else is getting sick! Did you have fun seeing the princesses this week?

pacrosby
01-30-2010, 12:48 AM
YIKES on the green nasty runny nose (or should I say YUCK............even with 4 kids I've never gotten used to that stuff :eek:). Hope Brigette is on the mend quick!!!


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

pnutallergymom
02-02-2010, 01:31 PM
So, are the rest of you as obsessed with all of this planning as I am?? :confused3 I can't seem to tear myself away....Like right now, I should be in the shower...but I just can't...I just can't stop thinking and planning and thinking and planning...and following and reading, and following and reading!!! I LOVE it!! It is SOOOOO helping to countdown the days, which are at 81 right now!!! Woooo Hooooo!!! :cool1:

Ok, so here it is, I haven't even finished planning this one, and already my mind is on to another!!! I'm thinking of applying my GAD/GAD pass towards an AP...think "trip in early December"!! We could get the AP rates then, plus get a TIW card and use it for this trip saving some $$$ on our ADR's!! My husband is shaking his head, much like you proabably are!! See my mind is all Disney all the time!! :lovestruc

So, having said that....I am revamping all of my plans!! Brenna and Jakes birthdays are April 16th and May 10th...our trip is right in the middle of it. We usually combine the kids birthday parties, so I will probably have theirs before we go away...thinking weekend after Easter!! They need and want for nothing!! Not any thanks to their father and I....we both come from divorced parents which = LOTS of Competition as to who gets the best gifts. Ridiculous, I know...but they don't stop, so I don't bother to fight the good fight anymore. I am going to turn it into a positive this year and have them buy the kids 3day park hopper passes. We'll apply their GAD vouchers towards the tickets and that will help!! That way we can use them on the extended portion of our trip!! This will allow for more rest days and some extra time at US/IOA!! I will probably have the rest of the family get the kids Disney GC's since their are no longer Disney Dollars and they can use that as their spending money. I have to honestly say though, we had to convince them to pick out some special souveinir the last time we went. They didn't even ask for anything.

So as of now, I have the following ADR's planned....


4/24 GKTW for dinner and orientation

4/25 Boma Breakfast/AKL in the AM/naps and pool/ EMH hours for MK at night open till 2am!!!

4/26 NO ADR's sleep in for a bit in the AM...US/IOA, early dinner at HRC

4/27 MK day/dinner at Ohana

4/28 Chef Mickeys Bkfst..celebrate Brenna's Bday/Rose and Crown at 7:50 for Illuminations

4/29 Kona Bfast 9:50 pool day/Aquatica (if we can get tix) GKTW Christmas Party

4/30 SW/US/IOA play it by ear day...have to check out at GKTW and return rental car...Cape May Cafe 5:50 Move to Swan

5/1 pool day ESPN Club for Dinner

5/2 HS/Epcot Il Mulinos 6pm possible Littlest Hero Photo Shoot---hoping to do this near the Boardwalk/beach at sunset.

5/3 pool day play it by ear, maybe dinner at Big River Grille

5/4 Crystal Palace Bfast/celebrate Jake's Bday/MK/ Grand Floridian Cafe for dinner 5:30

5/5 Ohana Bfast/Celebrate Seans Unbirthday/ depart MCO at 6:35pm



I don't know!!! I am just too excited, there is so much to do!! When it comes right down to it, all of these plans will probably go right out the window and we will just wing it and ENJOY!!! Whatever the kids want to do!! Which will likely be just swim all day!! Fine by me!!!


Oh yeah, I got my dental floss and sewing needles so I can put a basting stich on the Tie Dye Mickey Shirts!! This ought to be interesting......:scared1: I am the least creative person on the planet!!! Stay tuned for pictures!!

Almost forgot too...Princesses on Ice. Brigitte was less than impressed with the princesses. WHAT?????:confused3 She LOVED :lovestruc Mickey and Minnie though!! She was yelling for them the ENTIRE time!! "I Want Em'" "I want to Hug em"!! It was a riot.....:rotfl2: I can't wait to see her in Disney!! I will try to get some pictures soon, but I have got to get in that shower!!!!!

DisMomAmy
02-02-2010, 02:26 PM
I'm glad to hear Brigitte enjoyed the Princesses on Ice - even though she didn't love the princesses!

I hope everyone is feeling better at your house!

You're so funny! I'm doing the same thing with the AP... My thought is, if I get an AP, we can save on parking and we can get the TIW card. I'm trying to figure out if the TIW card will be worth it for us. Can you get a TIW card at one of the parks? I was reading about ordering them, but I wouldn't have an AP until I get there since I will be using my GAD voucher. Hmmm...

The other reason behind an AP is that next year's school calendar has been published & Easter is late so April vacation is right after Easter - not a great time to visit WDW. Way too crowded for us! Our February vacation is going to start Feb. 28th - way after Pres. week. Maybe we should plan a trip for February next year? :confused3

I have to talk it over with DH because he'll probably just think I'm crazy! :laughing:

Needless to say, I'm right there in the crazy planning zone with you. :goodvibes

78 days until Florida sunshine! :banana: 82 days until Disney! :banana:

noahsketomom
02-02-2010, 03:43 PM
Shannon,

You are not alone in your planning! I have 2 weeks to finish my CE requirements for my nursing license (which I am not using out side the house:rolleyes1), a mountain of clean laundry to put away :sad2:), gobs and gobs of lesson plans and recipes to make :headache::headache:, and (of course) four kiddos that are probably dressing up the dogs right now :scared1:, but I'd rather do "research" on our trip than any of those things!!

Planning central here.....with a sizable dose of procrastination as well!! ;)

Your plans sound sooooo exciting! How great that you will have the extra days to really savor it all!!!

Blessings to you and yours!

dmbfan
02-02-2010, 09:47 PM
I have 2 weeks to finish my CE requirements for my nursing license

Very cool...where are you going? I am in a nursing program too and I LOVE IT...won't finish until next June, but I am going part time.

Shannon...I don't know how you all plan for these Disney trips...I tried for Jake's and it just did not work the way I wanted it too...:rotfl2: So this time, I told Jake and Hannah to come up with a list of rides that we did not go on last year...and that has been keeping them pretty busy...I figure with US/IA out of the picture this time, we will get alot done...of course I say that now...but who knows...with two night volunteering at GKTW, that does take away some, but SOOO worth it...and the main reason we are doing this trip back to Disney so soon...:woohoo:

pacrosby
02-02-2010, 10:39 PM
Count me in as yet another obsessive Disney planner!!! And from me, the quintessential 'wing-it' woman...................I've never planned a trip in my life and still won't UNLESS it's to Disney. I generally love to just fly by the seat of my pants but I can't imagine I will ever not plan a Disney trip....there's just too much to do and too much to see and still soooo much I don't even know about. Today I started planning for our Spring trip and then when we come back from that I intend to start thinking about our December trip. My house will never get cleaned:rotfl:

Funny that Brigette isn't taking to the princesses. Don't give up you've still got time for some successful brainwashing:laughing:


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 Man" http://www.disboards.com/showthread.php?t=2356739

Momofwishkid
02-02-2010, 11:16 PM
Ohh Your plans sound great! I so wish we had time for a lazy, swimming day! I am so with you on being obsessed with the planning. I am on here way to often.
Disney on Ice sounds so cool. Do you have any pics??

cantwaittoseemickey
02-03-2010, 06:49 AM
Add me in there too! I have been reading and reading and reading these boards :rotfl2: Im trying to fit a pool day in as well. I think I will do the first and last day. I have dtd on the last day but not sure we will really "need" to go there.

noahsketomom
02-03-2010, 08:25 AM
Very cool...where are you going? I am in a nursing program too and I LOVE IT...won't finish until next June, but I am going part time.
:

Dmbfan -- That is awesome that you are going too!! I loved it! I actually graduated 4 years ago, but was pregnant and with four kids under 6? No chance of me working then. Now with Noah's medical needs and homeschooling, I'll be keeping my practice to just the 4 patients I already have....;) That said, I still want to keep my license active, so you have to do CE's every 2 years. Mind you, you have TWO YEARS to do them.....but mine are due in 2 weeks :eek: and I just finished my first one. Why oh why do I procrastinate so???
:rolleyes:

Oh, wait, Shannon...isn't it because we would rather keep planning our trips?? :yay:

Mickey has that way about him!! :mickeyjum

pnutallergymom
02-09-2010, 08:09 PM
Hi everyone!!

Just wanted to let you know that we are all still alive and kickin'!!! Nothing new has been going on.....just staying busy!!!:)

I haven't had any contact with our MAW reps, so nothing new is transpiring!! Just counting down the days. We are sooooo excited. :banana:

It really will be here soon. Brenna and Jake are keeping us busy. Brenna is involved with and All-Star Cheering squad and has 3 competitions coming up!! Jake just tried out for an AAU baseball team..he did make it. So that means practices twice a week. He is in a 3 day tournament in RI at the end of March, then 2wks later another 3 day tournament in NY. Yikes!!! :scared1:

So, lots of things to keep us occupied and making the time go by faster!!

Miss Brigitte is doing well. She gained a bunch of weight last week, but managed to lose it all and more when we weighed her this week. I just can't figure it out. I was so hoping we would be able to have her central line pulled by the time we went to Disney, but its not looking that good anymore. :sad1:

I have been working my butt off trying to lose some weight before this trip and am very happy to say I have lost 10lbs.!!! :woohoo: I feel great!! It has given me so much incentive to stick with it and keep going!! If I could lose another 10, I would be thrilled!! Fingers crossed!!!

I am enjoying following eveyones PTR's...can't wait to finally get another TR from a wish family soon!!!

pnutallergymom
02-10-2010, 03:25 PM
Me again!!! :goodvibes

So, Brigitte's MAW co-ordinator called today to let me know about our accomodations at AKL!! I almost fell on the floor :rotfl:!! We are staying in a 2br Villa at Kidani Village. :dance3: :cheer2: I seriously can't even believe it!!

This makes packing etc....so much easier!! I am seriously going to get all 4 kids things in one suitcase. I LOVE that we have the washer and dryer now!!

I am simply thrilled!! Just wanted to share!!

kellyw8863
02-10-2010, 03:36 PM
That's awesome!:cool1::cool1::cool1:

Momofwishkid
02-10-2010, 04:06 PM
:cool1: That sounds fabulous!! Sorry about Bridgette's weight loss. I hope they can get it worked out. :hug:
:banana: good job on the weight loss. I've been working out like crazy but havent been weighing myself.

yinyanggirls
02-10-2010, 04:32 PM
Great job on the weight loss. I can't seem to get past where I am but not giving up yet.
What great accommodations! Having the ability to wash certainly makes things easier too.

DisMomAmy
02-10-2010, 09:12 PM
That's so exciting!! I can't wait to see AKL! I've never been there, but we'll be visiting for dinner in April. Congratulations!! :cool1:

cantwaittoseemickey
02-11-2010, 01:25 PM
:cool1: Ooh I can't wait to see pictures of AKL! We are getting ready to work on losing weight too! I have gained more wieght this winter arg!!

I would love to hear your secrete on packing 4 kids worth of things into one suitcase even though they have a washer and dryer;) Please do share. I was bursting just with 2! lol I am not a good packer:rotfl2:

dmbfan
02-11-2010, 11:18 PM
whooo hoooo....that is great news about your room at AKL...:cool1::cool1:

Mtopher4
02-12-2010, 06:21 PM
That's AWESOME about AKL :-) I was just reading your posts.. My daughter, Ashley, with Apert Syndrome is getting a wish on a Disney Cruise :-) Still waiting on dates for this Spring :-)

pnutallergymom
02-16-2010, 04:00 PM
Ok you guys...so I am not one to typically freak out about things. I'm pretty laid back most of the time....some have said "too laid back"!!!

Anyway, I need some reassurance from all of you to get me off the ledge right now!!! :scared1:

We are leaving for Brigitte's wish trip the first day of NH school vacation week....In other words, Manchester Airport is going to be a nightmare!! We have been blessed to get a direct flight down at a great a time...leaving MHT at 10:40, arriving MCO at 1:40pm. BUT...its on Southwest!!! The flight is completely sold out. I HATE their "open seating" policy....and apparently so does their customer base. They have implemented an Early Bird Check In...but of course for a fee..10.00 a person to get priority boarding passes. I have an email into our MAW chapter to see if they did this for us or not. Having said that...I know that I will be able to pre-board with Brigitte since she is handicapped, and also with Sean (6) who has peanut allergies. Severe peanut allergies. We typically try to get the front row of seats to limit his exposure to any other passengers possibly bringing peanut products on the plane. Sitting here isn't a guarantee though..like I said, we've gotten "lucky" before. This also means that Bryan and the other 2 kids will have to wait and board between the A and B group...liklihood of getting 3 seats together, pretty slim. I don't feel that Brenna (9) is really old enough to sit alone, and even if she was, she wouldn't be comfortable sitting by herself.

