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

Jesus Loves Me . . .

I hesitate to do this to you, but sometimes it's good to reminisce. Here is a video of Annie from 2006 when she was about three years old, singing one of her favorite songs.

Goodnight Moon

Annie had a busy day today, starting with an oral/motor therapy at school with Miss Karen, who tried to interest her in a taste of chocolate pudding. Unfortunately, today Annie didn't want to be in the same room as the chocolate pudding, much less have any of it near her mouth. I don't know if it was the sight of the chocolate pudding or the smell of the chocolate pudding, but she gagged until the chocolate pudding was removed. Probably the new meds in her system are making her a little dizzy, nauseous, and woozy. And the reason I know this is she has thrown up every evening around 5 or so ever since we started on them.

Anyway, this afternoon after school, we went to see Miss Claudia, her speech therapist. We sang "Old MacDonald" while Annie chose, or looked at, the corresponding laminated animal picture on the flannel board. After we sang about the cow, the duck and the sheep for awhile, she got tired of the game and her eyes began to glaze over. However, she perked up again when we began reading the book, "Goodnight Moon." It's her new favorite. She likes the old woman who whispers, "Hushhhhhhh." Reminds her of me, no doubt--Bill is always telling me I sound like I have a leak.

This evening after cleaning Annie up, (remember she threw up around 5?), and giving her Zofran and the redose of the meds she deposited on the carpet, Andy treated Bill & I to a night out--he watched Annie with David & Olivia's help, while we went down to a Mariner game. Don't ask me who won--we left at the end of the 4th inning when we could no longer hear the announcer over the loud-talking drunks sitting in front of us. But the drive home along the Alaskan Way viaduct was gorgeous--the Seattle skyline on one side, the Sound and sunset on the other.

Hushhhh,

Jean

"Goodnight stars, goodnight air, goodnight noises everywhere."
— Margaret Wise Brown

Road trip

Yesterday, Olivia & I packed Annie up in the van and drove to Portland to bring Andy home from school for the summer. But before we got too far down the road, we made a pit stop to see Annie's neurologist for a regularly scheduled check-up. It was nice to surprise him with an alert and happy Annie, and to have Miss Pam--my favorite neuro/mito nurse assist him at our appointment.

He had some good news for us: there's a new seizure med in town, Banzel, that is specifically effective against drop seizures, which is the kind Annie has. So the plan is to wean up on that, and if it shows to be helpful for Annie, we'll begin weaning off of the Zonisimide that she's on, which is cognitively blunting. Eventually, we may be able to also wean her off of the Keppra, and just have the Lamictal/Banzel combo. And, yes, we do run a pharmacy at our house.

So what kind of Annie do you think we'll have if we can get her off of some seizure meds that fog up her thinking? I remember that we put her on the Zonisimide in May of 2007, right when it seemed like she was beginning to talk after the brain injury. Wouldn't that be cool if getting off of it helped her put her thoughts together enough to say, "I love you MOMMY"??? Just wondering...

Anyway--it's good to have Andy back under our roof, and nice to have sunshine out the window this morning. We have lots to be thankful for and now, something more to look forward to.

Jean

It is good to give thanks to the LORD, and to sing praises to Your name, O Most High; To declare Your lovingkindness in the morning, and Your faithfulness every night. Psalm 92:1-2

Epilepsy article

I ran across this as I was searching for info on the vagus nerve stimulator: http://health.nytimes.com/ref/health/healthguide/esn-epilepsy-ess.html

It's a story about a young girl with epilepsy, and her family's struggle to find the right combo of medicine to treat it. So much of it I can relate to--I thought it might shed some light on what families do in trying to get rid of the seizures!

Quick update

I thought I'd give you a quick update because Annie has taken a leap in the right direction! Since about Saturday, she has really perked up--the droopiness, drooling, lethargy, and seizures are almost gone. Today she only had 2 seizures--both in the morning--and wow, has she been chatty and demanding. What a huge change from a week ago.

I had her in to get her VNS ramped up last week--the neuro nurse increased the power and also the timing, so that it is firing every 3 minutes instead of every 5. We also slightly decreased one of her seizure meds that had been increased in the ER a few weeks ago. The combination of these things, and answers to YOUR prayers have brought about some very encouraging progress.

It seems she is trying so hard to say words--her nurse mentioned that today, too. Please keep praying that God restore her speech and make all the seizures go away.

Thanks so much!

Jean

Happy Mother's Day

I love Mother's Day, and this year, in addition to all the wonderful things they're planning to thank me for tomorrow, I thought I'd share a few things I'd like to thank them for.

Bill--I remember that it was Mother's Day weekend in 1981 that we decided to get married, or I convinced you to marry me, I forget which. I have to say that you've been the most faithful (and funny) "determined guardian" I could hope for--and the best friend to walk through the worst of times. Thank you for daily showing me God's strength, patience and love.

Taylor, thank you for keeping up with Annie's blog, even when you're on the road in your big rig. We miss your dry sense of humor, kindness and quiet presence around here when you're gone, but we're always so happy when you get to visit--like this weekend!

