We're on the brink of getting into see the gastroenterologist. Meanwhile, Annie is now lethargic, having frequent seizures, and still gaggy. She does have periods of rallying--laughing, and "talking," but then she goes right back into lethargy. I think it may be a new medicine I started giving her for the nausea.
I know this is monotonous. I really appreciate your prayers.
Jean
Saturday, May 31, 2008
Tuesday, May 27, 2008
Stop me if you've heard this one...
So I have this new theory, or maybe it's an old one that I'm recycling. I think Annie's nausea/vomiting deal is "delayed gastric emptying". I should re-read all my posts (ick) and see how many times I've floated this hypothesis. You know, I've been ruminating on this problem for a year, so I forget what I've already said, or thought through, or what ideas we've discarded. But I'm going with this one today: delayed gastric emptying.
The latest reason I think this is because we've been giving her double hydrocortisone, and she's still gaggy. So, the underlying problem, at least this time, is not lack of steroids. And, the extra fat in the ketogenic diet is known to make any problems with digestion even worse. Plus, even when we discourage her sticking her fingers down her mouth, she still gags. It just seems to always be right there. Lastly, I looked on the internet--so it must be true--and saw that oftentimes brain injury can cause damage to the vagus nerve, the nerve that runs from brain to butt and helps move things along the digestive tract.
My life is pretty simple: spend 90% of my waking minutes trying to figure out why my kid pukes. There's even a website called momswearingpuke.com--so I guess I'm in good company. Anyway, hopefully we'll get in to see the gastroenterologist soon. Now there's a good use of 10+ years of school, huh? Those doctors not only enjoy their own kid's groceries, they study other kids' gut contents too.
One thing we haven't considered yet is the possibility of quitting the ketogenic diet, so she doesn't need to digest the excess fat. But, here are my choices right now: do I want vomiting, or do I want seizures?
On a positive note, though, Annie had a good day at school, and engaged in a reciprocal conversation with both her OT, Cynthia, and her nurse, Moira. Not sure what they were all conversing about, but it was BACK and FORTH. Praise the Lord for those connections!
Jean
The latest reason I think this is because we've been giving her double hydrocortisone, and she's still gaggy. So, the underlying problem, at least this time, is not lack of steroids. And, the extra fat in the ketogenic diet is known to make any problems with digestion even worse. Plus, even when we discourage her sticking her fingers down her mouth, she still gags. It just seems to always be right there. Lastly, I looked on the internet--so it must be true--and saw that oftentimes brain injury can cause damage to the vagus nerve, the nerve that runs from brain to butt and helps move things along the digestive tract.
My life is pretty simple: spend 90% of my waking minutes trying to figure out why my kid pukes. There's even a website called momswearingpuke.com--so I guess I'm in good company. Anyway, hopefully we'll get in to see the gastroenterologist soon. Now there's a good use of 10+ years of school, huh? Those doctors not only enjoy their own kid's groceries, they study other kids' gut contents too.
One thing we haven't considered yet is the possibility of quitting the ketogenic diet, so she doesn't need to digest the excess fat. But, here are my choices right now: do I want vomiting, or do I want seizures?
On a positive note, though, Annie had a good day at school, and engaged in a reciprocal conversation with both her OT, Cynthia, and her nurse, Moira. Not sure what they were all conversing about, but it was BACK and FORTH. Praise the Lord for those connections!
Jean
Friday, May 23, 2008
Cinderellala
Annie used to say, "Mom, my name isn't Annie, it's Cinderellela!!" She loved to dress up in her Cinderella dress and pretend she was a fairy princess.
