gijanet
Well-known member
well, I was gonna say "stay of execution," but just can't bring myself to do that!
Well, gang! I am overdue for an update on Katie's PC visit, but I was actually afraid to put it in writing for fear I might jinx it. So, shhhh! I'm whispering!
For the first time in over a year, we received a tiny bit of good news at Katie's PC visit. She was satting at 83!! We all know this vacillates quite a bit, but we were 77 two months ago........and the month before that and the month before that! And the really exciting news is (drumroll here)..........her common AV valve regurgitation looked SLIGHTLY better than last visit!!! Dr. W. doesn't want to get my hopes up that this trend might continue, but, of course, you know I'll get them up anyway. Overall, though, he was very pleased. The good news is that we got a three month hiatus. We don't have to go back until January......so no surgery before Christmas anyway!!!! YAY!!! I do so wish I could say no surgery - period, though. So, while this is not quite the miracle I have been praying for, it is at least a step in the right direction.
On a kind of sad note, while we were there, I also had Dr. W. explain to Katie that her heart is not going to break into pieces. Katie has been very concerned about this lately. One of her little friends had pushed her in the chest a couple of weeks ago - not hard, but Katie has been wanting to go to the heart doctor's ever since, and I couldn't figure out why. Then she finally blurted out one day that her heart was going to break into pieces. Then everything fell into place for me, the poor kid. She has been worrying all of this time that her heart was simply going to shatter, so she feels better now that her heart doctor explained that this just wasn't going to happen. It never would have dawned on me that she was worrying about this!! Guess I won't mention the words "broken heart" anymore..........
Now, on a sadder note, the down side: I e-mailed Dr.Bove, her surgeon in Michigan, a couple of weeks ago, and he confirmed that we are most likely looking at a valve replacement (yes, mechanical! With coumadin.....yuk!yuk!yuk!) and the extracardiac fontan sometime soon - definitely within this next year. Dr. Bove would like to wait one year from Katie's last OHS in April if her ventricles hold up, so I guess if things go "well" we are looking at March/April/May timeframe for our fourth heart surgery.........God, we are averaging one a year! Aren't we the lucky ones?? (Now you see why I quit buying lottery tickets a good while back!) This impending surgery looming over our heads haunts me to no end, BUT, that was before this "slightly better" diagnosis, so do keep the prayers up!!! THEY ARE TRULY APPRECIATED!!! Who knows? Maybe we will escape that blasted mechanical valve for a few more years if that valve keeps getting "slightly better" each visit.
As for Katie, she is doing incredibly well. Still quite the little imp.
No more stripping in Walmart and whizzing wet pullups by my head, thank God, just bare butting it in the water park. We caught Katie with the phone a few days ago just busily punching in numbers. (She had pulled a chair over to the phone stand and managed to get the phone down off the hook.) I asked her who she was calling. She said, "The police, to put Trip in jail for being mean to me. He make me get out of his room." Geeezzzz............if she ever catches wind of 911, I am in deep poopoo here...........
Katie got hold of my purse and managed to dump everything out it - and I do mean everything!!! She found a lipstick - longwear again, no less - and proceeded to get it on her nose and chin and then all over her legs and my purse. I finally found my driver's license over on the couch and am still missing a credit card - hope she is truly playing Blues Clues on the computer and not ordering from toys'rus. When she tired of that, she put her rocking horse up on the coffee table and gave it a bath by dumping three or four cups of water on it - course there was water everywhere...................sigh! All of this in the span of about ten minutes. While I was busy cleaning up this mess, she got several cans of Chef Boyardee out of the cabinet (our gourmet cuisine here! Heehee!), lined them up on the kitchen floor, and was bowling
them down with a basketball.
Then the other night she insists I come into the living room and watch
her juggle. She grabbed four little blocks, two in each hand, and then
asked me if I was ready. She even made me sit down for the "show." I said yes, I was ready. Then she just throws the four blocks up in the air, made absolutely no attempt to catch them, shrugged her shoulders, and said, "Well, guess me have to do me some more jugglin' practice! Can me go to jugglin' school?" The little dickens....
