Monthly Archives: February 2014

A few shots from our Trip :) and a Quick Update.

10 Monday Feb 2014

Posted by Amy in Uncategorized

≈ 2 Comments

Disney CastleIn front of Cinderella’s Castle! (2nd night at Disney World)

 

IMG_0157We spotted by to say HI to Goofy. He noticed G’s  “I”m a Wish Kid” button and quickly gathered several characters to get a special family photo! Thanks Goofy!

I will be blogging more about our trip soon, just trying to get a few pictures up right now. We had such an amazing time! Make A Wish works with this AMAZING organization called Give Kids the World Village. It is where we were blessed to stay.  One of Gabriel’s favorite things was the train station.   http://www.givekidstheworld.org/

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One of Gabriel’s favorite things was the train station. Which just happened to be about 50 steps from our villa’s front door. I think G drove the train at least once a day every day we were there!

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We also ate LOTS of ice cream! They have a magical ice cream palace that is open from 7:30 a.m. to 9:30 p.m. You can have whatever you want and whatever silly quantity.  We also ate ice cream EVERYDAY! Especially exciting for a former Keto Kid! Gabriel loved picking whatever he wanted…he always kept it simple though…1 flavor of ice cream and sprinkles 😉

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Meeting Pluto at Give Kids the World. Disney World sends characters to the Village twice a week so all the kids get a chance to meet the characters. Gabriel LOVED this! Meeting the characters was his favorite thing! He and Pluto were so cute this day they caught the attention of a camera crew from Miami. The crew was there filming a story on Give Kid the World after learning about it from ABC Good Morning America’s Extreme Makeover. There is a chance Gabriel be in the special the local morning show does.

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Each kid at the Village also gets a special Mickey and they bring it for Mickey to sign his foot. Gabriel took this very seriously and held his doll just right 🙂

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This is Miss Merry (one of the 2 characters at Give Kids the World Village). She came to tuck Gabriel in. He LOVED it!

Hee hee ok a few of the highlights! Hope these made you happy for today 🙂

Quick Update on other things:
Gabriel now has a pulmonologist on his team. We have known for a few months now that he is not getting enough oxygen during sleep. We did a 3 night in home test right before we left town. A little machine beeped everytime his levels went below a healthy level. Man on man, that thing beeped a lot ;(

The results of that as well as some xrays are in and we will be meeting with the pulmonologist tomorrow to talk about the causes and further treatments needed.

We also are getting an EEG scheduled to see if his brain is healing or the drugs are doing all the work in keeping the seizures away. The results of that will determine if we get to wean another drug or not.

We are also continuing work with his developemental behaviorist at Children’s Mercy. After months of testing we have some better understanding of where he is developmentally.

We would appreciate your continues prayers as we add to the team of specialist helping us fight for the BEST for our sweet boy!

 

 

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