So with all the election drama and unexpected work drama, I'm a little behind on my updates. We've been busy getting Gesina in school and smoothing out the transition for the new members of Team Gesina. With her going to school, she now has 2 physical therapists, 2 occupational therapists, 3 speech therapists, one new vision teacher, and two new school teachers. Let's also not forget an additional set of classmates! That makes Team Gesina 19 strong and counting; and that's not counting her classmates or family members. I often say I'm the quarterback on her team and I now have more players on the team than are allowed on the field during a football game. So far things are running smoothly and that is in no small part due to Gesina's string of good moods and all-around happy personality. She has been taking her new schedule like a champ. The school is amazed at her tolerance for the new environment and she's been carrying that good cheer to daycare as well. My brave little warrior gets up and to daycare at 8:30 am, gets medicated and fed and is on the bus to school around 11:30. She gets back to daycare by 3:30 and I pick her up at 6pm. This is a big change for her and me. This is a Monday through Thursday schedule with swim therapy on Friday mornings then all day daycare. I have time to work now but I miss her. I'm sure we'll both adjust but I'm used to seeing her during the week a lot more. Here is a pic from Gesina's first day of school getting a lift from the bus.
As for her stem cells, the changes I saw in the beginning have stuck around. She is even allowing her hands to TOUCH EACH OTHER at rest! Before stem cells her hands were tightly fisted and never even near each other. Now, she still tucks her thumb (there are ways I'll be investing in to counter this issue), but her hands are moving and tend to cross each others path every now and then. She's been playing with her hand toys with more vigor and does a "roll swing" with her body where she puts all she's got into winding up and smacking her toys with her hands. They go flying and get locked up in her hands and she smiles away. I do believe my little girl is starting to understand cause and effect :-) She's still doing tummy time and using her arms to lift her self up briefly. She's getting longer and harder to "steer" on her exercise ball but won't do tummy time on the floor. She will do tummy time draped across my abdomen though. So I spend a lot of time on the weekends lying on the floor looking at this beautiful face. I hate that my 42 year old back hurts a bit too quickly and that my eyes struggle to see that beauty up close, but I'm a lucky woman either way!
She is still vocalizing but nothing new beyond a few longer vocalizations. I had read that one side effect of her one remaining seizure med (zonisamide) is speech problems. I see her neurologist on Thursday so we'll see what happens there. He has been hinting at weaning but I have been dodging that decision so far. He doesn't know about the stem cells so I'm interested in what he says and wants to do. Her zonisamide has helped her EEGs to be less abnormal. So part of me thinks let's keep it going to get these EEGs as close to normal as possible. This would be in the hopes that normal EEGs would equal less likely to have seizures. BUT, I don't know if EEGs really work like that. It may be that normal EEGs are not a useful goal and that it may just be better for her to wean off the med sooner rather than later. The scientist in me wants another EEG to see if it's improved even more since the last one in April. But what would that tell me? Is it from the zonisamide, the stem cells, or because I've upped her fish oil dosage (2200 mg a day). Either way, I'm interested in what transpires on Thursday.
And last but not least, Gesina did well with her Go Baby Go car! She accelerates with a switch (big red button) using her head. She goes into extension a lot (stiffening her body) so her team decided to use that to their advantage. She has the car in her room and she's used it once at home. Her room is big because she has the master bedroom, but it's still not big enough to get a racetrack going for very long. I'll just have to wait for spring. Here she is, figuring it out!
I'll give updates on the Neuro appointment, graduation from the NICU clinic, and Christmas in Michigan soon! I also have to start thinking of getting her out of the crib. She's getting a little long and she's a bit of a wild sleeper. And what about a pillow? Can kids with spastic quad cerebral palsy, who have minimal use of her hands and arms, use a pillow safely? Always something new to research!
