Wordless Wednesday Tatiana's First Day of Kindergarten

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Tatiana's New Stroller

My five year old daughter, Tatiana, is multiply disabled and developmentally delayed. She has Cerebral Palsy and is totally blind among a lot of other things. She has a beautiful spirit and loves giving out her hugs and kisses. She is an inspiration to me because of just how much love and happiness she has to give despite all the terrible things that have happened to her.

We are still working on getting her mobile on her own, but for now she is wheelchair and stroller bound. She has grown so much that we just got new Ankle Foot Orthotics (AFOs) for her from Shriners on the 7th and not long ago got her wheelchair redone and adjusted to her with a new seat, seat back, and lateral supports. Today she just got a new Axiom 1.5 Dreamer Design Mobility Push Chair jogging stroller in navy blue with optional swivel wheel Axis kit, all-weather cover, and tire pump. It is the Cadillac of strollers, especially for special needs kids! We used her old jogging stroller a lot more than her wheelchair because of easier fold-ability. The Axiom seems to have a lot more parts to fold or unfold but now that I know how to fold and unfold it seems pretty straight forward so we will opt to take this with us on trips more than the wheelchair for now. She has a lot of growing room in it because it can hold up to 100 pounds and as you can see we need to adjust the foot wells to the highest position too.

Speaking of trips and her growing...we have been looking for a wheelchair accessible bus that will suit our needs and wants. Tatiana is growing and I am petite so this is making it more and more difficult for me to lift her from her stroller or wheelchair into her car seat in our van. Since we found out that our 2006 van cannot be equipped with a ramp because it is too old a body style and it is still possible that our family might grow larger, even though I just had a miscarriage, we are instead looking into an accessible bus. We need one that can accommodate our growing family...so room for 6 plus (preferably 8 or more seats plus a wheelchair spot but not more than 15 seats because then we would have to get a CDL license). We would like it to have a co-pilot's seat so that I can sit by my husband when he is driving. We think that diesel is the way to go for a bus because of less wear and tear on the engine. Once we get it we are thinking about fitting it with a tow package so that we can tow a trailer, boat, RV, etc. My husband wants to get fog lights and maybe a snow plow for the front of it in the winter months. We were also wanting to get dolphins airbrushed on the sides :) My parents think we are hippies.

A Welcome Home and a Visit to Tatiana

My husband came home last night from a long stay in Orlando, Florida because of a family emergency (I will not be going into that...so, don't ask). Anyway, I was glad he was home. I missed him so much while he was away!! He had me order Red Lobster and he picked it up on his way home from the airport. It was delicious! We settled in for the night and watched episodes of Lost and Heroes that we had missed.

Today he treated all of us (minus one, Tatiana) to a breakfast at the Pancake House. Double yum!! Then he drove us to Portland to see Tatiana. She has been staying at the Providence Center for Medically Fragile Children since April 6, 2009. I couldn't believe it when I walked in to see her. She had gotten a very cute haircut since the last time I saw her and lost two of her bottom baby teeth. I gave her lots of loves, kisses, and hugs and after about two hours visiting we had to leave. I was sad to go without her again. I will be so glad when she is stable enough to come back home. I miss her terribly and I have missed a month roughly of her growing up. She has also missed stuff at home: Easter 2009, Teela's first Birthday, etc. I wish I could be there with her like I was almost every hospital stay she had, but then I would be missing the same stuff with my other kids and this is supposed to be for my respite. It breaks my heart that I had to leave her, but I know she is in good hands! Hopefully she can come home soon.

My Daughter

Here is a picture of my daughter, Tatiana, in front of my garden in her new wheelchair. We bought this for her on Ebay and got it fitted to her and new parts made and at Shriners Hospital and Care Medical. It turned out wonderfully! It is the best thing for a little bit of offroading :)

and since our house is super small we like it best for inside as well, although sometimes it is hard to maneuver in tight places. My husband also built a small concrete ramp up to our front door for her so the house would be more wheelchair accessible.