Wednesday, February 27, 2008

Neuro Day

(These pics were taken just for fun the other day when A & J were "snuggling" in the rocker)

Yesterday (Tuesday) was Abby's Neuro Day. We saw both docs taking care of her neurological system.

First thing in the am we saw her neurologist. Abby's VNS settings are at the goal rate for now, so we will watch, wait, and see how she does over the next 2 months. We discussed her seizure activity, specifically pertaining to her dramatic increase in grand mals after receiving sedation recently. Thinking back over the past 2 times she got sedation for surgery/procedures she had a huge increase in seizures that night and following day. Hmm. Something to consider for the future, although there isn't much anyone can do about it except be prepared for it to happen again.

We also talked about the prolonged seizures she experiences during times of illness. He said it is concerning but there isn't much we can do about them either. She's already on 3 seizure meds plus the new VNS device! As she grows it is expected that her seizure activity could change... possibly for the worse. There is always the option of increasing the dose of one med or trying new kinds.

Because she has epilepsy her body is already prone to manifest stress through seizures. Stress includes any physical strain such as fever, fatigue, anxiety etc. So if we could somehow make her life stress-free we'd be good!

After that appointment we headed to Birmingham to see her neurosurgeon for our yearly check up. No CT needed this time because we had already sent a copy of a previous scan she got back in the fall. This made our afternoon at Children's a lot shorter. The visit itself went fine. He asked how she seemed to be doing and what new things she has learned. We talked more about her seizures and her implant.
After the discussions were over, he said those beautiful words I love to hear "well, see you next year!"

Josiah was a champ during our time at the hospital! (Not so much in the car though-I'm getting good at tossing him goodies from the drivers' seat!)
He's getting so much easier to take places with Abby. For one thing he WALKS all by himself, and he can hold his own drink and eat his own snacks. The biggest thing I see coming in handy is his ability to obey me... all that practicing at home pays off! The entire time we waited in the lobby (about 30 min) he sat next to me on the chairs drinking his milk and chatting about the other kids he noticed. I was relieved for the minimal contact of germy surfaces, and maybe a little bit proud of him too!

Going to Children's is always a combination of sadness, reality and gratefulness. As usual yesterday we saw so many kids with severe health needs. I noticed one baby in particular. She was about 6 months old and tethered to a ventilator, apnea monitor and feeding pump. It took two ladies to just walk her down the hall. One to hold her and carry her vent on their back, the other to push the double stroller laden with countless bags of equipment trailing behind. Josiah and I sat and watched as her mother rocked her and loved on her.

It's always in those moments I feel so humbled and grateful for the mercies God has granted me. As I hugged Abby on my lap, I said a silent prayer for the hearts of her parents.
I noticed them looking at us from across the room and we exchanged understanding, motherly smiles.

As things tend to go at our house this winter season, Abby is sick again today. She has another fever. I guess this means more time at home, more watching Signing Time and less adult human contact. Oh well... Spring is coming soon, right?

PS. Next up, pictures of our fun visit from the Younger Girls! (although they're not really "younger") he he. That was for you Chris!