Ugggghhh!!! I hate this!! I have heard of the nasty looks people get by getting preferential treatment in the parks..and I would imagine that it would be even worse at the airport. Do you know if the airlines (or specifically SW) make exceptions for Wish families?? I plan on having all of us wearing our MAW shirts (hint, hint..wink, wink) to the airport....but just wanted to see if anyone had any experiences with this???

It will likely turn out fine..it is what it is, right?? I just wondered!!!

Thanks!!

DisMomAmy
02-16-2010, 04:09 PM
We almost always fly Southwest out of Manchester & have been able to pre-board our whole family (just 4 of us) based on Alex's autism. I didn't realize they would split up the family and have half pre-board and have the other half wait.

I suppose you could pay the early-bird check-in for Bryan and the other two kids... :confused3 If you check-in online right at the 24 hour mark you should be able to get "A" boarding passes... but I might be nervous about it too, now that they offer early check-in.

Can you pre-board 3 of you and take up two rows... I suppose you'd have to let someone sit there if they asked, but most likely, if you look like you are still getting settled in, people will walk right by you seeking an open row.

I know what you mean about the looks... I always make sure I have on some sort of autism awareness clothes (shirt or hat) or carry my "I love someone with autism" bag. Good plan to wear the MAW shirts!

Good Luck!! We'll be flying out a couple days ahead of you on Thursday.

Momofwishkid
02-16-2010, 04:59 PM
Hi Shannon, I dont know what to say as I am not really a flyer. I didnt even know they had open seating. :confused3 I would think that they would work with you somehow to make sure the kids are all seated with a parent at the very least. I hope you can get it figured out and MAW did get you the early boarding. :hug:

Thumper321
02-16-2010, 06:48 PM
Let them know you are a Wish Family when you get to the gate. I know that not only do they sometimes let Wish families board first, but the pilot will often recognize the wish kid during the flight. I'd just nonchalantly tell them that my child is special needs and on her wish trip and ask if the family will be able to board toward the beginning. Never hurts to ask, right?

yinyanggirls
02-16-2010, 11:48 PM
I would try to get to the airport at the acceptable time, before it gets crazy busy at the desk. Talk to the person about the two special needs and your need to pre-board both parents, one with each kid. Obviously you can't have unattended children waiting alone to board. You should be fine.

Princess Polamalu
02-17-2010, 12:56 AM
Hi Shannon,

Just started reading tonight and your familys story is heart wreching. Your original post brought tears to my eyes. Im so sorry for your daughters health conditions but I am so happy that you all are getting this oppurtunity through MAW. It will be such a wonderful experience for all of you Im sure. Im excited to keep reading and find out how amazing this vacation will be for you all in the end!!!

kellyw8863
02-17-2010, 08:31 AM
Ok you guys...so I am not one to typically freak out about things. I'm pretty laid back most of the time....some have said "too laid back"!!!

Anyway, I need some reassurance from all of you to get me off the ledge right now!!! :scared1:

We are leaving for Brigitte's wish trip the first day of NH school vacation week....In other words, Manchester Airport is going to be a nightmare!! We have been blessed to get a direct flight down at a great a time...leaving MHT at 10:40, arriving MCO at 1:40pm. BUT...its on Southwest!!! The flight is completely sold out. I HATE their "open seating" policy....and apparently so does their customer base. They have implemented an Early Bird Check In...but of course for a fee..10.00 a person to get priority boarding passes. I have an email into our MAW chapter to see if they did this for us or not. Having said that...I know that I will be able to pre-board with Brigitte since she is handicapped, and also with Sean (6) who has peanut allergies. Severe peanut allergies. We typically try to get the front row of seats to limit his exposure to any other passengers possibly bringing peanut products on the plane. Sitting here isn't a guarantee though..like I said, we've gotten "lucky" before. This also means that Bryan and the other 2 kids will have to wait and board between the A and B group...liklihood of getting 3 seats together, pretty slim. I don't feel that Brenna (9) is really old enough to sit alone, and even if she was, she wouldn't be comfortable sitting by herself.

Ugggghhh!!! I hate this!! I have heard of the nasty looks people get by getting preferential treatment in the parks..and I would imagine that it would be even worse at the airport. Do you know if the airlines (or specifically SW) make exceptions for Wish families?? I plan on having all of us wearing our MAW shirts (hint, hint..wink, wink) to the airport....but just wanted to see if anyone had any experiences with this???

It will likely turn out fine..it is what it is, right?? I just wondered!!!

Thanks!!

I have similar concerns, particularly since I HATE flying and can't imagine being solely responsible for the girls should we get separated. I think we may just suck it up and pay the $10/person fee to guarantee that we are all together. Though it stinks - I feel like we should all be together by default, but whatever. There are just as many other families who could make the same argument. I think Christine just flew Southwest, so I'll be interested to hear of her experience when she returns.

I hope that you guys are all doing well!:grouphug:

pnutallergymom
02-17-2010, 02:02 PM
Thanks you guys. I guess I am concerned mostly because we have flown SW before....Not a huge fan.. but it works for us. MHT is literally 5min from my house. Pretty much a no brainer.

I did run into an issue when we flew with them last year....hoping it was just a fluke thing and that the gate agents/flight attendants were just having bad days. The whole process is much like a cattle call....literally.

I am just expecting this to be that much worse due to it being the first day of NH school vacation week.

I heard from our MAW chapter and their advice was to just wear our shirts and buttons and "hope" for the best. Guess thats all we can do!!

Our flight is at 10:40....so when they come around for drinks, you can be sure I'll be getting my Bailey's on the Rocks!!! It will be 5 o'clock somewhere, right!!! :banana:

jenb1023
02-17-2010, 07:33 PM
I was home sick today and have been using that time to catch up on all of the PTR's I am subscribed to but haven't had a chance to read. We stayed at AKL and loved it there! Way to be Brigitte's advocate - you are right - no one knows her better than you do. I never fly SW but my two cents would be to go up to the gate and say something like - We have a special needs child and are going on our make a wish trip and I just want to confirm that our entire family can pre-board together. Put it out there and make them tell you no - I bet they won't do it.

yinyanggirls
02-18-2010, 02:35 AM
Our flight is at 10:40....so when they come around for drinks, you can be sure I'll be getting my Bailey's on the Rocks!!! It will be 5 o'clock somewhere, right!!! :banana:

I love Baileys. Especially with a little vodka in it. :thumbsup2 After your airport experience, you just might need that extra kick. :lmao:

pacrosby
02-18-2010, 01:06 PM
Me again!!! :goodvibes

So, Brigitte's MAW co-ordinator called today to let me know about our accomodations at AKL!! I almost fell on the floor :rotfl:!! We are staying in a 2br Villa at Kidani Village. :dance3: :cheer2: I seriously can't even believe it!!

This makes packing etc....so much easier!! I am seriously going to get all 4 kids things in one suitcase. I LOVE that we have the washer and dryer now!!

I am simply thrilled!! Just wanted to share!!


You are packing all 4 kids in ONE suitcase????? Wow, you're a better woman than I. We took advantage of the one free piece of luggage for every passenger :laughing: Not that everyone had a full suitcase but I figured the 'extra' room would come in handy for souvenirs and such (and it did!).

I'm kind of a nut though. When we go away for a week and I know I will be taking lots of pictures I don't want them in the same clothes in every picture. Dumb, I know:confused3

And regarding boarding.................I'm with others who have said just go up to the desk and explain your plight from the get-go. There's nothing wrong with asking for a legitimate favor. Most passengers are NOT flying with 4 children period, never mind with a child(ren) with special needs. While you may get an employee who goes straight by the book, you may very well get one with a heart. I'm betting on the latter:)

Hey, btw..............did you have any luck arranging 'anything'???

pnutallergymom
02-18-2010, 03:07 PM
You are packing all 4 kids in ONE suitcase????? Wow, you're a better woman than I. We took advantage of the one free piece of luggage for every passenger :laughing: Not that everyone had a full suitcase but I figured the 'extra' room would come in handy for souvenirs and such (and it did!).

I'm kind of a nut though. When we go away for a week and I know I will be taking lots of pictures I don't want them in the same clothes in every picture. Dumb, I know:confused3

And regarding boarding.................I'm with others who have said just go up to the desk and explain your plight from the get-go. There's nothing wrong with asking for a legitimate favor. Most passengers are NOT flying with 4 children period, never mind with a child(ren) with special needs. While you may get an employee who goes straight by the book, you may very well get one with a heart. I'm betting on the latter:)

Hey, btw..............did you have any luck arranging 'anything'???


Pamela....you crack me up!!! I guarantee that I will get on that plane with only 3 suitcases!!! One for DH (he is worse than a woman!!) :rotfl2: One for Brigitte and I...and one for the other 3 kids!!

What in the heck do you pack??? I don't usually even pack shampoo or any of that stuff...just get it at Wal-Mart when we get there...rather than risk the "spillage" that could occur!! Brigitte's stuff is all getting shipped...except her pumps and meds..I don't know...I told you I was laid back!!

Now I swear to you, Bryan will have enough clothes to last him a month!! And shoes to match!! I bring enough T-shirts for all of us, a pair of jeans, a couple pairs of shorts and just do laundry at night!! I toss a load into the wash when I'm giving the kids a bath and then just put it in the dryer before I go to bed!!

I haven't gotten a thing planned. Nada. Nothing. Zip. :confused3 Princesses aren't a favorite...still :confused:!! Brainwashing isn't working. Still all Mickey and Minnie....all the time! She just took all her clothes off to put on her "minnies" (pj's). I made character bfast ADR's at Ohana, Chef Mickeys and Crystal Palace. She'll probably scream bloody murder through all of it!! :laughing: She likes looking from a distance, but not sure if the up close stuff is going to go over real well.

My plan for the airport is to go all decked out in our MAW stuff and just smile and insist......nicely, of course!! Like Jen said, make them tell me NO!! I don't like that word!! Maybe I'll make Bryan sit with all of them!! :rotfl: Yeah, right!!! I'll just hoard some of Brigge's ativan and slip all the kids a little :mickeyjum ....then I can enjoy my Bailey's!!! :cool1:

The kids all actually fly really well. The boys play their DS's....Brenna usually watches a movie..and well, Brigitte...she's just Brigitte. She talks 24/7...so she'll definitely get that Ativan....Bryan, oh Bryan!! He always makes fast friends with the Flight Attendants and there hasn't been a trip yet that he's paid for a beer!!! :goodvibes

jenb1023
02-18-2010, 03:28 PM
Like Jen said, make them tell me NO!! I don't like that word!! Maybe I'll make Bryan sit with all of them!! :rotfl: Yeah, right!!! I'll just hoard some of Brigge's ativan and slip all the kids a little :mickeyjum ....then I can enjoy my Bailey's!!! :cool1:

The kids all actually fly really well. The boys play their DS's....Brenna usually watches a movie..and well, Brigitte...she's just Brigitte. She talks 24/7...so she'll definitely get that Ativan....Bryan, oh Bryan!! He always makes fast friends with the Flight Attendants and there hasn't been a trip yet that he's paid for a beer!!! :goodvibes

My DH is always amazed and how I can get people to do things/agree to things - I am always very polite but very firm and it usually works like a charm. Good luck! I do not like to fly either so maybe I need a little of Brigge's ativan and a little of your Bailey's! :lmao:

pacrosby
02-19-2010, 11:51 AM
Pamela....you crack me up!!! I guarantee that I will get on that plane with only 3 suitcases!!! One for DH (he is worse than a woman!!) :rotfl2: One for Brigitte and I...and one for the other 3 kids!!

What in the heck do you pack??? I don't usually even pack shampoo or any of that stuff...just get it at Wal-Mart when we get there...rather than risk the "spillage" that could occur!! Brigitte's stuff is all getting shipped...except her pumps and meds..I don't know...I told you I was laid back!!

Now I swear to you, Bryan will have enough clothes to last him a month!! And shoes to match!! I bring enough T-shirts for all of us, a pair of jeans, a couple pairs of shorts and just do laundry at night!! I toss a load into the wash when I'm giving the kids a bath and then just put it in the dryer before I go to bed!!

