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.
8 comments:
What a strong, beautiful little girl! Just goes to show that The Lord is helping his girl get stonger every day!
Love the pics and love my precious angel. She is doing fantastic.
Love,
Nana Carol
Very cool! She looks like such a big girl and she looks so happy!
~Auntie Natalie
YEAH ALEX!!! You look so happy in your stander! Zach got his stander two weeks ago, and we are working on building up his time in it as well. Does that non-profit have any other equipment available? We're a bit blown away at the costs associated with Zach's new equipment and looking for any help we can get! Congratulations to Alex, and we're so happy to see her doing so well!
Looks like Alex is loving her stander...and way to go fighting off the cold all by herself!!!
Love the darling hair-do, those sweet as honey smiles and that outfit sure looks cute on her too! It was great getting together for lunch when Cat's grandma and I were in Denver. What an awesome piece of equipment - thank you Jesus for such a deal! Love & Prayers-
She is so super cute! Love her smiles, and love those arm rolls!
My baby was born prematurely, and had to stay in the NICU for 30 days. Lung issues. So I understand "house lockdown" issue. The hard winter was last winter for us. Nicole, please have in place a great support system. I am sure you do, but hopefully there are people you trust who can watch Alex while you take some time for yourself. VERY important. Book Club, Bible study, dates with hubby. I didn't have this, and got depressed. Please take care of yourself. :)
that's so fantastic, looks like she SO enjoys the new position! and bravo for her fighting her way back from the cold.
good point from 'porsche', sounds like wise words for both of you
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