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

Annie's New Kidwalk

As promised, on the sidebar is the link to a short clip of Annie trying out her new Kidwalk. This gait trainer has only been out for about a year, and it is pretty cool. It allows her to access things in front of her at school--like desks and tables--and it is dynamic, i.e., the saddle seat moves up and down and side to side as she walks. The seat of her other (less cool) gait trainer was stationary, and didn't help her mimic a normal walking pattern. Also, this Kidwalk comes in a fashion-forward neon lime color, and features wheels that light up. It road-tested at 0-60 in 7 seconds, but we have a governor on it, so she can't go faster than 35 mph when she's indoors.

I'll periodically take video of her walking in this, so you can see her progress. This first time, she was a bit tentative--but not resistant--to being in it, so that's a win. Please pray that this Kidwalk help strengthen her little bird legs, and help her regain core muscle strength so that she can walk again.

Jean

All things are possible to him who believes. Mark 9:23

October

Lots of news to report this month--first, Annie is getting her Kidwalk gait trainer tomorrow, and I promise to get a video up asap. The first time we put her in it, she seemed to like it, so hopefully, tomorrow she'll do the same.

She also continues to do well in hippotherapy, and sat up real straight while riding Mahon the Amish horse yesterday. She is warming up to him more, too, and actually looked at him when she threw a handful of carrots on the floor for him to eat. Used to be that she'd turn her head and avert her eyes when we parked her wheelchair near his stall. And you may remember that she gagged the first time we tried to get her to touch the carrots. So, maybe next week she'll let him eat from her hand--or maybe next year.

On a practical note, Moira, her school nurse, reported to me last week that Annie sat on her big girl potty, and also produced. Just don't tell her that I told you that--she'd be mortified. Little things are big deals around here, you know.

Well, let me charge up those batteries, and we'll have that Kidwalk video up by the end of this week.

Jean

"So I will strengthen them in the Lord, and they shall walk up and down in His name,” says the Lord. Zechariah 10:12

That's all for now...

Annie's in school full days now, and she's been relatively stable for awhile. So now that I have all this free time to do laundry, pull weeds and wash bathrooms, I'm also going to get my act together and write a book. It may end up being more of a pamphlet, or a paragraph, but I'm going to start. Tomorrow at the latest.

What this means for the blog, is I'm going to be updating it only about once a month. Of course, in the event that Annie starts doing cartwheels or eats ice cream I'll update it sooner. Meanwhile, I want to thank you all for your continued prayers for Annie and our family--as often as you think of us, we still need them! And if you ever want to know something about Addison's Disease, seizures, or brain injury just post your question and I'll try to help.

Jean

"Let us run with endurance the race that is set before us, looking to Jesus, the Author and Perfecter of our faith." Hebrews 12:1a-2a

Highly Capable

At the back-to-school night at Annie's school, a little girl who remembered Annie from last year came up to say hello, and then looked up at me and asked, "Is she going into the 'highly capable' class this year?"

I couldn't help but smile at that innocent question. Then I said, "Aahh, close." Not exactly 'highly capable', I thought, but close.

Her mom steered her away from Annie and said, "She is going to a classroom that's just perfect for her, because she is just right the way she is." Hmm, I thought. That's a kind thing to say, but not quite accurate, either.

As I wheeled Annie down the hallway filled with kids walking hand in hand with their parents, my mind drifted back to the Annie who knew where all the states fit in her United States puzzle, and could tell me which aunt or uncle lived in which state....the Annie who memorized scripture that corresponded to each letter of the alphabet, but never made it past "M is for My grace is sufficient for you." And the Annie who loved to sing:

Shout to the North and the South,

sing to the East and the West,

Jesus is Savior to all,

Lord of heaven and earth!

As I turned the corner into Annie's Lifeskills classroom, my mind snapped back to our current reality of hanging with the kids whose bodies and brains fight against all their best efforts to be "normal." In Miss Amanda's cheerfully decorated classroom this year will be kids in wheelchairs, kids with autism, and kids like Annie who have 3 or 4 different diagnoses. It will be a motley crew. But also in this classroom will be a young teacher who has dedicated her life to drawing out of these little minds moments of understanding, and new skills achieved after months and months of painstaking repetition. And with her will be the same team of para-educators from last year--committed professionals who find working with these kids to be a fulfilling and rewarding vocation.

No, Annie is no longer the "highly capable" little girl of my memory. All of her successes and achievements are now measured in tiny increments, not great leaps. And I know it will take months and months of painstaking repetition for me to change my definition of success.

Jean

M is for My grace is sufficient for you, for my power is made perfect in weakness. 2 Corinthians 12:9

Aunt Annie

Yesterday Annie became an aunt, Peter became a daddy, Cris became a mommy, I became a grandmother, and Bill became a grandfather. Yes, little Irene Grace made her grand entrance into the world, and we are all tickled...pink! And Annie figures if Irene likes pink, then she must be a keeper.

We're still trying to figure out what our "grandma" & "grandpa" names are going to be. We have the luxury of worrying about inconsequential things like that, because we actually got a full night's sleep last night. Visiting with the new parents today at the hospital brought back so many memories of new babies and sleepless nights. They do kind of go together like peanut butter and jelly.

I can't gloat too much, because Annie seems to have forgotten how to sleep past 5 AM the last few nights. Don't know what's going on, but something is. I was reminded the other day, though, that I need to celebrate the good things, and not just move on to the next problem. She isn't throwing up, she is pooping, and school is starting soon. All good things to celebrate, just like new little pink grandbabies.

Jean

Behold, children are a heritage from the LORD,
the fruit of the womb a reward. Psalm 127:3

Sorting it out

I bought Annie a new toy a week or so ago. Of course it has flashing lights, sounds, music--all the required elements for her to be interested in it. A few days later I noticed that her absence seizures were increasing. Then I read that absence seizures are often triggered by flashing lights. Duh. So I took the new toy and tried masking tape to cover the lights, but the lights still showed through. I think I need duct tape.

Then today I was reviewing the results of labs done awhile back and discovered that her selenium is low. Did you know that a deficiency in selenium can exacerbate seizures? I didn't know either until I did some research. So, get rid of the lighted toys and add selenium.

Then there's her Addison's. Last month when Annie was doing so poorly, she had the hiccups a lot. Then I read that with at least 2 people who were diagnosed with Addison's, one of their symptoms was hiccups. Now when we increased Annie's hydrocortisone dose in the middle of August, her hiccups went away. So, for my Addisonian friends--if you notice hiccups with generalized weakness, maybe you need to increase your hydro dose??

I need to write Epilepsy for Dummies, or Addison's for Dummies. Who knows if there's a direct cause and effect with these things? I'm just taking notes. Overall, though, Annie is still doing okay...I just need these seizures to go away. Thanks for your prayers--we always need them.

Jean

I will instruct you and teach you in the way you should go;
I will counsel you and watch over you. Psalm 32:8