I haven't gotten a thing planned. Nada. Nothing. Zip. :confused3 Princesses aren't a favorite...still :confused:!! Brainwashing isn't working. Still all Mickey and Minnie....all the time! She just took all her clothes off to put on her "minnies" (pj's). I made character bfast ADR's at Ohana, Chef Mickeys and Crystal Palace. She'll probably scream bloody murder through all of it!! :laughing: She likes looking from a distance, but not sure if the up close stuff is going to go over real well.

My plan for the airport is to go all decked out in our MAW stuff and just smile and insist......nicely, of course!! Like Jen said, make them tell me NO!! I don't like that word!! Maybe I'll make Bryan sit with all of them!! :rotfl: Yeah, right!!! I'll just hoard some of Brigge's ativan and slip all the kids a little :mickeyjum ....then I can enjoy my Bailey's!!! :cool1:

The kids all actually fly really well. The boys play their DS's....Brenna usually watches a movie..and well, Brigitte...she's just Brigitte. She talks 24/7...so she'll definitely get that Ativan....Bryan, oh Bryan!! He always makes fast friends with the Flight Attendants and there hasn't been a trip yet that he's paid for a beer!!! :goodvibes



gee, now you have me wondering what the heck I DID pack 'cuz I didn't think I went overboard on the clothes :rotfl: Hmmmmmmmmm I would try and justify it by saying we stayed an extra two days but you're staying an extra week aren't you????? Ok, so that excuse is out :rotfl2:

I personally don't like to do alot of laundry over the course of a vacation. I do like to have a washer and dryer but only so that I can wash the day or so before we return (to reduce the mountain of laundry I will face at home). Plus we rarely spend any time in our room. We wake up, get dressed and go and generally only return to grab something quick (food, change of clothes etc.) until the day is done and it's time for bed.

I will say that when we packed to come home we had two completely empty suitcases that were then stuffed with, well, stuff. Just wait until you see a picture I have of ALL the stuffed animals we acquired (and few were actually purchased by us). They took up a whole suitcase in and of themselves!!!!!

pnutallergymom
02-20-2010, 09:20 AM
gee, now you have me wondering what the heck I DID pack 'cuz I didn't think I went overboard on the clothes :rotfl: Hmmmmmmmmm I would try and justify it by saying we stayed an extra two days but you're staying an extra week aren't you????? Ok, so that excuse is out :rotfl2:

I personally don't like to do alot of laundry over the course of a vacation. I do like to have a washer and dryer but only so that I can wash the day or so before we return (to reduce the mountain of laundry I will face at home). Plus we rarely spend any time in our room. We wake up, get dressed and go and generally only return to grab something quick (food, change of clothes etc.) until the day is done and it's time for bed.

I will say that when we packed to come home we had two completely empty suitcases that were then stuffed with, well, stuff. Just wait until you see a picture I have of ALL the stuffed animals we acquired (and few were actually purchased by us). They took up a whole suitcase in and of themselves!!!!!

This is where the Mommy Dearest in me comes out....damn, wire hangers!! :rotfl: I HATE, DESPISE, you name it, Stuffed Animals!!! :rotfl2: They drive me crazy. That whole webkinz craze was enough to have me standing on the ledge. I am already starting to twitch thinking about it. We were at CHB today and another little girl about Brigge's age was in the waiting room as well. Guess what she had?? A good sized stuffed Minnie Mouse!! Guess who was screaming at the top of her lungs that she wanted one!!! Mine, Mine, its all Mine!!! :scared1: So now you just know we're going to end up with one of those!!! :headache:

Now before you all go calling me the wicked witch of the East....my hatred of stuffed animals started after all the inpatient stays. My house is inundated with the little...and not so little..critters!! Big ones, small ones, purple ones, pink ones, dogs, cats, monkeys, horses, unicorns...well, you get the picture. What else do you send an toddler in the hospital? Flowers...nope! Candy....nope! Edible arrangements (my personal favorite)...nope! Just more and more stuffed animals!!! :lmao: What in the heck do you do with these things??

I should stop!! :scared1:

On to more important matters!! I totally agree about not having the laundry to do when you get home....isn't that just a total buzzkill!! Nothing worse!

We would travel well together Pamela!! We aren't in the room much either. I usually throw a load of laundry in when I am getting the kids ready for bed...then just toss it in the dryer before we go to bed. I can have all 5 of us ready in no time in the AM...always waiting for DH!! I just fold it real quick and toss it back in the suitcase. Or I will do it if Brigitte is napping.... :laundy: nothing like enjoying a cocktail :drinking1 on the balcony while folding a quick load of laundry!! :thumbsup2

So, you guys have to tell me more about the rope drops. We ALWAYS do the MK one...I cry every time. Like a baby. My husband thinks there is something wrong with me. Brenna even asked me if I needed an ambulance one time. :rotfl: No, not that bad!! But the tears do roll........ How are the other ones?? Must do's or not? Give me the good, bad and the ugly??

BTW....my itinerary planning is all over the place. I read and read and search and search....I am ALL over the place right now. I need to do some serious organization...soon!!!

pacrosby
02-20-2010, 10:30 AM
Shannon!!!!!!! :scared1:

You don't like 'stuffies'?????? :scared1:

Oh no no no no no no no

I simply cannot be your friend now :sad2:




Now go sit in the corner with Melissa (yinyangirls)

cantwaittoseemickey
02-20-2010, 11:08 AM
When we have flown SW and once they let the 4of us pre-board with Ty and once they only let me. What I did was take anything on with me that was extra like my backpack and Sierra and Ty's backpack and dh's cpap machine and Ty's pump. Anything that I could use to sit in seats to save them for dh and Sierra:rotfl2:It worked out well. If someone came up I told them it was seats for my husband and dd.

pnutallergymom
02-20-2010, 02:35 PM
So apparently when I was going on my rant about stuffies this morning, Brigitte was tanking and I didn't even realize it!! She has a BAD habit of getting really bad, really fast!! :scared1:

We were just at CHB yesterday for GI clinic and she was ok. Irritable (first clue)...but fine. She didn't sleep great last night, but sleep is an issue for us. She was up early this morning and didn't move off the couch...just layed there (second clue). Hence, my being able to right a long winded diatribe on my HATRED for Pamela's coveted stuffies!! I went to rub Brigge's back, and man was she HOT !!!!:sick: Not good...axillary temp was reading 103.4??? It had to be wrong. Checked it again...103.5?? Seriously?? Ok, Brenna, get over here and let me check your temp. 97.7! Thermometer wasn't lying!!

So the calls were all made. Brigitte's GI attending called me right back. He has his concerns and they are all legit. She acted pretty good with her last line infection, and we were minutes away from an admit to the PICU. She is a tough cookie. :goodvibes Just makes for knowing when she is sick and really sick..pretty dang difficult.

They really want her admitted for the 48hr rule out. I get it...but its Saturday. You guys know how that goes...we'd sit in the ED for HOURS :scared1:....all to run antibiotics until the cultures come back. She'd be on precautions. Mommy would be CRAZY....Brigitte would be worse!!! :headache:

So, with my promise that if ANYTHING at all looks different, we head in. But for now, I am waiting on our infusion company to arrive and we will run Vanco q8 and Ceftriaxone qd.....until Monday. The cultures will be back and if they are positive, we'll head in then. We did run up to the pedi this am just to make sure nothing crazy obvious was going on. Ears, throat, chest, and urine..all good. So with the sudden spike in fever, my guess is the line. :sad2:


So if you don't mind keeping Brigitte in your thoughts and prayers, I would appreciate it. We had such a fun week planned. We were going to see Tooth Fairy on Tuesday..then we're going to try to head to the north country on Wednesday night to use some ski passes donated to us from our MAW chapter. Brigitte was going to take part in an adaptive ski lesson and the big kids were going to learn how to ride, Shaun White style!! :banana: zThen on the 28th, we got picked in a lottery to attend a Bruins Charity Event at the TD Banknorth Garden with Starlight Foundation. The kids will be able to skate with the Bruins, have lunch at Legends, airbrush tatoos, facepainting, etc...they want to go so badly!!

Thanks you guys!!:love:

Isn't that always the way!!

Thumper321
02-20-2010, 04:08 PM
Aww, darn! Sounds like you've got too big of a week for a line infection. :sad2: But yes, that's usually the way it happens. I hope Brigitte gets to feeling better and that you're able to avoid inpatient status. Maybe she wants new stuffies. :laughing: Buy her one quick if it'll keep her home!

Momofwishkid
02-20-2010, 04:47 PM
Oh Shannon I am so sorry this stuff always happens when you have big plans.:sad2: I will be keeping Bridgette in my thoughts and hoping for no inpatient. :hug:

yinyanggirls
02-20-2010, 05:25 PM
:laundy: nothing like enjoying a cocktail :drinking1 on the balcony while folding a quick load of laundry!! :thumbsup2



Now go sit in the corner with Melissa (yinyangirls)

If laundry is a good reason for Shannon to enjoy a cocktail and THIS is how she enjoys it :drinking1 she can sit in my corner anytime! :rotfl2: We don't need no stinking stuffies!

pipersmom
02-20-2010, 06:02 PM
Praying for you guys and Brigitte that everything will resolve itself withOUT an admission! Just think if Piper hadn't been admitted I'd be all packed and everything by now... :rolleyes1: Seriously though, hoping you'll be able to do at least some of the fun you have planned this week! :hug:

Confession..I too am not all that crazy about the idea of bringing lots of stuffed animals home..we have waaaaaay too many for my taste now! So, I'll be joining you girls in the corner with a drink...and how about a barrel fire made with old stuffed animals? :lmao:

DisMomAmy
02-20-2010, 09:58 PM
Oh no... I hope Brigitte has a speedy recovery without a hospital admission!

noahsketomom
02-20-2010, 10:28 PM
Hey Shannon,
Praying for Brigitte....and YOU!!!

:hug:

Hugs from your southern neighbors,

yinyanggirls
02-21-2010, 01:05 AM
I'll be joining you girls in the corner with a drink...and how about a barrel fire made with old stuffed animals? :lmao:

Our corner is getting crowded. :crowded: Just kidding!!! I always wanted an excuse to use that smiley though. How about this one instead? party:

pacrosby
02-21-2010, 02:21 AM
Amanda and Melissa!!!!!!! :scared1: :scared1: :scared1: :scared1:

I am appalled!

(but there are a few I'd like to add to your bonfire if you don't mind :rotfl:)





And Shannon......................I am so sorry to hear of the sudden turn of events. YIKES....that's some scary stuff. Get that girl healthy and back on home so she can enjoy all that fun you've got planned!

And I do so hope you didn't mind/weren't offended by the banter.....just trying to keep it light. You know all of us here (that would be Melissa, Amanda, myself and all 565 stuffies that live in my house :laughing:) are thinking only good thoughts for you and Brigette :)

:hug:

Wee Annie
02-21-2010, 08:57 AM
Shannon,

thought I had subscribed to your thread, but apparently hadn't! So sorry to hear that Brigitte is not well. I will be praying for it not to be a line infection, and that she recovers quickly on the abx, so you all can have some fun this coming week!

Btw, count me in in the not liking stuffies crowd. I have three girls, so already had too many before Elke was diagnosed, but yikes, after she was, we're now overloaded! My middle daughter once went to a birthday party with an ingenius design by the mother. She set up "carnival"-type games in her home and yard, and then had a pool of "gently-used" stuffed animals as prizes. Every child came home with an armful and were overjoyed, and she got rid of tons of stuffed animals. And I, of course, said, "oh great. Now we have someone else's unwanted stuffed animals...".

Prayers for Brigitte and your family

Ann

kellyw8863
02-21-2010, 09:13 AM
I'm sorry Brigge is feeling poorly. I hope that it's not a line infection and that she's back on the up and up shortly.:grouphug:

pnutallergymom
02-21-2010, 10:28 AM
Hey everyone,

I write to you from the lovely 2in foam mattress at Club CHB....:sad2:

Brigitte went down hill fast last night and we needed to get her in ASAP. We are now sitting in ICU as we can't get good control of her HR and Temp. She's been topping out at 178HR and temp at 103.7 axillary.

They want to get this line out and she may go to the OR today....but then we have an access problem as she doesn't have alot of peripheral access and due to her insane vasculature, we can't place a PICC. So we sit in limbo.

