The amount of additional love and support that we have been receiving over the past few weeks has absolutely blown us away. We can’t thank everyone enough for helping Riley to continue to move in a positive direction. We had our follow up appointment with Children’s neuro yesterday, and we probably went into it with higher expectations than we should have had. Came out feeling a lot like previous neuro appointments with Vlcek, not having answers or a clear direction to continue moving in. Riley’s mito results are basically considered “normal”, nothing specific was found. However his percentages on things were above what would be considered a normal range, which at the moment is just odd. Odd, because if there was a specific mito disease, those percentages would be lower than the normal. So what does higher mean? At this point, more things that just aren’t clear. So Saneto (Children’s neuro) is going to look through Riley’s book of a chart to make sure that there hasn’t already been a mito DNA panel run, and if not run that. As far as we know, it was never mentioned to us that it had been done already. He is also going to speak with a college of his about getting Riley in on a genetics research that is being done on kids under the age of 3, who have severe epilepsy. He’s pretty sure she will still take candidates, but needs to double check of course. I have a feeling I’ll be calling Saneto’s nurse by the end of next week to push buttons on both of these things if we haven’t heard about them one way or the other.
Next step, his hour and forty-five minute long genetics appointment at Children’s next Monday (4/20). Not sure what to expect exactly, but have a general consensus that we’ll discuss the genetic panels that have already been run, and what the next steps should be. Our guess is that since the full gen-nome panel has been suggested by both Vlcek and Saneto, that this will be discussed as well during his appointment. Whether it’s something we need to jump on and do ASAP, or if we should wait on what Saneto’s other ideas could bring to light, etc. Either way, I think we’ll both need a beer after that appointment!!
Riley has been doing really well physically and mentally lately though. He seems much more aware of his surroundings lately, and more interactive. He’s been doing great at, at least, attempting to move and use the little strength and muscles he has. We catch him trying to straighten his back and sit up more in his toddler chair, kicking his legs the highest we’ve ever seen, figuring out how to better hold his head up in his high chair, etc etc. His therapists have been very impressed by him lately, which make Mommy and Daddy even happier. Unfortunately, Riley now has a bad cold. Started out yesterday just a dry annoying cough, but woke up this morning really stuffed up and just exhausted from not being able to sleep very well because of it. First time being sick while on the Ketogenic diet, so it’s not like we can just give him any kind of med to help him feel better; most contain some sort of sugar/carb, that can throw the diet of whack and put him even more at risk (than just being sick) to have a seizure. So for now he’s getting Tylenol and rest, and see how he feels come Monday. At least this will be the one week where he doesn’t have any big appointments, so use it to rest and recoop!
Thank you all again for your wonderful support. Please continue to pass Riley’s story around! Until next time….
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