Sebastian's Make A Wish Trip to Disney

[zeppy68]

Welcome back!

Cant wait to here more. Dont get to stressed.



Ian was allergic to everything his face would always break out and he would spit up. We tryed every formula possible. I thinked we ended up with nutromigen but it was like a 8 or 9 dollars a bottle.

Though some inusrance companies reimburse for special formula.


Joe

 

[kimmylaj]

welcome back
and that angel story is amazing it truly gave me chills.

 

[goodmorningirl]

Welcome Back! Can't wait to hear about your trip! And that story and pic of the angel is amazing.

 

[iu97alum]

Welcome home! Can't wait to hear the TR! Glad the ears are doing well and hope that you get some answers on your little one soon.

 

[maroo]

Took the kids to the doctor today. Good news is all three sets of ears are looking great!

Bad news is Savannah is still not growing. Dr. Queen is sending us to Pediatric GI...say's he will want to scope her....don't know what all that involves. Anyone? She's also ordering the Cystic Fibrosis sweat test after all. One in 1000 whose pregnacy test was negative do end up having it. I just want the mystery solved.

She is still spitting up like crazy. Doesn't matter what it is, breast milk, formula, cereal, sweet potatoes...
I took some more picturs of the puddles she left all over Disney. One kid almost sat in a pool of her spit up

I'm still unpacking and have not even had a chance to down load the pictures from the camera. I don't have a single present wrapped for Christmas either. Brian and my in-law are headed out of town so just me wit hthe three kiddos...ACK!

I think I have PDD...Post Disney Depression

First of all...love, love, love the angel story.

I wish I had a digital copy, but I have a picture that is similar to that...that I took at an incredible outdoor worship event (Passion Conference - One Day 2000 - if any of you are familiar with those conferences)...of a college student standing by herself with her hands up to the sky. She was so into the worship. It was so neat, because most of the students were sitting on blankets around her, some wrapped in blankets, because it was wet and cold (all day event) and she was alone...standing there. When I developed the picture there was this really bright flash of light above her head going straight up to the sky. It was raining that day. A sunless, wet, dreary day.

She was one of the few students that "walked to the front" during a "call to missions" portion of the program where students that felt, for the first time in their life, that they were called to overseas missions. I believe God changed her heart that day.


Anyway...

I am glad the surgeries went ok...but I am concerned about Savannah and will continue to pray for her.




We can't wait to hear about your trip!!

I'll grab the popcorn....

and some soda... yes...that IS soda!

and bring this guy to help you wrap presents...

so the FUN can begin!

 

[oklamomof4boys]

Welcome home Amber! I'm so glad you had a wonderful time and I can't wait to hear all about it!

I love the Angel story. I can't wait to share it with others. I so believe in angels- Nathan has seen them several times. An angel used to be a regular visitor in his bedroom at night.

William had a sweat test for CF almost exactly 13 years ago. It was very quick and easy. I also had a doctor friend tell me that I could lick him ( I had to wait a couple of weeks before we could get the test done and I was very nervous) CF kids are extremely salty. Hopefully you will have some good news on Savannah soon.

Carol

 

[twob4him]

I love the angel story too! I completely love stuff like that because it just confirms the truth. My kiddos all gathered around the computer while I read the story to them (We had just watched Jon and kate plus 8 where they went to St Jude hospital so I related it to that). They went crazy when I showed them the picture and read the part about the little girl going home. We all cried!

So I am really excited about your trip report. I am glad to hear that the doctors appt went well for the ears. I hope little Savannah starts gaining weight...poor thing....throwing up is no fun. Prayers and thoughts of you all.

Get some rest and don't worry about wrapping gifts. I havent even started shopping yet....my dh and I are going Friday so you are still way ahead of me!

 

[AmberGreenawalt]

I took Savannah for her Cystic Fibrosis test at Levine Children's Hospital Friday morning. I was more stressed about driving to the hospital in the dark and early morning fog than I was about the outcome of the test. Reading up on CF it was apparent why Dr. Queen would think Savannah could have it. BUT the disease is genetic.

For Savannah to have it she would have to have inherited the gene from both Brian and I. Each child that Brian and I had would have a one in four chance of having CF. The fact that we already have two children without the disease and that my previous pregnancy screenings never red flagged me as a carrier bode well for us. The Nurse who did the test told me that 99 percent of the time doctors ordering the sweat chloride test were doing so to “rule CF out” –eliminating it in the possible differential diagnosis.