She bumped her head on the couch at the sitter's house Friday and got a
goose egg right on the top of her head. I couldn't kiss the top of her head
because she was afraid that I would get the egg in my mouth. Then she
wanted to go to the hospital so they could crack the egg open and get it
out of her head.............
I took Trip and Katie to the zoo Sunday, and Katie has been a lion ever since. I had to put a bowl of water on the floor so she could get a drink. She scattered her fruit snacks on the floor so she could eat them like a lion with no hands. She even wanted to sleep on the living room floor 'cuz lions don't sleep in beds. I finally gave up and let her fall asleep on the floor. Then I tucked my little lion in bed.
Anyway, the list could go on forever...... It's not enough that this
child of mine age me ten years during every surgery..............she
insists on doing it on a daily basis! The little imp!
BTW, Trip is doing well, too. He started the sixth grade this year.
Gosh, I can't believe it. He has decided to take up the sax (God, where
did I put those military earplugs of mine??). He is still in Boy Scouts and has now decided that he wants to go to Australia with the People to People
group....although the jury is still out on this one. Cost will be a
huge factor besides other mommy issues.
Well, this is a book................and all you wanted was a simple
update............heehee! That'll teach ya! Thanks for reading our book
and for all of your prayers. Do please keep them up. Hugs.
Take care and God bless, Janet, Trip (12 HH & one heckuva Boy Scout),
Katelyn (AKA Katie, 11-19-00, Heterotaxy w/situs ambiguous,
dextrocardia, polysplenia, a complete AVSD, DORV, TGV w/L-looped
ventricles (L-TGV), BSVC, PS, IIVC, and a mod. leaking AV valve; BT
shunt @ 2 weeks at Cook Children's; cath @ 3 months; Bilateral
Bidirectional Glenn @ 12 months at UofM; failed AV valve repair on April
13th, 2004 at UofM; next OHS tentatively scheduled for Mar/Apr '05; a
real little toot, but absolutely adorable!), & Don (DH) Arlington, TX
www.carepages.com carepage name: KatelynSteffen
__________________
Janet, mom to Trip & Katie (my CHD child)11-19-00; heterotaxy syndrome w/dextrocardia, situs ambiguous, polysplenia
Well, gang! I am overdue for an update on Katie's PC visit, but I was actually afraid to put it in writing for fear I might jinx it. So, shhhh! I'm whispering!
For the first time in over a year, we received a tiny bit of good news at Katie's PC visit. She was satting at 83!! We all know this vacillates quite a bit, but we were 77 two months ago........and the month before that and the month before that! And the really exciting news is (drumroll here)..........her common AV valve regurgitation looked SLIGHTLY better than last visit!!! Dr. W. doesn't want to get my hopes up that this trend might continue, but, of course, you know I'll get them up anyway. Overall, though, he was very pleased. The good news is that we got a three month hiatus. We don't have to go back until January......so no surgery before Christmas anyway!!!! YAY!!! I do so wish I could say no surgery - period, though. So, while this is not quite the miracle I have been praying for, it is at least a step in the right direction.
On a kind of sad note, while we were there, I also had Dr. W. explain to Katie that her heart is not going to break into pieces. Katie has been very concerned about this lately. One of her little friends had pushed her in the chest a couple of weeks ago - not hard, but Katie has been wanting to go to the heart doctor's ever since, and I couldn't figure out why. Then she finally blurted out one day that her heart was going to break into pieces. Then everything fell into place for me, the poor kid. She has been worrying all of this time that her heart was simply going to shatter, so she feels better now that her heart doctor explained that this just wasn't going to happen. It never would have dawned on me that she was worrying about this!! Guess I won't mention the words "broken heart" anymore..........
Now, on a sadder note, the down side: I e-mailed Dr.Bove, her surgeon in Michigan, a couple of weeks ago, and he confirmed that we are most likely looking at a valve replacement (yes, mechanical! With coumadin.....yuk!yuk!yuk!) and the extracardiac fontan sometime soon - definitely within this next year. Dr. Bove would like to wait one year from Katie's last OHS in April if her ventricles hold up, so I guess if things go "well" we are looking at March/April/May timeframe for our fourth heart surgery.........God, we are averaging one a year! Aren't we the lucky ones?? (Now you see why I quit buying lottery tickets a good while back!) This impending surgery looming over our heads haunts me to no end, BUT, that was before this "slightly better" diagnosis, so do keep the prayers up!!! THEY ARE TRULY APPRECIATED!!! Who knows? Maybe we will escape that blasted mechanical valve for a few more years if that valve keeps getting "slightly better" each visit.
