You know when your water breaks, you're going to have a baby. It could be in an hour or in 3 days, but it's going to happen. And when that baby starts babbling, talking is not far behind. So Annie has added quite a few new sounds to her repetoire in the last few days. Ba, va, the--as in the "th" sound--and some others that I forget now.
Brother Jack was complementing her yesterday on the good job she was doing, and she repeated back, "jog," I guess for the word "job." These things are happening, and we keep thinking, "Did she really do that, or is it just our imagination??"
Eating is still slow, but she ate some Cheetos yesterday--one of the four basic food colors. She also tried some scrambled eggs tonight, but since they don't melt in her mouth but kind of collect in the back of her throat, we almost saw them (and everything else in her stomach) again. Almost.
BTW-the Mic-Key is working great. Different, but good.
Peter-kisses back to you, too. Maurita--hugs to E & L. Rebecca--see you in a few. Sue, Susan, & Su--thanks for your cheers! Pam & Terri--we'll be calling you guys if the Mic-key malfunctions. Gretchen--you'll bring the pizza, right?
Jean
Our mouths were filled with laughter,
our tongues with songs of joy.
Then it was said among the nations,
"The LORD has done great things for them." Psalm 126:2
Thursday, July 31, 2008
Monday, July 28, 2008
Mission accomplished
Today after the nurses took the Bard g-tube out and replaced it with a Mic-key button they said, "Wow--Annie did really well--we do this all the time, and she didn't kick, hit or scream!" (They wait until AFTER they're done before they tell you all the war stories.) I thought she did well, too, and I have to tell you, we felt your prayers. The whole thing was said and done in about a minute, and her tears dried up in about 2 minutes. Thank You, Lord. The Mic-Key is much less of a bother to change--and virtually painless. So glad we made the change.
Jean
Jean
Saturday, July 26, 2008
One month--no seizures!
Today marks one month since Annie's last seizure. She continues to show more mobility, more strength, more giggling-- and more progress every day. The latest thing I've noticed is how she quickly she moves her arms out of her carseat straps when I open the buckle, and how I need to be ready to catch 50 lbs. right now. She's also flinging her toys around--especially with her left arm. I started putting 1/2 lb. weights on her wrists for short periods of time during the day a week or so ago, and the results are pretty dramatic. Maybe they'll work for me too.
Anyway, remember the g-tube saga of a few months ago? Well, the new g-tube broke about a week ago and needs to be replaced. We're going to try a different style--hopefully one that is less problematic--and we're going to try to get the thing done in clinic rather than in surgery. Please pray for us on Monday that the old g-tube comes out and the new one goes in quickly, painlessly, and with no complications.
On the food front, last week I was feeding her Pringles & veggie sticks, and she was picking the stuff up, putting it in her mouth, chewing, swallowing, and looking for more. I sat there and watched her chow down for at least 5 minutes. At some point while I was watching her, I thought, Gee--this is the way she USED to eat. It was weird. Of course, she hasn't repeated that voracious appetite since that time, but she has continued to eat small amounts. Only 3 more weeks of the keto-diet and we can freely experiment with any crunchy carb we can find.
Please keep praying for her speech to come back. She understands so much of what we say, and responds to commands, but I really want her to TALK!!!!
Jean
O Lord, open my lips,
And my mouth shall show forth Your praise. Psalm 51:15
Anyway, remember the g-tube saga of a few months ago? Well, the new g-tube broke about a week ago and needs to be replaced. We're going to try a different style--hopefully one that is less problematic--and we're going to try to get the thing done in clinic rather than in surgery. Please pray for us on Monday that the old g-tube comes out and the new one goes in quickly, painlessly, and with no complications.
On the food front, last week I was feeding her Pringles & veggie sticks, and she was picking the stuff up, putting it in her mouth, chewing, swallowing, and looking for more. I sat there and watched her chow down for at least 5 minutes. At some point while I was watching her, I thought, Gee--this is the way she USED to eat. It was weird. Of course, she hasn't repeated that voracious appetite since that time, but she has continued to eat small amounts. Only 3 more weeks of the keto-diet and we can freely experiment with any crunchy carb we can find.
Please keep praying for her speech to come back. She understands so much of what we say, and responds to commands, but I really want her to TALK!!!!
Jean
O Lord, open my lips,
And my mouth shall show forth Your praise. Psalm 51:15
Sunday, July 20, 2008
New Pics
Check out the new pictures below left. I'll try to keep adding more--Bill tells me that moving them from the camera to the computer is "real easy." Like figuring out how the camera worked was "real easy." What he doesn't know is that I'm "real slow."
Anyway--Annie added a new skill yesterday. I was putting her shirt on her, and she pushed her right arm--which she doesn't use as much as her left--through the armhole without being prompted. Then, when I was changing her into her pj's, I said, "pull," and she pulled the right arm out of the armhole. These are big deals, not only because her arm is working, but that it is doing what her brain is telling it to do. So many connections need to be made for ordinary movements, and because her brain isn't constantly being interrupted by seizures now, the connections are RE-connecting!
