Tuesday, July 19, 2011

Shaking with Jubilation


Excellent news: The pediatrician watched the video I made of the little guy shaking rapidly and he says it's something called a shuddering attack (or shuddering spell), it doesn't affect the brain and he will outgrow it. It just looks scary because it can be mistaken for a real seizure. You have no idea how relieved I am.

Wednesday, July 6, 2011

Waiting..


So the ER docs think it could be infantile spasms which is what I figured (a rare form of seizures that are worse than your typical kind) so they said they'd send a report on over to Skyler's neurologist. I call Skyler's neuro and the receptionist says no, ER docs can't refer you over. You need to go to your pediatrician and have him refer you and then wait while we assess his priority. Lovely. At least the ER doc did manage to get us an EEG, too bad it's in September. For now I am being hopeful. He hasn't had any more episodes like he did that day. There has been shaking/tremors while feeding and falling asleep but they're brief and he seems to stop when I touch him. So I am taking that as a good sign and telling myself he is fine so I can keep my sanity until the EEG.

In other news, my homeschooling motivation is in full force. I'm really happy with our decision especially since his OT with the CNIB told us that he won't receive services in school. His vision is bad but not bad enough for him to get help, which as she tells us is the worst situation. Those kids end up struggling because they can see, but not well enough. At home he'll have all the support he needs and we can take it slow, use a magnifier, make things large print, take breaks. Whatever we have to do. The one on one time will be invaluable I am sure. So right now I am deciding on books that we need to have. We're not going to be using any set curriculum. I find them too limiting, and I am horrible at following a day to day plan. I am more of a go with the flow person.

Instead we'll have access to several curriculums, as well as workbooks that have everything we need to know for each grade level (and they're Canadian too). I'm basing our homeschooling on the idea that learning should be fun and engaging. If you enjoy it you are much more likely to remember what you learn. I'm thinking we will let the kids decide what they want to learn about for the most part, with a bit of the mandatory stuff thrown in so they keep up with their public schooled peers.

Today or tomorrow I am heading off to Chapters to find some books for our homeschool. We're going to be using the library a lot I am sure, but I think it's essential to have lots of good books around. So my question to you is, if you were being homeschooled or homeschooling your kid, what kind of books would you want to have at home?

Sunday, July 3, 2011

A New Path

Yesterday when the morning started off with Skyler puking into my mouth I stupidly thought to myself "At least it can't get worse than this." Then I quickly I took it back, but it was too late. I know that just dooms you, when you think it can't get worse it always does.

Which is why I was only mildly surprised when last night ended with Adriel having (what I'm unfortunately sure was) seizures. There is almost zero doubt in my mind about what I saw, it happened 3 times. The first two I thought were just really bad shivers, we were outside and the wind was blowing. Skyler touched his leg and he jerked and stiffened like he got goosebumps or a really bad chill. He did it again when I touched his foot to see if he was cold (he was). So we went inside. About an hour later I was breastfeeding him and he fell asleep. Then he started to wake and his right arm went up by his head like he was startled and he began jerking it rhythmically and fast. I put my hand on his tummy and said his name several times but he kept going for a few more seconds. Afterwards he cried and I held him and then he was fine..

The jerking movement was the same feeling I felt when he was in the womb and I asked my OB. She said he was just stretching and sometimes it feels like that.. I feel foolish for hoping that this was some sort of f*ed up stretch he was doing, but in my gut I think I know that this was not just him stretching. When Chuck got home from work about 5 minutes later I told him what happened. I googled a video of a baby having infantile spasms and the first one I saw was a baby doing the same thing Adriel did outside when I thought he was cold only an hour earlier.

We call Skyler's neurologist tomorrow morning for his MRI results anyway so I suppose the timing is perfect. (Ha. Perfect time to have seizures, is there such a thing?) We'll make sure he checks out Adriel as soon as possible. Unless it gets worse today and we may have to take him to children's. Right now I am eerily calm.

Last night there were tears, but this morning I knew I had to do something to center myself. So I wanted to walk down to the river where I usually go when I need to think, but there were people there. They were smoking and hacking up a lung and it was disgusting so I almost left feeling discouraged but then I decided to find a new path to the river. And when I came out of the woods I had a new perspective so I wrote down what happened.

Today I walked a different path. In some places it was mucky, in others it was completely washed out. Sometimes I felt lost. Sometimes I had to back track and find a different way. Sometimes I had to make my own path. It wasn't easy or straightforward like my old path, but the view was amazing. I think I am ready now, for what's to come.