Tuesday, February 9, 2010

Happy Happy Birthday

What a bad bad blogger I am. Almost 2 months without an update...shame on me!

It's so much harder to be inspired to write when things are going well, funnily enough. Life has been busy but very very good. Julia is doing well and is still seizure free. What a blessing it is to be able to say that. We saw her local neurologist about a month ago and she wanted to start weaning her off Vigabatrin. I would love nothing more than to see what happens when she comes off medication, but we were concerned that perhaps it was too soon after surgery. I emailed Dr. Chugani for an opinion and he felt the same way, that it was a bit too soon to make any med changes. So we have a 24 hour EEG set for March 4th here and then we will be headed to Detroit for an office visit with Dr. C on March 8th.
Despite my reluctance to make any med changes without Dr. C's approval, I decided to meet both doctors in the middle and reduce only her morning dose. So she went from 750mg twice a day to 500mg in the morning and 750mg in the evening. Not a huge change...but boy, what a huge difference. Her attention is noticeably better, her speech is noticeable improved...it's amazing. Part of this may be to continued healing and improvements post surgery, but it's hard not to draw the conclusion that the lowered meds may have something to do with it. At any rate it makes us very excited for the future if and when she is able to entirely come off medication. We don't have any real reason to think she can't come off the meds eventually, but you just never know.

Our schedule is crazy with physical, occupational and speech therapy each twice a week. Her physical therapist told me last week that Julia had met all of the original goals set that were surgery-related. She no longer is showing any right-sided weakness when it comes to walking, climbing, etc. So now we are going to work on meeting age appropriate goals...she is still clumsy, still cannot jump with two feet, stand on one foot, etc. It was very exciting to know that she has come so far in a relatively short period of time.

We also celebrated a big milestone this month...on February 1st, Julia turned 4 years old. We had a wonderful birthday party in San Antonio with our family.

And yes...we had ponies. They're pretty easy to get in Texas, as you may imagine. Julia didn't want to ride at first, which was a little disappointing but not entirely surprising. I rode the larger white pony in the background since the thrill of the ponies wore off kind of quickly for the other kids and we had over a half hour left. Once she saw me, she got very excited ("mommy's horsey!") and wanted to ride too. After that we couldn't get her off! She cried when it was time to say goodbye and only the promise of cake cheered her up.
Happy birthday to the sweetest girl I know.


amanda said...

How in the world did she get to be 4 already? She's such a cutie. Happy Birthday, Julia!

Sophie's Story by Elaine said...

That is such a precious picture of her with her birthday crown. Sophie would LOVE to have a pony party. We are trying to get her into equine therapy but the wait list is so long...ugh.

So wonderful to read that she is doing so well. Good luck with the EEG and your visit up to Detroit.

JSmith5780 said...

Happy belated Birthday Julia!

Amanda said...

My little Benji just had a right functional hemispherectomy three weeks ago. He has his next EEG on March 4 also! At that time, the neurologist may suggest weaning off meds. His blog: benjithebean.blogspot.com

ust wanted to introduce myself as another hemi mom. Julia looks like a sweet little girl! Congrats!