I've been trying to compose a post about Kenai for a few weeks now. I don't get very far because there's so much to say and because I don't know what to say. Sometimes, it's just "I'm worried" Sometimes it's boring details of why I'm worried. Sometimes it's paragraphs about how worried I am. I need to get it down because it's kind of eating up my insides and hell, maybe I'll blame it for holding the baby in...you know, your body will avoid labor if you have too much tension.
The worry started when we enrolled her in preschool. I think I mentioned this already but they said she had to be potty-trained. So, we pulled her enrollment. The school was great about it and we'll try again in January. Then it was time to get her back in to therapy so we spent a lot of time talking with her original PT who was leaving. As uncomfortable as he could make me (hello, touchy feely guy) he was so, SO good at what he did. He's leaving Children's to go to the VA in a nearby city. He saw issues with Kenai that we didn't see and may never have noticed, who knows. Not only that but he contacted her neurologist and neurosurgeon about what he saw. His last week at work I saw him twice while we were there with speech and OT. Both times he went out of his way to come and talk to me about Kenai and our concerns. He is just one of those stand-out professionals and now that he's leaving I realize just how grateful I am for the short two months she had with him.
Fantastic PT's concerns have set off some real concerns with Kenai's doctors. They wanted to see her right away. We went to see the neurologist and they wanted an MRI and xrays of her neck. Something about something maybe "didn't take" I didn't ask for clarification because I'm SURE (cough) she's fine and don't want to freak out unless there's really a problem. So we had xrays done the next day and she's scheduled for an MRI this week.
The problem she's having is that she is a bit weaker on her right side and clearly prefers her left. When Fantastic PT first mentioned this, I thought he was looking for things because I didn't see it. Then Jedd took Kenai back last month and Fantastic PT brought it up again. This time Jedd saw it. Then I watched her more closely and I saw it. Then it became incredibly obvious. I have a video I won't post because...YAWN, but it shows her playing ring around the rosey with Elliet. First they go to her left and she's leaping around the rosey. Then we ask them to go the other direction and she can barely do it. She ends up standing in place while Elliet spins her around. After a little practice she can do it but she's watching her right foot the whole time. Clearly there's a problem. It could be something easily corrected with PT and Fantastic PT assures us he's happy with Kenai's new PT. Apparently it could also be something not easily corrected hence the minor freakout by her doctors.
When we saw the neurologist (actually his NP) she said Kenai's neck is incredibly tight (something I hadn't missed but didn't really know what to do about) and is causing her quite a bit of pain. This could be why she's favoring her left side. At her age, kids tend to just compensate for whatever pain they have and keep on going. So for now she's taking ibuprofen everyday and valium when we go to PT. Hopefully we can relax a bit when we get the results of her MRI.
All this is on top of the day to day worries I already have for Kenai. She's awkward around other kids and not the quickest learner which is fine with ME but what's school gonna be like for her? She's got other giftings of course. She's one of the silliest kids I know and loves to have fun. Some of the things she does that are awkward are also adorable and funny. Just ask anyone she's licked. And she's got endless imagination. Check out this photo of her performing an ultrasound on me. She's only been in with me once or twice and that was weeks ago. We frequently ask ourselves, "where did she get that from?"
6 years ago