The test itself was interesting. I’m used to needles and blood draws or scans and X-rays. This was a horse of a different color. Basically it involved placing copper pads on Savannah’s arms and hooking her up to a battery. The battery is then gradually turned up and electricity is conducted through her. Savannah cried at the initial shock and for the first minute of the current but then settled down as her body got used to it. Nurse Martha said it felt like when your foot falls asleep.

The current stimulates the sweat glands. A gauze pad was placed on her lower forearms and wrapped in several layers of plastic. After twenty-five minutes it was removed and the gauze was placed in a sterile bottle and weighed. At least 100 miligrams of sweat had to be collected to run the test.

The sweat that is collected is then evaluated for the chloride level. People with CF produce an excessive amount of chloride in their body.

Brian had dropped the kids off at our friend's house so after we left the hospital I went over there to pick them up. We hung out for awhile there and came home at noon. I put the kids to bed since they were cranky (they got up at 5:00 a.m.!) and guess what I did?

I went to sleep too! I put Savannah in her crib since she was snoring so loud it was driving me nuts. I slept from noonish-1:45 when Savannah’s crying woke me up, I went and got Savannah, nursed her and then we both went back to sleep until 3:30 p.m.. When I got up I found Sebastian in the Bonus room watching T.V. Siennah thankfully was still sleeping!

Sebastian had sprayed this body spray stuff that Grandma gave him all over himself. The whole room reeked of “Axe”. He was so proud of himself. When I went downstairs I saw that he had eaten the entire plate of sugar cookies he decorated earlier that morning at Heather’s. When I asked him why he ate all of them he said, “Because I was hungry.”

Yeah I’m really up for “Mother of the Year” aren’t I?

Dr. Queen called late afternoon. Great news! Savannah tested negative for Cystic Fibrosis. Even though that is what we expected it is still a huge relief. In my mind this was probably the worst diagnosis for her symptoms. The life expectancy is 30-40 and the disease generally gets worse over time.

Our next stop is the Pediatric Gastroenterologist early next week. Dr. Queen is thinking it will be Tuesday.

I told Dr. Queen that sometimes I get to thinking that maybe it’s all in my head. But she said no something is definitely wrong. I’ve started videotaping Savannah whenever she has some sort of symptom---like the other night when she was coughing in her sleep every 1-2 minutes. She would half wake-up, have a cough, drift back off to sleep and then repeat it again. That went on for over an hour. I’ve videotaped her coughing after nursing or having a bottle. I’ve also recorded her doing the awful thing were she screams makes herself rigid and arches her back into a backwards “C” shape. That is probably the most frustrating symptom because I feel so bad for her and don’t know how to get her comfortable.

I’ve also been keeping a record of her day…what she eats, when and how much, dirty diapers. Also, when she spits up, coughs, does the crying-rigid-arching thing, even all the stinky farting!

We noticed it definitely doesn’t matter what the consistency of the food is…she spits up anything. The other day I gave her sweet potatoes mixed with rice cereal at 1:30 p.m. and it came back up at 5:00 p.m.

We went up to Spencer Saturday morning to ride the Christmas train.
When we got home it was nap time. Instead of tackling the MOUNTAIN of laundry I have from Disney or the PILES of dishes or working on our trip report. I took another nap. From 2:00-5:00. I think my body is just so tired from 2008. I also think I’m at that point where I’ve gotten so behind that what needs to be done is just so overwhelming that I feel like “Aw the heck with it. It will be there when I wake up!”

Savannah has been running a 102 fever since last night. She spit up three times last night while we were at a friend's Christmas party. I took a picture of the second round. It just pours out of her…it’s crazy. It’s not like we’re jostling her or anything. She was just cuddled against my chest and then suddenly…BLAGH… She spit up again when we got home. I hope we can find a way to help her that works soon

 

[Khalana]

I'm so happy the test was negative! But I'm going to keep praying for you and her. I really hope they can find out what's hurting that precious little girl! When I looked at her pictures it hurt to see how skinny she is. It must be just so horrible to see her in pain like that when she screams and arches her back...

