Sebastian's Make A Wish Trip to Disney

I am so thrilled to see the start of your trip! Those kids look like the happiest kids on earth on that airplane! I am glad they enjoyed the plane!

Can't wait to see more! I am anxiously waiting!
 
Great start to your trip!! I love the plush backpack!! You all look so happy, I can't wait to read more.
 
Awesome...limo ride to the airport!!!:thumbsup2 Sure love the pics of the kids. You can see the excitement in the kids' faces!:banana: My DD said that she loves the Minnie plush backpack!!! Great TR so far!!!! Will be looking forward to more!!! Oh...how are the kids, Brian and also, you?
 

oh i am so excited, ryan is sitting next to me is that savannah is that sebastian and siennah, he remembers me showing them to him and he was so excited for them to be in the limo:lovestruc he even wanted me to post that little pic for your kids. i am not surprised the lady didnt move your kids are so cute she probably decided to stay near them on purpose. cant wait to hear more
 
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Great job, Amber!!!! :thumbsup2 It's all bringing tears to my eyes. I love how they had his name and picture on that huge bilboard! :goodvibes The party seemed amazing! I love all the pictures of the kids, they are sooo cute! It is such an amazing feeling to drive trough those gates... :sad1: I wish we could LIVE there...
 
Awesome TR so far! When you have time, I will be waiting with a bowl of popcorn:: with my DD. Hope all is well with everyone in your household!:hug:
 
AWESOME TR so far! :thumbsup2

Great installment! Cool pics! Your kids look SOOOO happy! Wonderful!!!

Woah...Nice limo!!!!!!

Love, love, love the Micky backpack/pillow/bags!!!

Very ingenious use for the bottle. :) She can feed herself! :rotfl2:

I can't wait for MORE, MORE, MORE!

(think I used enough exclamation points!???!)
 
Wow! I finally got caught up on the TR! What a party!!!! It made me tear up to see EVERYONE SMILING!!! WHOO HOO!!!!
 
Amber,

Spent a good chunk of yesterday reading your WHOLE PTR/TR! Your writing is easy to read and your family are real characters! You have beautiful children and it is good to see you were able to do the trip in spite of some real obstacles! Thanks for sharing your story with us! :goodvibes
 
Amber--how are Brian and the kids? Love the report so far--doing great letting us see how it was.
 
Well the rest of our trip report will have to wait :(

I took the kids to see our Pediatrician yesterday about an what looks like an infection on Sebastian's finger. It turns out he has a yeast infection and she prescribed Diflucan for him. Siennah also has yeast on her fingernails. It's all those blasted antibiotics the kids have been on! Our ped also looked at Savannah. She has pneumonia. Also, some of her labs came back from last week. Her immunoglobulin came back low and she is aenemic. She told me to get her admitted to the hospital. I dropped the kids off at my in-laws house and took Savannah to the hospital.

Brian had been up coughing and throwing up the night before could not come with. Instead he went to the urgent care again. The strep throat is gone, but now he has bronchitis.

It's been another one of those whirlwind experiences. The Pediatrician here at the hospital seems stellar! Her name is Dr. Washburn. Dr. Queen sent over Savannah's chart and the two have been coordinating.

Dr. Washburn said the first time a baby comes in failure to thrive they pursue the GI angle. The next time a baby comes in failure to thrive...they start "looking for some Zebras."

Savannah's dance card is filling fast. A Neurologist to check for seizures relating to the arching and rigid episodes. An ID (Infectious Disease) doctor for all the ear infections, fever, mucus etc. Immunologists and Hematology and Oncology for the low immunoglobulins, elevated platelets and anemia and Geneticists to check for Chromosome Disorders. We also have not seen the last of the Gastroenterologists.

Lot's of fun in store :)

Yesterday Savannah had a chest X-ray. They put her into this contraption called a Pigg-O-Stat. I've seen my kids go through a lot of stuff and this ranked right up there among the most tortuous. Savannah HATED it. She basically was smooshed in a tube while I had to hold her arms above her head and one of techs held her head still. After all that the X-rays didn't come out because she was too short and we had to them again on a table in another room.

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Here is our littlest sweet heart. What amazes me about Savannah is how pleasant she is even while she is sick. I think she probably has just gotten used to it. If you enlarge this photo you can see the pus coming out of her ear (just below her strawberry birth mark).

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Savannah started an antibiotic called Ceftin last night. Here she is getting her GI meds from our night time Nurse, Elizabeth.

