Drumroll please...
...Miles is crawling! Within the last couple weeks, he also learned how to bring himself to sit from any position and is even pulling himself onto his knees to get a better look. He is not a very proficient crawler yet, but he gets where he wants to go (usually wherever Kai is). Kai loves having such a doting brother, he just doesn't know it yet. Oh and in even happier news, Miles started babbling. He says mama, dada and hi... often appropriately, but probably coincidentally. Unfortunately, Miles has been sick the last few months with a relentless runny nose, ear infections and rattly cough. He has been extremely cranky (I'm talking he cries like 2-3 hours of the day each day) and absolutely hates nursing. Everyone says, he must just be teething, or of course he's cranky his ears hurt. Whatever the reason, it is exhausting, and we pray every day that it really is just illness bothering him and not something more... permanent.
At Miles' last 24-hr EEG we got mixed news. At the time, we learned that it appeared he still wasn't having seizures but that his background wave length (I gather code for brain activity) was significantly less than what they want to see for a baby his age. The neurologist didn't seem thrilled with this finding but hemmed and hawed as doctors tend to do that we couldn't necessarily predict anything from this, it was more just showing us that his brain is developing delayed. Let me tell you, I researched this thoroughly and talked with many other doctors to understand what this meant and I believe we are in extremely unknown territory. I've tried to convince myself that the readings were just poor because it was another terrible and painful EEG and Miles basically didn't sleep more than an hour at a time even at night so his brain wasn't showing off (I mean I'd show delayed brain activity if I was kept from sleeping) but the truth is we don't know. We don't know why it's that way or what it means but it is what it is. Miles doesn't seem delayed. I'd have to think if you knew nothing of his background you'd think he was a little uncoordinated, spastic, and extremely curious but you wouldn't think anything of it. He is behind in his fine motor skills, but we'll get there.
Seizures and Statistics:
I've had a few people comment to me that seizures aren't a big deal for one reason or other and I should stop putting so much weight on him not having seizures yet. While I agree that often epilepsy is relatively common and many people lead very normal lives with it, research shows that for children with Tuberous Sclerosis Complex, having seizures within the first year of life statistically shows a greater correlation to intractable seizures (meaning can't be treated with medicines) and severe intellectual disabilities. Of course, that doesn't mean if we get to a year we're in the clear, we'll just feel like for once we will have a statistic working for us.
It's hard to look up TSC. It's difficult to see the faces covered in angry red tumors and read the stories of adult children seizing day in and day out. If I see one video of a baby having seizures, for weeks I have anxiety thinking Miles is having seizures I'm just missing. I have to constantly remind myself that the internet is full of the worst case scenarios, and do my best to focus on statistics, new research, and the stories of hope. So to help keep you from having to wade through the rough territory, here are some interesting statistics.
Accordingly, for people with TSC,
- 80-90% will have seizures (of those, 66% develop intractable epilepsy)
- 60-80% will have intellectual disabilities
- 50-60% will meet the Autism Spectrum Disorder criteria
- 40% will need lifetime in-home care
- 90% develop neuropsychiatric disorders
The statistics vary widely because researchers try to account for undiagnosed populations - so for example, 80% of diagnosed TSC patients show some level of intellectual disability, but researchers think that number is more likely to be around 60% if you were to account for all the people that are never diagnosed. We often remind ourselves that had it not been for that one giant tumor next to his aortic valve Miles would have been undiagnosed as the other 7 tumors in his heart never even showed up on the fetal echocardiograms and we would not have had a reason to scan his brain and his kidneys. Plus, there have been huge strides in medicines the last few years that will likely have a major impact on the outcome of these kids that is not reflected in the statistics. We have a lot of hope - rational and cautious hope - but still hope.
The best thing we can do right now is just embrace this smooth time in little Miles' life and relish the present... I'd relish the present a little bit more if that included consistently good nights of sleep and a lot less crying, but we're close on those points as well. So look at the now, look how cute he is!
(And yes, for those concerned mamas out there, that's a breathable bumper.)
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