Thursday, November 26, 2009

A lot of thanks to give

We couldn't be more grateful to have Alex home for her 1st appreciable Thanksgiving. Especially considering how much the child loves food (not unlike her parents). We've had a great day cooking & hanging out with our family from Tulsa (via video chat).

Nothing like a kitchen filled with the scents of Thanksgiving

Alex, on vchat with her Tulsa Grandparents

2 great-lookin' turkeys

Clockwise fm bottom left: mashed pots, giblet gravy, yams, dressing, and green bean casserole (center)

Gobble, gobble

So we fed Alex her normal lunch, plus a bottle, then sat down to an early t-giving dinner. Even though she had just eaten (a lot), she kept whining & making puppy-dog eyes until we fed her from our plates. Welcome to the gluttonous American holiday we all have come to know & love so dearly.

In fact, I think I may go for round 2 right now :)

Happy Thanksgiving!

Saturday, November 14, 2009

New equipment to help Alex stand

It's been a busy two weeks since we last posted. I came down with a cold right after Halloween that stuck around for a while, and of course Alex came down with it too. We are both doing much better now and Alex managed to fight the bug off all by herself! This is a first, and definitely a good sign. When dealing with SB and her other chronic health care issues, we are often told, "let's just wait and see what happens." It's been a waiting game since we were first told about Alex's SB so I guess we've learned to accept this way of life and patiently wait for answers. It seems like we are constantly trying new meds or adjusting doses and still working on the right drug cocktail.

As you can see from the pics, Alex got a stander. From her chest down, her body is supported allowing for weight bearing on her lower extremities and feet while in a standing position. She's in the stander for about 20 minutes twice a day and doing well. She works so hard holding her head up and playing with her toys simultaneously and fatigues pretty easily. We will slowly work her up to being in the stander twice a day for an hour.

The stander is actually really nice and we got it from a local non-profit founded by a couple who has a child with disabilities. As their child grew out of her first wheelchair they realized that there wasn't an organization out there that existed to help find a new home for such equipment so they created one. They basically rehab equipment that has been donated and usually outgrown by the owner and then sell it for a fraction of the price to families like ours. Our stander would normally cost about $2500 and is not covered by insurance, yet we got it for $200. Medicaid usually kicks in and helps pay for DME (durable medical equipment) but we unfortunately are on a 3-5 year waiting list to get on it. I'm not going to get on a soap box about health care, but we are happy to have a great resource in town that will help Alex be more independent.

We hope all is well with everyone and send our love.

Sunday, November 1, 2009

Happy Halloween

Our little lady bug had a great Halloween this year. Nothing over the top and no candy but she did enjoy getting out of the house for awhile last night. She tagged along in her stroller as her older cousins went house to house trick or treating.