Although my daughter can walk short distances with her butterfly-covered pink AFOs, long distances just aren't in the cards for her right now. She tires easily, and she's just getting too big to carry around like a baby. Besides, she's not a baby--she'll be 4 in less than two months, so it's really time for me to stop acting like she's an infant.
Last year, we got her a pediatric wheelchair for Christmas. The thing is huge compared to her runt-sized frame, but it has a seat belt, it rolls, and it does the job. We use it for long days (like our 3-hour visit to Shriners Children's Hospital on Tuesday), sporting events, trips to the mall or other events that require a lot of walking, and for travel. (There is NO WAY I'm carrying this child through an airport while lugging around a diaper bag and carry-on. It's just not happening.) The wheelchair has been great. It has saved us a world of trouble and made our last few trips to San Francisco and Oklahoma a breeze. Unfortunately, the doctors told me on Tuesday that it simply will not do for Ceili. She needs a smaller, more lightweight wheelchair with a custom seat.
...A custom seat. For a wheelchair. I didn't even know such things existed! She needs something small enough to cradle her tiny body that will support her where her lack of a spine (okay, sacral agenesis and caudal regression) cannot. Easy! ...Or so I thought.
With the current wheelchair, we just shopped around online and picked from the three or so options for pediatric wheelchairs. Now there's a prescription involved, and insurance, and a medical device company that has to work with her physical therapist... It's insane!
The first place I found that carries wheelchairs in our area very politely told me that they do not contract with our insurance, and they referred me to the only company that does. Company B told me that they don't do custom anything, and I have to call back Company A and have them get special authorization from my insurance company if I want anything other than a wheelchair exactly like the one my daughter already uses. So I call the first company back, and they're very helpful (this was a long and tedious process, but everyone was really nice along the way, which was a pleasant change from the norm in our medical misadventures). After an hour of failed fax attempts, the prescription finally made it into their office, and I was told that someone from their company would be in contact with the physical therapist at Ceili's preschool to set up a time to discuss Ceili's wheelchair needs and to fit her for a seat.
At this point, I'm allegedly out of the process. All I do is sit back and wait while the company talks to my insurance company, meets with the PT, designs and builds my daughter's wheelchair, and then sends me the chair and the bill. Typing it out in one nice little paragraph really undervalues the struggle I went through to get to this point in the game. I was on the phone or hovering over a fax machine for nearly four solid hours yesterday, desperate to get the ball rolling before the holiday hit and everyone went home for the long weekend. It was crazy stressful and made my head spin.... But so do most things involving Ceili and doctors, to be fair.
So what have we learned so far about Ceili without me having to write up her medical history for you? She's visually impaired (legally blind due to bilateral colobomas of the iris, retina, and optic nerves); she has caudal regression, sacral agenesis, and scoliosis; she's small for her age; she uses assistive devices for mobility (AFOs and a wheelchair); she has cognitive delays. That's just the tip of the iceberg, really... But this blog isn't about listing all the things that make my child atypical, so I won't throw any more at you. We'll just continue to let things creep up naturally in my posts.