Annie has had a very good week so far--her blood sugar and all her little systems have been stable as she adjusts to the Ketogenic diet. The doctors said that most kids throw up sometime during the initiation of this diet, so for Annie to have kept her groceries in is a big answer to prayer. She has gotten a bit gaggy, though, last night and tonight, so please keep praying that her body adjust to the higher fat.
If all goes well, we should all be home tomorrow afternoon. And then, of course, WE'LL have to adjust to the new diet too. It's not quite as easy as popping a can of formula, and hooking up her g-tube. More like mixing dry milk with flaxseed and protein powder. Which, still isn't rocket science, but when you add it to the 8 medicines she takes 4 different times a day...well, it needs to be written down on a nice, big spreadsheet. Enter Bill. My brain can't organize that much detail.
I realized that again tonight after stopping at Fred Meyer for a few things before heading home. I reached into my purse for my wallet while standing in line at the express checkout, and uh, the wallet wasn't there. Think back, where did I leave it? Oh, I took Annie for a walk this afternoon down to the hospital cafeteria, and instead of balancing my purse on the back of her wheelchair handles, I put my wallet into her backpack. And there it will stay until I get it tomorrow morning.
Jean
Thursday, February 28, 2008
Wednesday, February 27, 2008
Ketogenic Diaries
Yesterday, we checked in here at Children's Hospital to begin the ketogenic diet. The day began with a short fast, then Annie had her first keto-meal for lunch. Things have been going well, and she seems to be tolerating the new higher fat diet okay. We'll go up to 1.5 gm. fat per carb today, and 2 gm. of fat per carb tomorrow. Most kids eventually go up to 4 gm. fat per carb, but we'll stay at 2:1 for now. Ketosis should kick in here soon-which, as I understand it, means she is burning fat instead of sugar. Again, the high fat diet controls seizures.
And, speaking of seizures, last night Miss Kim and I took her upstairs to the cafeteria to have dinner, parked her wheelchair next to the table, and boom--head drop seizure into the edge of the table. Of course, just as her screaming began to die down, the bump under her eye swelled up, then turned black and blue. She recovered soon enough, and after we got her safely back into her room, she began using her right hand and arm to reach and grab for things. Probably wanted to get a hold of the nurse call button, I don't know.
Now,a question in my mind: was the increased use of her arm a result of the fast? She's not doing it so much today, but it was a very encouraging sign last night. She was also more alert than she's ever been. It's interesting to see her fluctuations, and although I'm disappointed that she's not using her right arm/hand as much today, I'm excited that the ability is in there.
More later,
Jean
Ah Lord GOD! Behold, You have made the heavens and the earth by Your great power and by Your outstretched arm! Nothing is too difficult for You. Jeremiah 32:17
And, speaking of seizures, last night Miss Kim and I took her upstairs to the cafeteria to have dinner, parked her wheelchair next to the table, and boom--head drop seizure into the edge of the table. Of course, just as her screaming began to die down, the bump under her eye swelled up, then turned black and blue. She recovered soon enough, and after we got her safely back into her room, she began using her right hand and arm to reach and grab for things. Probably wanted to get a hold of the nurse call button, I don't know.
Now,a question in my mind: was the increased use of her arm a result of the fast? She's not doing it so much today, but it was a very encouraging sign last night. She was also more alert than she's ever been. It's interesting to see her fluctuations, and although I'm disappointed that she's not using her right arm/hand as much today, I'm excited that the ability is in there.
More later,
Jean
Ah Lord GOD! Behold, You have made the heavens and the earth by Your great power and by Your outstretched arm! Nothing is too difficult for You. Jeremiah 32:17
Thursday, February 21, 2008
Gearing Up
We got a call this afternoon from the neurology nurse regarding the ketogenic diet that Annie will begin next Tuesday. If all goes well, she will experience a decrease in seizure activity, maybe as soon as the first week on the diet. My goal is that her three seizure medicines will be eliminated, which could take weeks or months to wean off. That would be best case scenario. Most kids who are on this diet, stay on it for at least 2 years, and then gradually move back to eating regular food. The good thing for us is that they have a Ketogenic formula I can use in her g-tube. She'll be in-patient at Children's until at least Friday, as they monitor her electrolytes, and her general adjustment to this high-fat, low-carb diet.
