Cute Three Year Old!

Becca turned three on the 20th of March! I can't believe she's three! Well, I can and I can't. Leading up to her birthday I had many conversations with Brian about what we should do for her birthday. Of course it's true that she has no clue what a birthday is let alone that it was going to be her birthday but that doesn't change the fact that we know it's her birthday. I was having a really hard time leading up to her birthday and just thinking of all the things that we miss out on that we (and she) should be enjoying with a normal three-year-old. But we decided that we wanted to make it a happy day and try to make it a special day for her in any way that we could think of.

Her day didn't start out the happiest of days for her, but we spent extra time playing with her, laying next to her, and talking to her. I didn't make her do any therapy all day. After a nap we took her outside for some play time...

As you can see, she wasn't too thrilled with the outdoors. She usually loves being outside. I think she may have had a headache. So we tried something else...couch time and some M&Ms (Becca's favorite candy).

I think that did the trick. She enjoyed some cuddles from her aunts and opened a couple presents (watched Daddy open a couple presents) and had some "birthday cake" I made a "cake" out of sherbet mixed with cool whip over a graham cracker crust and she loved it! It seemed to lift her spirits. She then got a special visit from Grandma and Grandpa. She sure loves it when people come to visit her.

Becca received many phone calls throughout the day from people who were out of town but wanted to wish her a happy birthday. She liked hearing people sing happy birthday to her...

It was a nice day. I think Becca had a nice day (besides her couple unhappy times). Thank you all for your phone calls, cards, presents, and birthday wishes! Happy Birthday to our beautiful Becca.

Melatonin Helps

So Becca's been taking a melatonin pill every night an hour before bed for the last two months, and I think it's safe to say that it's definitely been helping her. It was getting to the point where every night she'd cry for at least an hour, sometimes up to three, when we put her down for bed. But she wasn't sleeping in any longer -- and it kind of seemed like she was even waking up earlier -- so we were getting worried. I mean, it's not like she was mouthing off when we asked her to help clean up her toys or anything, but was having a lot harder time being happy.

Becca usually goes down for bed at 8pm, and she wakes up anywhere from 5am to 7am. I don't remember how many hours of sleep 3 year-olds are supposed to have, but from what I hear that's really good for a Rett girl. Sometimes she wakes up quietly, and sometimes she wakes up and yells I think out of boredom. Paula doesn't get up with that early, she goes into her bedroom (she still fits in her crib pretty well... no idea what we're going to do when we need to move her to a bigger bed), pulls out her pillow and gives her a toy instead, and that usually keeps her happy for an hour or so.

Anyway. Becca's neurologist had mentioned melatonin before if we ever needed it, so we called her up to find out what kind of dosage she should have. It's not a prescribed thing, but it's not like you can find it in every grocery store, so Paula had to go to Rite Aid to find it. She found a liquid one and a pill one (sublingual was the term on the bottle... apparently that means under the tongue as opposed to less-than-capable at speaking even one language, like it sounded to me originally), and wasn't totally sure what to get. She ended up asking the pharmacist to double-check that she remembered the dosage and everything, and he politely told her that melatonin isn't for kids, they shouldn't need it. She tried to explain the situation, but I think the guy judged her anyway. So we got the pills and figured we'd give it a go.

Becca doesn't keep things sublingual, so much. She's actually pretty good at rolling things around in her mouth -- way better at that than actually swallowing them, as it turns out. But she does swallow these pills pretty well, so that's cool. We just have to remember to give them to her every night an hour before bed, since it doesn't really help that much unless you give it a little time to do its thing. We weren't sure if it would actually do any good, but it seems to be working for Becca. Now she's falling asleep in a blessedly normal ten minutes or so, and waking up a happy girl once more. And thanks to the Keppra, once she's gone she stays a comatose noodle for most of the night... you couldn't wake her up if you wanted to.

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!

Our Happy Girl

I don't have time to write a long entry today, but I thought I would post a video of Becca from a few weeks ago. 

Becca really is happy most of the time and it is so contagious!  We sure love her.

