It's been forever since I posted. It has been a long 10 months, full of hospitalizations, scares, and surgery. I won't go into the blow by blow because it is long, depressing and, frankly, too emotionally raw for me. Part of the reason I haven't posted here until now, is that I just wasn't ready to talk. But here are the girls these days.
So here is my week:
Monday: Start out morning by attending a meeting at one of the agencies that covers Lily's care. Sit on a therapy bench with a pediatrician, an orthopedic surgeon, a caseworker, Lily's occupational therapist, and the director of the clinic in a semicircle around us, firing questions. All polite reasonable questions, but daunting nonetheless. I try to answer said questions in a coherent manner while Lily pulls her hair, throws herself in front of my face repeatedly, pulls my hair, scratches my face, and attempts to make herself vomit. Walk out with approval for continued services and suggestion to start focusing more on oral-motor skills again.
Tuesday- See orthopedic surgeon. Am told Lily's left hip is still not forming properly. This means osteotomies (aka bone grafts) on the horizon. Start to question whether this is a worthwhile risk considering her likely life span is short. Must choose to risk my daughter's life by sedating her and putting her through a massively invasive surgery along with the requisite recovery time or risk not treating thus causing early onset arthritis that, if she lives long enough, will mean a full hip replacement later on. Doctor sees enough improvement in the right hip that nothing more should be necessary there, at least. Says we'll check back in 6 months. I postpone the worry over the quality of life question until then.
Wednesday- Spend the morning with Lily's physical therapist discussing her AFOs (aka ankle braces) order and which wheel chair will work best for her. Must think about wheel chair lasting for the next 3-5 years and what features we'll need. Wonder how anyone can plan 3-5 years in the future for a 22 month old?
Thursday- Spend the morning with her occupational therapist. Discuss Lily's sensory processing issues. This means she pulls her hair, bites and scratches herself, makes herself vomit, or grinds her teeth anytime she has sensory overload. What constitutes sensory overload? A wet diaper, when someone isn't paying constant attention to her, boredom, pain, leaving the house. Basically, almost any time she isn't getting exactly what she wants. It is her means of communication. Prescription? A deep pressure program which involves me brushing her down, then doing a series of joint compression moves, and, if at all possible, swinging her. Every 1.5 hours. Throughout the entire day. For at least, 5-6 weeks. This on top of her feedings every three hours that require 15 minutes of stomach venting (don't ask) before and after every feeding. The feedings last about 1 hour and 45 minutes. I'll let you do the math.
And this is actually a fairly quiet week for us. I left out all the other activities and just tried to highlight the ones that stressed me out the most. Writing it out actually makes me feel like I accomplished something this week, though. In spite of having a mostly wrecked house, being so far behind on paperwork, and forget about my social life or hobbies.
On the other hand, she has laughed a lot this week. And she's rolling like crazy and starting to scoot backwards more and more. She imitates the pitch of noises around her. She's doing things for the first time and I hope some small part of that is because of all we do for her.