I talked to the dietician about Annie's preference for salty, crunchy food, and she said that bacon and pork rinds are on the diet. Mmm, mmm, good. Annie did eat cooked carrots for the first time the other night, so maybe I'll be able to move her toward more healthy food choices. But the fat in the diet is what shuts off the seizures, so there's plenty of fat on her list of allowed foods. Can you say "ma-yo-naise??"
We would sure appreciate your prayers for a smooth transition to this new diet, and that her electrolytes remain STABLE. Obviously, because Annie's metabolic system is whacked out by the Addison's disease, she will be watched like a hawk by her doctors. And Mother.
The whole thing is a risk, but because she is on three seizure medicines, and is still having at least 6-10 drop seizures a day (I haven't said anything about it, because I keep thinking they'll go away), I believe it's a worthwhile thing to do. Again--we would appreciate your prayers for her, for the kids at home, for the doctors, and for us.
Jean
Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Ephesians 3:20-21
I talked to the dietician about Annie's preference for salty, crunchy food, and she said that bacon and pork rinds are on the diet. Mmm, mmm, good. Annie did eat cooked carrots for the first time the other night, so maybe I'll be able to move her toward more healthy food choices. But the fat in the diet is what shuts off the seizures, so there's plenty of fat on her list of allowed foods. Can you say "ma-yo-naise??"
We would sure appreciate your prayers for a smooth transition to this new diet, and that her electrolytes remain STABLE. Obviously, because Annie's metabolic system is whacked out by the Addison's disease, she will be watched like a hawk by her doctors. And Mother.
The whole thing is a risk, but because she is on three seizure medicines, and is still having at least 6-10 drop seizures a day (I haven't said anything about it, because I keep thinking they'll go away), I believe it's a worthwhile thing to do. Again--we would appreciate your prayers for her, for the kids at home, for the doctors, and for us.
Jean
Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us, to Him be glory in the church by Christ Jesus to all generations, forever and ever. Ephesians 3:20-21
Monday, February 18, 2008
Going on a bike ride
Today the sun is shining, the windows are open, the germs are floating outside, and Annie took a ride on her bike for the first time this spring. I think the last time she was on her bike was sometime in October, or the last time the thermometer topped 50 degrees, I forget which. After I put her on the seat and strapped her tummy belt on, she kept pushing her left foot off the pedal as if to say, "Let's get this thing moving!" Last year we'd have to coax her to pedal, but today she pushed both pedals with strength and consistency--a marked improvement. The icing on the cake were her smiles while she was riding--totally different expression than last year.
Her cold is pretty much gone and has passed on to brother Jack. One more germ to go and hopefully we'll be done for this year. Yeah, right. I finally got her on an antibiotic a few days ago--I know, bad thing. But she's better and I'm happy about that. Thank you for your prayers--God is healing her. (Now we can pray for Jack!)
Going back to the whole Valentine's Day subject, I was thinking yesterday about how much I appreciate Bill. He got home Saturday after a 5-day building construction trade show in Orlando, and boy was I happy to see him again. The kids were all very helpful through the week, and God took care of us well. But Bill is Jesus with skin on--the anchor at the Sullivan house. My ability to adjust to our new reality this year is directly related to Bill's selfless and sacrificial actions. He is one cool dude.
And, you guys know that we know--our heads are above water because of your faithful prayers. I don't know how God does it, but He puts us on your hearts just when we need it. Thank you again for listening to Him, keeping up with Annie's changes, and for holding the scaffolding under us.
Jean
He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. 2 Corinthians 1:10-11
Her cold is pretty much gone and has passed on to brother Jack. One more germ to go and hopefully we'll be done for this year. Yeah, right. I finally got her on an antibiotic a few days ago--I know, bad thing. But she's better and I'm happy about that. Thank you for your prayers--God is healing her. (Now we can pray for Jack!)
Going back to the whole Valentine's Day subject, I was thinking yesterday about how much I appreciate Bill. He got home Saturday after a 5-day building construction trade show in Orlando, and boy was I happy to see him again. The kids were all very helpful through the week, and God took care of us well. But Bill is Jesus with skin on--the anchor at the Sullivan house. My ability to adjust to our new reality this year is directly related to Bill's selfless and sacrificial actions. He is one cool dude.
And, you guys know that we know--our heads are above water because of your faithful prayers. I don't know how God does it, but He puts us on your hearts just when we need it. Thank you again for listening to Him, keeping up with Annie's changes, and for holding the scaffolding under us.
