Wednesday, December 10, 2008
Picture fun
Benson's Ideal Dinner
As close to a bath as Claire's going to get (at least for now!)
Sure is hard to be on the outside looking in sometimes!Friday, December 5, 2008
There's always something
I know most of my posts are medically related...but that's pretty much what our life is like right now. So if you're not in for another medical lesson, you're at the wrong blog!!
There's always something with Claire that keeps us on our toes...and on our knees. We got a call from Claire's nurse on Tuesday telling us that Claire's lipids were extremely, dangerously, high. Lipids? Fats in the blood stream. It's basically a blood test to measure the amount of cholesterol and triglycerides in your blood. It's normal to have fat circulating in your blood, but too much of it can cause heart or vascular problems. So in other words, my little one year old has high cholesterol and is at risk of stroke, clotting veins, or other heart problems. Weird. But there is a good explanation for it. It's called 15 hours of daily dialysis. Both the hemo and the PD dialysis solutions are composed of sugar. So her body is exposed to and absorbing sugar 15 hours a day!! That overload of sugar goes into her blood stream and causes high cholesterol and lipid (fat) levels. Just to give you an idea, your cholesterol is considered high if it's over 200. Claire's is 344. The normal range for triglycerides, another fat component in your blood, is between 25-119. Clair's level is 1160!!!! Not OKAY!
SO what do you do? Decrease her exposure to sugar. The docs have had us stop her 12 hour nightly PD dialysis at home to start with. We are HOPING that helps lower these levels. I don't think they know what they'll do if that doesn't work...we're just planning on it working. But then what does that do to her oxalate levels. The PD dialysis removes the oxalate from her body all night long. What effect that will have on her oxalate levels is unknown. But right now, getting her cholesterol and lipid levels down HAS TO BE the priority. So on Monday, we'll draw her lipid levels, along with an oxalate level, and hope to see the lipids MUCH much lower and the oxalate levels not elevated with the absence of PD.
Oh boy.
Just another note.
We talked with Dr. Milliner at the Mayo Clinic in Rochester, MN on Tuesday and had a great conversation about Claire and Benson. Good news is we're heading in the right direction. She feels comfortable about the treatment both of them are getting. She also told us about a study they are doing in Germany with a new drug that is supposed to help with the removal of oxalate for PH1 patients. She said both our kids would be great candidates for the drug, if the study comes back favorable. She'll let us know within the next few months the results and details.
Jared and I have decided that we do want to do Claire's kidney/liver transplant out there. The knowledge and expertise they have in this rare disorder far surpasses anything we have here. (And the fact that they've actually DONE a kidney/liver transplant helps too!!) You just have to do things right the first time! There's no second chances when it comes to this kind of stuff. Insurance issues still have to be resolved, but hopefully, that's where we'll end up when the times comes.
Fun stuff. or not.
We rented Walle to watch tonight and Benson can hardly wait! Me too. Mostly for the popcorn and chance to sit in the love sac and relax!
There's always something with Claire that keeps us on our toes...and on our knees. We got a call from Claire's nurse on Tuesday telling us that Claire's lipids were extremely, dangerously, high. Lipids? Fats in the blood stream. It's basically a blood test to measure the amount of cholesterol and triglycerides in your blood. It's normal to have fat circulating in your blood, but too much of it can cause heart or vascular problems. So in other words, my little one year old has high cholesterol and is at risk of stroke, clotting veins, or other heart problems. Weird. But there is a good explanation for it. It's called 15 hours of daily dialysis. Both the hemo and the PD dialysis solutions are composed of sugar. So her body is exposed to and absorbing sugar 15 hours a day!! That overload of sugar goes into her blood stream and causes high cholesterol and lipid (fat) levels. Just to give you an idea, your cholesterol is considered high if it's over 200. Claire's is 344. The normal range for triglycerides, another fat component in your blood, is between 25-119. Clair's level is 1160!!!! Not OKAY!
SO what do you do? Decrease her exposure to sugar. The docs have had us stop her 12 hour nightly PD dialysis at home to start with. We are HOPING that helps lower these levels. I don't think they know what they'll do if that doesn't work...we're just planning on it working. But then what does that do to her oxalate levels. The PD dialysis removes the oxalate from her body all night long. What effect that will have on her oxalate levels is unknown. But right now, getting her cholesterol and lipid levels down HAS TO BE the priority. So on Monday, we'll draw her lipid levels, along with an oxalate level, and hope to see the lipids MUCH much lower and the oxalate levels not elevated with the absence of PD.
Oh boy.
Just another note.