Good for you taking a nap! I think you're priorities are good. The laundry will always be there, Christmas will still be Christmas but it is sooo important to take care of yourself, otherwise you won't be able to take care of your kids either. I usually take a nap every day when the kids nap. Even if I don't sleep, it really recharges me to lie down for 20 minutes or so. You should make sure you get a nap in this whole week, I think. Maybe someone can help you with the laundry? Do you have any family or close friends nearby that will either take the kids for a few hours or do the laundry for you? I'd do it if I lived closer.

Lots of and praying that you guys will be able to have a peaceful Christmas together.

 

[oklamomof4boys]

You poor dear- you have been through so much this year. I, too, hope they find something to help Savannah soon. You obviously needed some sleep. You probably still need some extra sleep. It seems like as mothers we feel like it is our job to keep everything together. I know I tend to keep everything inside. A month after one of Nathan's cardiology appointments I thought I had been handling everything just fine. Then I went to the dentist for a filling and when they gave me gas and I finally relaxed enough to let everything out. I bawled in the dentist chair and it felt so good!

I agree with Khalana. Don't try to do everything yourself. You need some TLC also!

I'm glad the sweat test was negative. We'll be praying they find something to help soon!

Carol

 

[twob4him]

That was the most bizzare test....who knew electricity makes you sweat??? Glad everything turned out ok.

I couldnt agree more with everyone about taking naps consistently everyday for the next few weeks. (hey I took one today myself!) And I also agree it would help if you had a helper come over to your house to help with laundry/folding/putting away or cleaning or cooking or whatever. Is there a teenager who needs some extra cash or a friend or neighbor who can help out? I would do it too if I lived closer.

I really hope they find the source of poor Savannah's digestive problems. My daughter spit up for the first year but nothing like what you are describing. I hope the gastro doc can help. Definately bring your video's and info to the appointment. You are doing the right thing mom! And to answer your question....yes, you are up for mom of the year!!!!! You're the best!!!

 

[tinytreasures]

hope you get answers soon

that test is so different then what we did for Jason
he had a circle thing with the copper wiring taped to his arm then we had to wait for a hour to see it he sweat
the first time didn't work so we had to go back and do it again

 

[pigget74]

I took Savannah for her Cystic Fibrosis test
The test itself was interesting. I’m used to needles and blood draws or scans and X-rays. This was a horse of a different color. Basically it involved placing copper pads on Savannah’s arms and hooking her up to a battery. The battery is then gradually turned up and electricity is conducted through her. Savannah cried at the initial shock and for the first minute of the current but then settled down as her body got used to it. Nurse Martha said it felt like when your foot falls asleep.

The current stimulates the sweat glands. A gauze pad was placed on her lower forearms and wrapped in several layers of plastic. After twenty-five minutes it was removed and the gauze was placed in a sterile bottle and weighed. At least 100 miligrams of sweat had to be collected to run the test.

I told Dr. Queen that sometimes I get to thinking that maybe it’s all in my head. But she said no something is definitely wrong. I’ve started videotaping Savannah whenever she has some sort of symptom---like the other night when she was coughing in her sleep every 1-2 minutes. She would half wake-up, have a cough, drift back off to sleep and then repeat it again. That went on for over an hour. I’ve videotaped her coughing after nursing or having a bottle. I’ve also recorded her doing the awful thing were she screams makes herself rigid and arches her back into a backwards “C” shape. That is probably the most frustrating symptom because I feel so bad for her and don’t know how to get her comfortable.

I’ve also been keeping a record of her day…what she eats, when and how much, dirty diapers. Also, when she spits up, coughs, does the crying-rigid-arching thing, even all the stinky farting!

We noticed it definitely doesn’t matter what the consistency of the food is…she spits up anything. The other day I gave her sweet potatoes mixed with rice cereal at 1:30 p.m. and it came back up at 5:00 p.m.

Savannah has been running a 102 fever since last night. She spit up three times last night while we were at a friend's Christmas party. I took a picture of the second round. It just pours out of her…it’s crazy. It’s not like we’re jostling her or anything. She was just cuddled against my chest and then suddenly…BLAGH… She spit up again when we got home. I hope we can find a way to help her that works soon

When oldes DS had the CF test they just put basically saran wrap around both arms with a pad under it--I knew they were collecting the sweat--it took 30 mins.

