1st full day in Houston

We arrived in Houston yesterday around 4pm central time. Our flight was terrible. The first plane to Memphis we had no air conditioning. You can only imagine. Peyton was wringing wet and miserable. The second flight into Houston was delayed about an hour because they decided since there was some severe weather around the Houston area they needed an extra 1,000 pounds of fuel. So they added all that and then decided it was too much weight since we had a full flight and all the luggage. Then said they would have to take some of it back off. Only the crew didn't know how to take it off once they add it on there so the pilot had to go park the plane and fire the jets to burn the excess off. By the way, this was Northwestern Airlines. We won't use them again - that's for sure.
Anyway - we found Shriner's last night and it is in a hospital complex of about 20 hospitals - no exaggeration. They have a huge downtown skyscraper section dedicated to nothing but medical facilities. And then the actual business skyscraper section is on the other side.
So let's get on with the appointments today. We arrived at Shriner's at 7:30 and his first appointment was at 8 with the therapists and physician's assistants who evaluated his overall function. You could tell these people knew what they were doing as soon as they walked in the door. They were so knowledgable and didn't miss a beat. They measured every angle of every joint and looked over every square inch of his extremities. We will see the therapists every day this week - twice a day. Then the lower extremity specialist - Dr. Barnes came in to talk to us. Peyton had x-rays that confirmed that his right hip is NOT dislocated. And then also his left hip MAY NOT be dislocated. It's inconclusive right now until his bones ossify a little more. Which means this - if we find out later (they will repeat the x-ray next month) that the left leg IS dislocated anteriorly (towards the front of the body) then they will not do surgery to put it back. If it is dislocated posteriorly (toward the back of the body) or to the side, then they will put it back in. The reason they won't if it is anteriorly dislocated is because it won't stay in. Rarely is it successful. So he will just leave it as it is. But overall, they will not do any hip surgery until he has at least a 60-90 degree bend in his knee because the cast won't stay on with a straight leg.
Then we discussed Peyton's knees. His left leg is rotated to where his knee is on the side of his body. They will not do any surgery on that unless they have to and it won't be until later on - like a couple of years. If they see that is something holding him back from walking then they'll fix it. For now they will just stretch the joint to bring it back to the front as much as possible.
As for his feet - they need to get just a little more progress before they clip his achilles tendons. So he will have lots more stretching and TAPING (they tape the feet instead of using plaster casts if possible).
We discussed a lot of things with the doctor that this email just can't contain. It really would be a novel - but I am trying to cover the most important things. Tomorrow we have to take Peyton to a different hospital to have an ultrasound of his groin area. The doctor suspects a possible inguinal hernia so he wants it checked out. It may just be a fat roll protruding but he says it is very common for arthrogryposis kids to have hernias develop.
So Dr. Barnes wants to see us back in 4 weeks. We went to lunch and then reported to therapy where the occupational therapist made Peyton's hand splints and stretched his arms and wrists. She said that she will wait on the elbow splints until the upper extremity specialist, Dr. Gogola, sees him tomorrow. One of the first surgeries Peyton will have is one to release his elbows. They will snip some tendons to make his elbows bend. They do this as early as 5-6 months old. Then the physical therapist came in and stretched his legs and feet. She began the taping process of his feet - check out our pictures - you can see his new splints and his taping. And again, they will snip his achilles tendons once they get a little more flexible (we'll probably accomplish this over the next month). He will have to wear casts for 3-4 weeks therafter and then once his tendons have healed he will go on to AFO's - ankle foot orthotics. These are more or less splints for his feet. He'll wear these for years to come. More often in the beginning and then I think it just will be night time later on. I could be wrong. He will get knee splints tomorrow. All the splints will need to be adjusted every week - so we'll probably be coming here often for a while. We will discuss the frequency of his visits either tomorrow or another day this week and I will let you all know for sure what we're looking at as far as travel. But they did give me a handout on stretching exercises to do at home and it is possible for me to do what therapy he needs myself - in addition to our therapy visits at home - and then let them follow up with us once or twice a month.
Tomorrow we see Dr. Gogola. At that time we will find out more about his upper extremeties. Thursday we see the neurologist and the geneticist. And then of course every day we'll be in therapy twice.
It was alot to take in - but we're impressed with the way they took care of us today. Everyone we saw really stressed how much they've heard about us and they've been waiting all week for this appointment today. They said Becky (the director over occupational therapy) talked about us nonstop and really wanted us here. So we're probably going to go ahead and cancel New York.
We'll give more details tomorrow if we get a chance.