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This morning Savannah had an EEG. They came for us at 7:00 a.m. Good thing I was up and showered. The EEG was another experience I don't ever care to repeat for my kids. The test itself is not painful at all. The hard part was holding Savannah still to put the 21 nodes on her scalp. She is fiercely strong when upset. I had to straddle her on the gurney to hold her body down and use all the might in my hands to keep her jaw from moving while the tech measured and drew on her head and then scrubbed and applied the conductive jelly and wrap. We had to take several breaks because she was just so irate. But in true Savannah fashion she bounced right back to her sweet natured self when the torture was over and actually did just what the tech wanted...fell asleep.

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This morning Savannah weighed 10 pounds 4 ounces. Dr. Washburn gave strict orders that she is to be weighed everyday on the same scale. So it was a real shocker when she weighed in this morning half a pound less than yesterday's 10.12. This afternoon they brought in another scale because Dr. Washburn could not believe she would have lost that much. The new scale put her at 8 pounds 3 ounces which I knew was just ridiculous! I said let's go put her back on the same scale we used in the morning. I carried her stark naked through the hall to the treatment room. She was 10 pounds 9 ounces. So that is what we are counting as today's weight. It is incredible though that in three months since her 9 pounds 11 ounce 2-Month Well Visit she has not yet gained a full pound!

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Savannah packs away the food. We've already gone through three boxes of the Enfamil nursette's. In the picture below she just polished off her second 4 ounce jar of baby food and went on to drink 4 ounces of formula. In addition to all the formula and baby food she is still nursing three times a day.

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Dr. Washburn is coordinating all the specialist so that we can just do one big draw. She said that this afternoon, "the blood letting begins." She has a funny way of talking. I like it. This morning she asked me, "Have you seen the whites of a GI's eyes yet?" It took me a few seconds to figure out what she meant. The wittiness reminds me of my buddy Ashley (thanks for your blog post btw!)

We've had Nurse Susan yesterday and today. We've had her twcie in the past also. We've actually had most of the nurses here before and most are absolutely wonderful!

In the meantime I am glad that Brian arrived. Being by myself got lonely....fast! Also being incomunicado is hard. I did read a whole book called "Milestones of Medicine" that I swiped from the waiting room. We're only on the second day and I already miss Sebastian and Siennah.
I had Brian bring Savannah a headband so that random folks would stop telling me what a darling boy I have.

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Oh Amber....:sad2:

Bless your heart!!!!!!! :grouphug:

I am so sorry to hear about all of that!

I had the not-fun-at-all experience of going back to the same hospital that Lauren was in to see William. It is just not fair to me that the same family would have to go back to that same Children's Hospital with two different kids that are seriously ill.

I am so sorry!

I am glad your husband is now with you.

Please keep us posted. Gosh, I hope they figure out what is wrong with Savannah very, very soon! I am glad you seem to have a good team of folks trying to figure it out.


Keep us posted...


...in the meantime...I will pass out the popcorn to all who need it while we wait...patiently...for the next installment of your TR!!

popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn:: popcorn::
 
Aw Amber, again, you just cant cut a break!

The Xray looked like something out of the old ages, it should have been situated in the dungeon.
I hope and pray that you are able to get some resolution from the battery of test you are having to have. At least when you know, you can at least try to resolve it, but more important still, it stops all the guessing and 'lets try this-itus' from the doctors.

I am too eating popcorn, but no worries I have enough to last the duration :)

Mandy
 
Amber-my most fav. Dr. is named Washburne---he delivered my last two, but I see him for everything. He is the man that eveyone goes to when something is wrong and no one else can figure it out. I cannot see the pics here at work they are just "x", but if the x-ray machine is the one I think it is I feel your pain. When DS 14 was 10 mths we had to indure this odd torture chamber to get a pic of his lungs--

I am soooo sorry that all this is happening---I am fighting my own battles with my youngest two--I will say a prayer for you and your family.
 
I'm so sorry....! Not fun at all.... :sad2:

I was just going to say like Mandy that that contraption reminded me of a medieval torture instrument. Her face agrees... :(

I'm praying that God will have mercy on you. That you can find out what's going on and get somewhere!

:hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug: :hug:
 
ohhhh.. I hate those things. They used to put Nick in them all the time and I used to beg them not to use the pig thingies. poor baby, I hope she is better soon.
 
Goodness Gracious! You have been through so much. Hopefully with everybody coordinating, they will figure something out.

I can only imagine how hard an EEG is with a baby. It is much easier once they get older. In fact, it is one of Nathan's favorite tests ( it is sad that our kids have had enough tests to have a "favorite" one). The worst thing for us about it is he has to be tired ( it is amazing that Savannah fell asleep after all that)! Since we live 90 miles from the clinic and we know he would fall asleep in the car- we get a hotel in OKC. Then we have to keep him up very, very late! Nathan LOVES that! His next EEG is over spring break so we are going to take the brothers with us so that THEY can keep him up!

Savannah sure is a little trooper- let us know when you find out anything.

Carol
 

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