So Claire has been on the new experimental drug, oxabact, for about one month now. She hasn't had any severe side effects from it; but has had increased vomiting/reflux. She's gone from having reflux/vomit 2-3 times in a 24 hr. period to around 5-6 times. But as far as Jared and I are concerned, it's not of concern and although it is painful to watch her do it...and I'm sure painful/uncomfortable for Claire to go through it...if it can keep her oxalate DOWN, it is worth it. The blessing of it is that although she is vomiting, nothing comes out of her mouth. Her throat is "tied" so things can only go down, not up. We "vent" her through her tube when she's vomiting...but she still makes all the sounds, movements, and responses of a normal person vomiting. So that allows the food/calories she so badly needs to stay down in her tummy and not all over the floor! I guess it works out good for both of us, but like I said, still NEVER fun to watch your child go through that numerous times each day/night.
Well, the good news that we got this past week is that Claire's oxalate number is going DOWN! We're hoping it's headed down as a result of the oxabact, but still can't say 100% for sure that this is the case.
They drew an oxalate number Feb 2 and it was 86.7. Then we started the oxabact that next day and drew another oxalate two weeks later on Feb 16. That number was 68.8! Yeah! It has been down to 64 before, but only once, and we don't really know WHY/HOW it got down that low on it's own. Every other number she's had has been between 80-100.
Just to give you a frame of reference, an oxalate test done in you and I would be less than 2.
We'll be drawing another oxalate from Claire next Monday, Mar 2, and if that one is considerably lower, then they may be able to say for sure that the oxabact is working for Claire and performing the miracle we're all praying for! We're trying to keep Claire's body as safe as we can from the elevated oxalate prior to transplant!
Thursday, February 26, 2009
Monday, February 23, 2009
FLIP
My mom got me a Flip Video Camera and I love it! It is so convenient to whip out and take video...and uploading it to the blog is a sinch! So you may be seeing more video as we go on!
Saturday, February 21, 2009
Craft It Forward
The first three people to respond to this post will get something made by me! My choice. For you.This offer does have some restrictions and limitations:
1- I make no guarantees that you will like what I make!
2- What I create will be just for you.
3- It'll be done this year.
4- You have no clue what it's going to be.
5- I reserve the right to do something extremely strange.
The catch is that you must repost this on your blog and offer the same to the first 3 people who do the same on your blog. The first 3 people to do so and leave a comment telling me they did win a FAB-U-LOUS homemade gift by me! Oh, and be sure to post a picture of what you win when you get it! And if you could include your address with your post, that would be most helpful!
Who's in?
1- I make no guarantees that you will like what I make!
2- What I create will be just for you.
3- It'll be done this year.
4- You have no clue what it's going to be.
5- I reserve the right to do something extremely strange.
The catch is that you must repost this on your blog and offer the same to the first 3 people who do the same on your blog. The first 3 people to do so and leave a comment telling me they did win a FAB-U-LOUS homemade gift by me! Oh, and be sure to post a picture of what you win when you get it! And if you could include your address with your post, that would be most helpful!
Who's in?
Wednesday, February 18, 2009
V-B Day
I really do enjoy having my Birthday on Valentines day. It's just a good day to be happy. Everyone around you is usually happy. Love is happy. Hearts are happy. Flowers are happy. Cupids are cute and happy. Valentines candy is one of the best of the year...which makes me happy. Why not be born on one of the happiest days of the year! I love it!
My birthday started out as any other day with a trip for me and Claire to the hosptial for dialysis. We came home to a Mickey-Mouse-decorated birthday party done by two excited boys. Jared also gave Benson a much needed hair cut and he looks so grown up now!
We went to eat at Casa Bonetia's which I'm sure means nothing to anyone. It's one of those restaurants that has cliff divers in the center of the restaurant and other entertainment for your dinning enjoyment. They claimed it is the "most entertaining restaurant in the world," but I don't think I'd go that far. The atmosphere was fun but the food has much room for improvement. Fun just to get out and do something different though.
Back at home, a heart-shaped-cake and presents were quick to follow a full-tummied-family. An early bed time for two tired kids was just around the corner. Jared and I watched a movie on the love sac and were compeletely exhaused by 10:00.
Thanks for a great 27 B/V day everyone! You make me happy!
It's been kind of a 'downer' week since then. Benson and I are coming down with some kind of sickness. It hasn't been a bad one, though. Just feel compeltely drained of energy, a light cough, and a little runny nose. Nothing that has kept us back too much, thankfully. Let's hope Jared and Claire don't catch the same thing!
Time for bed! (that means you too, Claire...I can still hear her chatting away up there in her crib! At least she's happy!)
My birthday started out as any other day with a trip for me and Claire to the hosptial for dialysis. We came home to a Mickey-Mouse-decorated birthday party done by two excited boys. Jared also gave Benson a much needed hair cut and he looks so grown up now!