This evening, after putting Annie to bed, I was watching a Youtube video of Christian songwriter and singer, Steven Curtis Chapman and his 5 year old daughter, Maria. Many of you know that the singer's daughter was killed this week after a tragic car accident in the family's driveway. His newest song, "Cinderella," was inspired by his two youngest daughters, one of whom was Maria, and in it, he talks about how quickly children grow up and leave. We don't know how long our children are going to stay in our house, and we really don't know how long they're going to be here on earth. But how good it is when they put their trust in Jesus, that if their life here on earth is brief, we have that assurance that they are in heaven. Then those verses in 1 Corinthians resonate in our hearts:
So when this corruptible shall have put on incorruption, and this mortal shall have put on immortality, then shall be brought to pass the saying that is written, Death is swallowed up in victory.
O death, where is thy sting?
O grave, where is thy victory?
The sting of death is sin; and the strength of sin is the law. But thanks be to God, which giveth us the victory through our Lord Jesus Christ.
1 Corinthians 15:54-57
What a hope we have! A rock-solid assurance that this life is not the end!
Jean
PS. We're working on scheduling a Gastroenteralogy clinic consult...which may or may not help us figure this nausea/gagging/vomiting out. She's had only about 2 seizures a day, and continues to laugh more, and, unfortunately, cry more. More awareness means more frustration. I saw a look in her eyes last night that was so frustrated--like, "Mom, I want to TALK!!!!" But--it is progress.
This evening, after putting Annie to bed, I was watching a Youtube video of Christian songwriter and singer, Steven Curtis Chapman and his 5 year old daughter, Maria. Many of you know that the singer's daughter was killed this week after a tragic car accident in the family's driveway. His newest song, "Cinderella," was inspired by his two youngest daughters, one of whom was Maria, and in it, he talks about how quickly children grow up and leave. We don't know how long our children are going to stay in our house, and we really don't know how long they're going to be here on earth. But how good it is when they put their trust in Jesus, that if their life here on earth is brief, we have that assurance that they are in heaven. Then those verses in 1 Corinthians resonate in our hearts:
So when this corruptible shall have put on incorruption, and this mortal shall have put on immortality, then shall be brought to pass the saying that is written, Death is swallowed up in victory.
O death, where is thy sting?
O grave, where is thy victory?
The sting of death is sin; and the strength of sin is the law. But thanks be to God, which giveth us the victory through our Lord Jesus Christ.
1 Corinthians 15:54-57
What a hope we have! A rock-solid assurance that this life is not the end!
Jean
PS. We're working on scheduling a Gastroenteralogy clinic consult...which may or may not help us figure this nausea/gagging/vomiting out. She's had only about 2 seizures a day, and continues to laugh more, and, unfortunately, cry more. More awareness means more frustration. I saw a look in her eyes last night that was so frustrated--like, "Mom, I want to TALK!!!!" But--it is progress.
Saturday, May 17, 2008
My yoke is easy
God often brings to mind the verses in Matthew 11:28-30: "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light." They're my "theme" verses for this time in my life, I think. My friend, Trisha, told me to think of it like Jesus is taking the brunt of the weight of the "yoke," and all I need to do is walk beside Him and learn. I'm practicing the walking and learning.
My problem-or at least, ONE of my problems, is that the scope of taking care of Annie has so many layers, I don't know which one to peel off first. I've been focusing on this ketogenic diet for the last three months, but her seizures are just one layer. There's the relearning to walk part, and walker/gait trainer that was ordered 6 weeks ago didn't magically appear, so I need to follow that paper trail. Then there's the eating thing that's stalled again, because her nausea and vomiting is a major roadblock to me helping her try any new food-that's-on-the-Ketogenic diet.
Before I go on too long, I have to say that this week HAS been better than last week. She had an alert, productive week at school, and her seizures are way down--I may have seen one today. She has been protesting more about anything she doesn't like, though, which I guess is a good thing. The down side to that, though, is that she is downstairs yelling about something or other, and I can tell I had better sign off for now!
Jean
My problem-or at least, ONE of my problems, is that the scope of taking care of Annie has so many layers, I don't know which one to peel off first. I've been focusing on this ketogenic diet for the last three months, but her seizures are just one layer. There's the relearning to walk part, and walker/gait trainer that was ordered 6 weeks ago didn't magically appear, so I need to follow that paper trail. Then there's the eating thing that's stalled again, because her nausea and vomiting is a major roadblock to me helping her try any new food-that's-on-the-Ketogenic diet.
