So much for a quick update in a few days…oops? Well take that I didn’t update quickly as a good sign! Means we’ve been home getting back into routines and happy normalcy. We spent Thanksgiving at home as a family, and Uncle Nicholas came over for dinner and to watch the Hawks play in San Fran. Since then it’s been days filled of work, house work, PT, laughter, Christmas shopping, and quality friends and family time. Been very nice to keep this kind of routine, with a healthy and happy boy. He’s still been doing PT once a week and making progress. He was constantly favoring rolling towards his left, but will go right now as well. He can easily roll onto his tummy (either direction), still can’t quite figure out how to get his lower arm out from under his chest though. Once he has some more upper body strength that will be a breeze. We’ve noticed on occasion, whether on his back or tummy, he’s slowly figuring out how to scoot himself backwards. Think he’s trying to take after his Uncle Brad on that one. The strength in his heavy head and neck is slowly coming back as well, slowly. He still wears his “scarf” in his car seat, which he’s grown to hate and try and pull off every time. It’s to help keep his chin out of his chest. But on occasion, he does well and proves he doesn’t need it. His head doesn’t always immediately flop when seated upright. This will take more time, but he’s working well on it. The cysts on his eyes are much much smaller, and every day he opens his olive green eyes more and more. Still may be a good month or two before they are completely gone, but compare them to this time last month, and it’s a HUGE difference!
After Riley’s last EEG shortly before Thanksgiving, he and I headed over to his neuro’s office after being discharged. As always, a love/hate relationship with that office. The good news, this EEG was MUCH better than the last (week long while in the PICU). He didn’t have any sort of seizure or spasm, and the hypsarrathemia (background abnormalities) are much less. With currently being on four different antiseizure medications, he said that it’s not surprising that there are still some, but not a lot. He’s always going to be prone to seizures, so there is a pretty good chance that he’s never going to have the perfect EEG reading either. Still on track with lowering his most recent med, to have him off of it by mid-January. Go down again in dosage this Sunday! This might be one reason we’re seeing more awareness, energy and smiles! I love it…so much.
The frustrating news, we have pretty much hit the end of the road when it comes to diagnostic testing. This means, there is a very good chance that the underlying problem, is genetic. This is where my heart sank, because not only is finding the right answer going to be difficult, it just also adds so much more uncertainty. One year later (as of yesterday), still feel like we’ve gotten nowhere. Riley has gone from 6 months, to 18 months old, and the past year has just been one obstacle after the next, causing not much in the way of him progressing. And that’s a huge developmental time to where he, in theory, should. Sometimes it’s still hard to swallow. I see a kid around his age, or even way younger, at the grocery store, and I think, “Riley should have been doing this a long time ago”. But then he grabs my arm, like right now, and those thoughts melt away because he is one strong and stubborn kid, and will get there when he can.
So as of now, the plan is to keep him healthy and progressing well for the next few months, and nowhere near a hospital (unless he has a scheduled doctor appointment). At the end of February, we will meet again with neuro, see what kind of progress he has made, and reassess. As of right now, the only testing that he can think of to do next, would be a full genetic/chromosomal panel, testing every gene and chromosome in his body, to give us a specific diagnosis. Problems: there is only about 60% chance of it telling us what’s going on. We could go through the time and money, for a 40% chance of getting nothing. Also, getting insurance to cover it. Insurance companies consider anything genetic related, an optional test, we choose to do it, it’s not necessary. Well we’re not going through this for shits and giggles, we have a true necessity. We would like to know what Riley’s future may look like, what he may need assistance with now or in the future, things that will impact his and our lives. Not to mention, the % of chance of how it could affect a sibling, if/when we get to that point. So at this point, we have no idea if insurance would cover testing like this, or if it’d be out of pocket for us (looking at $15-16k). Yes, he has had two genetic panels run (epileptic and developmental delay), and both insurance has covered, after months of open claims and I’m sure back and forth for our insurance company and doctor’s office to make them cover it for medical necessity. This would be a way bigger panel though, as it would cover his whole body, so who knows how they’d make a final call on that one.
For now, we’re just focused on keeping this adorable little monkey health, happy and moving. He’s making progress in his own strides, and had many opinions on everything. Come the beginning of the year, he’ll start speech therapy as well, since the lovely summer steroids took away most of his babbling progress as well. New adventures await every week with this kid, and he’s enjoying keeping us on our toes. Happy to be spending Christmas next week traveling (for the first time I think since August!) down to Vancouver and Hood River, with both sets of grandparents, and great-grands, aunts, uncles and cousins on his daddy’s side too. Time to relax and be thankful for the strength our recent experiences have given us. Now I just need a glass of bubbly with floating berries to toast and cheers you all! Thank you so much for all the love and support this past year. Have a very Merry Christmas and a Happy New Year! Bring on a much better 2015!