I'll keep you all posted. Keep the crazy banter coming!! I need lots to laugh about right now......you know I'm about to head to the gift shop and buy another freakin stuffie!!!! :rotfl: :scared1:

pipersmom
02-21-2010, 10:33 AM
I was afraid you guys might be there when you didn't post :( Keeping you in our prayers, hon! Buy balloons instead..they're easier to get rid of :lmao: They even had a Minnie balloon at UVa gift shop. Does CHB have an e-card system or anything? :hug:

pipersmom
02-21-2010, 11:47 AM
CBH does have a page that you can e-mail patient from, and Shannon said Brigitte would love getting emails! Here's the link:

CBH Patient email (http://www.childrenshospital.org/patientsfamilies/email.cfm?s=1393&c=14&u=Patient)

The emails brightened our days so much when Piper was admitted, let's do the same thing for Brigitte! Just shoot me a pm for the name information! (I've cleaned out my box!)

pacrosby
02-21-2010, 11:55 AM
Oh Shannon.............that's lousy. I hope things can be stabilized without having to head into the OR. Positive thoughts sent your way.




btw: we're headed into Boston later today to the Travel Show................if you want we can stop by and bring Brigge a stuffie :lmao: :rotfl: :rotfl2:

Momofwishkid
02-21-2010, 12:30 PM
Shannon, I posted on your Caring Bridge page but just wanted to say you and Bridgette are in my thoughts. :hug:

MaryAz
02-21-2010, 07:28 PM
Hoping that Bridgette is feeling better soon. Hang in there.

yinyanggirls
02-21-2010, 11:58 PM
Oh man, that stinks. I hate when you are stuck in limbo.

Resist the stuffies urges!!! :rotfl:

jenb1023
02-22-2010, 10:23 AM
Sending good thoughts that Brigitte will feel better soon! Keep us posted when you have time. :hug:

pnutallergymom
02-22-2010, 01:30 PM
Thank you all so much for all of your thoughts and prayers!! :hug:

Brigitte went to the OR last night around 6pm and had the line removed. Her fever curve and WBC both dropped dramatically after that! Phew.....:)

Unfortunately, her inflammatory markers are through the roof. The team wants to keep her on IV antibiotics for a while. We also now have to figure out how to keep a kid who was TPN/Lipid/Fluid dependant from losing any weight and getting dehydrated. Brigge has never tolerated large volumes through her gut. Which is why we ended up with a line in the first place. So we have alot of work to make up and none of it is going to happen overnight. I am gearing myself up for an extended stay :scared1:. Nothing with Brigge is ever simple.

We were planning on bumping her feeds by 5cc/hr every 8 hours, she currently gets 35/hr...we moved up to 40 and already she is retching and gagging :sad2:. So this plan is going to be a work in progress for a looooong time. We may have to talk about another GJ tube....which is a disaster in itself. Due to her many GI surgeries, her anatomy isn't quite set up for doing GJ tubes in Interventional Radiology. She has to go to the OR each time for one and there is only one doctor here in this hospital who has been successful in placing it. We trialed one about a year ago...and well, lets just say it lasted all of about 3 days and she pulled it out. Aye, Aye, Aye!!! :laughing: What can I say, the girl likes to keep us on our toes!!

We got an unexpected visitor yesterday!!! Bryan happened to be walking down the hall and this "doctor" was asking about "Brigitte K"...he said oh, she's right down here! Wouldn't you know, it was Dr. Pamela!!! :rotfl: Bryan had no idea who she was, so just assumed it had to have been a doctor!! He isn't really aware of my Dis Addiction.....so I can surely see where he was confused!!! LOL!!!

Guess what she had in her hand???? :rolleyes1 Yep, you got it!!

A STUFFIE!!!! :rolleyes:

I will admit, this is a really cute stuffie!! He is a cute little Brown Bear!! Very soft indeed!!

Thank you Pamela!!!! :worship: You made Brigitte's day!! :goodvibes

We are hear for the duration!! I will be keeping busy catching up on all the Dis!! Can't wait to start reading TR's!!!

yinyanggirls
02-22-2010, 03:00 PM
Oh Shannon, I'm sorry about all the complications, but at least you know the source. I always wonder why things are still so hard and so many unknowns in this day and age. I hope something works for her.

And I saw it coming, as soon as you said Pamela. :lmao:

pipersmom
02-22-2010, 03:29 PM
Woohoo, I'm glad Pamela made it and you got a little dose of sunshine to brighten your day yesterday! I just commented on your care page, but will repeat here that I'm glad Brigge seems to be improving. Hoping the team will be able to figure something out to work for the feedings! :hug:

Mtopher4
02-22-2010, 06:23 PM
((((Hugs to you both)))))) I'm so sorry you had to go back to the hospital :(

Glad the bear cheered her up

Thumper321
02-22-2010, 06:25 PM
So sorry to hear you're going to have to stay for a while, but I know that you are so glad that Brigitte is on the floor instead of ICU. I hope that she continues to improve quickly and that you guys are home soon. :grouphug:

Maryrn11168
02-22-2010, 11:27 PM
Glad to hear Brigge is getting better!!! Sorry your stay is going to be a long one...My son is the same, he doesn't do anything half way...if he's going to get something he's going to get everything!!!! No little infections here!!!:rotfl2::rotfl2:

As for the stuffies....I do not know how my son fits in his bed with all of them:lmao::lmao: I used to take them away from the dog so he would rip them, now I give them to the dog while the kids are at school!!!!:lmao:

Momofwishkid
02-23-2010, 10:27 AM
Shannon I so sorry it looks like it will be a long stay but glad Bridgette is feeling better and Pamela made it in to see you guys and brought a stuffie :goodvibes I have to admit Im one who loves them.

pnutallergymom
02-23-2010, 03:08 PM
More Stuffies!!! :goodvibes

They are beginning to invade the room. The new addition is an Ugly Doll!! He's purple. :upsidedow Have you guys seen these things?? Seriously, they are ugly!!! Definitely one for the barrell burn, or I could give it to the dog. She would LOVE it!! :laughing: Or maybe not...it truly is Ugly!!! :rotfl:

At least someone came to their senses and brought us a Mickey Mouse Clubhouse DVD....Brigitte's mood changed instantly!! :thumbsup2

The nurses know us pretty well up here...as do the custodians, food service people, and on and on and on...... Perks of being frequent fliers, I guess!! Anyways, they all know she is going to Disney on her wish trip to see Mickey, so we have Disney all over the room!! Stickers, books, pencils, notebooks...someone even found some MMC dominoes!! Someone is always dropping by with what they "stole" from the other floors!! She even got a Mickey pancake this morning....but she didn't touch it :sad2: So, mom had to eat it...just terrible :rolleyes::rolleyes:.

She had a rough night last night..lots of visceral pain from trying to push feeds. She's maxed out on her neuropathic pain meds, so nothing to do but shut them off and give her a break for a bit. She's sleeping alot, which is completely out of character for her. She's not feeling well at all....:sad1:

I can't wait to get to Disney!! I am so happy that some of you are going soon!! :dance3: Selfishly, I need some more reading material!!! Looking forward to hearing about the send off parties this week, though!!

kellyw8863
02-23-2010, 03:28 PM
I actually LOVE the Ugly Dolls! Weird, I know.:rotfl2: I'm sorry that Brigge is still feeling so poorly, but I'm glad that they're treating you well! What does she take for the visceral pain? We've only tried Neurontin, but it made Ali's behavior unmanageable, so we had to take her off of it.

Can you believe we're under the two month wait?!

Momofwishkid
02-23-2010, 03:42 PM
Im so sorry Bridgette is having so much pain. I have never heard of the Ugly dolls. Im going to have to look them up. Im glad they are all treating you well and will try to update soon after we return so you have some new stuff to read. :goodvibes

Wee Annie
02-23-2010, 04:06 PM
More Stuffies!!! :goodvibes

They are beginning to invade the room. The new addition is an Ugly Doll!! He's purple. :upsidedow Have you guys seen these things?? Seriously, they are ugly!!! Definitely one for the barrell burn, or I could give it to the dog. She would LOVE it!! :laughing: Or maybe not...it truly is Ugly!!! :rotfl:


She had a rough night last night..lots of visceral pain from trying to push feeds. She's maxed out on her neuropathic pain meds, so nothing to do but shut them off and give her a break for a bit. She's sleeping alot, which is completely out of character for her. She's not feeling well at all....:sad1:


I'm so sorry to hear she's in so much pain --she's in my prayers.

One thing though -- I really dislike most stuffed animals, but I actually kind of like Ugly dolls!! Their ugliness makes them kind of cute. And I love the "write up" that comes with them re their personality. It's kind of fun. They're actually "cool" items among older kids (my older girls are almost 10 and 12).

Also, about the neuropathic pain -- Elke suffers tremendously from neuropathy too (from one of her chemo meds). She's been on Neurontin, and they continuously had to up her dose until our chief oncologist said it was time to consider something else. So we're trying Elavil. Our oncologist said she actually prefers it to Neurontin for neuropathic pain, and she specifically said she thought it treated GI issues better (Elke's had a lot of those). Have you ever looked into Elavil? You've probably been dealing with this a lot longer than I have and know all the ins and outs, but I thought it was worth mentioning.

Hoping things improve for your sweet girl!

pnutallergymom
02-23-2010, 08:36 PM
Thank you all for all of the love and prayers you are all showering on Brigge and I. They are so appreciated!!! :hug:

We got a big stack of emails from so many of you today!!! Thank you so much!!! They said that some of them were delayed because of the move from ICU to the OR to the floor!! But we have them and I can't thank you all enough!! They were great. She loved getting mail!!:)

I am not great with the multi-quoting yet..its probably really easy, I just haven't taken the time to figure it out....but I have read all of your messages!!! Thanks again.

Annie, I will definitely ask about the Elavil..Thank you!!

pnutallergymom
02-25-2010, 04:43 PM
Hi Everyone,

Just wanted to let you know that we are home...well, not home, but out of CHB!!! They let us go last night. Working on the feeding at home. To many risky bugs in the hospital!!!

kellyw8863
02-25-2010, 04:47 PM
:cool1::cool1::cool1: I hope the feeds go well. Keeping my fingers crossed!

Thumper321
02-25-2010, 04:52 PM
Hope you're enjoying the slopes! Glad that CHB worked with you on getting out of there! :hug:

Momofwishkid
02-25-2010, 06:06 PM
:cool1: Im so happy to hear your ot of there! How is Bridgette doing? :hug:

cantwaittoseemickey
02-26-2010, 07:31 PM
Glad to hear you are out of there:banana: I hope everything is going well:)

pnutallergymom
02-27-2010, 05:27 PM
Hi guys!!!

We are actually at home now!! We literally pulled in the driveway on Wednesday night, ran in the house, changed Brigitte, packed her a quick bag and left for the mountains. I was determined to enjoy some of the kids school vacation this week.

It is amazing to me, that literally a week ago, we were sitting in ICU. We have since gone swimming, skiing, and made it through a 3 day power outage!!

Seriously!! We had a really bad windstorm hit the area while we were away. We have had major issues with pipes freezing in the past, and Bryan had been so nervous this time. I guess the power went out sometime around 9pm on Thursday. We got home quickly after letting the big kids ski/ride for a bit on Friday morning. Luckily, we were home by about 3pm and got the generator running. The power just came back on about an hour ago. Phew!! We are notorious for losing it for days and days. This was a quick one!! Thankfully.

Brigitte is doing great. Sleeping has been an issue again, but it always is when we come out of the hospital. PTSD sets in like crazy. It will take her a week or so to get adjusted.

I am having so much fun reading up on everyones plans!! Can't believe that 3trips are starting this week!!

Thanks all of you again for all of the love and prayers over the last week! So appreciated!!

PS...we came home with roughly 7 stuffies!! :scared1:

Momofwishkid
02-27-2010, 09:44 PM
:cool1: Im so glad you guys are home and you were able to get in a little fun stuff this week.

kellyw8863
02-28-2010, 10:45 AM
I'm glad Brigge is doing well, though I'm sorry for all the stuffies.:rotfl2:

cantwaittoseemickey
02-28-2010, 12:36 PM
Glad to hear you are all home. And yay for having some fun:cool1:

DisMomAmy
03-01-2010, 08:36 AM
How did you guys make out in the storm? We still don't have power, but luckily we have a generator & our cable/phone/internet came back last night! No school today either...

