Neurology

We saw our neurologist today for follow-up after Ava’s 24-hour EEG.

Some of you know I can get rather punchy when I’m tired, and for some reason (I blame it on the barometric pressure) I was really tired and headachy this afternoon during our appointment, even though I hadn’t really been dreading it. Every time the doctor asked a question, I would say something goofy or ironic or give him a dramatic, half-funny-half-desperate look…I don’t even remember exactly how it went, because as I mentioned, I was tired, and just really wanting him to help us and not wanting to really be emotional but still be human so it didn’t feel like a business meeting about my child. Anyway, was a good sport about the whole thing and I think I may have entertained him a little bit while he was giving us helpful information. He said something at the end about how we were handling things well, so I guess my punchy-ness was all right.

As for the ACTUAL report you just skimmed the above paragraph in order to get to: The EEG picked up some topical seizure activity on the right side of Ava’s brain while she was sleeping. Most kids with Angelman experience some kind of seizures, so I wasn’t surprised something showed up. It isn’t a crises situation. Things being as they are, I was glad seizure activity showed up so we can address it. If nothing showed up, we would possibly spend the better part of this year wondering whether she was having seizures or not.

We’ll sbe tarting her on medication to address it. I could tell the doctor is used to getting some push back from parents about starting meds. I appreciated the fact that he was sensitive to that…like he was trying to read whether we were going to react to this suggestion or not. Every has their (strong) opinions about medication, but for now we had kind of already accepted the fact that Ava will need some medication to control seizures. It’ll be a low dose to start. Down the road we can try some dietary adjustments to help minimize her seizures, but her feeding issues are too complex right now to add that to her treatment. So, we’ll see how this goes.

Birthday

Ava had great fun celebrating her birthday this weekend. I can actually say that and mean it. Earlier this spring I wasn’t really looking forward to the big event because she is so far behind other babies her age, and even ones who are younger. But I think by the time we got to this past week I was feeling more okay about it and we really did have a good time.

Yes, people would have come and celebrated no matter what. But it’s helped a lot that finally, Ava gets excited when she sees people—especially people she knows—and there are multiple things that make her really happy, not JUST her beloved Wubbanubs. (She also enjoys people who talk with their hands, the color red, food, eating her socks and long walks on the beach.)

After weeks of googling and mildly stressing, I also found a dairy-free, choking-free way to give her a frosted cupcake with a candle in it. She even got to safely play with it and get messy. 

Ava has also gotten good enough at sitting up that she can play WHILE sitting. I know, your kid (and my other one) could probably always play while they were sitting, unless they had low tone like Ava. Or you never noticed or thought about it because it wasn’t an issue. But Ava has to concentrate really hard on new things and on things that take a lot of strength. It’s taken more than month of sitting to be able to play with a toy in front of her at the same time. At last, she can finally entertain herself for a little while in an upright position. This is actually so much more life-changing for me than I have time to describe right now. #nomoreplaymatmomguilt

I’m sure this year is going to hold a bunch of doctor’s appointments and even more therapy, but it really does help that she is starting to make progress. It sounds selfish, but it’s pretty discouraging to take care of a baby who doesn’t really respond to you and doesn’t, well, do anything for the first 10 months.

I definitely couldn’t have imagined we’d start last week with a one-hour, 5-person meeting to make a plan to help Ava get herself into a sitting position. #rabbittrail

Hope is a big word with deep things underlying, but in a right-here-right-now sense, I am hopeful that THIS year we’ll get to help Ava reach some of the milestones she didn’t get to in Year 1.

Of course, now that I’ve said that you’re going to ask what exactly we think she’ll do next. I don’t know. She’s a long ways from walking or even crawling. Milestones for her are tiny, broken-down pieces of milestones. Maybe we should call them yard-stones or foot-stones. Sometimes they feel like inch-stones. Does that even make any sense? Anyway. While it’ll be fun to help her do new things, we are learning to not let whatever-length-stones be the baseline for our happiness and enjoyment of Ava. It’s not fair to her and it’s not good for us.

Along with her new skills, she is finally becoming more social and we are getting to know her better and getting to interact more. That, I think, will be something we can enjoy this year, even if she doesn’t master crawling or walking.

Happy Birthday Ava.

Milestones, Ava style

So happy about Ava’s new baby book that came in the mail today, customized by family to fit Ava!

I’d shared recently that I wasn’t enjoying filling out her baby book much because it lists all these milestones and just kind of rubs in the fact that she’s not able to do very much, at least not compared with a regular-kid list. I was having to work really hard to come up with things to say that weren’t about doctors.

THIS baby book is perfect! It focuses more on our memories and lets us write in her milestones instead of having to work around a set that doesn’t fit.

Thanks to Shutterfly, anyone can do this…although there is probably a market for a special needs/developmental delay baby book, since so many families walk this kind of road.

And while we’re on milestones, Ava had one tonight that may make it into the book. I’m going to include the video here. Some of you (especially those who spend time with her) may be impressed, and others of you may be surprised at just how hard it is for her. You have to look closely to see how she is “trying” to get it.

The only note I’ll give with the video is that Ava picked up this veggie straw twice without any help before I got this on video.

Baby Book Categories

Ok, since I was asked…here are some things that should be marked as unique “milestones” and record breakers in the world of Ava:

Loudest squeal of joy at 4am
Smallest poop that can still technically be called poop
Most burped cloths used for a single feeding
A wax museum supplied solely by Ava’s ear wax
The amount of breastmilk, in ounces, that I pumped for her…and the amount I had to donate bc she couldn’t drink it (I don’t even know…it was a lot)
The day Ava met her beloved Wubbanubs and we got to sleep for more than an hour
Longest stretch of time to keep a propped pacifier in ones mouth
First time she really laughed when Elijah was trying to entertain her (he is resilient)
Favorite eye patch design
Favorite ear mold color
First time pushing down on her hands and on her feet
First time getting a veggie straw in her mouth instead of in her eye
Definitely marking the day she quits drinking Alimentum, whenever that happens…and the day she finally moves on from size 2 diapers.