See Christian and Lola's ISR video!

Tuesday, May 11, 2010

Trial and Error

We had quite the morning!

Our whole team came for a visit. This includes Christian's Physical Therapist, Occupational/Feeding Therapist, Vision Therapist, and Early Intervention Coordinator.

It wasn't time for our review of goals and meds and schedules and doctors and stuff that's really kind of monotonous and lacks in productivity on our end, at least.

"The team" got together in one place at one time really just to compare notes and feed off each other. They picked a great day, too, because Christian started out super uncooperative. He was stuck to the left and wasn't budging. I'm sure that was tons of fun for the PT and vision therapist. Christian wasn't really participating and having a hard time bringing his eyes out of their very comfortable position on the left.

Then I finally remembered something I read about another mom patching or covering a strong eye to strengthen the weaker one. So I mentioned it. The PT covered his weaker eye, which is Christian's right. And it worked. He started moving his weaker eye and actually started participating. Then he started moving his head over and out of it's position to the left. The PT switched eyes and Christian started looking to the right, the far right. Finally!  Some participation from this stubborn boy. And you know what...he hasn't stopped looking around since.

Just a few other updates:

I mentioned in my last post about how I wasn't as confident with Vigabatrin as I initially had been. Well, it's because Christian's jerks returned. Not any stronger, but just as frequent as they had been while on Keppra. So that's a bummer. All the great stuff that happened the first week turned back to same old Christian. Which, minus the seizures, isn't that bad. I mean with no tone, he had less movement and awareness. So he's now moving around again and hitting toys. So, of course, Christian is reacting differently than expected. I'm not upset, just puzzled. It is nice to see him moving his arms again so not all bad. I talked to the neuro and he suggested increasing the meds. So we'll try that and see what happens. It's a give and take, always. Trial and error. More drugs, less tone. Less drugs, more tone but more action and awareness. We'll see. You know I'll keep you posted! ;-)

We also started back at HBOT yesterday. And NO CRYING!!!! There were a few whimpers in protest today but they were consolable. That's the difference. A month ago he was crying, inconsolably, through the entire hour and change in that chamber. But now, so far, it's all good! Yay! It's good, no, great news because I really believe it is so beneficial for him.

Hmmm, what else can I tell you...oh yeah, I gave myself a gift for Mother's Day! Take a look! It's just for me and I felt it was becoming more and more necessary for the good of my sanity. It's just in it's baby stages so stay tuned for changes.

And last, but not least....babies in their jammies. Matching pajamas, no less. Oh yeah, I'm that kind of mommy.

Lola showing off her karate chops on her brother.
"Can both of you look at Mommy at the same time, please?"

"I'm gonna punch her if you don't stop taking my picture."

The closest I'll get to both of them looking at the camera at the same time. Momentous.


NuthinLikeGatorMama said...

They are both growing so much!!!
I'm so Blessed to know you, and thank you for sharing your life with us via the blog!!

Lindsey said...

HA HA! I love that second to last picture! He looks Ticked!

Hang in there. The seizures are a battle. We did the Keto diet and did good for like 6 weeks and BAM... they came back the second we stepped into Hbot. Then we were 6 weeks seizure free another time and they came back. SO FRUSTRATING!!!!!! I understand.

Christian looks like he is trying to smile in that last picture! I LOVE IT!!!!!!!!

Alicia said...

Sorry the Vigabatrin is not working like it was. It is good to hear that you are not upset, but you do have the right to be. Just so ya know.

Great, another blog to follow! ;-) No, really, I love it! I am going to follow you there too!

Happy late Mother's Day! Sorry, I have been a real slacker since the weekend!

Keep up the good work, friend.

Catherine said...

Have you seen this post from Samuels mom?

Seems vitamin D has helped his seizures - take a read!

Look for this post - New Things with Samuel…
May 7, 2010 | Blogroll

ShaunaQ said...

Alicia - I know, all this world needs is another blog. LOL! I'm not mad about the Vigabatrin because I didn't place all my bets on it. It's just a trial and I'd be happy if it worked, but not surprised if it didn't. Just a feeling. You are NOT a slacker. Happy Mother's Day to you!

Catherine - I have kept up with Samuel's posts and I give Christian extra Vit D but Samuel is on a lot more so I'm wondering exactly how much we would increase to. Nobody seems to be able to answer because they (doctors) don't make money off of vitamins, they make money off of scripts.

Wow, that was a little soapboxy. Sorry about that! But thanks for the suggestion!

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