Jonah went to ot yesterday and he supported his weight on one arm for 4 seconds with no help

i can't believe he was able to do it since his arms are so weak (or so we thought) He was holding his head up and everything. We're on

right now. I can't wait for pt today.
becca
Awesome news!!!! What a great victory!
while he's still sleeping, I don't know if i every told y'all his story. He was born full term with treacher collins, which is a cranial facial disorder. He was born w/out outer ears, cleft lip, and a very very small jaw. We live in a small town so no one knew what he had or had ever heard of treacher collins (my husband has a mild case so we knew what it was).
Long story short. He had a respiratory arrest on christmas eve at 1 month old. He wasn't given at good chance of survival at the time. He was barely moved expect to react to pain. We were told at 2 weeks in to the ordeal not to expect much from and that he wouldn't be able to live off the vent and that he wouldn't be able make it long at all. Well, after several scans and many up and downs he finally decided to "wake up" and show what a fighter he could be. They brought him back for a MRI and with in 30 mins took himself off the vent and went a few days w/out it. This went on for about week. Then we realized he was going to make and just had to come up with a plan.
He was given a trach to keep his air way open (he is going to have to have that for life more then likely) and a g-tube so he could get what he need nutrition wise. He is still extremely delayed in all areas, but is making a slow and steady progress. He's 4 1/2 now. The hardest thing is letting people know that he understands a lot more then he can tell us. When he can choose between red and blue crayons or pick out which animal says moo but he can't hold himself up it's hard for people to understand.
He is considered deaf/blind because he is legally blind and deaf, but he had his bilateral BAHA surgery back in march and since has tested showing just a very mild hearing loss and we know he can see better then the doc says he can with and w/out his glasses. Well that his story, i'll get pictures up later. I've gotta go wake him up and get ready for the day.
Sorry it's so long i know i left a lot out.
becca
And thank you for sharing his story, it means a lot that you would do it
About the Princesses... My daughter's wish was to dance with the Princesses so we had a lot of Princesses planning to do. We did a lot of meals but BY FAR the best thing we did for her all trip was take her to the Judges Tent in Toontown. Iluvmickeymouse described pretty well how it works - we bypassed the 90 minute line twice! I haven't done this in my trip report yet but I will give a brief report here.
The first time we went, we ran over and didn't have a lot of time before we had to be back at CP for dinner. They were about to close (there are hours, makes sure to check the schedule!) and one CM sent us away but another saw the button and "scolded" the first CM, saying we were Wish Trip and we were to go straight back. All the way around (it's a long walk) they brought us - when we got back there we could see all the people waiting on the line. There is a hallway and then doors which we went in.
A couple of kids were inside the room, along with Cinderella and Belle. We had met Belle twice - once at Norway breakfast were she spent a lot of time with her (and taught her to courtesy! and also backstage at the Beauty and the Beast show). My daughter was so excited and we watched as each child met with their princess and got a couple of minutes for autographs and pictures. Then it was our turn for Cinderella.
My daughter was SO in heaven. She was just... awed. We were all wrapped up in the conversation Cindy was having with my Bella.
Suddenly it was very quiet in the room and we looked - the other children had filtered out and they had shut the doors behind us, we were the only ones in here! The CM said to the Princesses, "She's all yours!" and they spent the next 20 minutes, yes, you heard that right, 20 minutes with my daughter! They danced with her, ring around the rosie and my hubby and I even got to join in.
I was crying and trying so hard to keep it together, everything the whole trip was about was in that moment. It was very overwhelming and special.
When we were done we asked if Ariel was ever here - her grotto is closed for renovations. He told us we should come back later during the P&PP and we would have a surprise. So of course we did.
We got to do two rooms this time - Princess Minnie and Daisy and also Snow White! The next room we got Aurora, Cindy again (probably my daughter's favorite) and... Ariel with her human legs!!! Same deal, we got them alone for about 20 minutes. Some of the CM's were crying watching my daughter interact with them. They were so very sweet to her and to this day she talks about it.
I recommend to everyone, whether they want to see Princesses or not, that they go to the Judges tent. You can see Mickey and his friends and sometimes Pooh I think (although we got him outside) and there are rumors of a Tinkerbell room in the future (have no idea is this is true). It was the best experience!
Some pictures:
Hope I didn't spam you with too many pictures!!
