The last week has been challenging though. We saw the GI doctor on Thursday and even though Gesina had gained the amount of weight they wanted (and went from 12 percentile to 15th percentile) all the doctor would talk about is the G-tube. He is not interested in her acid reflux issues or managing her meds for that, he is just all for the G-tube. We are going to schedule a swallow study as the thinner liquid seems to make her sound congested after a bottle and we need to find out if she is aspirating. After that, we plan to re-evaluate what we need to do next. Needless to say, I left the appointment frustrated and determined to get a new GI doctor. And then... the stomach virus hit :-(
Grandma and grandpa came to visit and got to enjoy the start of the stomach virus. Starting Saturday Gesina started throwing up 5 or more times a day. I was soaked in it and my floors have never been cleaner due to the constant wiping up of vomit. In fact, I've gone through so many t-shirts that today I'm wearing my last clean t-shirt, my free Chicago Cubs shirt... and was accused of being a Cubs fan. Never! I don't support loveable losers as a general rule. I brought her into the pediatrician's office on Tuesday and have spent the last 4 days feeding her 10 mL of formula every 10 minutes and I'm so exhausted. Between Thursday and Tuesday she had lost half a pound even with my best efforts to keep feeding her the appropriate amount of formula. By now I've completely thrown out the playbook and her ideal amounts of formula per day are forgotten. I'm lucky if she keeps down 6 ounces of formula a day. This morning she kept yogurt down and 3 ounces of formula. We are aiming for feeding her every 2 hours about 3 ounces and we'll see if our luck holds.
So, how does this episode relate to the G-tube? I've talked to her many therapists and even the daycare director who is a speech pathologist this past week. They all said something that really halted my thinking on the G-tube. They all independently said that based on their experience with Gesina and other babies like her, Gesina's development is being impacted by her nutrition and acid reflux. The G-tube can help get those two issues under control so we can focus on her motor development, stretching, etc. This fact crosses a line or standard for me. I refuse to let my daughter's development lag just because her mother is stubborn. I can't will her to eat but I can allow her to be assisted in that endeavor so we can focus on more important things. As Adrian said about this issue, with my original path, I would end up with a teenager who can eat but can't do much else. So I thought long and hard on what my reservations are about the G-tube. I don't care if Gesina is "different" as I've always liked different :-) so what I've concluded is that a G-tube represents dependency and I value independence so much that I will do anything to avoid dependency. Now that I can identify my "logic" I realize how silly it is. My 9 month old is dependent anyway! So what if she is dependent on a G-tube. And if she has to have it for life, which is highly unlikely but you never know, than she can still be independent in caring for her own G-tube. So getting a G-tube doesn't sound so bad anymore and now it's time to think about what it would do for Gesina.
A G-tube will not directly help her acid reflux or vomiting for that matter. It only directly helps her nutrition as whatever amount of nutrition/formula she does not consume during the day I can make up for with the G-tube. Indirectly, the G-tube can help with acid reflux and vomiting. How? With a G-tube I can let her refuse bottles because of acid reflux or vomiting during the day and make up the difference at night. This means less pain and more ability to focus on growing/learning/developing during the day. One thing I know about Gesina is when one thing goes wrong (seizure, acid reflux, vomiting, etc.) her abilities regress. She can quickly revert to her 3 month old self that needs to be held at all times or will scream until you give in. I need her issues that cause her to regress to be managed. I have a neurologist working on controlling her seizures, and if I let him, a GI doctor to work on her tummy issues. Once I get those two factors under control, then I can add a Physiatrist to manage her therapies and likely cerebral palsy.
And there it is... I've finally "said" it. There is a strong likelihood that Gesina has cerebral palsy. I had hoped we would dodge this diagnosis because she doesn't show signs of weakness on one side like most babies with her background. But her high muscle tone hasn't gone away and she likely has a spastic form of cerebral palsy called dystonic quadriparesis. Once I have a Physiatrist on board, I'll be able to truly diagnose her type and the severity of it. The good news is therapy makes a difference in outcomes so I'm on it. The bad news is this is another label I'll have to wrap my head around and embrace. Will she ever be able to run a 5K with me now? We still don't know but worse case? I'll roll her along with me in a wheelchair if I have to! As usual, we're down, but we're not out. She's alive, she's relatively healthy, and she's 9 months old :-)
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