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