As for Katie, she is doing incredibly well. Still quite the little imp.
No more stripping in Walmart and whizzing wet pullups by my head, thank God, just bare butting it in the water park. We caught Katie with the phone a few days ago just busily punching in numbers. (She had pulled a chair over to the phone stand and managed to get the phone down off the hook.) I asked her who she was calling. She said, "The police, to put Trip in jail for being mean to me. He make me get out of his room." Geeezzzz............if she ever catches wind of 911, I am in deep poopoo here...........
Katie got hold of my purse and managed to dump everything out it - and I do mean everything!!! She found a lipstick - longwear again, no less - and proceeded to get it on her nose and chin and then all over her legs and my purse. I finally found my driver's license over on the couch and am still missing a credit card - hope she is truly playing Blues Clues on the computer and not ordering from toys'rus. When she tired of that, she put her rocking horse up on the coffee table and gave it a bath by dumping three or four cups of water on it - course there was water everywhere...................sigh! All of this in the span of about ten minutes. While I was busy cleaning up this mess, she got several cans of Chef Boyardee out of the cabinet (our gourmet cuisine here! Heehee!), lined them up on the kitchen floor, and was bowling
them down with a basketball.
Then the other night she insists I come into the living room and watch
her juggle. She grabbed four little blocks, two in each hand, and then
asked me if I was ready. She even made me sit down for the "show." I said yes, I was ready. Then she just throws the four blocks up in the air, made absolutely no attempt to catch them, shrugged her shoulders, and said, "Well, guess me have to do me some more jugglin' practice! Can me go to jugglin' school?" The little dickens....
She bumped her head on the couch at the sitter's house Friday and got a
goose egg right on the top of her head. I couldn't kiss the top of her head
because she was afraid that I would get the egg in my mouth. Then she
wanted to go to the hospital so they could crack the egg open and get it
out of her head.............
I took Trip and Katie to the zoo Sunday, and Katie has been a lion ever since. I had to put a bowl of water on the floor so she could get a drink. She scattered her fruit snacks on the floor so she could eat them like a lion with no hands. She even wanted to sleep on the living room floor 'cuz lions don't sleep in beds. I finally gave up and let her fall asleep on the floor. Then I tucked my little lion in bed.
Anyway, the list could go on forever...... It's not enough that this
child of mine age me ten years during every surgery..............she
insists on doing it on a daily basis! The little imp!
BTW, Trip is doing well, too. He started the sixth grade this year.
Gosh, I can't believe it. He has decided to take up the sax (God, where
did I put those military earplugs of mine??). He is still in Boy Scouts and has now decided that he wants to go to Australia with the People to People
group....although the jury is still out on this one. Cost will be a
huge factor besides other mommy issues.
Well, this is a book................and all you wanted was a simple
update............heehee! That'll teach ya! Thanks for reading our book
and for all of your prayers. Do please keep them up. Hugs.
Take care and God bless, Janet, Trip (12 HH & one heckuva Boy Scout),
Katelyn (AKA Katie, 11-19-00, Heterotaxy w/situs ambiguous,
dextrocardia, polysplenia, a complete AVSD, DORV, TGV w/L-looped
ventricles (L-TGV), BSVC, PS, IIVC, and a mod. leaking AV valve; BT
shunt @ 2 weeks at Cook Children's; cath @ 3 months; Bilateral
Bidirectional Glenn @ 12 months at UofM; failed AV valve repair on April
13th, 2004 at UofM; next OHS tentatively scheduled for Mar/Apr '05; a
real little toot, but absolutely adorable!), & Don (DH) Arlington, TX
www.carepages.com carepage name: KatelynSteffen
__________________
Janet, mom to Trip & Katie (my CHD child)11-19-00; heterotaxy syndrome w/dextrocardia, situs ambiguous, polysplenia
