Last Saturday night, friends Kristi & Levi stayed with Annie while we went to a wedding. While we were gone, Annie repeated the phrase recorded on one of her communication devices: "Hi, Annie!" Kristi said she wasn't sure if she REALLY said it the first time--until she said it again, "Hi, Annie!"
Today when I picked her up from preschool, she looked up at me and said,"Hiiiyah."
So, we're getting the social greetings down--what a major answer to prayer--thank you, Lord!
And now for the not-so-good news: Annie seems to be going into another gaggy stage. Not sure why. You might pray that we figure it out quickly...it could be the diet, or some supplement, or one of her meds. But it's stressful. I guess it could be worse. She could be gaggy and not saying, "Hiiiyah!"
Jean
Monday, April 28, 2008
Monday, April 21, 2008
Jiffy Tube
Annie's g-tube replacement went almost as fast as a 10-minute oil change--we're already home, she's in bed asleep, and her first meal is running through her new tube now. Thank you all for praying!
Jean
Before they call I will answer;
while they are still speaking I will hear. Isaiah 65:24
Jean
Before they call I will answer;
while they are still speaking I will hear. Isaiah 65:24
Friday, April 18, 2008
Snowing in Seattle
Well, this may be the latest spring snow on record around here, and as of 8:15 PM, there's about 4 inches on the back deck railing. Must be global warming.
Annie started back to school this week with her new one-on-one nurse. Tuesday I stayed and coached the nurse through the day, but on Wednesday I went home and left Annie there in the nurse's good hands. Annie really seems to enjoy being there again with all the kids, and perks up a lot in the "circle" time while the teacher sings and welcomes each child. She really loves music, and responds to the familiar songs she hears. There's only 10 more weeks of school, but I think they'll be very beneficial for both of us. I took her bike to school, too, so she can ride on it when they have playtime outside.
This afternoon before the snowstorm, we were down at Children's to discuss the plan for Monday's g-tube surgery with the anesthesiologist nurse. Annie will test their system I think, and she will need lots of prayer that morning. It's a relatively simple procedure, but with her Addison's, Ketogenic Diet, and seizure issues, nothing is simple. It would be nice if she didn't need a g-tube, but until that day, we need to keep things up and running through her gut.
Well, I think I better go dig out our snow shovel from the garage--it's still coming down hard outside.
Jean
A snowflake is one of God's most fragile creations, but look what they can do when they stick together! ~Author Unknown
Annie started back to school this week with her new one-on-one nurse. Tuesday I stayed and coached the nurse through the day, but on Wednesday I went home and left Annie there in the nurse's good hands. Annie really seems to enjoy being there again with all the kids, and perks up a lot in the "circle" time while the teacher sings and welcomes each child. She really loves music, and responds to the familiar songs she hears. There's only 10 more weeks of school, but I think they'll be very beneficial for both of us. I took her bike to school, too, so she can ride on it when they have playtime outside.
This afternoon before the snowstorm, we were down at Children's to discuss the plan for Monday's g-tube surgery with the anesthesiologist nurse. Annie will test their system I think, and she will need lots of prayer that morning. It's a relatively simple procedure, but with her Addison's, Ketogenic Diet, and seizure issues, nothing is simple. It would be nice if she didn't need a g-tube, but until that day, we need to keep things up and running through her gut.
Well, I think I better go dig out our snow shovel from the garage--it's still coming down hard outside.
Jean
A snowflake is one of God's most fragile creations, but look what they can do when they stick together! ~Author Unknown
Friday, April 11, 2008
Good news/bad news
It's good for me to look at Annie's pictures running down the side of this blog, and compare her expression today from just a few months ago at Christmas. Used to be, she would rarely smile--but today, she smiles all the time. But yesterday was the first time I heard a full-blown giggle. I forget what we were "talking" about, but we were going back and forth, and she kinda looked at me like I was nuts, so I just said, "WHAaaaT??" Well, she just started laughing and wouldn't stop. It took me a few seconds before I thought, "Hey--I haven't heard that sound in over a year!" It was very cool.
So the other very good news is that her seizures have gone from about 4 an hour a week or so ago, to about 2 a day. Yeah--TWO, as in the number 2. She had 2 yesterday and 2 that I saw today.
