Sunday ... Muscle Biopsy ... It's the definitive test for many different diagoses. A year ago when we got Manny, it was brought up then to do the test. But then the MRI showed what they thought was end stage Leukodystrophy so why bother. Then he started to get better but everyone was stuck on that original diagnosis.
I didn't bring it up as I didn't want to put the baby through unnecessary pain if we could avoid it.
But ... the Pediatric Metabolic Geneticist said she had some ideas about what his real diagnosis could be. And of course it would take a muscle biopsy. So she sent her ideas to both of Manny's Neurologists. That was a month ago. FINALLY, the three of them have gotten on the same page.
Tomorrow I will be going to the pediatric surgeon to do a pre-op appointment and to schedule this muscle biopsy.
They're being sooo stinkin' careful. Why? Because if the get the wrong spot, it will tell us nothing. If they don't take the right muscle, it will be worthless. If they don't order the EXACT right tests, it will not be specific enough to be helpful. (Like it could come back saying there's a problem ... which we know ... but not identify the problem and we'd be no better off.) If they don't send it to the right research lab, it could all be for nought.
Pathology for this is so rare and so specific that they want to get it right.
They think they FINALLY have it all together.
So now we wait for the surgery appointment to be scheduled. Then we'll wait for the surgery date. Then we wait for the pathology results.
There's a part of me that doesn't really care what he has. Besides, no matter what it says, I know God can heal him. (And IS healing him.) And then there's this other part of me. There'as a part of me that wants to know what the name of this thing is.
In my experience, sometimes God rescues/heals with just a quick "HELP". Other times, He seems to want specificity. I'd love to have the name of whatever this is that Manny has. And of course I'd love for it to be something that has a full life expectancy! And while I'm mentioning my fantasy ... why not say that I'd love for it to be an "easy fix".
Saw the surgeon today, Dr. Martinez. There are now 5 doctors involved in this and they all want to say what is done and how it's done and where it's sent and what tests to do on the biopsy. Yikes!
They scheduled it ... This Friday. I won't know until later in the week the exact time but we know it will be early on Friday. This is supposed to be a day surgery thing and he should go home that same day. It will be a 1-2 inch cut on his left thigh. I am not a fan of more surgery. I HATE that he is going to have another scar on his body. And in such a visible place too. And I know it's going to hurt. And I'm worried about our spring break that's 2 1/2 weeks away. Will the sand/salt water accidentally get in his cut?? Sigh.
And if you've waded through this (boring) update, then I will reward you with a cute story. Today at the Surgeon's office, he was in his wheelchair (has a great tray for playing). He had some cars (his favorite). He would take 2 cars and drive them (rrrrrrr sound effects too). Then he would say "Crash" and crash them together. Next he would take one of the cars and turn it over and say "aaaaaaaaaugh!" and "oh man" once it would land upside down. Then he would pat the car and whisper, "night night car". After a little while, he would take the car and right it and say, "All better". He did this like 100 times! He was cracking me, the nurse and the doctor up. Of course I pulled out the video camera and I got "cheeeese". I even tried to sneak it and he caught me. So you'll have to settle for your own imagination of this.
What can I say? He's all boy! And I love it.