Jean
"For with God nothing will be impossible.” Luke 1:37
Anyway--Annie added a new skill yesterday. I was putting her shirt on her, and she pushed her right arm--which she doesn't use as much as her left--through the armhole without being prompted. Then, when I was changing her into her pj's, I said, "pull," and she pulled the right arm out of the armhole. These are big deals, not only because her arm is working, but that it is doing what her brain is telling it to do. So many connections need to be made for ordinary movements, and because her brain isn't constantly being interrupted by seizures now, the connections are RE-connecting!
Jean
"For with God nothing will be impossible.” Luke 1:37
Friday, July 18, 2008
Say cheese
So I snagged the tooth. Of course, the new one is coming in at a 90 degree angle, like a dividing line inside her mouth. And still no seizures since June 26th.
I've taken her out to ride her bike more frequently, and last week, I noticed that she's peddling more. Yesterday while she was riding, she felt the handle bar,almost as if to hold on, once with one hand, and then the other. Little by little.
Her Special Tomato "Height Right" highchair was delivered today. I wish I would have gotten it for her a year ago. It has an adjustable seat and footrest, and the thing should last a long time. This evening I went to Trader Joe's to get more veggie sticks. Guess what we're doing tomorrow?
Jean
Other than a dimple in a cute little chin,
What's more adorable than a toothless grin?
~Azu "Betty" Espezia
I've taken her out to ride her bike more frequently, and last week, I noticed that she's peddling more. Yesterday while she was riding, she felt the handle bar,almost as if to hold on, once with one hand, and then the other. Little by little.
Her Special Tomato "Height Right" highchair was delivered today. I wish I would have gotten it for her a year ago. It has an adjustable seat and footrest, and the thing should last a long time. This evening I went to Trader Joe's to get more veggie sticks. Guess what we're doing tomorrow?
Jean
Other than a dimple in a cute little chin,
What's more adorable than a toothless grin?
~Azu "Betty" Espezia
Monday, July 14, 2008
Still counting...
We're almost up to 3 weeks of no seizures. I probably won't stop counting until we get to 6 months. Her little personality keeps coming out with more laughing, "talking," and yelling. She pretty much has an opinion about everything now. Assertiveness has totally replaced passivity. Yippee.
Annie's difficulty communicating seems to be causing her more frustration, which, I guess, is a good thing. This morning when Bill went in to her room to give her her medicine, Annie looked up at him and made a new sound, then had this expression on her face like, "Why can't my mouth work?" She is very chatty during the morning routine, but just seems frustrated when no words come out.
Tomorrow we go to the feeding therapist to see what our next steps are in getting her to eat food. Hopefully her loose bottom front tooth will come out before our appointment. I'm just freaked that it'll fall out and she'll swallow it. But I'm more freaked about going in there after it. Bill & I tried to extract it yesterday, but the whole process was too traumatic for all of us and the neighborhood, so I gave up.
Jean
He has put a new song in my mouth—
Praise to our God;
Many will see it and fear,
And will trust in the LORD. Psalm 40:3
Annie's difficulty communicating seems to be causing her more frustration, which, I guess, is a good thing. This morning when Bill went in to her room to give her her medicine, Annie looked up at him and made a new sound, then had this expression on her face like, "Why can't my mouth work?" She is very chatty during the morning routine, but just seems frustrated when no words come out.
Tomorrow we go to the feeding therapist to see what our next steps are in getting her to eat food. Hopefully her loose bottom front tooth will come out before our appointment. I'm just freaked that it'll fall out and she'll swallow it. But I'm more freaked about going in there after it. Bill & I tried to extract it yesterday, but the whole process was too traumatic for all of us and the neighborhood, so I gave up.
Jean
He has put a new song in my mouth—
Praise to our God;
Many will see it and fear,
And will trust in the LORD. Psalm 40:3
Monday, July 7, 2008
Twelve days of no seizures!
I believe this is a record. I can't remember the last time she went this long with no seizures. Annie is so chatty, smiley, and yesterday she even started making kissing noises with her lips. She is just so darn cute. (Yeah, your kids are too.) I keep thinking I need to do another video.
I've been putting her in the walker-gait trainer for a little longer each time, and she's getting the hang of it, with less screaming. "Less" being the operative word. Anyway--the gait trainer thing is going to work I think, at least to keep her upright and exercising her legs.
This evening, Bill took her for a stroll around the church while I watered some plants, and after we got home and I carried her back into the house, I asked Annie, "Where is that pretty girl in the mirror?" She turned to look behind her and then quickly looked in front of her and found the mirror, and that little blond, blue-eyed girl. For months, we would stand in the entryway and she showed absolutely no interest in the mirror or who was in it. Now, it is so exciting to SEE her look and comprehend what I'm saying.