Now for the challenge of the week: Annie's g-tube needs to be replaced, because the button that closes it broke off. Millie probably found it on the floor and ate it. I guess these tubes usually last about a year, and then need to be switched out. So I called Children's this morning, and they providentially had an open appointment this afternoon with the general surgery nurse. We discussed the options, which are: get it replaced in the office with great pain and suffering, or get it replaced with outpatient surgery. They'll call us to schedule the surgery soon.
Gotta take the good with the bad, eh? Giggles, less seizures, and minor surgery. The trend is still UP.
Jean
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33
So the other very good news is that her seizures have gone from about 4 an hour a week or so ago, to about 2 a day. Yeah--TWO, as in the number 2. She had 2 yesterday and 2 that I saw today.
Now for the challenge of the week: Annie's g-tube needs to be replaced, because the button that closes it broke off. Millie probably found it on the floor and ate it. I guess these tubes usually last about a year, and then need to be switched out. So I called Children's this morning, and they providentially had an open appointment this afternoon with the general surgery nurse. We discussed the options, which are: get it replaced in the office with great pain and suffering, or get it replaced with outpatient surgery. They'll call us to schedule the surgery soon.
Gotta take the good with the bad, eh? Giggles, less seizures, and minor surgery. The trend is still UP.
Jean
I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. John 16:33
Monday, April 7, 2008
Happy Birthday!
Annie is five years old today, and we celebrated with balloons, cupcakes--for those of us who are not on the ketogenic diet--and about 95 choruses of "Happy Birthday to You"! OT Cynthia even brought a communication device that we had used at school that, oddly enough, had my recorded voice from a few months back singing, "Happy Birthday". It IS one of Annie's favorite songs.
This morning after therapy, we had a visit from friend, Kristi, who helped Annie learn to pick up a spoon and feed herself...Ranch dressing. Lots of fat on this diet. I've been on it my whole life, but never knew it.:) Now that Annie is awake and alert, we can resume the whole eating thing, but no more Trader Joe's veggie sticks--too many carbs.
Jean
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be. Psalm 139:13-16
This morning after therapy, we had a visit from friend, Kristi, who helped Annie learn to pick up a spoon and feed herself...Ranch dressing. Lots of fat on this diet. I've been on it my whole life, but never knew it.:) Now that Annie is awake and alert, we can resume the whole eating thing, but no more Trader Joe's veggie sticks--too many carbs.
Jean
For you created my inmost being;
you knit me together in my mother's womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be. Psalm 139:13-16
Friday, April 4, 2008
Upward trends
Things have continued to improve this week--yeah! Annie is much more "conversant," much more interactive with her toys, and definitely not the sleeping beauty she was last month. She really seems to be trying hard to say things--and seems to understand more of what we're saying to her. I'm sure the vitamins, carnitine, and selenium helped. And I think the ketogenic diet's benefits are kicking in, too. We also titrated one seizure medicine down last weekend, which was the clincher, in my mind--a huge difference. The day after we did that she was much more alert, and the day after that, she was almost back to her old self.
I did notice yesterday, too, that the diet seems to finally be knocking out the frequency of the seizures. I know that everyone's response is different, and often there's an initial good response, and then the seizures come back. But--let's pray that we keep going in the right direction--that the diet works, and that we can get Annie off most, if not all, of her seizure medicines.
Meanwhile, if she keeps feeling well, we're planning to try preschool again this month. The school district has arranged a nurse to be with her, so we're looking forward to that. And, next week, Annie turns five. Time flies.
Jean
He has made everything beautiful in its time. Ecclesiastes 3:11
I did notice yesterday, too, that the diet seems to finally be knocking out the frequency of the seizures. I know that everyone's response is different, and often there's an initial good response, and then the seizures come back. But--let's pray that we keep going in the right direction--that the diet works, and that we can get Annie off most, if not all, of her seizure medicines.
Meanwhile, if she keeps feeling well, we're planning to try preschool again this month. The school district has arranged a nurse to be with her, so we're looking forward to that. And, next week, Annie turns five. Time flies.
Jean
He has made everything beautiful in its time. Ecclesiastes 3:11
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