We talked with Dr. Milliner at the Mayo Clinic in Rochester, MN on Tuesday and had a great conversation about Claire and Benson. Good news is we're heading in the right direction. She feels comfortable about the treatment both of them are getting. She also told us about a study they are doing in Germany with a new drug that is supposed to help with the removal of oxalate for PH1 patients. She said both our kids would be great candidates for the drug, if the study comes back favorable. She'll let us know within the next few months the results and details.
Jared and I have decided that we do want to do Claire's kidney/liver transplant out there. The knowledge and expertise they have in this rare disorder far surpasses anything we have here. (And the fact that they've actually DONE a kidney/liver transplant helps too!!) You just have to do things right the first time! There's no second chances when it comes to this kind of stuff. Insurance issues still have to be resolved, but hopefully, that's where we'll end up when the times comes.
Fun stuff. or not.
We rented Walle to watch tonight and Benson can hardly wait! Me too. Mostly for the popcorn and chance to sit in the love sac and relax!
Wednesday, November 26, 2008
List of updates
CLAIRE is out of isolation at the hospital with no sign of the chicken pocks!! Hip hip HORRAY!!
WE enjoyed having Jared's parents here last week. I always LOVE having family here to switch things up a bit! Benson loved staying home at HIS house every day with Grandma. Always sad to see family go.
JARED finished yet another quarter of school and is off until the first week of January!! I don't know who's more excited...me or him. It's hard to believe he only has ONE more quarter left!! That brings a BIG smile to my face!
CLAIRE finally graduated from size 1/2 diapers. It's been a long haul...but I think she's ready to move on up to the BIG #3!!
WE are talking with the Mayo Clinic Doctors on Tuesday Dec. 2 to get their opinions on Benson and Claire. They are the experts in this genetic disorder. We are strongly looking into the possibility of having Claire's transplant done out there.
BENSON is still NOT potty trained. Any suggestions for HELP!!!!!!!!!!! are welcomed!! He drinks over 2 liters of liquid every day which I think plays a big part in our struggles!!
WE get Thanksgiving off from hemo-dialysis!! YEAH!!! Not without compensation, though. We're running Claire an extra half hour each day this week to make up for the time off so she still gets roughly the same amount of hours in. But HIP HIP for THANKSGIVING!! I'm hoping for a BIG SLEEP IN morning for all of us (((but am doubtful about the reality of it!!)))
WE'LL be spending Thanksgiving with some friends from our ward. Next best thing to being with family. Baking a banana cream pie and green bean casserole is MUCH better than cooking the whole thing by myself!!
COURTESY of Jared, I spent a luxurious afternoon at the spa last Saturday! WoW. That was cool. What a MAN!! And I got my hair cut. No biggie, just trimmed and healthy!! Felt like a new woman!! THANKS HUN!
JARED bought a gun.
HAPPY THANKSGIVING to you ALL!
WE enjoyed having Jared's parents here last week. I always LOVE having family here to switch things up a bit! Benson loved staying home at HIS house every day with Grandma. Always sad to see family go.
JARED finished yet another quarter of school and is off until the first week of January!! I don't know who's more excited...me or him. It's hard to believe he only has ONE more quarter left!! That brings a BIG smile to my face!
CLAIRE finally graduated from size 1/2 diapers. It's been a long haul...but I think she's ready to move on up to the BIG #3!!
WE are talking with the Mayo Clinic Doctors on Tuesday Dec. 2 to get their opinions on Benson and Claire. They are the experts in this genetic disorder. We are strongly looking into the possibility of having Claire's transplant done out there.
BENSON is still NOT potty trained. Any suggestions for HELP!!!!!!!!!!! are welcomed!! He drinks over 2 liters of liquid every day which I think plays a big part in our struggles!!
WE get Thanksgiving off from hemo-dialysis!! YEAH!!! Not without compensation, though. We're running Claire an extra half hour each day this week to make up for the time off so she still gets roughly the same amount of hours in. But HIP HIP for THANKSGIVING!! I'm hoping for a BIG SLEEP IN morning for all of us (((but am doubtful about the reality of it!!)))
WE'LL be spending Thanksgiving with some friends from our ward. Next best thing to being with family. Baking a banana cream pie and green bean casserole is MUCH better than cooking the whole thing by myself!!
COURTESY of Jared, I spent a luxurious afternoon at the spa last Saturday! WoW. That was cool. What a MAN!! And I got my hair cut. No biggie, just trimmed and healthy!! Felt like a new woman!! THANKS HUN!
JARED bought a gun.
HAPPY THANKSGIVING to you ALL!
Friday, November 14, 2008
On this day...
