Sunday, March 8, 2009

A Call from the Neurologist

Well, to start off with, Kendall's seizures have been particularly nasty this weekend. They are way more frequent than they have been. That said, we are definitely wanting to try something new. The Neurologist was waiting for the Hematologist appointment to decide the next step. Late Friday afternoon, he called to give me his plan...sort of. He said if I "can be patient" this Wednesday he is meeting with his team, including the Neurosurgeons to present Kendall's case. He said he has reviewed it in detail and thinks she may be a candidate to have that part of her brain removed. I know there is a term for it, I've read it on other's blogs, etc.. like recession or hemispherectomy or something like that. Anyway, he's concerned the Factor V could cause another stroke, so he's going to talk with his team to determine the plan. I'm a little nervous about this. Shouldn't they try some other medicine before deciding to cut into her?? I'm sure all those questions will soon be answered if I can just "be patient."

Despite the seizures, Kendall has been very smiley this weekend and in great spirits. She enjoyed a visit from her Aunt Kristin on Saturday:

And we were finally able to get a family picture:

Kendall pants loves being outside. Now that the weather is starting to get warmer, I'm excited to enjoy the outside with her. ECI is ordering her a bath chair that they say we can also put on the top step of our pool! I'm sure that sounds pretty simple, but to us it's huge! I'm finally starting to feel like we can do some "normal" things with her. Even being able to push her around in the jogger, or her entertaining herself somewhat in her bouncy chair is a huge accomplishment. For us, its a big deal to not have to hold her every time she's awake! This morning she actually found her pacifier in her lap and put it in her mouth! It took her a while...but she did it! Of course, I was cheering, then she smiled and dropped it again! Oh well, baby steps!


jamie said...

oh gosh....i remember the days when we couldn't set milo down when he was does pass. now he really enjoys his swing and his stroller, or going for rides, but he wanted to be held 24/7 until he was about 10 months old.

Cindy said...

Wow lots going on! Wednesdays not that far from now, so hopefully you can get some answers and a plan! Keep up your great attitude! Loved seeing picture of Auntie Krissie (that's how I'd think of Kristin of an Aunt - although I'm sure if she ever liked it when I called her Krissie!!)
Love to all!

Reagan Leigh said...

As crazy as it sounds being a surgical candidate is actually a great thing. I would definitely do your research before deciding on a local surgeon to do it though. Dr. Chugani in Michigan (or Dr. Shields in CA) are the leading IS experts for this surgery. Jackson (look for his link on my blog) had surgery in Oct and has been seizure free ever since. I do however think you have to have already failed treatment with the big guns (ACTH and vigabatrin) before they'll consider surgery. You always want to try medications first. Imagine going through with the surgery and it NOT working! You don't want to have that over your head that you should have tried more meds first! Surgery is a last resort, but it's a good one if you have the option.

Bronx Cataldo's said...

Hello from the Bronx, NY.
Hi we are too travelling the same journey. Our Finnian is much like Kendall but older he is now 4. We are hooked up on Jude's blog we are the Bronx Cataldos. Like you say the best time is when they smile we think that too.
Ger,Finnian and the Cats in the Bronx.