We waited around all day for a 3:00 appointment, which didn't really give us too much information. The great news is that the MRI appeared normal. The guy who read it also got a hold of her last MRI, the one done in Detroit about six weeks ago, the first MRI that was "abnormal" (the one that appeared to have "abnormalities to the basal ganglia") but this doctor was not convinced that her August MRI was abnormal. So really, all four of her MRI's have been normal. This is great news! Unfortunately, this great news doesn't fix her problems, it just makes them harder to figure out.
The neurologist was encouraged about this MRI, but we couldn't leave the Clinic with a diagnosis, and I know she wanted us to give us one. Some of the urine and blood labs taken on Tuesday were in, but most of them were not. The ones that were in gave her some clues as to what Allison could have (which appears to be a chemical imbalance in the brain). It could be as simple as too little or too much energy being "fired" in her brain, which could be controlled with diet. It could also be as complicated as...well let's not go there quite yet. Every time the doctor gets a test result back which is abnormal, she will call us. If we don't hear from her on a daily basis, that means either things are coming back normal, or results did not come in that day. She is also going to send us and Dr. White a packet of her notes, labs results, basically everything from our Mayo visit, in the next week or so. This will help Dr. White order follow-up tests if needed.
We discussed options to control her hypertonia - a new med, muscle relaxer botox injections, or increasing her current med. The doctor was glad we consented to the skin biopsy. Having a skin sample will allow the lab to grow Allison's skin out to the size of a pancake, which they can use to retest anything that comes back abnormal - instead of us having to go get more blood drawn or a catheter placed (which is terrible on a baby girl, by the way).
In three weeks we should have a diagnosis - or at least be really close to one. Until then we keep doing what we are doing: going to therapy, seeing our local specialists, and treating the vomiting with tons of meds. But again, everyone we have ever seen is soooo surprised to see Allison "so alert" and "so engaged". Every doctor is encouraged that cognitively she isn't too delayed at all - and because of this, she has a real fighting chance at a quality life. She may struggle physically, but I think she is persistant and determined enough to figure it out. Of course, one of my goals it to get her off of this feeding tube, but that may have to wait a bit. I'd also love to see her mobil, sitting, crawling, walking, but I can be patient. The one thing that is fairly urgent is controlling her vomiting. But hopefully all of this will look differently in three weeks. Still hopeful.
So we have left the Mayo campus, disappointed because of the question marks still, but encouraged that the question marks are just temporary. We are excited to see our big kids, who sound tired and sad, but have been reported to have been really good all week. We hope to make it home in time to pick them all up from school - what a surprise that would be! It all depends on the Chicago traffic. And we lose an hour going back to Eastern time.
Next week we see Dr. White for a well-child, so maybe some results come in before then and we can talk about them. He also will have the pleasure of taking out her stitches. Better him than me!
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