I'll tell you, after spending months of feeding information into that little head, and not knowing if any of it was sinking in, that ready smile, bright eyes, and happy response is such an answer to prayer. I think that as she begins to eat, and move her tongue around, she'll add to her repetoire of sounds, and then begin to talk. Her sounds are changing as it is, and she is beginning to mimic sounds, volume, and rhythm on command. She also gets completely quiet and listens carefully when I sing her favorite songs. (Or maybe she's just hoping I'll stop.) Anyway--huge steps, no seizures.
Jean
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. 1 Corinthians 1:10-11
I've been putting her in the walker-gait trainer for a little longer each time, and she's getting the hang of it, with less screaming. "Less" being the operative word. Anyway--the gait trainer thing is going to work I think, at least to keep her upright and exercising her legs.
This evening, Bill took her for a stroll around the church while I watered some plants, and after we got home and I carried her back into the house, I asked Annie, "Where is that pretty girl in the mirror?" She turned to look behind her and then quickly looked in front of her and found the mirror, and that little blond, blue-eyed girl. For months, we would stand in the entryway and she showed absolutely no interest in the mirror or who was in it. Now, it is so exciting to SEE her look and comprehend what I'm saying.
I'll tell you, after spending months of feeding information into that little head, and not knowing if any of it was sinking in, that ready smile, bright eyes, and happy response is such an answer to prayer. I think that as she begins to eat, and move her tongue around, she'll add to her repetoire of sounds, and then begin to talk. Her sounds are changing as it is, and she is beginning to mimic sounds, volume, and rhythm on command. She also gets completely quiet and listens carefully when I sing her favorite songs. (Or maybe she's just hoping I'll stop.) Anyway--huge steps, no seizures.
Jean
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. 1 Corinthians 1:10-11
Wednesday, July 2, 2008
Feeding therapy update
The feeding therapy appointment at Children's went well. We identified a couple of goals before actually eating:
1. Increase rate of g-tube feedings, so we can space them further apart and thereby create appetite. Right now, the feedings are sloooow (because she STILL is gaggy), and she is being fed about 3 hours, 3 times a day. Getting that down to 1 1/2 hours a day will take much prayer.
2. Nix the gagginess & vomiting. People who vomit alot don't want to put food in their mouths. Go figure.
3. Sit her at the table 3x a day. Practical point: ditch the highchair that doesn't fit her and get an appropriate chair that can sit up to the table, but also support her.
If this sounds like deja-vu all over again, we have been working on relearning eating since last summer, in fits and starts, as her medical condition allowed. It is frustrating to begin again, and again, and again. What can I say? Someday we'll be in heaven, and I'll sit beside Annie at the wedding supper of the Lamb. And she won't have a g-tube.
As always--thanks SO much for your prayers. You guys share in her victories.
Jean
1. Increase rate of g-tube feedings, so we can space them further apart and thereby create appetite. Right now, the feedings are sloooow (because she STILL is gaggy), and she is being fed about 3 hours, 3 times a day. Getting that down to 1 1/2 hours a day will take much prayer.
2. Nix the gagginess & vomiting. People who vomit alot don't want to put food in their mouths. Go figure.
3. Sit her at the table 3x a day. Practical point: ditch the highchair that doesn't fit her and get an appropriate chair that can sit up to the table, but also support her.
If this sounds like deja-vu all over again, we have been working on relearning eating since last summer, in fits and starts, as her medical condition allowed. It is frustrating to begin again, and again, and again. What can I say? Someday we'll be in heaven, and I'll sit beside Annie at the wedding supper of the Lamb. And she won't have a g-tube.
As always--thanks SO much for your prayers. You guys share in her victories.
Jean
Six days with no seizures! Lots of smiles, giggles, and responsiveness. Annie's also practiced standing in the gait trainer a couple of times a day for the last few days, and she does seem to be gaining strength in her legs to push up to stand. I put her in it last evening, and while I went into the kitchen, Bill said she turned in it to see where I was going. So the trick is to leave the room, huh?
Today is our appointment with the feeding therapist. I'll let you know how it goes.
Jean
Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it. Therefore, strengthen your feeble arms and weak knees. "Make level paths for your feet," so that the lame may not be disabled, but rather healed.
Hebrews 12:10-13
Today is our appointment with the feeding therapist. I'll let you know how it goes.
Jean
Our fathers disciplined us for a little while as they thought best; but God disciplines us for our good, that we may share in his holiness. No discipline seems pleasant at the time, but painful. Later on, however, it produces a harvest of righteousness and peace for those who have been trained by it. Therefore, strengthen your feeble arms and weak knees. "Make level paths for your feet," so that the lame may not be disabled, but rather healed.
Hebrews 12:10-13
Subscribe to:
Posts (Atom)