It happened again last night. This time, bigger and stronger than before. The scary part (for me) is that she is on anti-seizure meds.

Lena began having seizures when she was extremely ill in September. All doctors and medical staff and I all agreed that they were most likely a manifestation of her illness and the amount her brain had been irritated due to multiple surgeries in such a short period of time. When we left the hospital we all assumed that we would be able to wean her off of the meds in a short period of time and all would be fine. Well what is that saying about assuming. Yeah I know it you don’t have to remind me.

I October we saw the neurologist and we decided that she was doing well and that we would begin the weaning process. All was going great. Then she had her shunt blockage and wound up in hospital again. Well by the time you factored in the vomiting and the two days of NPO (nothing to eat) because of surgery. I decided that she hadn’t had it this long and all was good so I stopped giving it to her. BAD IDEA.

Shortly after that wise decision on my part she had what we know now was another seizure. At that time the Dr. didn’t think it was so we continued to hold her meds. Late in December, the Monday before Christmas she had another episode identical to the one at the beginning of the month. This time the Dr. decided it must have been a seizure. So we put her back on her meds at the dose she was on and moved forward. I called the neurologists office to make sure he was okay with the plan and he was.

The good news, we made it through the holidays without any problems. Lena was happy and healthy and great. The bad news, she has had two seizures in the last week and based on last nights events I think there was another one in December we just didn’t realized it at the time.

Lena’s seizures are typically "absence" seizures, she kind of just goes "out of it" for a short while. She stares and is non responsive. The scary part is that she desats with all her seizures (turns "blue") for a short time and when she comes out of it she falls into a deep sleep right away, almost immediately. Last night was not typical, she had actual convulsions that arched her back and propelled her out of her rocking chair. She looked so scared. The rest was typical. I called the neurologist right away and we are increasing her meds and we will regroup in a couple weeks, sooner if it happens again, and change her meds to something that can be used long term as her current meds can not. Please pray that we have an uneventful couple of weeks. My poor baby has been through so much in the last few months, she deserves to be trouble free for awhile.

The only people that truly understand what its like to live with a sick and/or disabled child is some one who is living one themselves. The pain, guilt, remorse and grieving are always there. Some times it is worse than others, some times you don’t notice it at all, but it is always there, lurking in the shadows, waiting for the next opportunity to rise to the surface. Coping goes well some times and some times it does not. The triggers are always different. It can be a big event like an illness of medical event, sometimes its as simple as watching your friend’s children run and play with other children, some times all you have to do is think about what could have been. The tears come randomly.

To have a preemie is one thing, to have a micro preemie is a whole different ball game. In fact they are not even in the same league. These children suffer and struggle just to stay alive and then when they do they grow up fighting and struggling to be "normal". Most adults could not endure what they are endured before their first birthday, let alone the therapy etc that follows. Too many people take life for granted. If my girls have taught me anything it is to not take anything for granted, rejoice at the simple things, and smile whenever you can it brightens not only your day but everyone who sees it and feels it.    

I love my girls and I wouldn’t trade them for anything in the world but when they hurt, suffer or struggle for any reason I would give anything to take their place, take away their pain and make their life easier. I am so sorry girls.