My DD sounds a little like yours---we are trying to see a ped. gastro., but our Dr. wants to give it a little more time. She is 15 mths and I have been asking questions since she was 6 mths. She has never had a normal poop in her life--she still goes almost after every meal--up to 6 times a day. I nursed her and her poops never stopped being like a nursed baby--even when that was supposed to slow down it didn't. She would spit up or throw up a lot--especially sweet potatos and it was always 3 hours later with them. We do the same curved back C with uncontrollable screaming for 45 minutes--nothing settles her--then when she does go back to sleep and wakes up she farts for several minutes sometimes. One thing we do know is that she CANNOT have PROTEIN from COW's milk. We have to give her rice milk. It took us until October to figure that one out--since I nursed for so long and only started giving her formula in June. She got ecoli in OCtober from our water and that is how we found out about the milk. She lost 2.5 pounds and has yet to gain it all back. She has been late doing everything-
I will keep you guys in our prayers. Sorry for rambling...

 

[mom2lilnick]

Glad everything was neg! Nick had the cf test done twice but not with electricity. I hope the GI appt give some answers. She reminds me so much of Nick when he was little but I hope it is just something like MSPI or reflux. Hugs and prayers coming your way.

 

[kimmylaj]

mia had the arching back uncontrollable crying thing also, she had reflux. she was on axid ( i think that was the name it was 2 years ago) she also had thickened formula, but she still spit up all the time too. luckily it didnt affect her weight. i hope your gi gets everything figured out soon. savannah is already on medicine for reflux right? because my friends son had it terrible, they gave him prevacid and prilosec. one had to be crushed in his formula and he also had to have some special tea 2x a day. she said it helped him alot. i will say some prayers that all works out well. thanks for filling us in on the cf test i have been thinking of you

 

[AmberGreenawalt]

I went ahead and took Savannah to our Pediatrician this morning because she’s still running a fever that started on Saturday. It’s gone between 101.9 and 103.3. Her heart has been beating fast and her breathing has been rapid as well. I called the after hours nurse line last night because I was really worried about her and she said just to take her in the morning unless her fever got up to 105 degrees. She had spent the whole day sleeping , barely wanting to eat. At night she was crying and really hard to settle down. She would fall asleep and then wake up crying again five minutes later.

So this morning as soon as the lines opened I called and made her the first available appointment. Brian took Sebastian with him to work but I took Siennah with me. Siennah has been complaining off and on the last two days that her ears hurt so I wanted to get her looked at as well.

When we got to the Ped's office the waiting room was packed. I started to settle in for what I thought was going to be a long wait. I was really surprised when we were called and seen right away.

Savannah’s temperature was taken and it was 102 degrees. Then she was weighed. She lost an ounce since last week. I had actually just fed her before we left so Dr. said that it was probably more than an ounce. She said her legs are looking good but her chest and arms are looking thinner. Given the fever and lack of appetite its good she has not lost more.

Siennah just finished up her two weeks on Biaxcin on Friday. She saw the ENT on Wednesday and he said her ears looked great. Today she has a double ear infection. Up until today she had only had one side at a time. What gives?? Dr. called it a “rip roaring” infection (that seems to be the term docs like to use with my kids ears).

Savannah also has a double ear infection even with the tubes in!! ENT said it would be a miracle if she got an ear infection once the tubes were in. Dr. said the tubes are doing their job in that they are draining the ear. You should have seen all the green pus that she pulled out of Savannah’s ears!

I told Dr. that I want to know what bacteria is in there that just won’t die already! She collected a swab of the pus to be cultured as well. It has to be sent out to a lab so I don’t know the results from that yet.

Savannah got catherized to get a urine sample to test for a Urinary Tract infection. Dr. said she was thinking about Savannah the other night and it had dawned on her that she had not get gotten a urine sample from her. She thought maybe it was all as simple as a UTI but alas the initial urine test was negative. It will be cultured overnight so I will know for sure in the morning.

Her nose was also swabbed to test for flu and that test was also negative.

While we were there the Pediatric GI Dr. called about Savannah. He gave us the “option” to put her on Nutramagen formula for a couple weeks and then come see him on January 2nd---the next slot open.

I’ve really learned that Pediatric GIs will not get involved and see your child until you have exhausted all kinds of other things first. It’s frustrating. They wouldn’t even come see her in the hospital when we were there. It took us months of Siennah crying each time she pooped for them to see her!

