Labels and services

We now have a Physiatrist that I like who seems like a doctor that will help coordinate Gesina's treatments and therapies instead of me feeling I have to coordinate it all. The good news is she is proactive on getting Gesina going with cerebral palsy treatments. We have added baclofen to the medications list (a muscle relaxer) and next week Gesina gets fitted for AFOs for both feet. An AFO is an ankle-foot orthosis, which is a plastic boot fitted specifically to Gesina's feet. The AFO will encourage her feet to grow in appropriately and not let her muscle tightness cause her feet to turn inward or anything that will further complicate her potential for movement. It was so nice to talk to an expert on CP because she filled in so many missing pieces on why Gesina responds to the world in the way she does. I feel that we finally have the doctors we need to fill the team for a little while. The bad news is Gesina finally got the diagnosis/label I've dreaded for a long time. She was diagnosed with "congenital quadriplegia". It's the worse type of CP linked with the worst outcomes, at least statistically. I know every child is different and the severity of her CP hasn't been written down yet but I can't help but have a reaction to that label. I'll come around but it just hurts the soul a bit.

In other news, Gesina has been accepted into the Medicaid program in Wisconsin! Yay to secondary insurance AND it is back dated to April 1, 2014 meaning her April hospital stay and beyond will be covered. Oh and I can now switch from early intervention PT and OT to private therapy that uses a medical model of therapy. This is great because the medical model will allow for more therapy per week AND won't consist of just telling me to work on things with Gesina. I still find that I don't have the time to do all they want me to do and I can't handle the pressure of it. Now the stress can be relieved a bit as now I have therapists for that and some of the stress is off of me. Whew. I did learn that only kids who would be institutionalized if their parents didn't take care of them get approved for the Katie Beckett waiver for medicaid. This is to encourage the families to care for their special needs children and is cheaper than institutionalizing these kids. This has scared the bajeebies out of me. My child is so severely disabled that she would be institutionalized? What happens if I die? So I'm frantically creating a "taking care of Gesina" document, looking into writing a will, and getting some life insurance ASAP. Either way, we are inching towards her first birthday and she's here. I'll keep getting her the doctors, services, and medical devices she needs but with less stress from her OT/PT stuff, I'm going to just focus on being her mom, loving her, and having more fun with her. On that note, here she is trying on daddy's glasses :-)