See Christian and Lola's ISR video!

Friday, February 21, 2014

An Update at Long Last!

I can't believe it has been so long since my last blog post. After I lost the domain name for my other blog at Momma Candy, I had to step away from blogging for a second. Not only that but the beginning of this year was like shooting a cannon ball out of a cannon. Non stop!

And we moved!

Yes, again. Yes, it's been less than a year. There are many reasons we moved again but the main one was that we used to rent and now we own! The last house we were in had stairs and levels and more stairs. So we quickly found out that living in a house with stairs was absolutely ridiculous. Know how many stairs the new house has? Zero.

Christian also has his own room now. No more sharing with sister, as if either of them cared. I can't wait to share pictures of everything. But right now we're still putting things up on the walls and clearing out the last few boxes. This is home and we love it.

Christian is doing okay. The insurance he has enrolled him in a clinic that we'd heard of that other children with special needs attended. I've heard of these centralized programs where you go visit for the whole day and you're seen by several different doctors in the same day. Kind of like a one stop shop. When we first got out of the hospital I just started making appointments. I didn't wait around for anything. This created our own network of doctors we handpicked and a scheduled with appointments I scheduled when we needed them - neurology, orthopedics, pediatrician, additional therapies. But I always wished for a place that was a little more inclusive, where other children with special needs attended, with specialists, maybe a physiatrist. This is the place! They also hold wheelchair clinics and a CP clinic that might be helpful.

However, I'm already seeing the downside. They make all my appointments. I forget them all and I don't get upset about it because, frankly, I hate appointments. I feel like I've lost a little control and that bothers me. I purposely shelter us a little so that we can do our own thing. He's a little boy and we're a family. Not a medical patient and a science experiment.

My first impression of this clinic was - Wow! It really was built for children like Christian. And there were other children like Christian there. So this is where they had all been hiding out! It's what I had envisioned and seen from friends in big cities with their children.

On the other hand, I felt a little like we were under observation. Of course, that first appointment is a getting-to-know-you appointment. But we spoke with a new pediatrician (not sure why, I have no intention of changing ours), we spoke with a nutritionist who was whispered to behind a closed door that we were doing the blended diet. Luckily, she seemed supportive. But suggestive. Have you tried this? Have you tried that? We're good. Thanks.

We also talked to a social worker, which is routine for the first appointment, I guess, but it felt weird.

So I'm giving this clinic, centralized, one stop shop thing a go. We'll see how it turns out.

Christian has been doing well in school, working on communication, and he's super tight with his fabulous aid and teacher who would move mountains for him.

I am, however, concerned about his seizures. For some reason they've become stronger and he has even lost his breath a few times. That's kind of a deal breaker for me. The only thing is that it's paired with congestion and phlegm that don't seem to be tied to any kind of sickness. Probably just allergies. So I'm wondering if I should wait to see if it passes or call the neuro tomorrow. I think I'm going to finally call. This isn't passing and I have no idea why. I'm afraid he's going to tell us we need another EEG. For what? To find out he's having seizures? We already know that. Do we increase meds? Great. Whatever it is we have to figure out something. There are seizures we can live with and these aren't those.

Other than that, Christian is plugging along. He didn't get to go to school for Valentines Day because of the seizures and congestion but we did put together our annual 3E Love Valentines and dropped them off for his class. When he came back to school he had a backpack of Valentines and candy!

It's warm here now and we're experiencing some beautiful weather here in Arizona. But back when it was cold Christian could really rock a beanie. Dude.

Christian also got an award at the beginning of the year and we love celebrating this. Sister is so proud.

Despite all the seizure nonsense, we can still be thankful that Christian is doing okay in most other ways. He is still "talking," he still smiles, and he is so loved. 

I've got more to write about like more about our move, what Christian got for Christmas (and my annual gift guide for children with special needs), and some other things on my mind. Promise it won't be another month until I update. See you soon!

1 comment:

h said...

Thanks for that update! I love those Valentines!

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