Hope you guys made out OK.

pnutallergymom
03-01-2010, 02:52 PM
I have been asked privately and not so nicely to not continue to post on the subject of GKTW vs. Onsite because certain people are "monitoring" and don't necessarily like what is being said.

So I feel the need to clarify all of which I have been writing for fear that Brigitte's wish will be adversely affected by what I have apparently said and want the people who are "monitoring" to know where I am coming from. For the rest of you, I am so sorry and apologize profusely for this drama that has unfolded because of a simple choice we made...or actually Brigitte WISHED for.

I don't think there is a single person on here that can say I have EVER said a negative thing about GKTW...nor have I ever implied that anyone shouldn't stay there. In fact, I think I have said that we can't wait to go there and enoy the things the village has to offer.

I am very careful about what I say on this board. I always read and reread what I write before posting it. I have, on a number of times, completely deleted something for fear that it may be interpreted the wrong way....and things can and often are very misconstrued in the setting of an email.

All I have been trying to say is that there are different reasons why it is better for some to stay onsite and some to stay at GKTW. I don't think that any one of my posts said "do not stay at GKTW, do everything you can to stay onsite." Actually, I have been the one on the defensive having to say why it is better for our family because everyone has told us we shouldn't. I don't think there is any fear of people not wanting to stay at GKTW...in fact, I believe the issue comes up about them being full, quite a bit. I was told that it is full for the week we are going to be there....I heard this from our chapter...so don't really get where that is coming from. I also don't think that I have influenced anyone to choose offsite. I think as of right now...our family is the only one that is....everyone else has weighed the pro's and con's and chooses GKTW!!!!

We were given the option by our MAW chapter. It wasn't something that we just pulled from the sky. In fact, another NH wish family stayed onsite last year...they were given accomodations at CBR. We chose to stay onsite for a few reasons. We had no idea that by choosing this we would also be able to utilize GKTW. We didn't pick where we would stay. I was expecting to stay at an All-Star resort and have two rooms, only because of the size of our family. In fact, when we travel, we squeeze into one hotel room to save money. Space is never an issue as wherever we are, we don't spend much time in the room. So, when we were told what our accomodations were going to be, it was a complete surprise. I also was under the impression that we would be on the dining plan (which is much more economical than paying OOP) and would have 3 day PH passes to WDW....never knew that US/IOA/SW was included in the mix. I also didn't know that we would have a rental car. In fact, we were fully anticipating using ME and the Disney Transportation until our wishgranters actually talked us into the rental car and going to the other parks. I also didn't know that there was an expense check included in Brigitte's wish.

It has also been said that we should HAVE to stay at GKTW because we might have the opportunity to go back to Disney at some point. Maybe we will, maybe we won't. I don't think anyone should assume that because we have been before that we will be able to go again. We were in a very different place 2yrs. ago. My husband worked a TON of overtime and I also worked a little more than PT. I have since lost my job due to being in the hospital with Brigitte every single month. My husband can't work OT because he needs to stay home with our other 3 kids. When we get home from this trip, it is very likely that we will be looking for another place to live due to the financial burdens associated with having a sick child. I am sure many of you are all to familiar with this. So to say that we SHOULD stay at GKTW because we can go back.....BS. I won't even get into the fact that we are all going on wish trips because we have children with life threatening illnesses....so even if we can go back, who is to say it won't be with one less member of our family.

Just to address the cost issue...as we have seen on so many different PTR's and TR's....its different for each chapter. Some of you get a send off party, we don't. Some of you get a meal covered by your chapter, we don't. Some of you get to go to BBB or Pirates League, we don't. Some of you are having an extra family member or a healthcare professional covered by your chapter because you need the help, we aren't.....even though we were asked and asked since we have 2 other members of our party that have medical issues as well. So to say that I am in someway jeopardizing MAW and GKTW from a financial standpoint is pure nonsense.

It was never my intention to cause such a stir. I was just answering a simple question to which I had an opinion and some experience on......to help. Much like all of you have done for me. Which is why I thought we were all here in the first place. Never in a million years did I ever imagine that what is ultimately Brigitte's Wish, would turn into such a big deal.

DisMomAmy
03-01-2010, 03:21 PM
I'm sorry you've been burdened with this drama & now had the need to explain yourself. I appreciate you sharing your & Brigitte's story with all of us. :hug:

Sometime certain issues come up in my PTR & TRs, such as discussing using the GAC to access a ride via the fastpass line, and I'm always reluctant to tell the whole story out of fear that someone will object to what I am saying. Luckily I haven't faced any scrutiny yet, but in a small way, I understand where you are coming from when you feel the need to "edit" yourself. Again, sorry you are dealing with all of this...

yinyanggirls
03-01-2010, 03:46 PM
I'm sorry any drama came out of this Shannon. I completely understand what you are saying. I also completely respect your decision to stay on-site. Like I said, if we had been given a choice I would have had a hard time making it. I don't think anyone was trying to make you feel bad, or anyone else for that matter, but I also don't know what was said privately. And you're right, what is typed is so easy to misread the true message of what someone means. I hope that after today the dust will settle and we all move on with smiles on our faces. ;)

kellyw8863
03-01-2010, 04:53 PM
:grouphug:

pnutallergymom
03-01-2010, 05:06 PM
How did you guys make out in the storm? We still don't have power, but luckily we have a generator & our cable/phone/internet came back last night! No school today either...

Hope you guys made out OK.

Hey Amy!!!

Thanks for the kind words!! I am so sick of constantly having to have my "filter" on.....nobody else does!!! LOL!!!

We were without power from Friday until late Saturday. During the big Ice Storm a while we back, we got a generator, so we are pretty good to go now!! We can run the heat, well, and our refrigerator...also our master bedroom so we can use Brigge's pumps and stuff!!

How is it looking for you guys?? I'm sorry the kids were home again today...that was the ray of sunshine in my day!!!! Sean had his PJ's on inside out and backwards, the spoon under his pillow and threw the ice cube out the front door!! He thought for sure it would be cancelled!! No luck though!!! Thank goodness!!! :rotfl:

DisMomAmy
03-01-2010, 06:48 PM
We're doing fine... we lost power for 7 days in the ice storm so 4 days is nothing... The generator is a life saver! We bought it a couple years before the ice storm and never used it until the storm. Now we've used it several times. We also got away overnight Saturday, which helped break things up. We went up to North Conway and stayed at the Red Jacket Inn and played at their waterpark. It was fun. The return of cable yesterday was my ray of sunshine! We are at the end of day 4 without power... let's just hope school opens tomorrow.

pacrosby
03-01-2010, 07:55 PM
I got it..................and I gotcha.................and I'm sorry too (but you know that already).

Hey but now that you're on-site it will be easier for you to meet up with us for a dri.........uh er..............snack, right? Now there's a perk for ya :rotfl:

:)

pnutallergymom
03-01-2010, 08:24 PM
I got it..................and I gotcha.................and I'm sorry too (but you know that already).

Hey but now that you're on-site it will be easier for you to meet up with us for a dri.........uh er..............snack, right? Now there's a perk for ya :rotfl:

:)

I am holding you to that!!!! A Lapu Lapu at The Poly?? The kids can play on the beach!!! :rotfl:

Momofwishkid
03-01-2010, 11:56 PM
Shannon, I was tearing up reading your post and Im so sorry you were made to feel like you have watch what you say. I for one completley respect and understand your decision and hope you continue to voice your opinion for other families. :hug: :goodvibes

Wee Annie
03-02-2010, 12:03 AM
Shannon,

I, personally, feel so sad that anyone has tried to make you feel bad about the choices you have made re Brigitte's wish. And I certainly hope you didn't feel like I contributed to it by answering another poster's question about the pros and cons of GKTW. In fact, I meant to post a clarifying reply later on in the MAW thread (I think someone equated my statement re staying at a place where people "get it" to mean that I thought we would all sit around spending our vacations discussing our sick kids. Yikes!). But life has been tricky for us recently and I have not been able to post often (which was probably for the best, all things considering). So please consider this an apology if I in any way made you feel bad about your choice, and a voice of support for the decisions you made. I think you will have a fabulous vacation, and I'm not sure how the fact that you may, or may not, have the resources to go back to WDW should mean that you HAVE to stay at GKTW for Brigitte's wish trip (did someone actually say that??????????)

Btw, SO glad that you all were able to escape the Big House and get some time away!

pnutallergymom
03-02-2010, 03:20 PM
Shannon, I was tearing up reading your post and Im so sorry you were made to feel like you have watch what you say. I for one completley respect and understand your decision and hope you continue to voice your opinion for other families. :hug: :goodvibes

It's been a bit difficult for me to digest and has put a little bit of a damper on the planning for me. Thanks for being supportive. :)


I'm sorry any drama came out of this Shannon. I completely understand what you are saying. I also completely respect your decision to stay on-site. Like I said, if we had been given a choice I would have had a hard time making it. I don't think anyone was trying to make you feel bad, or anyone else for that matter, but I also don't know what was said privately. And you're right, what is typed is so easy to misread the true message of what someone means. I hope that after today the dust will settle and we all move on with smiles on our faces. ;)

Thank you Melissa :). Nobody has made me feel bad about my choice up until yesterday....and I did feel really badly about it until this morning. BUT, the more I think about it, I have nothing to feel badly about. This is Brigitte's wish. I won't go into huge detail on what was said privately, but lets just say as far as I am concerned, it was completely out of line and I feel I am owed an apology. The person who said it tried to gloss it over by saying that because I have "thick skin" that they thought I could handle it.


I have SOOOOO much more to say about this, but am going to let it all go because this TR was supposed to be fun and nobody needs to hear all the drama....that is what high school was for. Its not fun anymore. Having just come home from another hospital admission, which included a septic child and a 2 day ICU stay before moving to the floor....I am emotionally spent. I am so thankful to all of you who are supporting me and especially Brigitte :love:. I am also so sorry that some of you felt the need to apologize to me(WeeAnnie, I tried to multi-quote you, but I told you guys I wasn't good at this stuff :confused3). It was totally unnecessary. None of you made me feel bad about the decision we made :goodvibes. Did I feel a little different sometimes? Sure. Did I question our decision a few times? Absolutely....but each time we came back to our original decision. As someone else said before, this place would be so boring if we all had the same thing to say and agreed on anything. My concern now lies with making sure that the people from GKTW and MAW who are supposedly monitoring this site do not take their unhappiness with me out on my daughter. She has been to hell and back quite a few times and will more likely than not continue to do so...she deserves for her wish to be just as magical as any other wish child's.

MOVING ON........

We were matched up with our photographer for The Littlest Heroes Project yesterday. She called me in the morning, and I am beyond excited!!! :cool1: We are so lucky to have been matched with Paris Carter of Paris Carter Photograhy in FL. She is going to meet up with us and do our shoot on the grounds of the Boardwalk/Swan/Dolphin....I am psyched. She was so sweet to talk to and I just know that we are going to get some fabulous photos!! :woohoo:

pnutallergymom
03-04-2010, 02:23 PM
Brigge after the line is out...finally swimming.http://i669.photobucket.com/albums/vv51/pnutallergymom/100_5979.jpg


http://i669.photobucket.com/albums/vv51/pnutallergymom/100_5983.jpg
[/Ihttp://i669.photobucket.com/albums/vv51/pnutallergymom/100_5984.jpgMG]

http://i669.photobucket.com/albums/vv51/pnutallergymom/100_5982.jpg

http://i669.photobucket.com/albums/vv51/pnutallergymom/100_6057.jpg

DisMomAmy
03-04-2010, 02:27 PM
Thanks for sharing the pictures! Looks like you guys had a good vacation!

pnutallergymom
03-04-2010, 02:32 PM
Thanks for sharing the pictures! Looks like you guys had a good vacation!

Thanks Amy!!!

Sorry the pictures are so big....thats my next project after perfecting how to multi-quote!!!

Brigitte has been so happy to finally be able to take a bath!! She is like a little fish!!!

We had a very nice few days away. Only got one day of skiing in, the weather was just to bad!! We'll go again soon!!

