Terri has been sick the past two days, so I have had to go to school with Harlie. While I don't mind spending the day at school (sometimes it's actually quite fun) it stresses me out to think of all the other things that I'm not getting done at home. And I feel bad that I'm not with Cooper and that he has piece meal care in these situations.
I need a back-up nurse. But, that's really not a reality. Even if I trained a nurse, they wouldn't be sitting around waiting for me to call them at the last minute. Heck, at this point I can't even get a nurse to come to the house to do a meet and greet! Much less show up for work.
As much as I have loved some of the nurses we have/had... I can't help but HATE being dependent on them. It is such a crummy position to be in.
Anyway, this is the last week of school for the kids. There has been a lot of talk about Kindergarten being over and the excitement for first grade. I have no idea what Harlie thinks of it all (or if she even notices). But I can tell you that it is not easy to know that your child's classmates will move on without your child. Even when that was the plan to begin with! I cannot imagine how hard it is for parents of typical children to make the decision to hold a child back and I really respect them for being strong and doing what's best for their children, despite the pain it can cause.
But, even though it makes me sad - for numerous reasons - I know that we made the right decision to send her this year. Even though she missed 45 days of school, she gained a lot from the experience. And I hope that because of this year, next year will be even better. She will be older (and hopefully a little more mature). She'll already know the routine and how everything works, so hopefully she'll be able to better focus on the education piece. Plus, it was the first year for the Hearing Impaired program at this school. And it was full of trial and error and many kinks to work out. The staff learned a lot, too, so there will be some big changes for next year. Which, I am really excited about.
They are expecting six new HI students to start kindergarten next year. There were only four this year. They split the four into two different classes. One of them is moving this summer, so she won't be returning. Harlie is repeating and I know one is moving on to first grade. I'm not sure about the other one. So, there will be 7 or 8 HI students in kindergarten. They are going to have a collaborative teaching class with all HI students in one class and the rest general ed students - with one gen ed teacher and the HI teacher. I think they will also have an assistant, too, but I'm not totally sure.
I think this will be a great set-up. I think it gives them the best chance to keep up with the class. Once we pulled Harlie out of class for HI instruction, she really fell behind the class, and then incorporating her back in just wasn't an option. Honestly, she would have fallen behind anyway. She's had much less experience with language than a typical child, so of course she has way more to learn.
But I want to give her the best scenario I can, and I believe that this will be better for her. I just hope that the parents of the typical children in the class are all for it, too. If they are anything like the parents in her class this year, it will be great. All of the parents I've met (even parents from other classes) were so nice and supportive. I will certainly miss them, and the kids, next year.
Today we left school early so I could take Harlie to her cardiologist appointment. We will now be followed here for her pacemaker by Dr. G. I am very thankful that we can do this here locally and by her own doctor who already knows us so well. At these appointments, she will get an EKG and they will check the battery to her pacemaker to make sure that it has plenty of life left in it. He said her battery should last her 5-7 years. We will have more frequent appointments initially, and then they will taper off until we get close to the end of the battery life. At that point, the appointments become more frequent - and then monthly until the pacemaker indicates it only has a few months left. That gives him the notice he needs to get a battery change on the schedule (done in the OR).
Tomorrow we travel to DC for her orthopedic follow-up appointment. That will make the third day in a row that I haven't been home to do my jobs. I can guarantee you that I'm going to be missing some deadlines and Cooper.
I hope that her ortho surgeon will give her the green light to resume gymnastics. My fingers are crossed! And my eyes are closing. It is time for bed.
Thanks for reading!
Monument Avenue 10K!
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