Riley has officially passed his "10 days at home then UH Oh" mark. He came home from the PICU on 3/14, it's now 3/25, and he's doing well. As far as we can tell, he hasn't had anymore apnec seizures since the first few days home. Even then, it was only a few we saw and only stopped breathing for a few seconds, just barely long enough to sort of see his chest not moving, but not long enough to need to do anything about it. Besides those he's had a handful of shakey repetitive seizures, or what we assume to be, but nothing we've caught in the last week. Have been sticking to a strict timeline for his feeds, to keep the ketones up in his body, and each evening we test (through a urine soaked cotton ball in his diaper) they've been at the highest level possible for over the past week! He is pretty shaky on a more consistent basis, but those movements, as far as we know in the past, haven't registered on an EEG. And he's totally there and aware during them, so the hope is that they're more muscle related than seizure related. One more thing to keep an eye on and pay attention too though.
Riley will have a follow up with his dietician and ANRP at the end of April and see how his body is doing with the diet and see if any changes need to be made. At that point I'm sure we will discuss when his next needed EEG might be needed, for further confirmation. Between now and then, we are currently trying to get another appointment with the neuro at Childrens to discuss his mito test results, the need for another MRI (that seems to have followed by the way side during a break at home and new issues), and genetic options. Hopefully that will be scheduled shortly for as soon as possible. He also already has his genetics appointment at Childrens scheduled for the 20th. I'm sure this will be the point of discussing doing the full gene/chromosomal panel. We can hope and push for answers by his 2nd birthday, but after a year and a half of searching for answers, not holding our breath for any of these seemingly last steps to go fast.
Beyond the boys medical world, he's loving being home. He's started back to PT on a weekly basis, and may not be doing the big things yet, but his alertness is way better than it use to be (I'm sure lowering one of his meds helped). He's started planting his feet flat on the floor, one at a time, while laying with the knee bent. In the normal world, that's no biggie, in Riley world it's huge for his coordination and muscles.
With upcoming genetics testing that insurance doesn't cover, and his care while searching for answers, we've started a Go Fund Me, for any generous support to go strictly towards his medical expenses and care. We've always been so humbled and appreciated by the love and support we have all received. We hope that one day in the somewhat near future, we will have answers we have been looking for to better care for and plan our little monkeys bright future.
http://www.gofundme.com/rileyjamesroberts
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