Thursday Appointments

Peyton got to see all kinds of people today!! The first half of the day went really well for him - the doctors just talked to us and drilled us with questions but didn't mess with him much so he got some extra nap time in! Basically the upper and lower extremity doctors just looked him over one last time and said he was doing great so far - and said they could tell a difference with all the stretching he's had this week. Then the neurologist and geneticist came in for a while. The neurologist poked at him a little and got the whole story of my pregnancy and his birth. Then he brought in another neurologist because they were so amazed with the story. Really - you should have seen the looks on their faces. It was a sight. The geneticist put us through this big questionare that they give all the patients - they are compiling all kinds of information to study more in depth the possible causes of arthrogryposis. Of course in our case, we already know. She too was quite amazed. The neurologist is sending Peyton for an MRI tomorrow of his spine. They found out that while he was in the hospital at Duke they only did an MRI of his brain and didn't get his spine. Since spinal defects are common with this condition they want to make sure everything is ok. Also he found a dimple in the sacral region on one side only and then also that little rat tail he has in the crack of his butt are markers for a tethered spinal cord - or some spinal cord defect. Hopefully that is not the case and it is just coincidence. Please pray for him tomorrow because we have to be at the Children's Hospital at 8am for the MRI and he can't have anything to eat after midnight. Also they will sedate him heavily for it. We won't know the results until next week sometime.
After he was seen by the doctors in the clinic we had lunch - we met up with Chandra, Kendra, and baby Emma - a family from the convention - who were also there for clinic today. Then we went back up for therapy afterwards where he was filmed by this public broadcasting contractor who is doing a piece about the Houston Shriners. So he will be on TV at some point. We don't know when or any other details but maybe we can find out.
Also we have an answered prayer - Jericho Shrine Temple is going to fund our plane tickets to fly commercial - so we won't have to use Angelflight for now. They will only pay for 1 ticket each time so if Chad wants to go we'll have to pay for his but that is fine - he won't always need to be there. And then we'll probably stay at the hospital in their parent room next trip. Jericho can't fund a hotel on top of the airfare. But what really helped was that Jericho contacted Greenville SC Shriners and they confirmed that they generally do not see arthrogryposis kids. It is just meant to be for him to come here. Also I got a response from a lady with Continental Airlines who coordinates the free airline tickets for families needing to travel out of state for medical care for a child. They award 2 free tickets each year to each family in need requesting assistance. All she needs are the dates, the airport locations, and a fax from Shriner's confirming the appointment and she can get us the tickets. So there's another resource for us to use. And I also left a message with American Airlines - they do a similar program.
This evening we took a drive with Chandra, Kendra, and Emma out to the huge mall downtown and we had dinner. Their mall is amazing. Of course we can't afford anything in there - we went to one children's store where there wasn't a single shirt under $60. Most items were between $60 and $100 and their shoes are $150 a pair, and a diaper bag was $195. Probably the cutest stuff I have ever seen (especially the little girls stuff) but we'd have to take out a loan just to buy 1 outfit!
So tomorrow after the MRI, Peyton gets his AFO's and goes to therapy to have his stretching and his splints adjusted - they'll redesign his knee splint. Also they'll remeasure all his joints to check the progress. He definitely has made plenty this week!