Gesina's one year anniversary from being discharged from the NICU has come and gone (January 27th). To mark the day we did exactly what I said I wouldn't do after her nightmarish Halloween... She had doctors appointments all day. The day started with her vomiting her whole feeding in her carseat. After frantically hosing her and the car seat down, off we went to Milwaukee to see her Physiatrist (Cerebral Palsy doctor). Her CP doctor and therapists have decided it's time to start giving Gesina botox injections... yep, you read that correctly. She had botox injected into both biceps and her hamstrings. The theory behind it is here. I helped hold her down but the needle was pretty thin so she didn't completely lose it. Next, I whisked her off to get her PEG tube switched to a g-tube "button". I had read that this was a rather quick procedure so I wasn't too worried that Gesina hadn't eaten yet and I didn't want to feed her and THEN have the hole in her stomach leak while we changed the button. But alas, the training session lasted about an hour and a half. I kept jumping ahead of the nurse doing the training and she kept slowing me down. After the training, when she found out I was a professor, she finally realized why I kept jumping ahead. She had a script and a set pace and she was going to keep to it! Finally after the training, it was time to get Gesina's PEG tube out... they essentially "rip" it out! Imagine pulling a grape with a tube attached through a whole in your stomach the width of a straw. Boy did she scream! She was essentially inconsolable for about an hour afterwards. We went to radiology to ensure the placement is correct and headed home.
At home I rushed to give her acetaminophen, tube feed her and attempted to get her to nap... then she vomited up her formula. By the end of the day, she had vomited up four formula feedings. We are currently on a solids only diet as she can't keep liquids down but she has been a champ with eating by spoon. Regardless of the pain and suffering she experienced on her anniversary day, she was still smiley and in a pretty good mood.
Since then, Gesina is doing well. She had an ear infection and a cough that won't go away. The cough is what makes her vomit liquids so we really have kept to an all solids diet. She is doing so well that I'm just going with it. Even now, nearly a week later, I'll try to give her a slow overnight feeding and she'll vomit it half the time. Guess we only need her tube right now for medicine!
Regarding the botox, Gesina seems to have more head and neck control. I didn't expect this but it is nice! It's not like she's ready to sit in a cart at the grocery store or anything, but it is an improvement. She also tolerated tummy time last night for 45 minutes! I've tried to "show her" how to crawl by helping her coordinate her movements and taking some of the weight for her and I think that motivated her for a while. She even smiled once while on her tummy! The effects of the botox last about 3 months then they inject her again. I'm not sure what she can accomplish while on the botox but it has to be better than what she would accomplish without it.
Her next appointment is with Neurology. We haven't seen seizure activity in over a month so I'm hoping we can continue our lucky streak. Gesina has been babbling a little more and I THINK she may be starting to babble in response to a person talking to her. I may be fooling myself but I'm hopeful. So in all, I still cope best when I expect the worst and hope for the best. This way, I have the opportunity to be pleasantly surprised every now and then :-)
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