Before I go on too long, I have to say that this week HAS been better than last week. She had an alert, productive week at school, and her seizures are way down--I may have seen one today. She has been protesting more about anything she doesn't like, though, which I guess is a good thing. The down side to that, though, is that she is downstairs yelling about something or other, and I can tell I had better sign off for now!
Jean
Saturday, May 10, 2008
Happy Mother's Day
Tomorrow is my favorite day--not counting Christmas and Easter and my birthday--of the whole year. I'm glad God has given me the gift of seven wonderful children, and that there's a day when I can celebrate being a mom and they can serve me. ;-) All kidding aside--each one is a blessing, and I'm thankful for each unique personality, and what they bring to our family and to their corners of the world.
A quick update--Annie is doing a bit better. I did give her more hydrocortisone yesterday--I'm thinking maybe her baseline dose may be higher than before. She perked up alot and isn't as gaggy--but still a little gaggy today. Last evening, she was sitting playing with her twirly toy that talks and sings, and when it giggled, she started laughing too--music to my ears! Her favorite noise was when the horse neighed--then she'd really have a chuckle. I love her laugh. Time for another video, huh?
Thanks again for your prayers--God is answering them.
Jean
Then our mouth was filled with laughter,
And our tongue with singing.
Then they said among the nations,
“The LORD has done great things for them.” Psalm 126:2
A quick update--Annie is doing a bit better. I did give her more hydrocortisone yesterday--I'm thinking maybe her baseline dose may be higher than before. She perked up alot and isn't as gaggy--but still a little gaggy today. Last evening, she was sitting playing with her twirly toy that talks and sings, and when it giggled, she started laughing too--music to my ears! Her favorite noise was when the horse neighed--then she'd really have a chuckle. I love her laugh. Time for another video, huh?
Thanks again for your prayers--God is answering them.
Jean
Then our mouth was filled with laughter,
And our tongue with singing.
Then they said among the nations,
“The LORD has done great things for them.” Psalm 126:2
Wednesday, May 7, 2008
There was an old woman...
So--the reason I haven't posted for so long is I have lots of kids. I actually have 6 of these blogs running--one for each kid--and it's just really hard to keep them all current. It's a 24-hour job. I do it in my sleep.
Okay, I don't have 6 blogs.
Annie is still gagging and throwing up. She threw up yesterday at school and today. I have no idea why we're here again. I don't think it's a lack of hydrocortisone, because I tanked her up with it today, and she was still gaggy. I guess I think it might simply be the fat in the ketogenic diet, but I'm reluctant to admit that to myself, because if this diet doesn't work, that's not good. I think. I'm going to talk to the dietician tomorrow and see if we can come up with some more ideas. I thought it might be her vitamins making her nauseous, but I didn't give them to her this morning, and she threw up anyway.
They say to give the Ketogenic diet a 3-month trial before you throw in the towel. Well, if she can't tolerate the fat--if that is, in fact, why she's gaggy, I'm not sure what the next step is.
More prayers!
Jean
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. James 1:2-3
Okay, I don't have 6 blogs.
Annie is still gagging and throwing up. She threw up yesterday at school and today. I have no idea why we're here again. I don't think it's a lack of hydrocortisone, because I tanked her up with it today, and she was still gaggy. I guess I think it might simply be the fat in the ketogenic diet, but I'm reluctant to admit that to myself, because if this diet doesn't work, that's not good. I think. I'm going to talk to the dietician tomorrow and see if we can come up with some more ideas. I thought it might be her vitamins making her nauseous, but I didn't give them to her this morning, and she threw up anyway.
They say to give the Ketogenic diet a 3-month trial before you throw in the towel. Well, if she can't tolerate the fat--if that is, in fact, why she's gaggy, I'm not sure what the next step is.
More prayers!
Jean
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. James 1:2-3
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