A Little Info and A Lot More Waiting

We met with the Neurologist today to try to get some insight as to why Ryder is having problems using his left arm & leg.  Wow, what a long appointment, we’re all exhausted. 

First of all, let me tell you that I’ve been praying that God would give us a Doctor that would explain things well and not be in a rush and leave us feeling confused (the worst feeling in the world for me is to feel confused when it comes to something as serious as my child’s health!).  Well I get a phone call on Friday saying that the Neurologist we had our appointment scheduled with had fallen on the ice and would be out of the office for a while, so our appointment was cancelled, but they were able to reschedule for the same day with a different one.  They told me his name so of course I Googled to get some info on the new guy because I was feeling really uneasy about the sudden change.  Turns out he is the head of Pediatric Neurology at the hospital we went to, and he sat in our appointment and talked with us for TWO HOURS!  It’s funny how God works things out.  It’s also funny how His sense of humor shines through with me…yes I did ask for a Doctor that explained things well, but two hours, that was a little much!  Ha, guess I’ve seen the other end of that spectrum now.

Okay, so you would think after two hours of talking and talking and talking that we would know exactly what is wrong.  Nope…all we know is that we definitely have to get an MRI and that there are two scenarios that he is leaning towards.  The first is that there is a malformation somewhere in Ryder’s brain.  For some reason (possibly because of his kidneys not functioning, causing toxins to get to his brain that should have been filtered out) something didn’t form right and they will see an area of dysplasia on his brain.  The other scenario is that Ryder had a stroke while I was pregnant with him (again, could have been from the stress he was under with his kidneys not functioning) causing damage to a certain area of his brain.  In both cases, the MRI would pin point exactly where the damage took place, which would allow the Neurologist to tell us what parts of the body that area controls.  The extent of damage that was done is dependant on the size and severity of the stroke or malformation, and the cause.  So a lot of the answers are up in the air right now (in the tight grip of God, exactly where I need them to be!) and we’ll find out soon enough.

There were some things that the Neurologist was able to tell us just by observing Ryder.  He said that he’s going to be a late walker, he just doesn’t have the strength right now, and it’s going to take some time for him to build that up.  He told us not to be discouraged (not that we were, we know how much determination this little boy has!), that he would definitely walk, and that when he does, the problems with his left leg/foot should correct themselves once he starts bearing weight.  He also said that Ryder’s social, interactive, and communicating skills don’t seem to have been affected at all!  We’ve heard this before, but it sounds great every time.

Needless to say, we got quite the education on the brain and how it works today!  Although it’s all really fascinating, I must be honest and say that Alan & I were wishing it wasn’t our sons brain being used as the subject matter.  One second we would be so intrigued by the Doctor explaining what the little green section in the back corner of the color coded brain he was holding controlled, “OH, WOW, REALLY?”.  Then a minute later realizing that the same section we were just excited about, could possibly be the section that has been damaged in Ryder’s sweet little brain, it turned into “oh….wow…..really?!”.

He’s not considered an emergency case (good news to us!) so we’re just waiting for them to send us an MRI date.  They’re booking into March/April, so looks like we’ll have another looooong wait ahead of us.  But that’s okay, I’m fine with that, even though we don’t know what the exact cause is right now, we do know that he needs to be rehabilitated with lots of Therapy, and so that’s the path we’ll continue down.  Not to mention, I’m not thrilled about him having to be put to sleep again, so the more space we can put between the last time and this time, the better I’ll feel about it.

So, that’s where we’re at on paper, stuck waiting…for an MRI, another Neurology appointment, and answers.  But here in the Marsh house, in real every day life, we’re putting our faith and trust in God and He’s going to keep us moving forward!