We went to eat at Casa Bonetia's which I'm sure means nothing to anyone. It's one of those restaurants that has cliff divers in the center of the restaurant and other entertainment for your dinning enjoyment. They claimed it is the "most entertaining restaurant in the world," but I don't think I'd go that far. The atmosphere was fun but the food has much room for improvement. Fun just to get out and do something different though.
Back at home, a heart-shaped-cake and presents were quick to follow a full-tummied-family. An early bed time for two tired kids was just around the corner. Jared and I watched a movie on the love sac and were compeletely exhaused by 10:00.
Thanks for a great 27 B/V day everyone! You make me happy!
It's been kind of a 'downer' week since then. Benson and I are coming down with some kind of sickness. It hasn't been a bad one, though. Just feel compeltely drained of energy, a light cough, and a little runny nose. Nothing that has kept us back too much, thankfully. Let's hope Jared and Claire don't catch the same thing!
Time for bed! (that means you too, Claire...I can still hear her chatting away up there in her crib! At least she's happy!)
Friday, February 13, 2009
Smile
Claire got her two front teeth finally!! This is what she does when you ask her to show you her teeth!WE had a great Valentines party today at the Hospital. The kids decorated boxes and exchanged valentines with each other. They invited Benson to come and had some goddies for everyone!!
Claire has now moved to the floor! The crib was just getting to be too confining for this active little girl! So the mats and toys on the floor sure help to switch things up! It's also nice for me because I get a chance to sit!
Her "throne"
Just couldn't pass this picture up. I love dressing our kids for Sunday! They're too cute...saying prayer!Friday, January 30, 2009
Mayo Trip
Overall, the one word I use to describe our trip is insane. It really was crazy busy. But to be expected for all we had to get in in a short time. Before we left, Jared and I joked that we could kind of count this as a family vacation...since we haven't been able to do that for a while. Sounded like a good idea. Boy were we wrong. NO PART of the past week a half can be categorized even near the word vacation. Being at home, even with the crazy schedule we have here, was closer to a vacation than what we experienced. Good busy....ornery busy, for kids with limited sleep....busy!
Here are some of the highlights. It's long!
Blessings and mini-miracles
None of us got sick--before, during or after.
Claire layed perfectly still though her echo, EKG, and ultrasounds. VERY unusual for her. They were thinking of sedating her through the echo, but tried it first without meds. That prayer was answered as they got exactly what they needed without any sedation. Except for the last one they did a day before we left. She was tired, all done, and simply sick of people touching her!! Can't blam the girl. She wasn't so happy having the x-rays done, but she was literally strapped to a chair for that...what do you expect.
Claire's bladder catheter stayed IN after almost coming out several times. Therefore, the 24 hour urine collection really only took 24 hours!!
Claire and I only had to stay one night in the hospital. Happy for all 4 of us.
We left our binder of medical records/itinerary and basically everything medically important for our trip in the wheelchair we were borrowing to haul all our stuff around and didn't realize it until we were back at our room, hours later. That binder could have been anywhere around Mayo and someone could have never noticed it tucked in the back pocket of the wheel chair. When we went back, it was sitting at the front desk waiting for it's rightful, thankful owner to claim it!!
The kids were champions in the car. 14 hr drive is no easy task for anyone but they were fantastic.
We got to stay at the Ronald McDonald House for $10 a night!
I meet with another mom and her 3 year old girl who has the same disease as Claire and Benson. She got her kidney/liver transplant when she was 18 months old at the Mayo. It was great to talk with her about her experiences and get her advise on various things. That was a blessing that she just happened to be there for her annual liver biopsy the same time we were. Great connection with someone who understands a lot of what we're going though and what is to come.
Ah ha moments--things we found out
Clinically, Claire is doing well. They are impressed with her current condition, attitude, energy, and physical strength (and of course how adorable she is!) The surgeon is happy to see a big(ish) tummy on her (thanks in part to the pertineal dialysis that stretched her abdomen) and would feel comfortable doing the transplant now if needed. But since she is doing relatively well right now, we're going to keep cruising along and fatten her up as much as we can. The docs hope she can be ready for transplant within 4-6 months. If anything changes in the mean time, or her condition worsens, we'll do it sooner.
That means, they are officially listing her on the transplants lists for a kidney/liver but will not "activate" her until she's bigger. Listing her without activation will give her 'waiting' time that will help boost her higher on the list for when she is ready to get the organs.
The biggest concern for Claire right now is her bones. Surprised us. We knew she had deposits, but we didn't realize how sever they are. They are surprised and happy she is walking and getting around well without any pain in her joints. If any of that changes, transplant would be moved up.