Jean
He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. 2 Corinthians 1:10-11
Thursday, February 14, 2008
Happy Valentine's Day
This morning I'm wading through lots of overactive teenage hormones--I don't remember Valentine's Day being quite this complicated when I was young. After listening to all the gyrations necessary to arrange surprise balloons, signs, chocolate and roses, I'm ready for a nap--and I haven't done a thing. Anyway--Happy Valentine's Day to all you incurable romantics.:) Annie will be wearing pink hearts and tights and pink shoes today, so I won't feel like a complete loser. I'll ask Bill to put up a picture of her this weekend.
We took Annie to David's basketball game last night--we lost--and she did very well for being out so late. She was alert, smiling, "talking," and happy to watch her big brother play.
Something new this week: she turns around in her wheelchair and looks up at me, gets my attention and then smiles. The whole attention-getting thing is pretty cool. Attention-getting ploys used to annoy me--now I'm thrilled that she's engaged to the point of WANTING attention! The other thing she did yesterday in the van that was different was pushing her feet into the seatback in front of her to shift her weight. She used both legs, both feet, and pushed into the seat to adjust. Before, she'd just let her legs dangle. New neurons are firing and waking up lots of new things.
Her cold is still hanging on--please pray that it go away. Everyone's got a runny nose here at our house, so we just need some spring weather to make us better. The weatherman said we'll have sun for the next few days. That's a good thing, because I'm one click away from booking a flight to Palm Springs.
Jean
PS. Here's a thought my sister, Rebecca, e-mailed me this morning: "A good marriage is a bit like a pet boa constrictor: either you feed it every day or bad things happen." I better go get some balloons, signs, chocolate and roses.:)
We took Annie to David's basketball game last night--we lost--and she did very well for being out so late. She was alert, smiling, "talking," and happy to watch her big brother play.
Something new this week: she turns around in her wheelchair and looks up at me, gets my attention and then smiles. The whole attention-getting thing is pretty cool. Attention-getting ploys used to annoy me--now I'm thrilled that she's engaged to the point of WANTING attention! The other thing she did yesterday in the van that was different was pushing her feet into the seatback in front of her to shift her weight. She used both legs, both feet, and pushed into the seat to adjust. Before, she'd just let her legs dangle. New neurons are firing and waking up lots of new things.
Her cold is still hanging on--please pray that it go away. Everyone's got a runny nose here at our house, so we just need some spring weather to make us better. The weatherman said we'll have sun for the next few days. That's a good thing, because I'm one click away from booking a flight to Palm Springs.
Jean
PS. Here's a thought my sister, Rebecca, e-mailed me this morning: "A good marriage is a bit like a pet boa constrictor: either you feed it every day or bad things happen." I better go get some balloons, signs, chocolate and roses.:)
Saturday, February 9, 2008
Weekend Update
Annie has a green, stuffy nose tonight--could you pray that this cold run its course quickly, and that no one else get sick? Fortunately, she doesn't seem too wiped out with it, and is still trying lots of sounds and volumes, loud being her favorite.
Other news: Millie got her cast off yesterday, and is limping around with a leg that hasn't been used in 6 weeks--not pretty. I'm sure she'll be fine soon enough--she's actually kind of hyper after getting that 5 lb. weight off her hind wheel. The one thing that calms her down is napping on Bill's lap with her nose jammed into his armpit.
Jean
Other news: Millie got her cast off yesterday, and is limping around with a leg that hasn't been used in 6 weeks--not pretty. I'm sure she'll be fine soon enough--she's actually kind of hyper after getting that 5 lb. weight off her hind wheel. The one thing that calms her down is napping on Bill's lap with her nose jammed into his armpit.
Jean
Tuesday, February 5, 2008
Super Tuesday
Super Bowl Sunday, Super Tuesday....I guess tomorrow is going to be Stupendous Wednesday? So Annie has a bit of a runny nose today, and I'm hoping she isn't coming down with my cold. I'm going on Day 12 or 13 of this crud, I forget. I'm just sick of coughing, and I think everyone else around here is sick of listening to me cough. Even when our dog Millie sees me, puts her ears down and runs the other way. I figure the antibiotics I got on Super Bowl Sunday should be kicking in here any minute.
I thought I'd put a list of foods that Annie has tried, and maybe you guys can suggest other things, too. So far, crackers and things that are crunchy seem to be her favorite. But on the crackers, I've put peanut butter--which she'll eat a couple of bites of, sour cream--which she doesn't particularly like, and cream cheese. She's also tasted ketchup, yogurt again, and applesauce, and vanilla ice cream. She hasn't gagged on any of it, but she does show her preferences, like goldfish, Tim's Cascade Sweet Maui Onion Rings, and Trader Joe's Veggie sticks. It sure is a lot more than she was eating a month ago.