I said “No” to the waiting “option.”. I want to get thing figured out! We’ll go ahead and see him tomorrow as our ped had arranged. What if the Nutramagen formula doesn’t stop her from refluxing? Then we wasted more time and worse still we’re in 2009. (As it turns out I gave her a bottle of the Nutramegen at 6:45 and at 9:45 she spit it up...I could tell it was the Nutramagen because it smells bad.)

We have already met our maximum out of pocket payout this year for our insurance. That starts ALL over again January 1st 2009. I want any tests that we can get done in 2008 done in 2008.

Same situation with Siennah. She needs to have the tube surgery. I went over to Charlotte EENT after leaving Randolph and I found out that our ENT is on vacation though the rest of the year. Even though we know she needs the tubes the tube surgery can’t be scheduled until she is seen by one of the Charlotte EENT physicians. I made an appointment for her to see the only dude available tomorrow. And then she will have the tube surgery the day after Christmas. I sure hope I like and trust this guy like the ENT who did Sebastian and Savannah's surgeries.

Both Siennah and Savannah got shots of the antibiotic Rocephine in their legs. They have to go back again and get more shots later in the week. So before knowing what GI type tests are in store this is what the week looks like so far:

Tuesday:
11:30 Siennah ENT
Pick up refill of Prevacid, new drug Bethanecol and Nystatin from compounding pharmacy
1:20 Savannah Pediatric GI

Wednesday:Shots of Rocephine for Siennah and Savannah

Thursday:Christmas! A break!!

Friday:
Siennah tube surgery and shots of Rocephine for Siennah and Savannah

The good news is that Brian took his vacation this week so starting tomorrow he will be off.

Remarkably I don't feel stressed about Christmas. I finished wrapping everything...there was less to wrap this year so it didn't take long I don't feel like there is anything else that "has" to be done. I decided to go ahead and hire someone to clean the house. I've just been focusing on enjoying the kids. I guess one nice thing about Savannah being sick is I've gotten to snuggle her all day. Sebastian and Siennah are positively excited. I'm looking forward to seeing their rections on Christmas morning.

My Christmas present arrived today...the Photopass CD from our trip. 286 photos on the CD. Add that to my 1500 photos I took plus the GKTW CD and I bet I have 2000 photos. Boy, that's going to take awhile to put pare down and put into a Trip Report.

 

[maroo]

Bless your heart! I hope the doctors are able to get stuff figured out! It sounds like your doctors are attentive...which is nice.

About your TR...

This is what I did...and it helped...

I merged my pics...into days...first...before you forget what happened on which day

then I just wrote one day at a time and went from the pictures to write my report. I didn't really take notes...just went from the pics. I resized ALL pics to "Large" when I posted them. And just let it flow...Just take one day at a time...even parts of a day...you don't have to do it all at once...that is way more than anyone can chew!

You will really enjoy writing it! It is like you are back there...very therapeutic. That is why I am not done with mine yet...once my TR is done, I feel like the trip is really done.

anyway...just wanted to encourage you about your TR.

 

[oklamomof4boys]

I am glad you were able to get Siennah's tubes scheduled so quickly-especially around the holidays. I understand what you mean about getting everything done in 2008 since you've already met your out of pocket. That is why William had his CF test done on NYE- of course that was 13 years ago. Good for you for being insistant that Savannah see the GI asap! I will be anxious to hear what you find out.

You made a good call having the house cleaned also. You are right- spend your time with your children!

BTW, I am watching the Today show and they are going to have a story about your angel story! I am glad I woke up early and got up so I can see it ( I work in a school so I have a couple of weeks off and my kids are finally old enough that they don't get up too early). It was weird to see the picture you sent me on the tv! I sent that story onto all of my friends and family also. I am anxious to hear the story.

Carol

 

[mom2lilnick]

What a busy week! Praying for everything to go smoothly and for some answers at the GI and for the tube surgery. Hugs!

 

[llurgy]

Wow!!! You just never get a break do you??

Hoping that everything goes ahead per schedule and that nothing merges into the New Year that is going to cost you more out of pocket that could have been avoided.
Good luck seeing the GI man, they really,really need to find out what's wrong with your darling little baby!!

Try and have a great Christmas
Love
Mandy