Thursday, July 2, 2009

A Day to Remember

Today marks our D-Day. One year ago to the hour, we found out our precious baby was going to have a lifetime of challenges.





But today I'm not going to think about that.





Instead I will remember this day as a day of possibilities. We received two thing today that have given us hope.





First, this morning our pediatric wheelchair was delivered and fitted for Kendall. We got a Kid Cart and it is fabulous. Kendall loves it. (even though when this picture was taken she wasn't in the best mood.) This will make trips to the grocery store, mall, park, zoo, enjoyable for our whole family. No more adjusting her every 2 minutes. We are just thrilled.




Then, this afternoon in our mailbox was our WaterWay Babies neck float. I ordered this thing yesterday and received it today!!! I first heard about it a few days ago from my friend Holly on Calleigh's blog. I thought it looked really interesting. Then after watching many videos on YouTube with the product I knew Kendall would love it! (by the way, Kamden came in my office when I was looking at the videos. He has since discovered You Tube and today I caught him watching a video on putting a lava lamp in the microwave!?! Guess its time to activate those parental controls.) Anyway, I had no idea how Kendall would react...see for yourself.


video

Today now marks new beginnings. Again, not the road we planned on traveling, but an adventure just the same. "True hope dwells on the possible."

10 comments:

K D said...

That has to be the most adorable video ever. And what a good job she is doing kicking. She is a little fish!

Holly said...

Oh, what a good day! That video made me tear up...she's so excited.

Yippy for new beginnings!

Lorrie said...

Wow...that video was the most awesome thing I've ever seen. It brought tears to my eyes. Thank you so much for sharing it with us :)

therextras said...

Her smile in that video - priceless!

A KK is a good thing!

Barbara

Caroline said...

Hi from the UK. I have just subscribed to your blog. It was suggested to me by Jenn (Jude's Mummy). My baby daughter has recently been diagnosed with epilepsy and is now on Vigabatrin- which Kendall is too?

Well, I thought I should read her story, and I did so with goosebumps over my skin and my hand over my mouth...so many similarities. My daugher was originally diagnose with ventriculomegaly, she is microcephalic, she has very poor eye control, for the first 3 months we were oblivious to anything being 'wrong', until she started having infantile seizures.
My blog is in the very early staged (started yesterday-lol), but feel free to have a look. 'Honkeyplonk'.

Kendall is beautiful, as is your blog!

Funnily enough, my daughter's name is.................................................................................................Hope!


Warmest wishes to you and your family
Caroline Xxx

Jacolyn said...

Love the video!! I think she likes swimming...she looks so happy.

Cjengo said...

Very cute. I am ordering stuff for Jude today.....a bath chair, etc. Wish me luck. I have to find a place I can order from. Maybe you or Cayleighs mom know?

jamie said...

that video is so CUTE!! i think we need one of those neck floats too...very cool!

Anonymous said...

Dear Kendall and Kamden and Jocalyn,

Yea!! Kendall likes her neck float and the new freedom it gives her to be more independent in the water. I loved watching the video. Holly pointed it out to me. She was moving very well in the water - a lot, I'd say. But I don't know how this compares to how much she moves otherwise. I'd love it if you would take a short video of her on a pallet lying on her back...just for comparison.

I did wonder -- she got very pensive and quiet and her mood changed about 2/3 throught the video - can you tell me why? Did she get tired? Have a mini seizure? simply notice that her big brother wasn't at her side? Did you notice it? I'm just curious.

One thing parents really report to me that they like is the added benefit of sibling connection when they are more eye-to-eye. I certainly saw this in your video. So special and touching. Kamden is one special big brother and growing to be a man who will have incredible gifts and traits.

Thank you again for sharing this with all of us.

Nancy
President, WaterWayBabies

jocalyn said...

Nancy...
Yes, I did notice the "lull" Kendall had during the video...It could be a few things. She had been in the water for about 10 minutes so she may have just been plain tired.
But, more than likely, she had a seizure. Her Infantile Spasms are usually a quick jerk of her head and then rapid eyes movements. She spaces out quite often during everything. Eating, playing, riding in her stroller. We have to say her name several times and she evenutally comes back with a smile. All part of her seizures, I guess.
On her back she just lays there. Even in a bouncy chair she doesn't really move her limbs much. Being in the water is definitely night and day for Kendall. We move her all the time, but she rarely initiates it on her own. And she still doesn't roll, though she's starting to reach!
Thanks so much for the float! We are really enjoying it!