There are days that I feel that we are completely starting over raising our child. That we have a newborn stuck in a tall awkward two year olds body. And in a lot of ways, that’s exactly where we are. A year of trying to control his seizures, and the toll they took on his brain, is like a year thrown out the window in any kind of developmental movement forward. Add on his medications that he’s been on, and some that he still is, and you move back even farther. There are some days to where it frustrates me so much, that it’s hard to get Riley to understand things that a typical two year old would. There are days that very hard wall of communication, is hard to chisel at. There are days where I don’t feel like we’re making any sort of progress at all. And I’m sure I feel like that more than anyone else, because I’m with him the most, so it’s harder for me to see the small advances and achievements, compared to others. But then there are happy days filled with constant smiles, good naps, awesome struggle, effort and frustration to do his hardest at holding his head all by himself, and so much more. And there are days like today where he thinks he can stay awake all day long (with many smiles), pound his feet and complain (because he’s tired), and makes dinosaur noises all day. These are days that I try not to laugh at the ridiculousness of his attempts of “terrible twos”.
Progress may seem slow to us, but we have so many people amazed at how much he’s moving around, how much he kicks his legs and how strong they are, how much more aware and “talkative” he is, etc etc. So even though developmental progress for us may seem slow, and I’m sure much slower than “normal”, it’s nice to hear what a difference others are seeing in him. Makes us, and him I’m sure, feel good. I do my hardest to not pay too close attention to other kids. And that may seem weird and may not be the best way to word it, but the more attention or the more I watch them, it becomes really easy for me to think “Why isn’t Riley doing that?”, “Riley use to be able to do that”, etc etc. There are things a three month old can do, that Riley can’t, and things that a kid his age can do, that he can’t. Whether I know these adorable faces or not, in the end I’m always so happy for their accomplishments and silliness, and know that it may take more determination and effort, but someday, sooner or later, Riley will be able to do those things, or do them again.
Beyond positive progress for Riley, there are many other things we have to be happy about. Like the fact that he has not needed to go back to the hospital in over two months. We truly believe, that if we had not gone home with his cough assist machine, he would have been back already with respiratory issues. It’s amazing how this small very techy looking machine can help simulate a cough for him, and keep him moving all those boogies around throughout the day, so they don’t end up settling and causing issues. We still have to suction him, some days more than others, but he does fairly well at coughing and trying and knowing he needs to do something with the boogies! It’s very nice to see that he understands that he needs to put effort and work at this himself too. I can’t explain the look he gets, but I’m just gonna use the “being his mom, I know he knows”. You can tell that he probably understands way more than we may give him credit for.
We are definitely taking this (VERY LONG) stretch home and healthy, to enjoy life again, and also to get shit done, for lack of better explanation. I had my first real mommy time away from the boy, and flew down to the bay area for three days/nights with my girls. I was thrilled to get to see my aunt and uncle in San Fran for a night, and then the besties and I had fun exploring parts of Oakland, and road tripping through Napa Valley on our way to Calistoga. Can’t forget the stop in Santa Rosa at Russian River Brewing on the way back! I certainly brought back presents. It was super nice to get time off and also really weird at the same time. To not have to constantly pay attention to my child, do something for him, etc, is really weird. Then we had a blast celebrating the monkey’s 2nd birthday, and then took off for our PacNW road trip. Stopped in Hood River to see great grandparents and try out some breweries. Then onto Bend for a few more days, and many more brewery hopping. By then we were pretty burnt out on beer, and headed back to Vancouver to see Nana and Papa for the weekend before heading home. Riley did awesome; he’s such a good little traveler.
