Shriners' Visit

We made it home from Shreveport, and Reece was an angel (except in restaurants, but that's a whole other post)!  He slept all the way there and all the way back!  The Shriners Hospital is a really neat place, very bright and cheerful.  Overall, everything went well.  We were a little disappointed in the fact that they wanted to take xrays of his knees, but he has his casts on.  If we had known that, then we would have had Dr. Robbins take them off before we left.  We only saw one doctor.  The doctor we saw, Dr. McCall, said that Reece appeared to him to have the Escobar Syndrome.  He has seen several cases of it, and also has written a paper on it.  He believes that the skin pterygiums (webs) are what are limiting some of Reece's movement.  He said that children with arthrogryposis (stiff joints) do not move nearly as well as Reece does.  He said several times that Reece moved really well, so we took that as a positive note.  As far as answering our questions about Reece's walking ability, he really could not because he was unable to see Reece's knees.  That was a bit of a bummer.  He did say that Reece would probably always require some sort of leg braces though.  He also told us that he should have no problem feeding himself because of how well Reece gets his fingers to his mouth.  As far as the personal hygiene issue, he basically told us what Dr. McCluskey at UMC told us.  One of his arms will need to be straight.  Dr. McCall said that they usually do not operate on dislocated radii until the children are older so that their arms can grow properly.  That totally makes sense.  No one had ever told us that before.  Without looking at his knees, he said that sometimes they operate but lose some muscle strength in the knees.  But again, he couldn't tell us anything definite without actually seeing them.  Reece did get some bright orange "boxing gloves."  They measured and made these splints for him right there in the hospital.  He has to wear them for naps and at night.  I was a little worried about how comfortable he was going to be since he sleeps on his side, but they don't seem to bother him much.  In fact, after I put them on while he is still awake, he likes to wave them around and gnaw on them!  They just provide his wrists with a gentle stretch so that they can be trained to stay up more.  Our next visit to Shriners will be sometime after Reece gets his casts off and pins out.  This will probably be in the late summer.  I was a little upset that we didn't find out anymore than what we did, but I've got to remind myself to take baby steps.  After all, God is the Great Physician, and he knows exactly what is going on with Reece.  I have faith that He will take care of him.  The biggest issue I worry about is his mobility.  I keep reminding myself that as long as we stay positive, and keep Reece positive as he grows, then he can do anything he wants to do.  I don't usually ask for prayers for me, but please pray that I can stay positive for him  On another note, I called to see if the genetics clinic had heard from his initial genetics testing, and they had.  This was the one that they sent to Emory in Georgia, and it came back normal which means that he has all of his chromosomes.  The genetics counselor explained it to me this way in email "The microarray will tell us if there is any extra or missing pieces of chromosome material. For example, we had another patient whose blood we sent off for testing to Germany (for a different condition) and also sent blood to Emory for microarray analysis. The EmArray results revealed a small deletion in the area that was known to carry the gene for the suspected condition. The microarray may tell us something similar for you guys. "

So, we are home now and resting.  Thank you all for thinking and praying for us during our trip. We love you!