Caleb update- they actually found something!!

Ok, so Caleb had his neurology appointment almost 2 weeks ago.  The doctors couldn't tell from the examination what he has so they took blood.  Well Hallelujah something finally showed up in the blood work!! (this is his third time to have blood taken and everything has come back negative so far) Anywho, so the nurse called me this week to tell me the results.  (by the way I'm pretty sure God has us on the fast track because EVERYTHING has been quicker than they told us.  The blood was supposed to take 3-5 weeks to come back, they had to send it out, but it was 1 1/2 weeks! The same for us getting in to Scottish Rite, getting Physical Therapy set up, and getting into Neurology as well) She said his pyruvic and lactic acid levels were high in his blood.  Everything else came back normal, muscle enzymes, liver enzymes, and I think the Chromosome panel too. She couldn't tell me what that meant (the 2 that were high) but did say the Doctor wants an MRI and more blood work.  So in two weeks we go back in and they are going to do an MRI, more blood work, and a urine sample all while Caleb is under sedation.  Of course I'm not thrilled about the sedation, but I do like that he won't know they are sticking ANOTHER needle in him.  Poor guy has had enough needles stuck in him to make up for the lack of vaccines!! (haha)

From what I can find out the high levels are pointing to a Metabolic Disease/disorder of some sort.  When the Doctor came in and was talking about the possibilites at our last visit he would mention something and I would say, "Oh yes" or something approving.  He would ask if I had heard of that, or knew of a test he was talking about and I didn't know any specifics, but it was just ringing true with what we think is going on.  We have thought all along that it wasn't just a bunch of separate issues, but they are all connected in some way.  From previous doctors, and the therapist his fat reserves are good it's his low muscle tone that is preventing him from doing the "normal" things for his age.  (the eye issues, the foot issues, not being able to sit up straight, becoming fatigued and laying down)

So that's the first thing we have coming up (Sept. 28th), and then we got confirmation for an appointment on October 12th where they are going to do some nerve conductivity tests.  He has to be put out again for this test, sigh, but this one shouldn't last as long.  I'm not sure it's possible they might not do this test if the MRI comes up with something.  At this point I'm grateful that they have a clue which road to go down.  (the neurologist said at some point we may end up at a muscle specialist where they would take a muscle biopsy, but I think with what they found from his blood that may not be the case anymore, time will tell)

Keep the prayers coming.  Oh, and my due date is less than a week away! AGH! Jason asked how I'm going to make it to the appt. on the 28th (especially if this baby comes after the projected arrival) and I said, Um it's Scottish Rite, they have wheelchairs!! :)  And the baby will give me something to do while my precious Bubba is in the procedure.  I'll let you know how it all goes!

Love,