Juggling update

Friday I took Annie down to the neuro-nurse to discuss weaning off of zonisimide, so that we could soon be on 3 seizure meds, instead of 4. And that's the plan--one less pill a day each week, until she's off of it--probably 6 weeks. Of course, right after we got back home from our appointment, she began with the gagging/nausea/vomiting, making me feel like maybe I should have stayed at the hospital. In fact, Bill and I were debating whether to take her back there for the rest of the day. The juggling act we had to do with keeping her hydrated, keeping the stomach contents in with zofran, (how much of this are we allowed to give per day??), trying to help clean her gut out with--well, you don't want to know this much information--it was a very interesting day.

But the good news is, Saturday the sun came up, and with it, a refreshed--if somewhat wrung out--Annie. She seemed to be so much better yesterday--and only had ONE seizure all day. The bad news is, it happened while Bill was strolling her at the mall. Sometimes we forget what her seizures look like to the rest of the world, then get a fun little reminder like yesterday. Bill was happily walking her through the mall, when Annie suddenly slumped forward. Sometimes the seizure begins with an eye-roll, so maybe that's what the lady saw first--the lady who saw Annie's seizure, and yelled out, "Oh my GAWD!", then ran up to Annie as she continued to yell, "Oh my GAWD!" Bill stopped the wheelchair, bent over to pat Annie on the back, and tried to calm the lady down: "It's okay, she had a seizure, she'll be alright, look, she's coming out of it, it's okay," while thinking: would you please lower your voice so the mall police don't come running to look at Annie too? The lady looked up at Bill, looked around at the gathering crowd, and then slowly walked away. Poor Bill. Poor Annie. And poor lady who doesn't get to live in seizure world every day.

But--let's not forget that one seizure is better than six--so thank you for your prayers, and maybe send one up for the lady at the mall.

Jean

Let's Review

A few posts ago, we discussed three things that can cause vomiting: an Addisonian crisis, (or needing more hydrocortisone), seizures, and seizure medicine. I need to add a fourth: constipation. You might want to put your fork down.

This afternoon, we were down at Annie's GP to try to figure out why she is so gaggy--this week. You know, every week it's something different. She likes to change it up--keep us guessing. Some weeks it's because she needs more hydro, some weeks it's because she's having too many seizures, some weeks it's because her medicine is making her pukey, and some weeks it's because she's constipated. This week, it's all of the above.

As soon as we walked in to the exam room, Annie threw up, just in case anyone was in doubt as to why we were there. So the doc ordered an Xray, and about 1/2 hour later, we were looking at Annie's intestines on her computer. The diagnosis was quite clear. We saw marbles, and lots of them. So don't call me this weekend, Annie & I will be busy cleaning....house. BTW, the doc's Rx included double hydrocortisone, (for my Addisonian friends who are reading this), zofran as needed, and lots of miralax and water.

She's better tonight, though, so let's change the subject. You're welcome. Anyway--at church last Sunday I was thinking again about Annie pre-brain injury, and Annie post-brain injury, and I had a mini-brainstorm. Uh-oh. Well, we know that because of the Addisonian crisis in January of '07, and subsequent brain injury, Annie lost the ability to walk, talk, and eat, as well as use her hands purposefully. But, every once in awhile there is a little glimmer of humor, or understanding in her face, or vocalizations, or expression--little moments of familiarity. It's like she's hiding in there, and someday will pop out and say, "Surprise! I was in here all the time!"

Well, it reminded me of the verse in Colossians 3 that says, "You died, and your life is now hidden with Christ in God. When Christ, who is your life, appears, then you also will appear with him in glory." Only I was thinking, Annie's life is now hidden with Christ; she is hidden with Jesus. She is in there, but obscured by this brain injury. It was actually a very comforting realization, that although she can't express herself the way she did in that last post's video, she is there, and will sing again. We just don't know when--here, or in heaven.

Meanwhile, this past week she has been having moments of clarity on the new Banzel drug, but-- we have to work on getting weaned off of some of the other meds--she's got way too many on board. So thanks for your continued prayers for her--please keep praying that the seizures will be GONE, (she's still having from 2-6 each day), and that we can safely wean off some of the seizure meds that really aren't working. And, while you're at it, please pray that we get her system lubed and running smoothly again. We have got to get past this chronic vomiting. I think Annie would thank you for your prayers, too. Bill, Andy, David, Jack, Olivia, and the nurse at the doctor's office thank you too.

Jean

Since, then, you have been raised with Christ, set your hearts on things above, where Christ is seated at the right hand of God. Set your minds on things above, not on earthly things. For you died, and your life is now hidden with Christ in God. When Christ, who is your life, appears, then you also will appear with him in glory. Colossians 3:1-4