Miracle Baby

Reece is here to tell you to never doubt miracles.  We always knew that he was one, but after this week, it is confirmed!  I'll start with Monday.  We went in to see Dr. Robbins, the orthopaedic surgeon here, and he said that Reece's feet looked great and to come back in December for another check-up... short and sweet visit.  Tuesday, Nick and I met with the geneticist, and he explained Escobar to us in a little more detail.  It's kinda technical, but it helps to understand what happened.  Your nerves send off a chemical called acetylcholine which travels across the neuromuscular junction and binds to a receptor on your muscle.  It was explained like a key (the acetylcholine) being inserted into a lock (the receptor).  Reece's key did not fit.  The "lock" has 3 sections to it... alpha, beta, and gamma.  The gene mutation was on Reece's gamma section, which is a good thing.  After 33 weeks of pregnancy, the gamma is replaced with an epsilon (hang in there with me).  If the mutation had been on the alpha or beta section, then Reece would have had respiratory problems.  Now, here is the kicker.  There was one other child born in the UK with the exact same gene mutation.  This child did not live past one day.  Now, they are puzzled as to why Reece is even here with us.  The geneticist asked me if I drank a lot of caffeine during pregnancy, and my answer was "no."  I completely dropped caffeine and any kind of medicine (Tylenol, Advil, etc) when I found out I was pregnant.  I was a worrywart about that kind of thing.  His thinking was that if I had drank caffeine, then that would have given Reece a boost of movement and prevented his lungs from being affected.  Now, is that God or what?!  Nick and I did discuss the fact that toward the end of pregnancy I began to crave chocolate (which has a little caffeine in it).  Guess what kind of chocolate!  Reese's!  Who knows... maybe God put that craving in me!  As far as future pregnancies, I was correct in saying that there is a 25% chance of it happening again.  However, in vitro fertilization would be an option for us.  We'll cross that bridge when we get there.  Ok... so on to Shriners.  We get there, and they decide to xray Reece's feet.  Dr. McCall looked at the xrays, and told us that the surgery on his feet was not a complete success.  It may have to be done again, but he wants to check them again when we come back.  That was the negative part of the visit.  We told him the results of the genetic testing, and he looked at Reece's knees, hips, arms, and wrists.  He told us that while the genetic test shows Escobar syndrome, Reece is not a classic case.  He said that with Escobar there is more skin webbing than what Reece has.  He also said that Reece did not fit arthrogryposis (stiff joints) 100%.  So, he is somewhere in between.  So, the course of action will be to focus on getting his knees straight.  We will do this with therapy and more than likely surgery.  Then, he will look at his hips, since there is some tightness there as well.  He said that our goal is to have him up and walking between 12 and 18 months old.  It sounded to us that walking would be a definite.  He will require a lot of bracing and possibly a walker, but he may not.  Another issue we have to face is the fact that falling is big part of learning to walk.  With Reece's dislocated radial heads and wrist contractures, he will have to learn how to catch himself differently when he falls. We just have to sit back, pray, and wait.  Nick and I were discussing how strong-willed Reece is.  The doctors don't see how he is in everyday life.  They only see him for maybe 30 minutes, so they don't realize how very active (and determined) he really is.  An example of his strong will... we went to eat at a Mexican restaurant with some friends.  I was eating a fajita, and Reece was sitting in my lap.  He decided to grab the fajita.  Well, when I jerked it away, he threw his head back and had a tantrum.  Toddler years should be fun, huh?!  Back to Shriners... overall, we felt like it was a very positive visit.  He got a new pair of "boxing gloves" since he has outgrown his orange ones in 6 weeks!  We go back January 21, so Dr. McCall can check Reece's progress.  We will discuss the knee and hip surgery then.  This Monday, Reece will have the EMG (electromyography) done.  He will be awake for it, so please say a little prayer for him.  The geneticist had told us that he didn't really see any need for it because they always come out normal with Escobar syndrome, so he talked to the neurologist.  Dr. Veda said that he wanted to go ahead with it because, based on the results, there could be a medication to help Reece.  We don't really know any details, but we know that we don't want Reece to be a guinea pig if it is a new drug.  So that's a major decision we will be having to make in the next couple of weeks.  Please pray that we will make the right one.  It's so hard.  All you want is the best for your child, and when you have to make decisions like that it puts a huge weight on your shoulders.  However, it does seem that the Lord has guided me and Nick this far.  According to the doctors, we are doing everything right.  We will just continue asking Him for His guidance.  Well, I warned you that it would be a big update!  Thanks for reading it and allowing me to express things built up inside.  We love you!