...exactly one year ago, Jared, Benson, and I were sitting at our kitchen table eating an egg sandwich and cheetos for lunch. Claire, just over two months old, was sitting in her bouncer seat, watching us eat. The phone rang. I answered it. It was Claire's Pediatrician. "Take Claire to the Children Hospital now and pack your bags. Her kidney's aren't working." I wasn't so interested in finishing my egg sandwich after that conversation.
There are certain days we remember with more clarity than others. Most of us remember where we were on Sept 11, 2001. We can usually remember specific things about our wedding day or perhaps the day your child was born. Some birthdays or holidays may also stand out with special significance that will never be forgotten. November 14, 2007 was one of those days for me. The worries, the questions, the confusion, the very LIFE of my LITTLE ONE all whirling through my head impress feelings on my spirit that are not easily forgotten. Nor should they be. It's in remembering those feelings of confusion and uncertainty that I can now more clearly see where I am today.
This past year has MEANT something to our family. It's meant a lot of learning, a lot of priority shifts, and a lot of time on our knees...coming to better know HIM who sees the ETERNAL perspective of our lives. Four surgeries later and more x-rays, ultrasounds, bloods tests, hearts tests, eye exams, and blood transfusions than I wish to recount...and our little one keeps fighting!! She is a child in every sense of the word: "submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon her."
Our path still has many unknowns. This year to come will unravel a lot of new challenges. Questions of transplant--WHEN to do it, WHERE to do it, should the doner be deceased or a living relative, and whether we should do the kidney/liver together or the liver first and kidney later still remain unanswered. But as I look back on the past and forward to the future, I KNOW we will be guided. The worries, the questions, the confusion, the very LIFE of our LITTLE ONE will always linger to some degree, but our LOVE for our children, FAITH in Jesus Christ, and TRUST in HIS plan for us, will take us through yet another year filled with blessings.
There are certain days we remember with more clarity than others. Most of us remember where we were on Sept 11, 2001. We can usually remember specific things about our wedding day or perhaps the day your child was born. Some birthdays or holidays may also stand out with special significance that will never be forgotten. November 14, 2007 was one of those days for me. The worries, the questions, the confusion, the very LIFE of my LITTLE ONE all whirling through my head impress feelings on my spirit that are not easily forgotten. Nor should they be. It's in remembering those feelings of confusion and uncertainty that I can now more clearly see where I am today.
This past year has MEANT something to our family. It's meant a lot of learning, a lot of priority shifts, and a lot of time on our knees...coming to better know HIM who sees the ETERNAL perspective of our lives. Four surgeries later and more x-rays, ultrasounds, bloods tests, hearts tests, eye exams, and blood transfusions than I wish to recount...and our little one keeps fighting!! She is a child in every sense of the word: "submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon her."
Our path still has many unknowns. This year to come will unravel a lot of new challenges. Questions of transplant--WHEN to do it, WHERE to do it, should the doner be deceased or a living relative, and whether we should do the kidney/liver together or the liver first and kidney later still remain unanswered. But as I look back on the past and forward to the future, I KNOW we will be guided. The worries, the questions, the confusion, the very LIFE of our LITTLE ONE will always linger to some degree, but our LOVE for our children, FAITH in Jesus Christ, and TRUST in HIS plan for us, will take us through yet another year filled with blessings.
Monday, November 10, 2008
Creation
OUR TWO GRAND CREATIONS FOR THE DAY!! Ha ha, just kidding...but I did create ONE of them, along with my trusty assistant ((or was HE the master and I the assistant? I forget)). Bet you can't guess which one. Let me give you one clue. We had Stake Conference last weekend and the bishopric dropped "something" off to let our family enjoy. Robot-Lego-Man....Beautiful Flowers....hum??! Both stunning creations none the less!
Wednesday, November 5, 2008
Some thoughts on my mind
Today I've been thinking about all Claire has to go through. She goes through a lot every day in our normal routine, but today a few extras were added on top.
Because of the virus she got a few weeks ago, she's on yet another medication that we have to rub around in her mouth--getting it all over her gums, tongue, and cheeks. The antibiotics for her virus kills some good bacteria, along with the bad, and therefore, we rub this in her mouth to prevent her from getting a yeast infection or thrush in her mouth while she's on the antibiotic.
"Why do you have to do that to me, Mommy? I HATE this med!!! It tastes terrible and makes me throw up every time you rub it on my tongue. Four times a day, is it really that necessary?!"