The last picture was from the Take the Ice event we went to with Starlight Foundation. We all got to skate on the ice at the Garden with the Bruins!! Got some lunch and they had a bunch of activities for the kids afterwards. It was such a nice day. We got to see Christine (dmbfan) and her family as well. Got to hear all about their return trip to volunteer at GKTW. They are such a nice family!!!

pacrosby
03-04-2010, 05:23 PM
Where'd you go skiing? Dh took the two older kids last weekend (before they got sick) while I stayed home with the two who were already sick. We plan on doing alot of Spring skiing.................I'm thinking they'll be plenty of snow up north at least through April (I used to ski at Killington until late May!!!!...................ahhhhhhhhhh, the old days:rolleyes:)

Great px. Can you actually push the w/c on the ice??? How fun for her :)

yinyanggirls
03-04-2010, 05:30 PM
Cute pics! I'm so glad Brigitte gets to swim! I always loved staying in the water until my fingers were pruny. ;)

I haven't corresponded with the Littlest Heroes yet. What was the process to get matched with them? Did you get to choose anything other than general location? I'm so tempted to fit that in on our trip as well.

pnutallergymom
03-04-2010, 06:27 PM
Where'd you go skiing? Dh took the two older kids last weekend (before they got sick) while I stayed home with the two who were already sick. We plan on doing alot of Spring skiing.................I'm thinking they'll be plenty of snow up north at least through April (I used to ski at Killington until late May!!!!...................ahhhhhhhhhh, the old days:rolleyes:)

Great px. Can you actually push the w/c on the ice??? How fun for her :)


Pamela,

We went to Gunstock!! It was a great day....weather wasn't great...but the kids enjoyed it!! I promised the kids we would "skip" school and go again another day!!

Yes, we could bring the w/c on the ice. She loved it....just kept saying "weeeeeeee" and "more"!! It was awesome!!

Cute pics! I'm so glad Brigitte gets to swim! I always loved staying in the water until my fingers were pruny. ;)

I haven't corresponded with the Littlest Heroes yet. What was the process to get matched with them? Did you get to choose anything other than general location? I'm so tempted to fit that in on our trip as well.

Melissa, she LOVED swimming....I can't keep her out of the tub now!! She's developed a bad habit of dumping cups of water on the floor though!! I try to get mad...but really, I am just so happy to see her having fun!!

Littlest Heroes has been a little difficult to communicate with. Its been all through email. I submitted everything a while ago. Heard from them right away...submitted our choice of photographers....and then never heard a thing. I sent a few emails and she finally got back to me saying that she was having a hard time connecting with our choice of photographer. Then about two weeks later, I heard from the photographer directly. She is great. I think that it is just one person running Littlest Heroes and I'm sure she is overwhelmed!! Its all good now, I would just get on it if you want to do it for the trip. They give you a list of all the eligible photographers, you pick your top 3...and then set the location up with whomever you choose. We are going to do ours in the Swan/Dolphin/Boardwalk area.

Good Luck!!

kellyw8863
03-04-2010, 08:16 PM
Great pictures! Now I'm really wishing that we had gotten our act together to RSVP to that event in time. Your kids all look so much alike and are adorable.:goodvibes

jenb1023
03-04-2010, 09:43 PM
Love the trip pics!

foxyroxy40
03-04-2010, 11:52 PM
I just wanted to say I just found your Ptr and I am just amazed at all you and the other wish parent's have gone thru with your children how you do it just amazes me and I thought my son had a lot of isssues but reading your stories makes me realize how wrong I was his problems are so minor compared to everyone's on here I've been reading. I dont know how he would manage all the dr visit's and hospital stay's now at his age he's fifteen and a biggger baby then all of your children he throws a fit every time he has to have blood work done which is about every six month's and urinalis done to we drive about three hours away to see his nephrologist but again only every six month's he hates that he cant drink all the pop or gatorade his friends drink and cant eat to much protein,and he takes one pill a day for high blood pressure. so here's to all of you mom's out their who have special needs children:cool1:Every child should have to their wish the way they want it,not how someone else wants it. know that you all are in my prayers God bless you all

yinyanggirls
03-05-2010, 01:18 AM
Littlest Heroes has been a little difficult to communicate with. Its been all through email. I submitted everything a while ago. Heard from them right away...submitted our choice of photographers....and then never heard a thing. I sent a few emails and she finally got back to me saying that she was having a hard time connecting with our choice of photographer. Then about two weeks later, I heard from the photographer directly. She is great. I think that it is just one person running Littlest Heroes and I'm sure she is overwhelmed!! Its all good now, I would just get on it if you want to do it for the trip. They give you a list of all the eligible photographers, you pick your top 3...and then set the location up with whomever you choose. We are going to do ours in the Swan/Dolphin/Boardwalk area.

Good Luck!!


Thanks for the details. I think I will contact them and see if we can do it in time. I'm glad they let you have some say in who does it. And I'm sure the person/people running it do their best. Bless their hearts for organizing such a great idea! I think once I get my photo business up and running I will offer to be a photog for them...:goodvibes

cantwaittoseemickey
03-05-2010, 07:29 AM
That happened with us too. We contacted them and heard back. I submitted my photographer choices and never heard back from them this was at least 6 mos ago. I know they were going through some problems with thier computer system or something at the time. I just have not had a chance to resubmit. They probably have it all fixed now. It is such a great thing that they do. The pictures I have seen have been amazing.

pnutallergymom
03-05-2010, 10:14 AM
I just wanted to say I just found your Ptr and I am just amazed at all you and the other wish parent's have gone thru with your children how you do it just amazes me and I thought my son had a lot of isssues but reading your stories makes me realize how wrong I was his problems are so minor compared to everyone's on here I've been reading. I dont know how he would manage all the dr visit's and hospital stay's now at his age he's fifteen and a biggger baby then all of your children he throws a fit every time he has to have blood work done which is about every six month's and urinalis done to we drive about three hours away to see his nephrologist but again only every six month's he hates that he cant drink all the pop or gatorade his friends drink and cant eat to much protein,and he takes one pill a day for high blood pressure. so here's to all of you mom's out their who have special needs children:cool1:Every child should have to their wish the way they want it,not how someone else wants it. know that you all are in my prayers God bless you all


Hey Foxy! Thanks for joining in!! :welcome:

I have a son who has severe food allergies too so I can relate to the "not being able to drink/eat issue" too. Sean had been great about his allergies up until this year. We were lucky enough to find out about it while he was young, so it was something that he just grew up with and didn't really notice a big difference. This year he entered into 1st grade so it is the first time where lunches, ice cream days, popcorn days, etc are all kind of "in his face" so to speak. He never used to even ask if he could have something he wasn't able too and never even wanted it. He liked the stuff he was able to have. Now, that a whole new world has opened up to him, he is really taking notice of the differences. It has been a difficult year for him with lots of crying and "why can they have it, but I can't" conversations. So, I think alot of the fits you talk about come with the kids getting older and realizing that they are different.

I am dreading the days as Brigitte gets older and realizes that there is going to be so much that she can't do and how it all plays out. I have a feeling that I am going to have ALOT of tantrums on my hands :scared1:. She literally has had to "fight" for her life since she was born so she has that fighting nature about her already....plus she's a redhead!!! Feisty isn't the word :laughing:!!!! We had her IEP review a few weeks back and the teachers tried to nicely say that she is strong-willed and determined. What they really wanted to say is that she is a big ol' BRAT :rotfl:!!! My kids have nicknamed her "bossy Brigitte" or "bratty Brigitte"!!!

Honestly, though, I think with kids like all of ours that have some "issues" or are different from their friends, it is their way of "controlling" something they have no control over at all!! Plus, I don't blame them. Without mincing words, the whole thing just sucks!!! :)

Anyways, thanks for posting!!! :thumbsup2

pnutallergymom
03-05-2010, 03:58 PM
Great pictures! Now I'm really wishing that we had gotten our act together to RSVP to that event in time. Your kids all look so much alike and are adorable.:goodvibes

Thanks Kelly!! Its funny, people ask me all the time if the boys are twins!! They're 16mo apart. The girls look alot alike too....Brenna's hair used to be as curly as Brigge's!!!

The Take the Ice Event was great. The NH chapter doesn't do as many things as the MA chapter so it was nice that they offered it and got picked in the lottery!! We don't ever win anything!!

Love the trip pics!

Thanks Jen!! We really had a good time...I was so happy to spend some time with the kids since I hadn't seen them in 5 days!! It was a quick admission for us...but it always just seems like forever!!! I was hoping Brigitte could have gotten out there, but the weather was just to bad. Next time!!!!



So, I went ahead and booked the Pirates League pirate: for the big kids today . I hope they LOVE it!! I was almost tempted to book a spot for myself :lmao:!! I love that kind of thing...but it is soooooo $$$$$$. The kids want the outfits to go with it, but I looked at them and I think they will be much to hot in them. I'm hoping to dig something up online. Was looking at some skull and crossbones T-shirts or something like that!! Any ideas??

Is it me, or is it really quiet around here lately?? :confused3 We need those girls back so we can get some TR's going :goodvibes!!! I sure hope they are having a magical time. Hasn't looked as if the weather has been all to warm, but sometimes that isn't a bad thing!! Ohhhhhh........I just can't wait to go!!!!! :woohoo:

Wee Annie
03-05-2010, 06:47 PM
I am dreading the days as Brigitte gets older and realizes that there is going to be so much that she can't do and how it all plays out. I have a feeling that I am going to have ALOT of tantrums on my hands :scared1:. She literally has had to "fight" for her life since she was born so she has that fighting nature about her already....plus she's a redhead!!! Feisty isn't the word :laughing:!!!! We had her IEP review a few weeks back and the teachers tried to nicely say that she is strong-willed and determined. What they really wanted to say is that she is a big ol' BRAT :rotfl:!!! My kids have nicknamed her "bossy Brigitte" or "bratty Brigitte"!!!

Honestly, though, I think with kids like all of ours that have some "issues" or are different from their friends, it is their way of "controlling" something they have no control over at all!! Plus, I don't blame them. Without mincing words, the whole thing just sucks!!! :)


Hey! I'm a redhead (although truly a strawberry blonde -- perhaps the blonde hair mellows out the temper?).

So glad you've made me feel better re Elke and her behavior with your description of Brigitte above. Elke is BOSSY, and throws some pretty bad tantrums. The other night I said to my husband that I was half expecting her to start levitating and her head start to spin like a scene from the Exorcist!

But I do recall, right after Elke was diagnosed with leukemia and she was fighting each and every procedure, med, transfusion, etc. like a wild animal, that the oncologist said it was a good sign -- that fighters do well. And they do have so little control. So many things are done to their bodies, many of them painful, and they can't do anything about it. I think sometimes, in the safety of their home, with family, etc, they just need to exert some control over something. Anything.

And yes, it's been quiet here. I've been absent, but will be more active from hereon in.

jenb1023
03-08-2010, 01:09 PM
So, I went ahead and booked the Pirates League pirate: for the big kids today . I hope they LOVE it!! I was almost tempted to book a spot for myself :lmao:!! I love that kind of thing...but it is soooooo $$$$$$. The kids want the outfits to go with it, but I looked at them and I think they will be much to hot in them. I'm hoping to dig something up online. Was looking at some skull and crossbones T-shirts or something like that!! Any ideas??

My DD wants the three of us to do the Pirates League on our next trip. I would make t-shirts for them if I were you. On the DISsigns thread, people will design something with each child's name on it or there might even be a Pirates League design floating around over there. Then you just print on a t-shirt transfer and iron on to a t-shirt.

kellyw8863
03-09-2010, 09:23 AM
I am dreading the days as Brigitte gets older and realizes that there is going to be so much that she can't do and how it all plays out. I have a feeling that I am going to have ALOT of tantrums on my hands :scared1:. She literally has had to "fight" for her life since she was born so she has that fighting nature about her already....plus she's a redhead!!! Feisty isn't the word :laughing:!!!! We had her IEP review a few weeks back and the teachers tried to nicely say that she is strong-willed and determined. What they really wanted to say is that she is a big ol' BRAT :rotfl:!!! My kids have nicknamed her "bossy Brigitte" or "bratty Brigitte"!!!

Honestly, though, I think with kids like all of ours that have some "issues" or are different from their friends, it is their way of "controlling" something they have no control over at all!! Plus, I don't blame them. Without mincing words, the whole thing just sucks!!! :)



We're just starting to deal with this now, and it's heartbreaking. It's one thing for us as parents to realize that we have children who are "different," but it's a whole 'nother ball game once they start realizing it themselves. But you're right - our kids are fighters and it's that aspect of their personalities that gets them through. There are many days where I think if Ali knew what it meant to give someone "the finger," her little hand would get quite the workout.:rotfl2:

cantwaittoseemickey
03-09-2010, 11:54 AM
Oh I can't wait to hear how you like the Pirate league. I like the idea of making t-shirts.

