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 :-)

10 months and 1 day

Gesina is 10 months and one day old today. She's had a string of good days (with smiles) and I don't want to jinx it, but I think the stomach bug is over! She is a healthy 16 pounds 12 ounces, feels "sturdy" lately with more head control, and is finally TOLERATING TUMMY TIME!!! Yay! It only took 10 months for this and when I say tolerating, I mean some days she'll stay on her tummy for an hour and others 5 minutes. But she is consistently allowing it to happen... lately. She even smiled in reaction to MY voice this morning and not just Adrian's voice or her iPad. The little monster is turning into a daddy's girl but given time, she'll realize her momma's pretty neat too!

The good news is that Gesina does NOT have infantile spasms :-) We are so happy to hear that! The EEG was abnormal showing spikes and at times, rhythmic spikes that are like a precursor to a seizure. But during the whole 72 hours, she did not have a seizure. The neurologist is changing her meds because our goal has always been to prevent seizures, not just treat them when they occur. Her new med is Lamictal and it takes 8 weeks to get her ramped up to the right dose. One side effect we have to watch for is a deadly rash... no big deal, just a deadly rash!!! But if there is one doctor on Team Gesina that I trust implicitly, it's her neurologist. He saved her life when she was born so he's used to these life and death decisions and since he was right last time...

Last week I got a second opinion on the g-tube from a new GI doctor that works out of an office close to my home a few days a week. She also works in the same Milwaukee office as the current GI but comes recommended by Gesina's therapists. She was much better about my concerns and reassured me that Gesina needs the g-tube to ensure her limited energy is spent on developing and not on eating. Honestly, I'm still not convinced she needs it as she has chubby cheeks now and is doing so well with food. BUT, if there is any chance, no matter how small, that getting a g-tube will help her advance her development in this small 3-year window when her brain is its most plastic, then I have to try. She is a slow eater (like her momma, grandma, and great-grandma) so that does take energy. Also, I've read that kids with CP need more calories because they burn so much energy with the constantly tight muscles. Those things added together, I figure I'll get the g-tube and may or may not need it. But at least I can say I've done everything I can to help her develop as best she can. Blah. But that happens, with an overnight hospital stay (and a couch for momma), at the end of the month. Oh, and in a way I get the best of both worlds. The previous GI doc is doing the surgery because he is the first pediatric gastroenterologist in eastern Wisconsin and taught everyone in his office how to do this surgery. So I figure, he's the best. But after the surgery I'm switching to the new GI doctor who works in the same practice but has a better "bedside manner." My relationship with the GI doctor and his/her nutritionist is long term and vital so I have to be able to work with them comfortably. I have a pretty stringent selection system for Team Gesina and seem to be going through doctors relatively quickly ;-)

Next up, we meet the only Physiatrist that works in my town a few days a week. She comes recommended by my therapist (who has 10 kids and a few have CP) but our first appointment is in Milwaukee. I'm hoping this will be it for doctors needed for Team Gesina for a while. I'm looking forward to a break from doctors visits and switching out doctors/therapists! I just hope all these med changes and surgery don't mess up Gesina's streak of good moods and tummy time.