Peter, I appreciate your big heart, readiness to help in all our emergencies, and for displaying your love for your little sister every day with the ink on your neck: Annalee. I pray that God give you & your beautiful wife, Cris, a healthy baby girl who never has to look at the inside of Children's Hospital!

Andy, you bring life to our house when you're here--there's always something shakin' when you're in town, and we miss that sense of excitement when you're at school. I appreciate your willingness this summer to care for Annie so your Mom & Dad can have an occasional life, even when you could be out carousing with your peeps.

David--thank you for reaching out to the disabled kids at your school--sticking up for them, helping in their classroom, and just being their friend. Your identification with these kids shows the love Jesus has for them. I hope Annie has friends like you when she gets into high school. Maybe by then, you'll be teaching her class.

Jack, thank you for your love for Annie that spills out of every word you say to her. What a blessing to watch you today confidently wheel her all over Costco--she looked like a little princess protected by her bodyguard brother. And, even though the last 2 years have been exceedingly difficult, God has never failed us. And He will never fail you, either.

Olivia, you are the only other verbal female within our four walls, Annie's best big sister, and my right hand girl. I appreciate your nurturing, steadfast attitude, and your tactful way of telling me that the outfit I've chosen for the day looks way too dorky. Where would I be without you? Forever in mom jeans, no doubt.

Annalee--thank you for being my sweet baboo, my little mystery wrapped around an enigma; and my little reminder that with God, nothing is impossible.

Incredibly blessed,

Jean

I have no greater joy than to hear that my children walk in truth. III John 4

Aha!

Most of you have probably already figured this out, but today I came to a "mini-conclusion" about how to manage Annie's symptoms. I have always thought of her neuro stuff as being in one closet, and her endo/Addison's stuff as being in another. If she came up with a symptom, I always had this feeling that I needed to figure out which closet to look in to get the answer, or the solution to the problem, i.e., is her nausea being caused by her seizures, or her Addison's? As soon as I figured that out, THEN I could treat it.

Well, one of her pet symptoms is nausea/vomiting. The cause may be neuro (seizure activity) or endocrine (the Addison's). Bottom line, though, it doesn't matter what's causing it, because if it's seizures, she is under stress, so she needs more hydrocortisone. If it's Addison's that's causing the nausea, she needs more hydrocortisone. The cause of the nausea may be something that would be nice to figure out--sometime later today--but the solution to the nausea will almost always involve more hydrocortisone. This clarity is a little gift from God today, an answer to your prayers. :)

Now, the exception to this rule would be if we were in the doctor's office on Olivia's 14th birthday, because say, Olivia had a cough or something like that, and I happened to use the antibacterial gel so I wouldn't transfer swine flu germs to Annie, and say, that time that I did that, I also noticed that Annie was drooling, so I grabbed a couple of tissues to wipe her mouth without totally letting the gel dry that was on my hands, so that Annie could possibly get a whiff of the gel that would cause a visceral response such as retching. Then, I wouldn't necessarily give her more hydrocortisone. I would ask the receptionist how fast she could hand me an emesis basin. And then, Olivia and I could possibly set a record on how much time it took to obtain the basin, put it under Annie's chin, and save Annie's outfit, in the doctor's office. Hypothetically speaking.

Jean

For the LORD gives wisdom; from His mouth come knowledge and understanding. Proverbs 2:6

Lots of questions, no answers

Bill and I sat in the living room this morning debating whether Annie's listlessness and increased seizure activity warranted a trip to the ER. After lots of head scratching, hand wringing and consulting with the neuro-doc-on-call, we decided that Bill would take her down, and I would attend to the kids here at home, work, jazz band events, etc.

Bill and Annie were stopped at the entrance of the ER by a security guard armed with swine flu identification tags--if you hadn't sneezed, coughed, sniffled, or been within spitting distance of anyone who had, you got a blue sticker to wear that had in large type: NO FLU SYMPTOMS, or something to that effect.

So after getting settled in a room (2 hours) and after the nurses poked and prodded, and checked her electrolytes, (fine), blood sugar, (fine), and various vital signs, (2 more hours) the docs concluded that her droopiness and increased seizures might be caused by the fludrocortisone, and that we should discontinue it. They also increased some seizure medicine, and doubled her dose of hydrocortisone, and told Bill to call endocrine & neurology on Monday to follow up.

Then Bill took Annie, put her tired little body back in her wheelchair and wheeled her back out to the parking lot, lifted her back into her carseat and drove home. It was a hard day for Dad and Annie...and frustrating that there are no clear cut answers, only questions.

While Bill was on his way home, I watched last Sunday's sermon on line...I had missed it, and Bill had told me that it was helpful to him. I would recommend it to anyone who is going through a tough time--it gave me renewed perspective on our situation of chronic illness. The bottom line for me tonight is that I need to trust Jesus and worship God, even when there are no answers.

Jean

http://www.marshillchurch.org/media/trial/suffering-to-worship.

For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. Romans 8:18