She's making more sounds too, some of which are charming, others that are less so. One new method of getting Mommy's attention is to open her mouth like a howler monkey and roar from the bottom of both lungs. No doubt she picked up this communication tool from one of her brothers. She also is saying "Hey, hey, hey," alot. She tries different volumes, and different sing-song voices...but still no words. I had a dream a few nights ago that she said her first word, "kangaroo." Three syllables would be pretty amazing, huh? You never know.
Jean
"By perseverance the snail reached the ark." Charles Spurgeon
I thought I'd put a list of foods that Annie has tried, and maybe you guys can suggest other things, too. So far, crackers and things that are crunchy seem to be her favorite. But on the crackers, I've put peanut butter--which she'll eat a couple of bites of, sour cream--which she doesn't particularly like, and cream cheese. She's also tasted ketchup, yogurt again, and applesauce, and vanilla ice cream. She hasn't gagged on any of it, but she does show her preferences, like goldfish, Tim's Cascade Sweet Maui Onion Rings, and Trader Joe's Veggie sticks. It sure is a lot more than she was eating a month ago.
She's making more sounds too, some of which are charming, others that are less so. One new method of getting Mommy's attention is to open her mouth like a howler monkey and roar from the bottom of both lungs. No doubt she picked up this communication tool from one of her brothers. She also is saying "Hey, hey, hey," alot. She tries different volumes, and different sing-song voices...but still no words. I had a dream a few nights ago that she said her first word, "kangaroo." Three syllables would be pretty amazing, huh? You never know.
Jean
"By perseverance the snail reached the ark." Charles Spurgeon
Saturday, February 2, 2008
Groundhog Day
Punxsutawney Phil woke up this morning and saw his shadow, so I guess we'll have 6 more weeks of winter. I hope the cold I've been nursing this week will be gone by then. Annie hasn't gotten it yet, and neither has anyone else--pray that no one does, because it's a doozy. I'm sure some of you can relate. Oh, I forgot there's one more in our house who's sick. Our dog, Millie, has developed an infection in her toes as a result of wearing this leg splint for 4 weeks. So when we give Annie her medicine in the morning, Millie gets her antibiotic. Only in America, huh?
This past Thursday we finished our month-long boost of therapy from Rehab without Walls. They provided intensive in-home OT/PT/Speech services to get Annie up and "running" after her post-hospital slump. She has regained strength and balance in her walking, and more use of her right hand, but the major gain this month was her eating voluntarily and almost voraciously for the first time in a year. As before, we hate to say goodbye to BJ, Debbie & Beth--her good friends/therapists who have worked with her since last spring.
Next week we start back at Cascade Children's Therapy. Annie will be fitted for a foot orthotic there, which should help her with her standing and walking stability. And, she'll continue working on weight-bearing in her arms with Kathy & Cindy, more speech/feeding therapy with Claudia, and more walking with Janine. It'll be good to get out of the house again--hopefully the 6 more weeks of winter won't mean 6 more weeks of snow!
Well--I've used up my allotment of computer time. I need to get all the Sullivan children up and at 'em this Saturday morning. It's sunny today in Seattle, and I feel a housecleaning bug coming on. The kids will be thrilled to wake up to that.
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
This past Thursday we finished our month-long boost of therapy from Rehab without Walls. They provided intensive in-home OT/PT/Speech services to get Annie up and "running" after her post-hospital slump. She has regained strength and balance in her walking, and more use of her right hand, but the major gain this month was her eating voluntarily and almost voraciously for the first time in a year. As before, we hate to say goodbye to BJ, Debbie & Beth--her good friends/therapists who have worked with her since last spring.
Next week we start back at Cascade Children's Therapy. Annie will be fitted for a foot orthotic there, which should help her with her standing and walking stability. And, she'll continue working on weight-bearing in her arms with Kathy & Cindy, more speech/feeding therapy with Claudia, and more walking with Janine. It'll be good to get out of the house again--hopefully the 6 more weeks of winter won't mean 6 more weeks of snow!
Well--I've used up my allotment of computer time. I need to get all the Sullivan children up and at 'em this Saturday morning. It's sunny today in Seattle, and I feel a housecleaning bug coming on. The kids will be thrilled to wake up to that.
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
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