Sunday, March 16, 2008

Dreading Monday

Tomorrow is the five-year anniversary of the ultrasound that told us that we were expecting a little boy who would have spina bifida. I count that as the worst day of my life. It changed everything.

We wanted a boy so badly. DH was quite an athlete in high school. He wanted a little boy to follow in his footsteps. And I wanted that for him. Upon that ultrasound, that all changed. We hoped that he wouldn't end up with hydrocephalus while he was in the womb because that would cause brain damage. We hoped that someday he'd walk. We hoped that the nerves wouldn't be too badly damaged during the c-section that I'd have to have.

We lived for 4-1/2 months on that hope and went for weekly or bi-weekly ultrasounds. I'd get sick before each one.

I wouldn't give my boy up for anything in the world, but I'd sure heal him if I could. I hate that I watch him struggle with everything. Walking is a struggle. Talking was a struggle. He has difficulties with the right side of his body. He wants to draw a heart and can't. He's currently unable to write letters, although he can recognize them. He has a seizure disorder. I hate that when we get together with other kids, many times he sits with us because we're afraid that he'll get run over since he primarily gets around by scooting.

And tomorrow, on the five year anniversary of "the" ultrasound, I take him to spina bifida clinic. He'll have an eeg to make sure things are ok, since he's had four seizures since January 15. I had to keep him up until 10 pm and I have to get him up at 5 am and keep him awake until they start the eeg at 11 am. The last time they did an eeg was February of 2004. I remember this distinctly because the leads for the eeg somehow gave him an infection in his scalp and he ended up back in the hospital to have surgery to drain the infection. I don't even think this is necessary. They finally listened to me and increased the dose of his anti-seizure medication. Since they increased the medication...not a single seizure. The last time the med was increased was in September of 2006! He's grown a lot since then!

I always hate these appointments because there's always something that they want changed or improved, but this one I'm truly dreading. I don't want him to have an eeg. I don't want them to tell me how his right side is weak (Yeah, I know it is. And if Dr. Leland Albright hadn't nicked that blood vessel, I'm betting Bub wouldn't have the trouble he does).

Thankfully we only go to spina bifida clinic twice a year. The rest of the year, we deal with his disabilities the best we can. Twice a year, the focus is on his disabilites. The focus is on seizures, right-side weakness, his bladder, his hips, and his shunts. The rest of the year the focus is on Bub. Twice a year, the focus is on Bub, the boy with spina bifida.

Compounding my dread is the fact that the route that we've taken to Children's Hospital for what feels like 7000 times, is under construction. I'll be taking a detour. AND the fact that he needs to stay awake for the 1 hr travel time. Thankfully my sister Pat is going with me. She'll help Bub stay awake and help me stay sane.

The only good points about the trip in to Childrens...I get a whole day to spend with my Bubby and they have awesome chocolate milkshakes.

Prayers for a good appointment would be much appreciated.


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