Thankful

Thanksgiving is a good time to look back over the past year and write down all the ways God has blessed us. I've whittled my list down to an incomplete top ten, and here they are:

1. Only one week spent in the hospital this year. Oh, and the overnight stay to get Annie's VNS placed. Woo-hoo.
2. Annie's new Kidwalk. She loves to walk through the hall at school and touch the lockers. I'm not sure why they fascinate her--maybe she's trying to figure out what's inside. Or how to get inside.
3. Bill. Okay, he's probably #1 on this list, but I'm always thankful for his unselfish love and support. He is a gift from God-- and, yeah, occasional comedic relief.
4. Annie's nurse, Moira. She is simply the best.
5. Teacher Amanda. She expects a lot from her students, and patiently coaxes it out of them--all with a fun and playful attitude. She is Teacher of the Year in my book. Annie thinks she's pretty cool, too.
6. All of Annie's therapists--Michelle, Kim, Sandy, Sarah, Amy, Kathy, Claudia--so many hours working on walking, talking, eating, riding...I am grateful for each of these professionals who have contributed so much to Annie's progress this year.
6. My six kids. Their love, affection and care of Annie blesses my heart; their support helps me immensely. Their "other" lives provide a needed diversion from the medical minutia that I obsess about.
7. My new granddaughter. My heart just about turns inside out every time I spend time with this little bundle of pink. How does a ten and a half pound baby draw you so close into her orbit with just a smile and a coo? She is perfectly, entirely, and beautifully wonderful. And I am so proud of her Mommy & Daddy.
8. Friends and family who pray for Annie. You need to know that the moment your prayers leave your lips, God is at work at our house. Your prayers are the glue that holds us together.
9. Annie's progress this year. Her brain continues to knit together, making new connections each day. Let me share a little example. Annie has a cold. Thankfully, she hasn't had many colds in the last 2 1/2 years, so she hasn't had much practice coordinating sneezes, coughs, and sniffles. And you know, if you've had a cold recently, how difficult it can be to produce all this junk and not know what to do with it. Well, this morning, Annie was on the verge of upchucking it all, because that's what she knows how to do, and has had plenty of practice doing. And as she was moving in that direction, I interrupted the snowballing process and said, "Annie, swallow." So she looked at me, pursed her lips, and swallowed. Now--you may think this is not a big deal. It's a big deal. For her to understand what I said, and then follow instructions, and coordinate all her mouth and swallow movements---it's a real big deal. And just a little example of the cognitive progress she's made this year. Now, to teach her how to blow her nose into a Kleenex instead of onto her sleeve...
Okay, one more story. I have a pile of about twenty board books on the hearth beside the recliner. Annie and I sit on the recliner each day and read about ten of them. I pick up two, and ask her, "Do you want to read Hop on Pop or Are You My Mother?" Then she chooses by touching one of the books. We repeat this process until all of the books are read. Occasionally, I'll introduce a new one to her favorites, and after reading it a few times, it becomes another one of her favorites. She loves to be read to. I have a hunch that some day this will morph into being able to read herself. Or read outloud. Won't that be the coolest thing?
10. Jesus--He gives me hope that these difficulties aren't without purpose or meaning--or an end. To know that one day Annie will run and jump and laugh and talk--this gives me so much hope. I know she will, whether here or in heaven. But I hope it's here, don't you?

Jean


Enter into His gates with thanksgiving, and into His courts with praise. Be thankful to Him, and bless His name. Psalm 100:4

Trends

Thursday was great; Friday the storm came in. Annie began Friday by dumping her breakfast on the living room floor. I had a brief thought that maybe she wasn't feeling well, but since Thursday was so great, I quickly dismissed it, and figured that maybe moving the G-tube rate up 1 point, from 105 an hour to 106 an hour was too big of a change--that's why she threw up, I thought.

So I packed her up for school, and off we went. She did look a bit droopy in the van, which I mentioned to Nurse Moira when I dropped her off. However, she didn't have a fever, because I had checked that at home. And there have been at least 156+ other school days when she looked droopy on the way to school after throwing up her breakfast, and nothing of import was wrong.

So when I picked her up in the afternoon to take her to her OT appointment, Nurse Moira said that Annie had spent most of the day snoozing on her lap. The change from Thursday was so dramatic, we were all pretty sad about it--but not alarmed. And since she was so lethargic, I cancelled her OT appointment, went home, and gave her 5 mg. of hydrocortisone.

