A little over a month ago J turned one. ONE. Wow! We had a party for her and I went a little overboard with the decorations for a one-year-old’s birthday party, but who could blame me? This was a celebration for the whole family. J’s first year was a challenge for us all.
J, however, is not letting any of this define her. She is charging through milestones now. In the last month alone, she started sitting up from lying down, crawling on her hands and knees, pulling herself to standing! She is now saying “mamama,” and “dadada,” and “bob.” She looked at a ball the other day, concentrating very hard, and said softly and deliberately to herself, “ba.” I was so surprised and thrilled.
J’s vision has also come a long way in the last four months. You would never know now that she had, or has, any vision problems at all. Her eye contact seems normal and she can recognize people and objects from across the room.
She’s still not quite where a one-year-old should be socially, but it’s hard to tell at this age if that’s a delay or if she’s just going to be a very independent kid. She does look to us a lot to see if we’re paying attention, but she can play by herself for long periods of time. Less so now, than before, but still more than other children her age that I’ve seen.
She’s cutting two more teeth which, if you’ve lost count (easy to do with this kid), are numbers 11 and 12, two top molars. We had our first bloody injury when J rammed the wood end of a xylophone mallet against one of her new teeth and scraped her gum. I thought at first she’d broken her tooth off, but thank goodness that was not the case. She wailed about it all the same, poor baby. I guess we’re lucky if we made it to 13 months before blood happened.
J’s new neurologist decided to increase J’s topirimate dose after discovering from a blood test that J’s level was 3, less than ⅓ what it should be. Before she was taking 15mg twice daily, and now she is taking 30mg in the morning and 45mg at night. She’s no longer taking the levocarnitine or the B6 (yay!) and so giving her meds has become exponentially easier. We haven’t noticed any side effects from the increase.
Our biggest challenge with J right now is actually a normal baby problem: sleep.
J goes to bed at 7-7:30pm and is still waking around 3am for a diaper change and a bottle, but then she’s up for an hour or more.
We’ve tried everything but this girl is just some kind of baby robot who doesn’t need sleep. We’ve tried extra-absorbent nighttime diapers, giving her boring old water instead of milk, ignoring her, not ignoring her, letting her play in her crib until she goes back to sleep, bringing her into bed (which makes it worse). We have a white noise machine which doesn’t do much, and sometimes we’ll cave and put her in her Rock’n’Play, but at 27lbs and 31” she’s way too big for it and we really hate to encourage that habit. Another bad, naughty thing we’ve tried: TV. I’ll put a show on for her on my laptop and turn the screen off so she’s just listening. This does help, she will listen quietly until she falls asleep, but I don’t know if it’s something I want to keep doing.
We even tried putting her to bed later, at 8pm, but then she just started waking up at 4:45am and taking three naps during the day. She was super grouchy and a few days into that she was ready for bed by 6pm and then she woke up at 11:30pm and didn’t want to go back to sleep.
She usually gets up for good at 6am (which would be fine if she [and we] slept through the night), so on a good night she gets about 9 hours of sleep and naps no more than 2 hours during the day. That just doesn’t seem like enough for a one-year-old! It’s definitely not enough for mama and dada. We haven’t found the magic sleep solution yet, but I’m hoping that time and experimentation will reveal it to us soon. I have a sneaking suspicion that the solution is having her own room, but in our one-bedroom apartment it’s not feasible right now.
Now for some big news: J is going to start daycare in a few weeks! I’m so excited for her to be around other children. She always seems to make such big developmental leaps after playdates with her baby friend who is the same age, but we don’t get to see him and his mom that often because we’re all just so busy.
I brought J with me to register her and meet the teachers and she was right at home in the nursery. After filling out paperwork I found her there happily chewing on a car, sitting with the other children, and the teachers, who were right on the floor playing and singing to the babies.
Finding a daycare willing to take her on is a huge relief. Others were so apprehensive about J’s condition that they would stop returning my e-mails after finding out that she has epilepsy. I find that fairly ridiculous as any child could develop epilepsy at any time, and all daycare teachers should be educated enough to handle that. J’s seizures are well controlled and while behind developmentally, she by no means needs one-on-one care anymore. At the same time, though poorly handled, I’m grateful those daycares were so transparent about their feelings toward children with special needs because I wouldn’t want to send her to a daycare like that. J deserves to be somewhere she is accepted and not thought of as a burden or a timebomb.
In other news, if you are in the throes of IS treatment, or have been through it in recent years, and are appalled by the $34,000 price tag on your child’s ACTH medication, here is a victory that could potentially pave the way for more affordable IS treatment in the future. Sure, a $100 million fine is a drop in the bucket for a company like this, but at least someone is taking notice of this gross injustice and working toward doing something about it. It won’t help those of us who’ve already been through treatment, of course, but we root for those who will go through this in the future and for the children who need treatment options their parents don’t have to worry about affording. Money shouldn’t have to be another issue for families dealing with life-altering illness.
No comments:
Post a Comment