Claire was exposed to shingles by one of her fellow dialysis friends last week. Claire is that only patient who hasn't had chicken pocks (shingles is a regeneration of the chicken pocks...so if you'd had chicken pocks, it's likely you have antibodies already build up and won't get the shingles). She got her chicken pock vaccine but has not yet build up any antibodies for it. She could break out with the shingles any time within the next two weeks. Because of this, she is in isolation at the Kidney Center. She has to be covered as we walk into the Kidney Center, we are in a separate room from everyone else, and any one who walks in (nurses) has to wear a yellow cover up for the cloths, gloves, and a mask (as to prevent spreading the disease to any one else). We don't even know if she will get it or not (and of course we are PRAYING she will NOT), but she still has to be in isolation for 2 weeks until she's past the stage of possibly breaking out with it.
"Why do I have to be put in this room, Mommy? My favorite part about being on dialysis is interacting with all my other friends on dialysis, waving to the nurses, and talking to everyone who walks into the room. I bring a smile to their face and they bring a smile to mine! No one comes to talk to me like they used to. I'm confused. What did I do? And why does everyone look so scary who comes into my room? I don't like those yellow cover-ups."
And then she had to get two shots today. Her flu shot and another Hepatitis B shot. The last Hep B shot got dialysed off because she's on so much dialysis. Hopefully we can get some of it to stay in her sweet body!!
"I know what that cool, wet feeling is on my leg. You can't fool me with those alcohol swabs anymore! OUCH!! Why Mommy? Why the pain?"
Thinking about these experiences today has helped me put some things into perspective.
We go to the doctor to be healed, Baby Claire. Healed, protected, and in your case, cleansed. Healed, at least in part, through medicine that might not taste so good and may even make you throw up. Protected through shots/vaccines that flat out hurt! And cleansed from the waste that builds up in your body and cannot be removed any other way.
Physicians seem to be causing such 'hurt' in your life! But they aren't doing anything that deviates from the ultimate outcome of healing, protection, and cleansing.
So why the hurt, Baby Claire? Because we are BROKEN, each in our own way. And have great need of the Great Physician's healing, cleansing, and protective power.
Thanks Claire, for teaching me. I hope I can submit as well as you do.
Because of the virus she got a few weeks ago, she's on yet another medication that we have to rub around in her mouth--getting it all over her gums, tongue, and cheeks. The antibiotics for her virus kills some good bacteria, along with the bad, and therefore, we rub this in her mouth to prevent her from getting a yeast infection or thrush in her mouth while she's on the antibiotic.
"Why do you have to do that to me, Mommy? I HATE this med!!! It tastes terrible and makes me throw up every time you rub it on my tongue. Four times a day, is it really that necessary?!"
Claire was exposed to shingles by one of her fellow dialysis friends last week. Claire is that only patient who hasn't had chicken pocks (shingles is a regeneration of the chicken pocks...so if you'd had chicken pocks, it's likely you have antibodies already build up and won't get the shingles). She got her chicken pock vaccine but has not yet build up any antibodies for it. She could break out with the shingles any time within the next two weeks. Because of this, she is in isolation at the Kidney Center. She has to be covered as we walk into the Kidney Center, we are in a separate room from everyone else, and any one who walks in (nurses) has to wear a yellow cover up for the cloths, gloves, and a mask (as to prevent spreading the disease to any one else). We don't even know if she will get it or not (and of course we are PRAYING she will NOT), but she still has to be in isolation for 2 weeks until she's past the stage of possibly breaking out with it.
"Why do I have to be put in this room, Mommy? My favorite part about being on dialysis is interacting with all my other friends on dialysis, waving to the nurses, and talking to everyone who walks into the room. I bring a smile to their face and they bring a smile to mine! No one comes to talk to me like they used to. I'm confused. What did I do? And why does everyone look so scary who comes into my room? I don't like those yellow cover-ups."
And then she had to get two shots today. Her flu shot and another Hepatitis B shot. The last Hep B shot got dialysed off because she's on so much dialysis. Hopefully we can get some of it to stay in her sweet body!!
"I know what that cool, wet feeling is on my leg. You can't fool me with those alcohol swabs anymore! OUCH!! Why Mommy? Why the pain?"
Thinking about these experiences today has helped me put some things into perspective.
We go to the doctor to be healed, Baby Claire. Healed, protected, and in your case, cleansed. Healed, at least in part, through medicine that might not taste so good and may even make you throw up. Protected through shots/vaccines that flat out hurt! And cleansed from the waste that builds up in your body and cannot be removed any other way.
Physicians seem to be causing such 'hurt' in your life! But they aren't doing anything that deviates from the ultimate outcome of healing, protection, and cleansing.
So why the hurt, Baby Claire? Because we are BROKEN, each in our own way. And have great need of the Great Physician's healing, cleansing, and protective power.
Thanks Claire, for teaching me. I hope I can submit as well as you do.
Subscribe to:
Posts (Atom)