As far as getting shit done, I swear my to-do lists just grow longer and longer each week. Riley had a follow up with his neuro dietician at the end of May, and everything looked pretty good. He had gained some weight back and was at just over 27lbs. Since he was in the 60thpercentile, we wanted him to stay around there, and not just keep gaining, which would make it harder for him to move around. So we dialed back his keto formula recipe a bit on calories, unfortunately, it was just enough to where he’s now lost two pounds since. So starting in the morning, we have a new recipe with higher calories, to hopefully put those pounds back on. It’s such a science finding the right amount of calories with this diet, because the more calories, the more carbs and possible seizures. So we’ll just be watching him close as we increase this weekend. Thankfully though, the last known seizure that we’ve seen was the beginning of June! This diet isn’t a cure, but if it has certainly dialed back his epilepsy this much, we will take it! He’ll have another follow up at the end of August, and then we’ll start talks of an updated EEG and possible small adjustments to his meds. I also managed to get his July sleep study moved up to the end of May, and we’ve checked that off our list. He did great, slept better than I did! Of course they had all the bells and whistles turned off, so I had no idea what was really going on, and what all was registering while he slept. We finally had his sleep doc follow up yesterday, and it’s certainly not the worst news in the world, but not awesome either. It’s not totally surprising that he has obstructive sleep apnea, especially with his hypotonia and current swallowing issues. It’s rated moderate, so for now he doesn’t need any extra assistance like CPAP or BiPAP, or higher oxygen flow at night. But he does still need to stay on the 0.5liter of oxygen at night, to help give a little extra cushion. Ok fine, the concentrator stays for now. Just wish that thing wasn’t so bulky and heavy. However his doc does think his tonsils need to come out. They aren’t touching, but are big. It’s hard to know to what degree his tonsils play in his obstructive apnea, but with a hypotonic child who also has epilepsy (most of his seizures stem from some sort of sleep), it can only help, if even a little. So I’ll be calling Children’s ENT department Monday to schedule a clinic visit, and then schedule his surgery. My guess maybe next month, by the time he gets seen; and with his history will be an overnight stay to make sure everything goes OK, especially with probably having to tinker with his diet a bit for anesthesia. At least it will be a planned hospital trip!
And an update on his genetic testing. Wanna venture a guess on how far it’s gotten?! That’s right NOT far. It’s like there is a process before a process, and something that takes time, adds even more time to get it going. Basically, the last update I got from Children’s was that the Excome committee agreed to the testing, after one of the neurogeneticists goes over his MRIs. And it took a month to even get this answer from the committee, because they only meet once a month, and when we had our May appointment with his doc, we had just missed that May meeting, so we had to wait for June. Then a few more weeks to get that update. And I was told that once the neurogeneticist goes over his MRIs, then it’ll go to insurance for pre-authorization, and to call back in a few weeks. Well I have called today and left a message for a current update. I will not be surprised one bit if they come back and either tells me they haven’t had time yet to review his scans, because two of the three docs are on vacation, or that they have reviewed and want an updated scan. His three scans are from December 2013, July 2014 and October 2014. So he’s now two, much bigger, been off big meds for a long time, and it’s been 9 months without an updated scan. Now, I don’t know if they will insist on having it that done, if needed, before going to insurance, or that they can do both at the same time; which I certainly hope. Either way it’s coming that point in time where he’s gonna need an updated MRI anyway (according to his neuro’s). So I’m basically planning on that happening over summer, during our genetic waiting process. But while we wait, hopefully within the next few weeks, Riley will have his stander and be working on slowly getting himself up right! Insurance approved that piece of equipment, totally covered. They “mostly” approved his therapy stroller, the whole thing, minus all the straps that keep him in basically. This will be a good chunk of change if insurance decides not to cover that, but kind of need them! I’m also starting the process of appealing insurance’s decision on out right denying his bath lift. They see it as a comfort/convenience. Don’t get that it’s certainly not for me lifting a slippery long and awkward kid in and out of the tub, who can’t help me, and risk hurting myself in the process. Signing over rights to have Riley (who is also my doc) appeal on our behalf. So will see where that goes, will just take lots of time I’m sure.
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