The yucky, evil seizure monster gave Becca a birthday present yesterday. She had a good day. Now granted a good day for her entailed two seizures (one cluster of head drops, and one other fairly mild event), but still it was a good day with regard to seizures. That is a huge blessing.
This morning, before she has even gotten out of bed she has had a more severe seizure, to which she is currently “sleeping off”.
Things change day-to-day – hour by hour with epilepsy. But we take our great days when we get them. And a not so good start to the day doesn’t mean the rest of our day will not be awesome.
I also have developmental news to brag about. On Wednesday we opened a present that came in the mail. I opened the outer box and let Becca have at the gift bag inside. Other than a brief interest in the tissue paper, from which she was easily re-directed, she pulled out items and opened her own present. It was so great to see her investigating something like this. And it wasn’t the pull out, toss aside, reach in pull out, toss aside that we have seen before. This time she pulled out, actually checked out the item a bit, and then with a reminder, and moved back to the bag for more. She got 2 outfits and 2 board books. I think I had to help her a bit with the books, for her hand placement.
She also got several birthday cards over the past few days. Again – each one I started opening the envelope and let her rip open the rest of the envelope. I then helped her put her hand onto the card and she pulled the card out. Now for someone with a typical child this doesn’t seem like much. Anyone with a Special Needs child can understand how HUGE these tasks are. We never stop incorporating OT (occupational therapy) tasks into everyday things.
Hoping the rest of today is as awesome as yesterday. Although I could do without the cranky child portion.
Oh – 1 week of intercession down – 4 to go.
Happy Birthday to my Baby! Okay I know I’m still a day early – but as a mom I get rather retrospective around this time of year. Looking back remembering what it was like when I was in labor – having contractions for days. How amazingly easy the c-section went. Holding my sweet princess for the first time
I love looking back through the pictures of how she has grown over the past five years. Not sure what is wrong with the Flickr photostream as of the time of my typing this entry. Granted it seems like all of wordpress doesn’t like me anymore (their once awesome entry system isn’t doing what it did a few weeks ago). Of course – word from my friends who still use Caringbridge is they have been making all kinds of un-user friendly updates over there as well. So it isn’t just me finding all kinds of bad luck with the internet these days.
Becca is doing pretty well these days. Seizures are much more stable than they were a month ago. As of now she seems to fluctuate, really good days, then not so good days. Not sure if she is getting into things she shouldn’t or what. It’s always possible (or probable?) she is picking up things off the floor and eating them. Pieces lint, leaves – whatever else she can find. I read another parent sum it up well as “floor food” (granted they were referring to their typical toddler picking up Cheerios and such they had dropped). Kids do seem to like floor food (as disgusting as that sounds – its true – and if you can’t stomach that idea you shouldn’t become a parent).
We picked up her new helmet today. I opted for one of the custom colors this time. I was tired of the pepto pink that we’d had for all these years. No matter how much you decorate those things you just can’t get past the fact its a disgusting shade of pink. This time I chose what they call “baby blue”
And yet they call this "baby blue"
As you can see I’ve already decorated it, with rub on stickers. Butterflies and flowers. I find a well decorated helmet makes them much more child friendly when she wears it out in public. Sure other kids see the helmet, but they are much more inclined to see the stickers and decorations. It also keeps in line with having a fashionable little kid. I mean just because a child has special needs and has to have things like helmets, wheelchair or AFOs doesn’t mean they can’t look awesome doing so. Kudos to the makers of AFOs for finally making them with cool prints! (even though Becca walks well enough without them and has no need for them I know enough kids who wear them). Things like their wheelchair or walker can easily be ordered in really cool colors. Becca’s wheelchair she uses at school is HOT pink and has light- up casters. Do you know that other kids comment on the color and the cool light up casters. The get so excited about these things. It doesn’t even occur to them that Becca is “different” because she is using a wheelchair instead of walking down the hallway like them. They are too busy grabbing their friend to show off the light up wheels.
No big birthday plans. Next week Becca and I will head up to my dad’s place up at Lake Gaston (note to any psychos reading this blog – Daddy will still be at home so don’t try anything funny). Becca LOVES to ride on the boat my dad has. It’s to cute to watch her totally relax with the wind blowing in her hair.
School is out until July 18th so we have several weeks of fun at home.
Oh – I’ve got a favor to ask you all. I know I mentioned the great folks who are giving Rebecca an iPad. Well they are working hard to do the same thing for other Special Needs Children. So I’m doing my part to spread the word. If you are one of my friends with a SN child I encourage you to consider this opportunity. I know there is a $5 fee this time, and I’m sorry. If you don’t have a SN child, or already have an iPad for your child, please consider posting this on your blog or passing along the info. I do know this one is also open to educators of SN kids. . I’ve heard people comment that the link for the email tries to make you open outlook – so if you don’t use outlook here is a trick – simply move your mouse cursor over the link and the email will show up.
I think that’s about all for now. At least until I get another bug up my butt and decide to change the format again (what can I say – I haven’t found THE one yet)