Rett on the News

If you are interested in learning more about Rett Syndrome, KSL posted the story that ran last night on their website: http://www.ksl.com/?nid=148&sid=8649182. The doctor that they interviewed (Dr. Rope) is Becca's geneticist.  They talk about some interesting stuff!

Becca's Walker

We recently borrowed a walker from Becca's physical therapist and I know some people are interested to see what it looks like.

She tolerates it pretty well. We are working up to 30 minute increments and we're at 10 minutes so far. I don't force her too hard because I don't want her to hate it. She's starting to move a tiny bit in it, but is not taking steps yet. We are grateful for another way to do physical therapy with her and hope that it helps her!

Seizures?

We've wondered for a while if Becca has had seizures. It's a common problem for girls with Rett, although they can be hard to recognize sometimes -- even with an EEG, since the results are commonly abnormal in general for Rett cases. In Becca's case, we suspected she had them in her sleep, and that we may have actually seen some when she got startled awake. In the nighttime if we ever had to sneak into her room and accidentally made a noise, her eyes would pop open, and a second or two later her arms and legs would come up off the bed and start shaking/tremoring for fifteen seconds or so.

We asked the neurologist about it, and she assured us it was just part of her ataxia, and that when she woke up her muscles were just spasming because she didn't have control of them yet. That's what we wanted to hear, since we really didn't want her to be having seizures. It seemed to make sense, too, since she could look around and wasn't holding her breath when it was happening, and someone somewhere told us people won't look at you when they're having a seizure (not so sure if that's true anymore, but that's what I heard at the time).

Anyway, now I'm not so sure she wasn't having seizures. I think we've already mentioned the two separate mornings when Becca woke up a complete noodle, just very worn out and moany. She'd mostly recover after half an hour or so, but it would mess up her development somewhat, and we were really worried that those actually were seizures, so we talked to the neurologist again, and ended up getting a 48-hour EEG scheduled.

Becca had one of her shaking spells while hooked up for the 48-hour EEG. We pushed all the buttons and everything to make sure they got it recorded, and one of the nurses came in right after and said it looked like they'd recorded a seizure. Next morning the neurologist stopped by and said that wasn't true. She said Becca's EEG was abnormal in general, and while everyone agreed that the shaking looked just like a seizure, the EEG didn't show anything to convince them that it really was a seizure. Even still, she decided to put Becca on Keppra in case the other two events really had been seizures.

Fast-forward to now. Becca doesn't do the shaking thing in her sleep anymore. At all. Her ataxia is just as bad as it's ever been (we were playing piano together today and I had to hold her just right or she'd shake at her trunk and lose control of her arms), so I doubt that she's just "better", but I can't get her to shake in her sleep like she used to. I've actually been trying for a few weeks to get a video of it to post, because we can't seem to get a definitive answer on what it is, but she's actually a really deep sleeper now. I just went into her room, flicked on the light (she flinched at that, but that was all), made some really loud noises, and even sat her up in bed, but she wouldn't wake up at all. I finally got her to open her eyes, but there was no startling into shaking like there used to be.

I know there's probably confounding factors. Maybe Keppra makes you sleep more soundly or something, or maybe she's just moved out of that phase. But I really can't help but suspect that those were little seizures she was having. The last time we spoke to the neurologist (Dr. Benedict) she said she wasn't convinced that the episode they recorded wasn't a seizure, and I'd probably say the same thing. Especially since she hasn't had the little drops in development that she used to have.

It's probably worth mentioning that Becca doesn't breathe well, especially when she's asleep. She gasps sometimes when she's awake, and when she sleeps she tends to take little tiny breaths, stop breathing for a few seconds, then take a deep breath. I know that's also not uncommon with Rett (and Paula actually breathes infrequently when she sleeps, too), but there you go.

Anyway, the moral of the story is we don't actually know if Becca's ever had a seizure. We're pretty sure she has, but nothing's been officially observed. And we wonder if maybe those small shaking episodes were seizures as well. The good news is that Rett cases tend to have fewer seizures as they get older (although by older they tend to mean adolescence or beyond, not two and a half), and of course that whatever those shaking spells were, they're gone now -- can't say as we were the biggest fans of them, whether seizures or not.