Claire can definitely see. The ophthalmologist said she indeed has significant deposits/oxalate crystals in her eyes, but they don't affect her vision as much as would be expected. Both the eye and bone deposits will eventually go away, after transplant...years down the road. She most likely does have some vision damage (which won't go away), but it doesn't seem to be significant.
Claire is blood-less. Well not really, but they drew 15 ml from her EVERY day!! That is a lot of blood from a little girl. She'll be getting a transfusion on Monday to boost her back up. She's pale.
Protecting Claire's new transplanted kidney will be one of the most important things to watch for post-transplant. All of the oxalate in her body now has to be sent through her new kidney to get out of her body. Protecting her transplanted kidney with LOTS of water, and possibly even occasional dialysis will be necessary until the oxalate is removed. It could take years for the over-load of oxalate to be removed from her body. It is possible to "lose" the transplanted kidney due to the load of oxalate going through...leading to permanent dialysis and yet another kidney transplant. Just FYI for our preparation of what is possible to happen. Obviously something they try to prevent at all costs, but not unheard of.
Benson is doing well....but on the spectrum of kids who are doing well, he is on the higher-risk end of the scale. The 24 hr. urine study they did showed an elevated amount of oxalate passing through his system....which is good it is getting out of his body....but means the kidneys are taking the hit for it. Watching his kidney function and increasing his B6 is just about all we can do for him right now. ((and prayers, of course)).
Benson knows how to share his mommy with his sister. He loves that little girl.
We started Claire on a new medicine called oxalabacter. It is a new drug that is not even FDA approved yet and has only been used in two clinical studies. In both studies done, the results were very varied. (which is why it is not FDA approved yet.) On some patients, it was VERY effective in removing oxalate from their body. On other patients, it didn't seem to make any difference at all. But they did get permission for Claire to try it on a 'emergency/trial' basis. It's worth trying....if it could get rid of some oxalate in this in between time before transplant and protect her body, it's worth it. So far she hasn't had any side-effects from it. We'll test her stools every week and her oxalate level every 2 weeks to see if it's working. If after 3 months there isn't any significant change, we'll stop it. We're praying it works. ((they won't let Benson try it because his situation isn't as sever as Claire's. Possibly after more tests/studies, it would be available for him.))
We should have taken a stroller. Mayo is a big place.
It is miserably, stinking cold in Rochester. Only one day was above freezing.
I need a vacation. :) A real one!
It was a great blessing to be out there. We were talking to the right people at the right time with the right expertise. We trust their judgment. That is a good feeling. Better than any vacation. Well, ya know! :)
Here are some of the highlights. It's long!
Blessings and mini-miracles
None of us got sick--before, during or after.
Claire layed perfectly still though her echo, EKG, and ultrasounds. VERY unusual for her. They were thinking of sedating her through the echo, but tried it first without meds. That prayer was answered as they got exactly what they needed without any sedation. Except for the last one they did a day before we left. She was tired, all done, and simply sick of people touching her!! Can't blam the girl. She wasn't so happy having the x-rays done, but she was literally strapped to a chair for that...what do you expect.
Claire's bladder catheter stayed IN after almost coming out several times. Therefore, the 24 hour urine collection really only took 24 hours!!
Claire and I only had to stay one night in the hospital. Happy for all 4 of us.
We left our binder of medical records/itinerary and basically everything medically important for our trip in the wheelchair we were borrowing to haul all our stuff around and didn't realize it until we were back at our room, hours later. That binder could have been anywhere around Mayo and someone could have never noticed it tucked in the back pocket of the wheel chair. When we went back, it was sitting at the front desk waiting for it's rightful, thankful owner to claim it!!
The kids were champions in the car. 14 hr drive is no easy task for anyone but they were fantastic.
We got to stay at the Ronald McDonald House for $10 a night!
I meet with another mom and her 3 year old girl who has the same disease as Claire and Benson. She got her kidney/liver transplant when she was 18 months old at the Mayo. It was great to talk with her about her experiences and get her advise on various things. That was a blessing that she just happened to be there for her annual liver biopsy the same time we were. Great connection with someone who understands a lot of what we're going though and what is to come.
Ah ha moments--things we found out
Clinically, Claire is doing well. They are impressed with her current condition, attitude, energy, and physical strength (and of course how adorable she is!) The surgeon is happy to see a big(ish) tummy on her (thanks in part to the pertineal dialysis that stretched her abdomen) and would feel comfortable doing the transplant now if needed. But since she is doing relatively well right now, we're going to keep cruising along and fatten her up as much as we can. The docs hope she can be ready for transplant within 4-6 months. If anything changes in the mean time, or her condition worsens, we'll do it sooner.
That means, they are officially listing her on the transplants lists for a kidney/liver but will not "activate" her until she's bigger. Listing her without activation will give her 'waiting' time that will help boost her higher on the list for when she is ready to get the organs.