We have the "tude" over here too. Ty is more of a "must know what everyone is doing" kind of guy. I think its his way of holding on to all of us. But he comes off as bossy from Sierra's point of view. With school he is more of a sit back and watch what everyone is doing then comes home to tell me the report of what everyone did that day;)

pnutallergymom
03-17-2010, 10:07 AM
Hi Everyone,

Yes, we are still here!!! Just busy. I am starting my marathon outpatient clinic appointments. We have 7 in the next 6 weeks. Have I mentioned how much I HATE the hospital?? My stomach turns each time we set foot in the door. :mad:

We had an appointment with a new sub-specialty yesterday to discuss Brigitte's neuro status. The recommendation is that we set her up with Boston's LEND Program. It is a service made up of Neurology, Psychiatry, Psychology, Gen. Peds, Developmental Medicine, Social Work, PT, Speech, and OT. She will go in for a 3 days of intensive appointments and NeuroPsych Evals. Then at the end we will meet with all of the team members and go over their findings and recommendations. I guess we will end up with what is usually a 300 page report that will help us address her "deficits".

Next up on Friday is GI. Her weight is down :sad2:....but that is no surprise. She is struggling terribly at night with the visceral pain and we wind up shutting the pump off more than it runs!! What can you do?? :confused3

I probably should get her into the Pediatrician soon too...another sinus infection. We had a good 3month run at the end of October...but she's had one for January, February and March again. Guess I should add ENT to the list again!! :rotfl:

I have pulled out my suitcases and have started to throw a few things in here and there. Got Brenna another bathing suit the other day. Hoping to pick up Crocs for the kids this weekend. I think I am going to make "Vacation" themed Easter Baskets this year!! Crocs, bathing suits, sunglasses, sunscreen, etc....

I am having a blast living vicariously through all the new TR's!! I just can't wait for this vacation to be here!!! We have 3 cheerleading competitions and 2 baseball tournaments coming up. One is in RI, the other in NY...so those will keep us occupied!!! I think we are down to 38 days now....but who's counting?? :lmao:

Momofwishkid
03-17-2010, 11:29 AM
Im so sorry you are dealing with the rounds of appointments right now. I hope they come up with some answers to help Bridgette.
Your trip is getting closer. The last month seems to fly by and Im sure will for you being so busy.
Just a note on the pirate league. We all did it and I'll be updating Gavin's TR today on it. Just be sure you get some make-up remover!!

noahsketomom
03-17-2010, 04:41 PM
Hi Everyone,

Yes, we are still here!!! Just busy. I am starting my marathon outpatient clinic appointments. We have 7 in the next 6 weeks. Have I mentioned how much I HATE the hospital?? My stomach turns each time we set foot in the door. :mad:

We had an appointment with a new sub-specialty yesterday to discuss Brigitte's neuro status. The recommendation is that we set her up with Boston's LEND Program. It is a service made up of Neurology, Psychiatry, Psychology, Gen. Peds, Developmental Medicine, Social Work, PT, Speech, and OT. She will go in for a 3 days of intensive appointments and NeuroPsych Evals. Then at the end we will meet with all of the team members and go over their findings and recommendations. I guess we will end up with what is usually a 300 page report that will help us address her "deficits".

Next up on Friday is GI. Her weight is down :sad2:....but that is no surprise. She is struggling terribly at night with the visceral pain and we wind up shutting the pump off more than it runs!! What can you do?? :confused3

I probably should get her into the Pediatrician soon too...another sinus infection. We had a good 3month run at the end of October...but she's had one for January, February and March again. Guess I should add ENT to the list again!! :rotfl:

I have pulled out my suitcases and have started to throw a few things in here and there. Got Brenna another bathing suit the other day. Hoping to pick up Crocs for the kids this weekend. I think I am going to make "Vacation" themed Easter Baskets this year!! Crocs, bathing suits, sunglasses, sunscreen, etc....

I am having a blast living vicariously through all the new TR's!! I just can't wait for this vacation to be here!!! We have 3 cheerleading competitions and 2 baseball tournaments coming up. One is in RI, the other in NY...so those will keep us occupied!!! I think we are down to 38 days now....but who's counting?? :lmao:

Hi Shannon -- so sorry about all the appointments! :guilty: I feel the same way about our Hospital sometimes!!! I'll be thinking of you --- just think with each one that's down, it's one step closer to your trip! :banana:

I'm also doing that for Easter this year! Of course, Abby reminded me that last year I had all these clever clues that related to Easter, that I had them go all around the house in order to find their basket (we do one family basket). I had totally forgotten that and so now I've got to rack my brain for some ideas!! :laughing:

Where's the baseball tourney in RI?

And I'm also living vicariously through the TRs....and getting nothing done here! :rotfl2:

Just letting you know we'll be thinking of you and praying for Brigitte's appointments! Keep throwing those things in to the suitcases so you can keep your mind on something outside of Boston Children's!!!

Blessings,

cantwaittoseemickey
03-17-2010, 05:29 PM
Im sorry to hear you are on a whirlwind of apts. I get in a funk when we have apts like that. My stomache goes on its own tirade:( We will be thinking of you and Brigette.

I am so sorry to hear her weight is down and the pain is so bad. :grouphug: I hope they come up with a plan to help her feel better.

I need to think about baskets too. I sort of gave the kids thier gifts when they were having a hard day. They were zhu zhu pets so now I need to find something else to put in there:rotfl:

pnutallergymom
03-18-2010, 10:47 AM
Im so sorry you are dealing with the rounds of appointments right now. I hope they come up with some answers to help Bridgette.
Your trip is getting closer. The last month seems to fly by and Im sure will for you being so busy.
Just a note on the pirate league. We all did it and I'll be updating Gavin's TR today on it. Just be sure you get some make-up remover!!


I read your TR last night!! Love the Pirates League Pics!! I had a feeling the make up would be tough to get off.....we had that problem with hair when Brenna got her BBB makeover a few years ago!! She looked like a princess for a loooooong time!!! :goodvibes

Hi Shannon -- so sorry about all the appointments! :guilty: I feel the same way about our Hospital sometimes!!! I'll be thinking of you --- just think with each one that's down, it's one step closer to your trip! :banana:

I'm also doing that for Easter this year! Of course, Abby reminded me that last year I had all these clever clues that related to Easter, that I had them go all around the house in order to find their basket (we do one family basket). I had totally forgotten that and so now I've got to rack my brain for some ideas!! :laughing:

Where's the baseball tourney in RI?

And I'm also living vicariously through the TRs....and getting nothing done here! :rotfl2:

Just letting you know we'll be thinking of you and praying for Brigitte's appointments! Keep throwing those things in to the suitcases so you can keep your mind on something outside of Boston Children's!!!

Blessings,


Beth, the baseball tourney is in Johnston and Providence....two different fields. The team is staying at the Hampton Inn in Warwick. I am getting annoyed because the schedule isn't finalized yet, and we have no idea whether there are games on Friday night or not.....or even Sunday. Brenna has cheer practice on Sunday and can't miss it because she has 3 competitions coming up!! So, I am going CRAZY!!!! :eek: With 4 kids, you always need a "plan"....and I don't do well when there isn't one in place!!! :scared1:


Im sorry to hear you are on a whirlwind of apts. I get in a funk when we have apts like that. My stomache goes on its own tirade:( We will be thinking of you and Brigette.

I am so sorry to hear her weight is down and the pain is so bad. :grouphug: I hope they come up with a plan to help her feel better.

I need to think about baskets too. I sort of gave the kids thier gifts when they were having a hard day. They were zhu zhu pets so now I need to find something else to put in there:rotfl:

Thanks for the thoughts!! I am so sick of the doctors!!! I hate it even worse when we seem to be floundering without alot of helpful solutions....makes it worse when pain is an issue. Lets just say, she has not been a very happy camper lately!!! :sad2:

Mtopher4
03-18-2010, 05:25 PM
:hug:


strong-willed and determined .. that is Ashley too LOL.. Add Sassy, bossy, determined not to clean up anything at home, etc.... Her Brother has ADD and I know she must have it too :(

Our week worth of appointments is coming up the last week of April :( SUCKS

subscribing... I know I have seen you around but I missed your PTR somehow :(

Mtopher4
03-18-2010, 05:59 PM
DUH... I have looked at your carepage before :-) Your kids are Beautiful

cantwaittoseemickey
03-21-2010, 01:29 PM
I read your TR last night!! Love the Pirates League Pics!! I had a feeling the make up would be tough to get off.....we had that problem with hair when Brenna got her BBB makeover a few years ago!! She looked like a princess for a loooooong time!!! :goodvibes




Beth, the baseball tourney is in Johnston and Providence....two different fields. The team is staying at the Hampton Inn in Warwick. I am getting annoyed because the schedule isn't finalized yet, and we have no idea whether there are games on Friday night or not.....or even Sunday. Brenna has cheer practice on Sunday and can't miss it because she has 3 competitions coming up!! So, I am going CRAZY!!!! :eek: With 4 kids, you always need a "plan"....and I don't do well when there isn't one in place!!! :scared1:




Thanks for the thoughts!! I am so sick of the doctors!!! I hate it even worse when we seem to be floundering without alot of helpful solutions....makes it worse when pain is an issue. Lets just say, she has not been a very happy camper lately!!! :sad2:

I'm so sorry she is in pain. I hope they can come up with something to help her. :hug:

noahsketomom
03-22-2010, 07:33 AM
Beth, the baseball tourney is in Johnston and Providence....two different fields. The team is staying at the Hampton Inn in Warwick. I am getting annoyed because the schedule isn't finalized yet, and we have no idea whether there are games on Friday night or not.....or even Sunday. Brenna has cheer practice on Sunday and can't miss it because she has 3 competitions coming up!! So, I am going CRAZY!!!! :eek: With 4 kids, you always need a "plan"....and I don't do well when there isn't one in place!!! :scared1:


Hi Shannon, hope things are going well for you and that you didn't run into any snags with the appointments.

I totally know what you mean -- having no plans with 4 kids in tow usually doesn't work out too well!!! ;) Let me know if you need anything or if I can help you in any way. We're about 40 min from Providence, and maybe 50 from Johnston. If I can help you at all, don't hesitate, kay? :thumbsup2

Thinking of you guys and the craziness of the next month. But just think of the time when you can RELAX in the Florida sunshine!!! :yay:

pnutallergymom
03-22-2010, 02:21 PM
DUH... I have looked at your carepage before :-) Your kids are Beautiful

Thank you so much!! :)
I'm so sorry she is in pain. I hope they can come up with something to help her. :hug:

Thanks you...she is a tough cookie!! We messed with some of her meds, so hoping that will help a little bit!!

Hi Shannon, hope things are going well for you and that you didn't run into any snags with the appointments.

I totally know what you mean -- having no plans with 4 kids in tow usually doesn't work out too well!!! ;) Let me know if you need anything or if I can help you in any way. We're about 40 min from Providence, and maybe 50 from Johnston. If I can help you at all, don't hesitate, kay? :thumbsup2

Thinking of you guys and the craziness of the next month. But just think of the time when you can RELAX in the Florida sunshine!!! :yay:

Thanks Beth. We finally got the schedule on Saturday. Its not so bad now. No game on Friday night. A double-header on Saturday and depending on how they do in those games, he might play on Sunday. We have decided to stay at my MIL's for the wknd. She is only 30min from Providence, so I cancelled the hotel!! I'd rather spend the $$ on Disney!!! Thank you for your offer though!!!



Sooooooo.....Brigge has been making out ok at some of her appointments. GI is happy that she hasn't had any dramatic weight loss. We'll revisit the issue of having the central line placed again after we get back. Tomorrow she has a pulmonary appointment.

In MAW news.......I haven't heard anything new yet. I emailed them today to let them know that we are literally booked up every weekend until we leave. Travelling to RI, NY, Springfield, Worcester, Easter, etc!!! I wanted to see if we could nail down a date to get together to go over the documents. I think she thinks I'm crazy. She didn't want to make any plans until a week or two before we go. Fine by me, I just wanted a date. Not that I am any more busy than someone else, but with the kids sports schedules, Brigitte's doctors appointments, the holiday coming, and have I mentioned that DH is studying for the Bar Exam in July???? :scared1: This house is just non-stop all the time and I like to have things on my calendar!!!

Ok...stepping down off my soapbox now!!

Momofwishkid
03-22-2010, 09:17 PM
Thank you so much!! :)


Thanks you...she is a tough cookie!! We messed with some of her meds, so hoping that will help a little bit!!



