An Off Week

Becca is having a bit of an off week. Brian and I had just mentioned last week that Becca has been in a really good place lately. She’s been so content. By content I mean happy 97% of the time. She hasn't been making any improvements in motor skills (gross or fine), but she hasn’t been losing skills lately either. We are so grateful that she has stayed healthy for the most part through the sick season and she has been gaining weight well. She also has seemed more with it lately. I don’t know what it is but she seems to be trying to communicate more through the way she looks at me. But, as is often the case, when you say things are going well, things take a turn for the worse.

Brian and I think that Becca may be having little seizures this week. She’s been doing this thing where her eyes roll back and her limbs shake a bit and then she’s fine. They only last a few seconds. We have no way of knowing if they’re actually seizures. She shakes quite a bit on a regular basis without having a seizure. This morning she had one of her moments where she zones out for a while and just lays there (I think it’s a little seizure but of course I can’t be sure). The only thing she would move was her poor little hands that never get rest (except for when she’s sleeping). She has been pretty unhappy these past couple days. I’m hoping these seizures or whatever may be bothering her get better soon. Brian and I both get really discouraged when we can’t figure out what to do for her. I scheduled an appointment with her neurologist. Maybe an adjustment in her medication will do the trick. I think that we’re just really worried that she may be starting to go downhill again. I don’t feel brave enough to see her lose more.

Also, I really feel like Becca is trying to tell me something lately. Sometimes she will look deep into my eyes with a look that seems to say help me. It truly breaks my heart every time. I know that she is going to learn how to better communicate with us, but until then we just have to try to be patient.

I can’t remember if we mentioned on here, but at the end March we got Becca’s wheelchair! We’re really liking being able to move her around more easily and it seems like a really nice chair. I don’t have a picture that shows all of it yet, but this will give you an idea…

A few weeks ago my family was in town for graduation. It’s always neat for me to see how much Becca loves people. She really seemed to enjoy having everyone in town. This video is from that weekend. She was having a fun time playing with her Daddy…

I guess this post is rather random. I have so much on my mind with Becca and getting a tiny bit out helps. But, in the spirit of randomness, here is a random picture of Becca that I absolutely love.

I could just cuddle with you all day dear Becca.

PS- Becca, you have really pretty teeth…will you stop grinding them? Thanks.

Hand Movements

One common symptom of Rett Syndrome is repetitive hand movements. Rett girls flap their hands constantly (it sure seems like they'd have some pretty buff hand muscles, no?) often at or near their mouths. Becca fits this symptom exactly. Coupled with her very poor motor skills, her hand movements makes it really hard for her to do anything useful with her hands. When she was younger we taught Becca some basic signs, including "eat" and "drink", and she's still able to sign both of these words, but that's about all she can do successfully. Becca also could pick up food with her hands, and even at one point started using pincer grasp to pick up food and small items, but she gradually lost that skill.

I wish we had some better videos to illustrate Becca's gradual loss of motor control, but at the time we were a little sensitive and only took very flattering pictures and videos of Becca, so I'll just have to re-cap with words.



This is Becca at about 12 months old. You can see here that she was good at holding on to things, and could use both hands. She had enough control at this point to bring food up to her mouth, and to hold on to something as long as she wanted. She would hold and shake toys, and really liked to hold things in her mouth. We were actually bad parents apparently since we let her drink her sippy cup lying on her back, but she could hold the cup by herself that way and we didn't really want to take that skill away from her, so :-P.

About this time (around 12 months) we started feeding Becca cream of wheat (mixed with ice cream) to get some heavier, caloried food into her (and mostly because it had more fiber than other foods we could find for her). She really liked it a lot. She would sign "eat" between bites, and end up getting cream of wheat on her hands (and the couch, and her clothes... cream of wheat is a horrible food to try to clean off of things, if you were wondering). She liked the way it felt and she would rub her hands together whenever she had cream of wheat on them.

After a little while it became sort of a reflex for her, and she'd flap her hands against each other whenever she was eating, even if her hands were clean. That was one of our big worries, since it sure seemed like something was wrong. But for a while it was just when she was eating, which technically could have just been a tick or something.

