96 Weeks

Have you ever thought about something each day for 96 weeks straight? Well, I have.

It’s been 96 weeks since Ailbe’s last VEEG. On the last test they didn’t see hypsaeryrhmia but they did see irregular brain function as she was still having spasms then.

For those of you that don’t know what Infantile Spasms is there are several good sources on the web for general information but outcome is very dependent on underling cause and stage of development when spasms started.

I’ve been a wreck for a week or two now. As much as Ailbe has improved I’m very emotional. I had to leave a friends birthday party to go cry in my car because I just couldn’t handle the “difference” between Bee and the other kids and then again the next day when she caused an accident. When I heard Ailbe sing along to the Frozen soundtrack in the back of the car I sobbed because I imagined it would happen and it did. And every time someone asked me how old she is and I say “she just turned 4” I wonder how long I can stretch the “just turned.”

I’m so anxious about Wednesday that I think I’ve made myself ill. I have no other symptoms except nausea, shaking and extremely sore muscles. I know I’m so tense and once it’s over I will feel a sigh of relief. But then there will be the results and that’ll be another waiting period.

The VEEG is a four hour outpatient test. Ailbe has to sit still for the 27 leads to be placed. Each one takes around a minute to put on when the technician is very capable and efficient, a bad one can take twice as long. I’m hopeful that a new movie, some candy and a new book might distract her long enough to get the leads on. We’ve had to sedate her in the past but the test isn’t as accurate when sedated and since we are contemplating a med wean based on the results we need the most accurate results.

I can’t believe I just said wean. I’ve longed for the day I didn’t have to medicate my child. Do you know how difficult it is to worry that she drank every sip of her med or took all six pills for the day? How about when you find one under the chair and don’t know how long it’s been there. I just pray and pray that the day will come. But when the day does come (IF) I’ll worry every second that they’ll return because they did in the past. But she’s almost three times as long seizure free so we are beyond hopeful that she could wean successfully.

She’s had so many developmental breakthroughs and that is while her brain is heavily sedated. It’s functioning at a much slower pace because of the meds and we don’t know what would happen without the meds. Faster brain activity could be the difference between special education and general education and also the return of seizure activity. It’s hard to fathom a wean also because the neurosurgeon who told me Ailbe didn’t know she was a human being and all those other lovely things, said that meds had a 3% chance of working once spasms return and we already used our 3%. Well according to him. So needless to say, if you’re still reading, it’s a nerve wracking decision. Live in fear, or take a leap of faith knowing it’s the best option for your child’s future.

I’m scared out of my mind but for some reason I keep thinking that her time is now and that things will continue to be positive for our family and for Ailbe.

Wouldn’t that be so incredible.

“I can do anything through He who strengthens me.”💜