Thanks Beth. We finally got the schedule on Saturday. Its not so bad now. No game on Friday night. A double-header on Saturday and depending on how they do in those games, he might play on Sunday. We have decided to stay at my MIL's for the wknd. She is only 30min from Providence, so I cancelled the hotel!! I'd rather spend the $$ on Disney!!! Thank you for your offer though!!!



Sooooooo.....Brigge has been making out ok at some of her appointments. GI is happy that she hasn't had any dramatic weight loss. We'll revisit the issue of having the central line placed again after we get back. Tomorrow she has a pulmonary appointment.

In MAW news.......I haven't heard anything new yet. I emailed them today to let them know that we are literally booked up every weekend until we leave. Travelling to RI, NY, Springfield, Worcester, Easter, etc!!! I wanted to see if we could nail down a date to get together to go over the documents. I think she thinks I'm crazy. She didn't want to make any plans until a week or two before we go. Fine by me, I just wanted a date. Not that I am any more busy than someone else, but with the kids sports schedules, Brigitte's doctors appointments, the holiday coming, and have I mentioned that DH is studying for the Bar Exam in July???? :scared1: This house is just non-stop all the time and I like to have things on my calendar!!!

Ok...stepping down off my soapbox now!!

Good luck with the appointment tomorrow. Wow! It sounds like you guys really are busy. Were you able to get a date for the get together?

kellyw8863
03-23-2010, 07:48 PM
Hey there! I've been thinking of you guys. I'm glad that GI went well, and I'm hopeful that pulmonary went well, too. I hear you on wanting dates. I feel like the next couple of weeks are going to be insane, and honestly, I'm stressed about getting ready to go on top of everything else! I'm hopeful that we can meet up at AKL. I think it would be cool to have a cocktail and watch the kids play should our schedules allow!

Thinking of you guys.:grouphug:

pacrosby
03-24-2010, 12:06 AM
and then of course there's that cocktail with me ;)

I've been quite remiss lately and am so behind on everyone's reports. Sounds like your pretty busy too. Don't worry about finding time to meet with them for final review. I think ours came out a couple of days before (and it was a week night). It took very little time. Or maybe you guys are getting some kind of send-off? That'd be different of course.

Hope all the appts go well :)

cantwaittoseemickey
03-24-2010, 02:19 PM
Just wanted to see how everything is going. Thinking of you all!

pnutallergymom
03-24-2010, 09:46 PM
Good luck with the appointment tomorrow. Wow! It sounds like you guys really are busy. Were you able to get a date for the get together?

Hi Jennifer!!

They never did give me a date!!! :confused3 Said they were still working out a few details and would be in touch with me in a few weeks!!! :scared1: This totally puts me over the edge, but hey, what can you do???:)


Hey there! I've been thinking of you guys. I'm glad that GI went well, and I'm hopeful that pulmonary went well, too. I hear you on wanting dates. I feel like the next couple of weeks are going to be insane, and honestly, I'm stressed about getting ready to go on top of everything else! I'm hopeful that we can meet up at AKL. I think it would be cool to have a cocktail and watch the kids play should our schedules allow!

Thinking of you guys.:grouphug:

OMG Kelly, I am stressed tooo!!! Dealing with it by total avoidance :rotfl:!!! I left you a note on your PTR on our plans to see if we can squeeze something in!!! :goodvibes The kids would have a blast together.....but you might leave rather quickly after Brigge gets to talking! :rotfl2: She's been sooooo bad lately!! Lets just say I have been doing alot of this :drinking1 after putting that kid to bed at night :rolleyes1. I think that not uttering a word for the first 3 years of life makes her think she needs to catch all the way up! :laughing:

and then of course there's that cocktail with me ;)

I've been quite remiss lately and am so behind on everyone's reports. Sounds like your pretty busy too. Don't worry about finding time to meet with them for final review. I think ours came out a couple of days before (and it was a week night). It took very little time. Or maybe you guys are getting some kind of send-off? That'd be different of course.

Hope all the appts go well :)

Yeah, Pamela, I don't think a send-off is in our future :rotfl:. Actually, I think they can't wait for this wish to be over with and get us off there backs!! :rotfl: They'll probably drop that envelope off and :moped: !!

Lets def. figure out a time to get together.

Just wanted to see how everything is going. Thinking of you all!

Hey Tonya!! Things aren't going at all!!! :rotfl: Terrible, I know!!!!! Thanks for the love!!! :lovestruc

pnutallergymom
03-24-2010, 10:13 PM
So, seems as if I am sitting here spending another night on.....what else??? The DIS. :rolleyes1 This obsession really needs to stop. Really, truly it does. :rotfl:

I did manage to get myself up and out the door this morning while Brigge was at school. Hit the old Wally World and feel good about the fact that I got the kids Easter gifts out of the way!! Oh, and I got a pair of shorts for Brigge and some swim diapers!!

What????? Its a start, right???

I know, I know!! Terrible.

I realized that I had written that Brigge's pulmonary appointment was yesterday, but it was actually today. So I picked up the little chatterbox from school and headed into Boston. Her appointment was at 12:45...we were seen promptly. Spent 3 hours in the room with her doctor. Yes, THREE hours :scared1:.:yay: Perfect timing for rush hour traffic heading north back to NH. :mad:

I should be grateful we got alot accomplished. She's going to have another sleep study and an exercise induced stress test. Yes, on a 3 year old. The oxygenation in her lungs is really bad. We know she shunts due to her cardiac defects. Her ASD was left open as a pop off valve so to lessen the stress on her overworked right ventricle. Soooooo.......it causes her to be somewhat dusky and short of breath, especially during exercise. Nothing we didn't know about. The problem is being exasperated because she is still aspirating. We think it is because of the cleft that was left unrepaired due to a laryngospasm she had during the case and the surgery was cancelled. Got to figure out this now too. Her chest xrays are looking worse each time she has one. Again, nothing new, just stuff that hasn't been dealt with because of all the other stuff that has been going on. Just can't avoid it anymore.

I got a very nice email the other day from MCAZER who so graciously offered to send the kids autograph books. After literally spending two hours with them trying to pick out what the wanted, they made their choices!!! The package came today, but nobody was allowed to open them. :eek: The package is sitting on the buffet just waiting to be opened by those bad, bad kids!!! :rotfl: Seems as if the little feet in this house think that the days of listening to mom and dad are over and they can abide by their own rules. :headache: So, Margaret, I PROMISE as soon as they can behave, I will post pictures of the contents. Tonight, I have been dubbed "THE MEANEST MOTHER IN THE WHOLE WORLD"!! :lmao: Apparently they haven't realized how to win over my affection and those words aren't getting them their package any quicker. :upsidedow

Ok, gotta go make myself another :drinking1 and do some more :laundy: and after that, some more :surfweb:. Sooner or later I will get some packing done!!!!! :rotfl: Just not tonight, and probably not tomorrow. Definitely not this weekend!! Maybe next week??? :scared1:

cantwaittoseemickey
03-24-2010, 11:56 PM
Hi Jennifer!!

They never did give me a date!!! :confused3 Said they were still working out a few details and would be in touch with me in a few weeks!!! :scared1: This totally puts me over the edge, but hey, what can you do???:)




OMG Kelly, I am stressed tooo!!! Dealing with it by total avoidance :rotfl:!!! I left you a note on your PTR on our plans to see if we can squeeze something in!!! :goodvibes The kids would have a blast together.....but you might leave rather quickly after Brigge gets to talking! :rotfl2: She's been sooooo bad lately!! Lets just say I have been doing alot of this :drinking1 after putting that kid to bed at night :rolleyes1. I think that not uttering a word for the first 3 years of life makes her think she needs to catch all the way up! :laughing:



Yeah, Pamela, I don't think a send-off is in our future :rotfl:. Actually, I think they can't wait for this wish to be over with and get us off there backs!! :rotfl: They'll probably drop that envelope off and :moped: !!

Lets def. figure out a time to get together.



Hey Tonya!! Things aren't going at all!!! :rotfl: Terrible, I know!!!!! Thanks for the love!!! :lovestruc

:rotfl: RUHHH ROOO!!! Not good!! You sound like me. I think they were so ready for us to decide if we were going to be able to go or not and when I finally gave them the answer they probably did a huge sigh of relief that they didnt have to hear from me for a while! :rotfl2:

cantwaittoseemickey
03-25-2010, 12:02 AM
Glad you can begin to focus on some things that they didnt have a chance in the past. I hope the tests go well hun.

Ps. Im having a HARD time keeping up with everyone right now :rotfl2: But lovin it!!!

Mtopher4
03-25-2010, 12:05 AM
:hug:
I got into it with my sassy 8 year old boy and my wish kid tonight. Kids..... Ashley thinks since she is special she shouldn't have to clean. I told her if she is able to make a mess she is just as able to clean it up. :confused3 They always want to get away with something don't they? LOL

Momofwishkid
03-25-2010, 06:31 PM
Glad you were able to get some shopping done. Dont you just love it when your appointments make you hit that rush hour traffic.

pacrosby
03-26-2010, 09:28 AM
You can't possibly be the meanest mother in the world. That's MY title!! :rotfl2:

kellyw8863
03-26-2010, 04:37 PM
I'm glad that you got a lot accomplished with her pulmo appointment, even if it wasn't all good.:hug: Who do you guys see in pulmo? I think Ali's pulmonologist is one of our favorite doctors. We just love him. Even my husband does, and he's pretty noncommittal.:rotfl2:

I hope the kids were good today - I can't wait to see what's in the package!:woohoo::rotfl2:

wishin' on a star
03-26-2010, 05:02 PM
Hi Shannon!

Just popping in to say hello...I'm subscribing!

pnutallergymom
03-29-2010, 08:56 PM
Hi Guys,

So, we had an eventful weekend to say the least. The worst of it yesterday morning. My dog (75lbs, 8mo old German Shepherd) decided to chase my kitty through the house and knocked me over. I went to the ground immediately and heard the "crack"......broke my foot. The break is to high up on my foot and toe to be casted, but I am on crutches and in a Ginormous aircast...:scared1: Doc says I should just about be feeling better by the time we leave IF I do as I am told and follow orders over the next 3 weeks. I can't even believe it.

Trying to figure out how to manage the 3 kids and Brigitte from the couch is going to be pretty interesting!! Guess I'll have lots of time to check out all things DIS!!!!

We got our welcome packet from GKTW too!!! So, this is really happening, broken foot and all!!!:rotfl:

wishin' on a star
03-29-2010, 10:41 PM
Hi Guys,

So, we had an eventful weekend to say the least. The worst of it yesterday morning. My dog (75lbs, 8mo old German Shepherd) decided to chase my kitty through the house and knocked me over. I went to the ground immediately and heard the "crack"......broke my foot. The break is to high up on my foot and toe to be casted, but I am on crutches and in a Ginormous aircast...:scared1: Doc says I should just about be feeling better by the time we leave IF I do as I am told and follow orders over the next 3 weeks. I can't even believe it.

Trying to figure out how to manage the 3 kids and Brigitte from the couch is going to be pretty interesting!! Guess I'll have lots of time to check out all things DIS!!!!

We got our welcome packet from GKTW too!!! So, this is really happening, broken foot and all!!!:rotfl:

Oh goodness! I'm so sorry you broke your foot!!! :hug: I'm glad it wasn't any worse. Put it up and get some rest.

noahsketomom
03-29-2010, 11:41 PM
Shannon -- I'm so sorry! Ugh!

I hope you can get some rest (amidst the busy times in the next few weeks) so that it can heal properly for the trip!!

:hug: hugs to you!! Prayers for a speedy recovery!

cantwaittoseemickey
03-30-2010, 10:43 AM
Oh no!!:grouphug: I hope you are able to take it somewhat easy so your foot can heal before your trip. huge hugs!!

kellyw8863
03-31-2010, 06:54 PM
What?!?! I hope your foot heals quickly!:hug::hug::hug:

pacrosby
04-01-2010, 12:06 AM
YIKES :eek:

wish there was something more helpful I could offer but.................I'm at a loss!

YIKES :eek:

Rest up and feel better soon :hug:

yinyanggirls
04-01-2010, 12:07 AM
Oh no!!! Seriously?!? Well, I guess the timing was okay, if it had to happen beforehand. :sad2: Hope you can mind the doctor and get well soon!

kellyw8863
04-06-2010, 05:07 PM
Just checking in to see how your foot is healing.:hug: