Another day, another theory

Before I begin with another edition from the chronicles of Annie-land, I need to remind you that we do have a life beyond medicine, poop, and hydrocortisone. Sometimes it's not much more of a life, but I felt like I needed to put that out there, in case you have been thinking I'm too one-dimensional. Like, for instance, on the way to take Annie to school yesterday, I stopped to put gas in the van, and when I heard the clunk of the nozzle shutting off, I pulled the nozzle out of the gas tank. Unfortunately, the nozzle that I heard shut off was in the truck next to mine. Consequently, when I pulled the nozzle out of my gas tank, gasoline sprayed all over my jeans, my hands, my shoes, the concrete, pretty much everything within a 12 ft radius of the van. The guy with the truck next to me pretended not to notice. And, at that moment, I was thinking about something other than medicine, poop, and hydrocortisone. Unfortunately, I can't share with you what I was thinking, because you would be convinced that I had lost my salvation. I briefly considered going back home to change, but we were late, and summer school is only an hour and a half long, so I got back in the van and rolled down the windows. Driving up to Annie's school on the freeway, I was thinking about the probability of getting cancer from the carcinogenic fumes rising from my clothing, and what the likelihood would be of my van blowing up in the event of a collision. So I do think of other things besides medicine, poop and hydrocortisone.

Now, about my other theory: The "Test" from the last post about Annie needing more hydro is only partially correct. My latest (and last) idea is that there is a link between Addison's, brain injury, seizures, slow motility, throwing up, and needing extra hydrocortisone. It's actually a circle. On any given day, we could be camped on one of those issues. Some days, there are two things the demand our attention. Some days all of them. The common thread is that there is never a clear cause and effect, and there is never a clear solution. It is more like degrees of managing of never-ending cycle of symptoms, medicines, and side-effects. So that's it. My theory is that there is no solution--only managing.

And even as Annie struggles with these things, her cognitive abilities continue to improve. She turns the pages of the little board books I read to her, and she seems to prefer books that are a little more advanced than the "Brown Bear" story I've been reading to her for months. The fact that she's getting tired of stuff and wants something new is a great sign. Her speech teacher at school has noticed this too, so we'll be making adjustments next year to keep challenging her cognitively.

Now if we could just teach her mom how to pump gas, we'll be in business.

Jean

Test

One of the reasons I blog is so that anyone who has a kid with Addison's, or a seizure disorder, or a brain injury, or blond hair and blue eyes--can read about our struggles, compare their situation to ours and hopefully get some helpful information. With that in mind, let me share another update:

Yesterday Annie had only two detectable seizures--a huge improvement from the day before. But she was still on the brink of vomiting all day, and in fact, threw up twice. Because she had no other symptoms (like a fever, cold, etc.) to make me think she needed more hydrocortisone--the medicine for her Addison's--I thought that the nausea was caused by Banzel, the new medicine for her seizures.

And more background--the last few days she's been getting up around 4 AM gagging herself. So every morning with her regular medicines and regular dose of hydrocortisone, we had been treating her with Zofran (an anti-nausea drug). But, in the last few days, even Zofran hasn't worked to keep her nausea at bay.

Now, for those of you with Addison's, you know that sometimes when you're low on hydrocortisone, you need more so you can sleep better. It's counterintuitive, because for the rest of us, steroids can keep us up all night. But for people with Addison's, the right dose of the steroid hydrocortisone can actually help them sleep. So, last night, I thought, I'll give her a little more hydrocortisone at bedtime, and see if it helps her not wake up at 4 AM, gagging herself. Voila--here it is 7 AM, and she's still asleep.

Now although I have no idea why she might need more hydrocortisone, because, again, she has no outward symptoms of illness, I'm going to give her double dose today and see if: a. It helps her stop being so nauseated and gaggy, and b. Helps eliminate any seizure activity.

Thanks again for checking in with us this morning, and again, thanks to those of you who pray for us. It helps so much.

Jean

Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul. Psalm 143:8

Three steps back...

A week or so ago I was feeling overwhelmed at all the stuff I needed to do to push Annie along, because she was on a wave of feeling good. That wave is gone. We're back to square one, or minus one, as she is struggling again with nausea and vomiting. Annie had multiple seizures today, and threw up 3 times.

I think we're going to have to wean down on the Banzel, which I think is causing the vomiting...and I'm not sure what we'll try next. Something, I'm sure. But it is the nature of Lennox-Gastaut seizures to elude easy solutions. We were hoping that this new drug, which specifically targets her type of seizures, would work. It's discouraging that the side effect of nausea/vomiting is so severe in Annie that we may need to discontinue the drug.

Chronic illness is the pits.

Jean

Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. Proverbs 3:5-6

Riding the Range

Annie had her first official hippotherapy yesterday. Her therapist was impressed that she was sitting up tall for the whole half hour, and thankfully, didn't have any seizures while she was on the horse. Yippeeyiyokayea. Now, I did remember to bring the video camera, and as soon as I can get my producer to put it up here, you'll be able to see it too.

I do have a few updates for you:

1. We went to the dentist last Monday. She showed me some tricks to get the toothbrush into Annie's mouth, and to brush her teeth while I'm in there. Most of the ideas require 3 people to accomplish. But she did say I was doing a good job. Yeah, me and Olivia. ;)

2. We went to the neurodevelopmental clinic today to discuss ideas on how to break Annie of the annoying habit of intentionally gagging herself. They all involve "redirecting" Annie away from the behavior.

3. We're going to the nephrology clinic tomorrow to find out why Annie has protein and glucose in her "output."

4. The seizures were down to one or two a day until today, when she had about 6. I wish I could tell you why she had so many, but I don't know. We're off the zonisimide completely, and probably will go up again on the Banzel, if we can do it without causing too much nausea.

5. Annie also started summer school this week. And did I mention that it's David's 18th birthday today?

I remind myself often that many people in the medical profession do these things all day for a living--and aren't I lucky that I can do it and get a load of laundry done at the same time?

Annie's asleep now. Time to rest so I can be ready for another day.

Jean

And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 2 Corinthians 12:9

The Day After

We survived another 4th of July. I say that, not because I'm ungrateful for living in the US of A, because I truly am, but because the people who live in my neighborhood have an insatiable need for blowing things up until all hours of the night. They started around 4 PM Thursday with the legal pyrotechnics, but by 7 PM last night, the bombs from the reservation came out. At 8 PM, the firetruck came up the street. How it was able to navigate through the yellow smoke, is a mystery. I put Annie to bed around 8:30, and she promptly fell asleep, even though the pictures were dropping off her bedroom walls. At about 10 PM, the smell of sulphur started closing off my bronchials, so I shut the windows. At 1 AM, the last explosive went off. I know, I should count myself lucky--you lit off your last one at 1:30.

Next year, I'm praying for rain.

Jean

Augmentative Communication 2

Before I go out in the backyard to harvest the crop of weeds I'm growing, I thought I'd share something that Uncle Jeff shared with me: www.brainfingers.com. "Brain Fingers" is a hands-free device that enables severely disabled people access a computer. The "success stories" link on their website talks about a teacher who always wanted to be the next "Annie Sullivan," the woman who helped Helen Keller learn to communicate via sign language. "Well," I thought when I read that, "maybe she'd like to teach a little 6 year old girl named Annie Sullivan who needs to learn to communicate?" This teacher took a number of students who tested at a 12-18 month functional age, taught them to use this gadget, and then tested them after using the thing twice a week for 8 weeks. Many of the students then tested out a 5-6 year functional age. Pretty impressive, I think.

So take a look at that link when you have a minute--I'm going to talk to the school about it, and maybe even get it to use at home. It looks interesting. And, if any of you know of anyone who has used it, let me know.

Better go work on those weeds while Annie is napping.

Augmentative Communication Evaluation

This morning, Olivia & I packed up Annie and went to an Augmentative Communication Evaluation down at Children's. Marci gave us some good ideas to help get us out of the rut of doing all the initiating in communicating with Annie, and her being a passive recipient. She taught us how to wait until Annie looks at us before we talk, and wait until she reaches to turn the page of a book, before we help her turn it. She also recommended a device called "Go-talk" to help her make choices, such as what book to read. We also looked at a touch-screen computer game that I think would be very motivating for her.

It's interesting how in the first year after her brain injury, I decided to "narrarate" the day in an effort to drag her out of her fog, but now, my constant chit-chat actually de-motivates her from initiating any communication. In other words, I have made a habit of spoon-feeding her information, and now I have to retrain myself in order to retrain her!!

Marci noted that Annie has "yes" and "no" down pretty good, but needs practice in using those words immediately, accurately and appropriately. When she does, then I can add in more complicated questions such as, "Do you want to go to get a bath, read a story, or go to bed?" Then repeat, "Do you want to get a bath?" (yes, no), "...read a story?" (yes, no), "...or go to bed?" (yes, no). That way, we can eventually make her communication more sophisticated and purposeful.

I really appreciate Miss Claudia, Annie's regular speech therapist, who also came to the evaluation, so that we can work together every week to help put these things into practice. It seems that for the last few months, Annie's progress has been hindered by her seizures, and maybe now, if she is moving into a more "up" trajectory, we can actually implement some of these ideas. Unfortunately, she did have one seizure right before the evaluation, and then another in the middle of it. She's had four today total, so that's a bit disconcerting.

She actually only had 2 full days of no seizures this past week, and has been having one or two a day--and again, I really don't know what is causing them. But we go up again on the Banzel tonight, and down on the Zonisimide tonight, so we'll see. These seizures are a huge barrier to her progress, though, so I do wish God would simply heal her of them. And I'll keep asking Him to.

Sometimes I wish I had speech, OT, & PT therapists who lived in my house. Annie just has so many deficits--using her hands purposefully, walking, eating, talking, blah, blah, blah--it is overwhelming for me... When she is in a medical valley and all I do is manage her 15 medicines, and keep track of her seizures, it's almost easier. But when she starts going up, I am overwhelmed at the enormity of helping her relearn to walk, (or simply scoot!), talk, eat, and use her hands. Oh, and I forgot to mention--her teeth. I need an inhouse dentist to brush her teeth every morning, because again, I'm just not getting the job done. And I have to say it again--it's even more frustrating because I KNOW God can heal her.

Jean

Have mercy on me, O Lord, for I am weak; O Lord, heal me, for my bones are troubled; my soul also is greatly troubled; But You, O Lord, how long? Psalm 6:2-3