Around 4 PM, I checked her temp. Great--it was 100+ under her arm. So I started running Pedialyte in her g-tube, and gave her 5 more mg. of hydrocortisone. She kept the hydro in for a decent amount of time, but gave me back the Pedialyte. So I gave her 5 MORE hydrocortisone.

When Bill came home, we put her in the van and started down to the ER. Since the hail, sleet and frozen ice was all over the road, it took us awhile to get down there. Somewhere on the way, it occurred to me to pray: "Lord, help us to know what to do, and please heal Annie." By the time we drove off the freeway exit, Annie started chattering, laughing, and otherwise perking up. We then began debating whether to take her home, and take her in to the pediatrician in the morning. But we didn't want to get back in line on the freeway, so we went to McDonald's drive-through to relieve our stress with carbs and salt. And as we're driving back to the freeway, we put 2 + 2 together and realized that God had answered our prayer!

I did take her in Saturday morning, just to be on the safe side, and the pediatrician couldn't find anything obvious that would cause her to spike a fever: no ear infection, lungs clear, no swollen glands. She is sneezing, and something may present itself, but as of this morning, nothing.

I do wish Annie could tell me when she's not feeling well, so I could give her more hydrocortisone right away, instead of waiting for obvious signs, like vomiting and fever. I always feel like I'm behind the 8-ball. And it's always a judgment call as to how much, and how long to give her the higher dose, because she can't TELL me what she's feeling. And a person with Addison's needs has an illness coming on, they need hydrocortisone right now.

Now, along with the sneezing/cold thing, came her seizures back. And as of tonight, she's running about 8+ a day again. It's such a one step forward, two back deal. But even with all this, I detect an upward trend. Tonight while I was sitting beside her on the floor, I noticed her attention switching easily from one thing to another. She was playing with her big Princess book, and looking at me from time to time. She also was leaning back on her bean bag chair, with her legs out straight and her ankles crossed, rubbing her feet together like her daddy does. She looked relaxed and natural.

I remember when we were first in the hospital in '07, our friend, Erik, who has some experience with disability, said to watch trends, not days. I know we've talked about that before on this blog--so here's another reminder to watch trends. And although this last week had some speed bumps, the trend is still up.

Jean

Cast all your anxiety on him because he cares for you. 1 Peter 5:7

Turning over a new leaf?

Yesterday, Annie had her best day ever since her brain injury. And I'm not exaggerating. Nurse Moira said she toddled up and down the hallways at school in her Kidwalk, yelled when she didn't get to play with another kid's toy--it was like someone put a different kid in Annie's body. Even Olivia commented while she played with her in the afternoon: "She's so alert!"

I attribute this improvement to increasing the VNS last Wednesday, and God answering our prayers. The VNS had been programmed to go off every 3 minutes, but the neuro nurse-practitioner adjusted it to go off every 2 minutes. That one increase has brought about a huge change in this little girl. Huge.

Now, lest I take a breath and celebrate, this morning Annie was a bit under the weather--not sure why...maybe the beginnings of a cold. But I will choose to ignore that--after I give her more hydrocortisone--and be thankful that the VNS is helping obliterate those awful seizures.

Jean

This I recall to my mind, therefore have I hope. It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness. Lamentations 3:21-23

November

The leaves on our huge maple are almost gone--lots of wind these past few days. It's blown most of the leaves down the street, too, so we won't have to spend the weekend raking them up. Always looking for things to be thankful for.

After my last post, we were inundated with swine flu--like 3 weeks of fevers, coughing and everyone feeling horrible. Now, we weren't officially tested for it--but the docs all agreed that it was probably what we had. Thankfully, Annie seemed to recover faster than the rest of us--on Tamiflu and prayer--but this week, she seems to have had a few of her chronic problems crop up again. This past week, we've seen more seizures, drooling, and vomiting than we've seen in awhile. We did go in for an appointment with neuro on Wednesday, and they reprogrammed her VNS to go off every 2 minutes instead of every 3, which seems to have helped perk her up. And, I've been giving her more hydrocortisone, so that's helped. But why she gets into these cycles I just can't figure.

Tonight she seems a bit better, though, so maybe this weekend we'll turn a corner.

Jean

The falling leaves drift by the window
The autumn leaves of red and gold
I see your lips, the summer kisses
The sun-burned hands I used to hold
Since you went away the days grow long
And soon I'll hear old winter's song
But I miss you most of all my darling
When autumn leaves start to fall. Johnny Mercer