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‘Buddy’ had a seizure last Friday. It wasn’t his worst, and it was his first in a long time. I know that. I am thankful for that. I also know there are many kiddos who have bigger struggles. I feel for them, and I greatly appreciate every gain ‘Buddy’ makes. But after 2 years it was a harsh reminder. I try hard not to think too much about the future. But the future is part of hope and hope is needed to survive, so it is a delicate balance. Friday we were once again reminded that there are no promises. So we live in the moment and do the best we can to find all the joy we can while working our @sses off to try to shore up the hope we were not promised.

The seizure was 10 min long. It stopped 6 min after being given Diastat. His diaphragm also seized so he was not breathing. He turned quite blue. I was home alone. I did all the right stuff, but was not as efficient as I used to be when this happened 2-3 times a day most days. Thank God it has not been 2-3 times a day…but you see, that is my fear. Everyone says one seizure in 2 years is pretty good. Focus on all he is doing, all he can do. I am, but it is hard work, because the other side of that is “Do you remember his history? Do you remember how quickly he can tank? Do you remember when he was so tired from seizing that he could not hold his head in order to keep his airway open?...We do. And if that happens again…think of all he could lose.” That is what brings me to tears, that and the not knowing why it happened.

We have had a hard month. Nutrica, the company that makes his formula, changed their recipe. We were days away from starting to wean ‘Buddy’ from the diet when we had to switch to the new formula. It was three days after Christmas, and the new formula had a completely different flavor profile. ‘Buddy’ would have none of it. (I will go into all this deeper on another post.) So we have been struggling to get him eating solid foods, homemade Keto Egg Nog, anything. I have been running around town trading new Ketocal, for old with parents whose keto-kids have feeding tubes. With all that craziness, his Keto Levels were still normal. Even though we started reducing a month ago, his levels were still normal. I almost wish they weren’t. If they were off because I made a mistake, there would be something I could fix. But there isn’t.

One of the incredibly hard things about having a medically complicated child is the powerlessness. What do you do when even the doctors say “I don’t know. Let’s hope it doesn’t happen again, but let us know if it does.” I have had to wrestle with my son’s mortality before. I am very clear that his time is out of my control. I can live with that because I know I have done everything in my power to make his time here, fun, full of love and the best it could possibly be, but I have to feel like I am doing Something, or I start to lose my mind. So I create plan Bs.

My plan B this time is CBD, medical marijuana. I am finding out everything I can about how it works, how we get it, where and what kind to get, because if our house of cards starts to fall I want a stronger glue to put it back together. And our house could fall. We have 6-9 months of formula available. I am trying to find more. During the seizure ‘Buddy’ bit his tongue and does not want to eat. We have to start over again trying solid foods. This will take more formula. The doctors want to slow his wean to 12 months instead of 9. This will take more formula. So even if there are no more seizures we Have to get ‘Buddy’ eating solid foods or he will run out of food and possible need a Gtube. If he has more seizures, we will definitely run out of formula and probably need a Gtube.

I am often told to think positively, not to dwell on the negative, but I have to run through these scenarios so that I am ready for them. I run the best case. I run the worst case. Then I create contingency plans. Only then can I breathe. For me to find hope, I need a plan. It is a delicate balance. There are no promises. So we live in the moment and do the best we can to find all the joy we can while working our @sses off to try to shore up the hope we were not promised.

(Thankfully, he is a very strong boy and is recovering well from this seizure.)




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