Wednesday, July 29, 2009

A bit better.

I miss Emily! She is at her dads, and I know she is having a great time, but I miss her. We recorded her session on the news this past weekend, and I keep watching it, so I can hear her voice. I think I am rather sappy!! Hearing her voice makes me smile though, and I know Jude misses her too. I asked him where his "sissy" was, and he kept looking around the room. I believe he knows who we are as individuals.

Tonight when I got home from work I was still feeling ill. I had religiously administered the eye drops every four hours as instructed. I began to feel some relief, but not enough to declare myself well. When I got home Jude had only eaten 9 1/2 ounces the entire day, and I came to the conclusion that he wasn't feel well either. I knew I didn't feel like eating, so why should we assume he does? I made him a bottle, then took Jude from his grandmother, and calmly sat down with him on the couch. I put the bottle in his mouth, and at first he refused to suck, simply letting the milk flow in his mouth without response. Suddenly he seemed to realize what was going on, and he latched on to the bottle. He did not stop until the entire 6 ounces were gone, and I even got him to take 2 more ounces. You could tell he was very hungry, but had been hesitant in eating. So is this just a reaction because his mom was home? I don't think so. It's just timing with Jude, and I happened to catch him at the right moment. Later in the evening I got him to take another 8 ounces with rice. After he took his last bottle I watched with desperation as Jude suffered another long seizure. I sighed with exhaust and relinquished my fight for the night. I held Jude close, but understood there was nothing I could do. We simply waited for the seizures reign of terror to end.

So will Jude ever be seizure free? I don't know, but I hope so. Whether through stem cell therapy, surgery, or Gods will, we hope he will indeed find a way to be seizure free. Throughout our journey of the special needs world we have always hoped for some normalcy. When we begin to achieve that feeling we are always shot down by seizures. I have claimed before that seizures wear demons horns, and I still believe that to be true. They seem to find a way to morph into a different being, and escape the hold of the medications.

So we confirmed that Scottish Rite would also like to receive Emily's Smile Boxes, and we need your help. We are about $100 away from her goal to be able to now fill 175 boxes for Christmas. Please visit If you know anyone that can donate even $5, it will help us.

I am off to take a bath, and wash my itchy eyes. I plan on patting Jude, thinking of Em, and hugging my husband good night. I will dream of seizure free days, relaxful evenings, and the Dallas Cowboys winning the super bowl! NIGHT!


Candace said...

so sorry for the tough seizures,they are the hardest thing for me to deal with, too. On the upside, know anyone who is lactating?? LOL? Breastmilk is a known cure for Pinkeye! It's true! Hope you are cheared up a little!

Midwest Mommy said...

Oh my heart breaks when I read about his seizures. I pray too that one day all babies will be seizure free.

andrea said...

bad seizure, go away!!! i am sorry.