Wednesday, September 24, 2008

Emily's new ride

Back in the very beginning of June we went to the adaptive seating clinic at CHOP to see about getting some gear for Emily that would be supportive and helpful for getting her around. Her inability to hold her head or support any of her own weight makes moving her very difficult. We were able to buy a reclining forward facing carseat for her to keep her as upright as possible while still being comfortable at Babies R Us. But, other adaptive seating devices are harder to come by.

At the clinic, the physical therapist recommended the KidKart, a wheelchair/stroller with a full head support system, side supports, etc., to keep her in a nicely supported upright position. She can only ride in the strollers we have now if she is almost completely reclined. Since she is already on her back so much, it's important to get her sitting when we can.

They also recommended a bath chair which is like a reclining lounge chair with a mesh lining to use in the bathtub. It is extremely difficult bathing her, so much so that I can only sponge bathe her because I can't support her in the tub and wash her at the same time. I've tried a few different ways, but none that really worked well.

Now the KidKart and bath chair had to be ordered and accepted by our insurance company so the process took almost 3 months. But, they were approved and we went to the clinic last week to get fitted and pick them up!

The KidKart is awesome and she can sit almost upright without the head strap for quite a while, 1-2 hours. We went to the circus last weekend and she sat in it the whole time and never fussed once. Plus, she was awake the whole time too!! She did her OT session sitting in it as well. Brenna, Carter, and Drew can play with her while she is in it too, and we don't have to worry about them climbing on her like when she's on the floor.

I can't even begin to tell you how happy I am to have the bath chair! I gave her a shower in it for the first time and she liked it and I could wash her thoroughly without any trouble. It sits up high on a base, so I was able to use the shower head for rinsing. I was so relieved I cried.

Here is Emily in her new ride

Playing with Drew and the spinner from her light box (for vision therapy)
At the circus


Kate Smith said...

Thank god for the special equipment and insurance! What kind of bath chair did Emily get? We got Kasey a Columbia chair (before I was bathing him in the sink) and a special tomato chair for scooting around the house! My little boy will be 2 in October (hard to swallow sniff-sniff)and has been through so much!! You and your family has my best wishes take care
Kate Smith

Anonymous said...

It is so wonderful to see Emily sitting up in her chair and being played with by her big brother!!

Love, Mom and Dad xoxoxo

the schirano triplets said...

she looks quite comfy in her new ride, i am so happy to hear you were finally able to get it!

DESJ and Company said...

She looks SO happy!



Tabatha said...

I'm so glad to see you getting the equipment you need. I am a lurker but would you consider doing an updated post on her medical condition and what they expect in the future for her?

Aimee said...

Tabatha -
Hi! Thanks for leaving a comment. I checked out your blog, your kids are just adorable! I think Tegan would have a blast with C and B!! As for a medical update, I've really been meaning to get to that. In fact, I asked my husband how much he payed you to type that, because he's been asking me to post an update for a while now. It's coming . . .I promise!! :)

Julia said...

she's a doll!!!

Nicole said...

Hooray Emily! The Kidcart is AMAZING! She's looks so grown up:)

We love you guys, Aunt Nicole, Uncle Joe & Sierra

Kim said...

So happy for you and Emily - I can hear the relief in your post!

Heather said...

She looks so grown-up now! Love that you were able to get something she needed so much and I'm glad it brings you some relief!

KRISTA said...

Way to go, Em! Aimee--I love that you cried some happy tears. How great that must've felt to have her awake for long--now that she is in a more upright position, she doesn't want to miss a thing, right? You're definitly the best mommy on earth! You're an inspiration to me!