The biggest concern for Claire right now is her bones. Surprised us. We knew she had deposits, but we didn't realize how sever they are. They are surprised and happy she is walking and getting around well without any pain in her joints. If any of that changes, transplant would be moved up.
Claire can definitely see. The ophthalmologist said she indeed has significant deposits/oxalate crystals in her eyes, but they don't affect her vision as much as would be expected. Both the eye and bone deposits will eventually go away, after transplant...years down the road. She most likely does have some vision damage (which won't go away), but it doesn't seem to be significant.
Claire is blood-less. Well not really, but they drew 15 ml from her EVERY day!! That is a lot of blood from a little girl. She'll be getting a transfusion on Monday to boost her back up. She's pale.
Protecting Claire's new transplanted kidney will be one of the most important things to watch for post-transplant. All of the oxalate in her body now has to be sent through her new kidney to get out of her body. Protecting her transplanted kidney with LOTS of water, and possibly even occasional dialysis will be necessary until the oxalate is removed. It could take years for the over-load of oxalate to be removed from her body. It is possible to "lose" the transplanted kidney due to the load of oxalate going through...leading to permanent dialysis and yet another kidney transplant. Just FYI for our preparation of what is possible to happen. Obviously something they try to prevent at all costs, but not unheard of.
Benson is doing well....but on the spectrum of kids who are doing well, he is on the higher-risk end of the scale. The 24 hr. urine study they did showed an elevated amount of oxalate passing through his system....which is good it is getting out of his body....but means the kidneys are taking the hit for it. Watching his kidney function and increasing his B6 is just about all we can do for him right now. ((and prayers, of course)).
Benson knows how to share his mommy with his sister. He loves that little girl.
We started Claire on a new medicine called oxalabacter. It is a new drug that is not even FDA approved yet and has only been used in two clinical studies. In both studies done, the results were very varied. (which is why it is not FDA approved yet.) On some patients, it was VERY effective in removing oxalate from their body. On other patients, it didn't seem to make any difference at all. But they did get permission for Claire to try it on a 'emergency/trial' basis. It's worth trying....if it could get rid of some oxalate in this in between time before transplant and protect her body, it's worth it. So far she hasn't had any side-effects from it. We'll test her stools every week and her oxalate level every 2 weeks to see if it's working. If after 3 months there isn't any significant change, we'll stop it. We're praying it works. ((they won't let Benson try it because his situation isn't as sever as Claire's. Possibly after more tests/studies, it would be available for him.))
We should have taken a stroller. Mayo is a big place.
It is miserably, stinking cold in Rochester. Only one day was above freezing.
I need a vacation. :) A real one!
It was a great blessing to be out there. We were talking to the right people at the right time with the right expertise. We trust their judgment. That is a good feeling. Better than any vacation. Well, ya know! :)
Tuesday, January 20, 2009
Here we go!
Well, Claire's blood cultures came back negative....so the antibiotic is doing it's job and we don't have to switch her catheter out! YEAH!! She's doing very well now and is off and officially walking!! Such a big (little) girl!!
We're getting ready for our trip to Mayo. We'll leave Saturday, 24, and will be out there till February 4. We've got a full line up while we're out there. Appointments every morning then dialysis every afternoon from 1-4. She'll be admitted Mon-Wed for a few inpatient procedures and then we'll stay in the Ronald McDonald house the rest of the time. Claire will HATE it, I'm sure. Not knowing/trusting ANYONE....limited naps....procedures, tests, and exams galore! Good thing she forgives quickly (but forget, she doesn't!) Benson's schedule will be a bit more relaxed. Few blood/urine tests and other exams...but nothing too damaging! He's amazingly understanding when we need to do 'work' on him...so I'm sure he'll do just great!
Lots to pack!
I'll try to keep this updated while we're out there...((mostly for my own sake so I can remember before things get all mumbo-jumbo in my little mind.))
Thanks to all for your thoughts and prayers.
We're getting ready for our trip to Mayo. We'll leave Saturday, 24, and will be out there till February 4. We've got a full line up while we're out there. Appointments every morning then dialysis every afternoon from 1-4. She'll be admitted Mon-Wed for a few inpatient procedures and then we'll stay in the Ronald McDonald house the rest of the time. Claire will HATE it, I'm sure. Not knowing/trusting ANYONE....limited naps....procedures, tests, and exams galore! Good thing she forgives quickly (but forget, she doesn't!) Benson's schedule will be a bit more relaxed. Few blood/urine tests and other exams...but nothing too damaging! He's amazingly understanding when we need to do 'work' on him...so I'm sure he'll do just great!
Lots to pack!
I'll try to keep this updated while we're out there...((mostly for my own sake so I can remember before things get all mumbo-jumbo in my little mind.))
Thanks to all for your thoughts and prayers.
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