Saturday, June 5, 2010

Updates and Speech

I am finally sitting down to blog. It has been a very busy week. My 3rd grader is now a 4th grader (sniff sniff) and we celebrated the end of school with our 4th annual end of the year pool party. The kids had a blast and played their hearts out. Then, we had a few friends over along with their kids, and continued the party. I'm exhausted and sunburned today, and very much looking forward to a good night sleep.

I haven't seen any seizures in Kendall during the night at all. But, as predicted, our Dr. has increased her morning Keppra dose to 3ml's and scheduled a 24 hour EEG later in the month. Hopefully everything will be all clear and we can continue doing what we're doing.
She's been sleeping so much better lately. And we are making more great progress in Speech. We followed in Holly's footsteps and got Kendall an iPad. (Thank you Nonny and Poppy for your generosity!) Caleigh has been doing such amazing things communicating with her's, that we were inspired to follow suit. I will explain our approach in a later post. I am still in the throws of programming it to have all of Kendall's items and get them in a format that she is able to touch. We have also begun prompting her more with vowel sounds. After one time through the "famous" Monkey Mouths flash cards (I know they're called something specific...but it's slipped my mind) Kendall is repeating vowel sounds after us. She's also sucking a straw, and eating pretty much every texture. Yes, that includes liquids :) So, huge improvement there. This Wednesday we are meeting with the AAC specialist, and adding her to our weekly routine. It will be a challenge this summer motivating Kamden to attend Kendall's therapies, but I'm sure some bribery will do the trick. It'll all work out...because it has to!
We had a neurologist tell us early on not to get to wrapped up in therapies to the point our family suffers. Honestly, I understand where he's coming from, and maybe we will eventually reach a point where it evens out, but right now I do have the energy, the means, and the motivation to continue pushing forward and seeking out the best possible treatments. I know the first 3 years of any child's life are critical in development, so as I would with a "normal" 2 year old, we will do whatever it takes to help her reach her fullest potential. This is my job.


Candace said...

Jocalyn, Wooo HOo on the ipad! You should check out iComm app. We got it on sale, last week for 4.99 and it is awesome! You can program anything with your own pics, songs, numbers, colors anything. We actually like it better than any we have tried yet!

Erin said...

I originally found your blog through Caleigh's (my daughter also has short gut) and I check in every now and again. I just had to post a comment to say that the picture of Kendall in the pool floatie with her sunhat is the one of the cutest things I've ever seen. What beautiful children you have!

best wishes,