That same clasping movement started happening more and more often. Like you can see in the next video, it was relatively subtle at first, but she would close her hands repeatedly, and then bring them to her mouth.



She liked to bring everything to her mouth. We bought her an electric toothbrush because the therapist said sometimes if kids don't get enough oral stimulation they'll put everything in their mouth, which didn't help much, but at least we were cleaning her teeth better :-). The hand movements got worse -- very gradually -- and she started dropping things. If she wanted something, she'd reach out and grab it, pull it to her mouth, and then drop it after a second or two. She also stopped holding her own sippy cup.

By twenty months Becca couldn't really hold things anymore. Her fine motor skills were pretty much lost, but her gross motor skills had improved a little bit -- this was her peak, probably, as far as more broad gestures. She had a few weeks where she was even clapping! I'm glad we got to see that, even if only for a little while. She seemed happy to be able to express herself like that.



By two years her hands moved constantly and she couldn't really do anything productive with them other than mash big buttons on electronic toys. You can see ere where she tries to eat her birthday cupcake. She really wanted the it, but couldn't figure out how to get it to her mouth.



That's about where she's stayed since then. Her hands open and close constantly, and she usually tries to have one of them in her mouth. Every once in a while she gets them red and sore from sucking on them too much, but she's been better about that lately. She does still sign eat and drink, so I'm really glad we taught her those early on.



It's been hard to watch Becca lose skills like this, especially as we see other kids her age (and now her little sister, too) learning so easily. I don't think people appreciate what a huge miracle it is for kids to learn new skills so quickly and so often. Becca's little sister is a constant miracle to us as she just decides to pull herself up to standing one day or to start feeding herself or to walk from one piece of furniture to another.

Next time you're worried because your kid won't say "mama" or doesn't seem interested in walking or whatever, take another look -- I guarantee there's amazing things to notice that they're learning all the time. And if nothing else, be grateful that they hold onto the skills they learned six months before. You don't know what a big deal that really is.

Rough Week

I'm having a rough week with Becca. She has been shaking more this week. She has been a lot weaker this week. I put her in her gait trainer and she just goes limp and gets mad. But I do it every day anyway. I set the timer and we muddle through until at least ten minutes. I know it's good for her and I know that she'll get back to being ok with it and maybe even start enjoying it again. I'm sure it's hard for her to get back into the swing of things after being back from vacation.

I can't help but cry out of frustration and discouragement when Becca has a hard week like this. I'm exhausted. I think of all the things Becca misses out on. More than that I think of all the things I miss out on (mostly with not being able to communicate with her). Things are just so hard for her! A couple weeks ago I gave Katie a bath in the real bath for the first time and she just sat there. I didn't have to hold her up or anything and she wasn't scared and shaky. I was in awe! Is this what most kids do? I have so many of these experiences as Katie has learned things so easily. Mostly I cry because I'm discouraged. I'm not able to take care for Becca as well as I think she deserves. And man, it's just discouraging to work so hard at skills just to lose all our progress in one day. Makes you feel like it's pointless to work on things! But well, life goes on. I love sweet Becca more than I can say. I would do anything for her.

On a more positive note, Becca did quite well on our trip out to Colorado. She had a wonderful time with her Grandma, Grandpa and aunts and uncle. She loves her family so much. She really loves people in general, but it does seem like she favors those who she's most comfortable with. Lately sleeping has been harder for Becca. Well, sleeping hasn't been so bad once she gets there. It's falling asleep that is really hard for her sometimes. At times it can take her more than 3 hours to fall asleep. One day in Colorado Becca decided she didn't want to take a nap. She assured me that she didn't need a nap and that she would be a perfect angel for the rest of the day (I'm sure that's what she was saying with her little mischievous smile). Here is what she was like in the evening right before we were supposed to go out to dinner...

She sure makes me laugh.

Becca loves watching other kids play and it was fun for her to watch her sister and cousin get into trouble. She loves her sister and cousin!

Becca had a wonderful Christmas! She was healthy and happy. I couldn't have asked for a better Christmas present. I hope you all had a wonderful holiday season!