I'll start this post by saying, we will be seeking a "second" opinion from my usual Neurologist. With that said, we went into Children's of Wisconsin for a g-tube and came home with a few years to live.
We went to get Gesina's g-tube and thankfully, that went well. However, in our hospital room a few hours later Gesina started having weird episodes that she had actually started having the day before. The episodes the day before surgery were odd enough that I had gotten video and was going to keep an eye on it. Knowing Gesina had been slightly under medicated for her seizures (weaning off one med, ramping up another) I planned to keep an eye on it. Well, in her recovery room she had the episodes but more severe and more often. She would startle with her arms, take in a loud quick breath, then cry like she was terrified. This would happen quite a few times over the next few hours. We were quickly transferred to neurology for another video EEG. They came back with the news that it's not infantile spasms, which I was happy about, until they told me what they do think she has... which is worse than infantile spasms.
The neurologist at CHW believes Gesina has Ohtahara Syndrome, which is very rare and characterized by progressively worsening, difficult to control seizures with profound and severe mental and physical disability. It is my understanding that those with this syndrome usually die at about 2 years of age. With luck controlling the seizures and loving care, she may live to approach the double digits in age but she will not develop much more than she has.
I'm in such a state of shock that while I had an initial wave of emotion at the hospital after the doctors left, I'm now just functioning on autopilot. I've accepted that I'm just going to cry whenever the emotions hit me. On a cognitive level, I know that this changes everything. My whole plan or play book on what it will be like to be Gesina's mom is going to be thrown out the window. Tummy time? "F" that. Worrying about whether or not her legs are perfectly straight for when, 30 years from now, they figure out how to "fix" CP issues with gene therapy? Not my concern. Worrying about Gesina depending too much on the g-tube and that she will have it "forever", who cares. If she hates eating, we use the g-tube. We live for today because we are not promised tomorrow. Spending holidays at the hospital because "she won't remember her first Halloween anyway" doesn't cut it anymore. We are living every moment up to the best of our ability. I don't get to be a mom for very long, so I have to fit as much joy and love into these days as I can. Gesina doesn't get to live long, so she will experience love, joy, beauty, and all that our life has to offer her. She will not spend every waking moment "trying" to regain "normal" abilities. That isn't in the cards so we are not going to force it. We will spend every waking moment enjoying what we have. So every one one note, come December 5th, we will be having the best, most ridiculous tiara-wearing birthday party I can manage in my mental state. We will celebrate me being 40 (on December 3rd) and Gesina being 1 and not because we are sad or in mourning, but because I made it to 40 and she made it to 1. This is really no small feat. I promise you I will cry, which is why I need to have as many friends there as I can. I don't ask for help, but I need it now. I need help keeping my spirits up as I focus on the joy of life while I have Gesina. I'll also need help in the years to come and when I lose Gesina. I'm not sure I'll recover from this but because I'm no longer concerned about the future, I'll not worry about that until it happens.
Send positive thoughts our way as I try to go through the steps of mourning as quickly as possible because my little Gesina monster deserves better. I'll let you all know what my regular neurologist says and you never know, maybe this will just be one of those times a doctor freaked out for no reason. But I'm not going to be counting on that. It doesn't hurt to live each day like it's your last anyway.
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