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!
Wednesday, November 26, 2008
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.
Tuesday, November 4, 2008
Birthday Man
Happy Birthday to the man behind the scenes. Behind the scenes getting his MBA, working full time, eating ice cream, bringing the family together for prayer, taking Claire to dialysis on the one morning he could sleep in, taking out the trash, eating chocolate, washing the cars, providing for all the needs of our family, eating chocolate ice cream, supporting me emotionally (which is no small task :) )and doing it all without complaint! (especially the ice cream chocolate part) LOVE YA HUN!
Halloween Fun
Dad and Diana were here for our ward Fall Festival. They also had a Halloween party at the Kidney Center that Benson was able to come to. The pictures say enough....Halloween was great!!
Thursday, October 30, 2008
On a lighter note...
I got tagged a while ago...here it goes!
The first one was to open the 4th folder of your pictures and post the 4th picture. And here it is.
Not too exciting but I guess it's fun to see where we live! This was taken when Grandma Waite, my Mom, and Aleena helped us move out here in July 2006. "Home is where our story begins..."
The second tag I got was to write 6 quirky things about myself. Hummm, where do I start...
1. Hands down, my favorite treat is mini-marshmallows with raisins. Separate, they are nice. Together, they are divine. This was my treat I'd take to snack on during sacrament meeting. My love for it has grown exponentially since then! Speaking of which, I'll be right back...
2. I love musicals! Sound of Music, Hairspray, ALL Broadway musicals, even High School Musical (1 was better than 2--have yet to see 3!)! I just love it when people break into song during their daily life. Secretly, I even love to perform in front of others....under certain conditions. If I had a better voice, Elphaba in Wicked is the part I'd love to play on Broadway!
3. I'm really hoping they're aren't spiders in heaven. I don't hate many things. I'm a pretty nice girl. But that is one thing I absolutely loath! Not planning on creating them in the next life you want my stamp of approval on it. :)
4. I spill water on myself ALL TOO OFTEN when I'm drinking it. Pretty much daily. Kinda embarrassing, but something I've learned to get over. And I drink A LOT of water. hum.
5. I slept with two stuffed animals up until the night before our wedding--a bear and a dog. Made off pretty good with the exchange, though.
6. I'm blond...in more than just my hair color. Book smart, yes....street smarts, not so much. I just don't 'get' everything the way the rest of you seem to. A little explanation is always helpful. I'm WAY too gullible too...I just assume people are always honest when in reality they're just lying--OH I MEAN JOKING. And I hate it when people scare me. Jared has learned NOT to stand behind a wall and say BOO as I walk by if he doesn't want a punch in the arm and the silent treatment. Not funny. No laughs. Just scary. Don't do it. Please.
There ya go! Off to clean the kitchen.
The first one was to open the 4th folder of your pictures and post the 4th picture. And here it is.
Not too exciting but I guess it's fun to see where we live! This was taken when Grandma Waite, my Mom, and Aleena helped us move out here in July 2006. "Home is where our story begins..."
The second tag I got was to write 6 quirky things about myself. Hummm, where do I start...
1. Hands down, my favorite treat is mini-marshmallows with raisins. Separate, they are nice. Together, they are divine. This was my treat I'd take to snack on during sacrament meeting. My love for it has grown exponentially since then! Speaking of which, I'll be right back...
2. I love musicals! Sound of Music, Hairspray, ALL Broadway musicals, even High School Musical (1 was better than 2--have yet to see 3!)! I just love it when people break into song during their daily life. Secretly, I even love to perform in front of others....under certain conditions. If I had a better voice, Elphaba in Wicked is the part I'd love to play on Broadway!
3. I'm really hoping they're aren't spiders in heaven. I don't hate many things. I'm a pretty nice girl. But that is one thing I absolutely loath! Not planning on creating them in the next life you want my stamp of approval on it. :)
4. I spill water on myself ALL TOO OFTEN when I'm drinking it. Pretty much daily. Kinda embarrassing, but something I've learned to get over. And I drink A LOT of water. hum.
5. I slept with two stuffed animals up until the night before our wedding--a bear and a dog. Made off pretty good with the exchange, though.
6. I'm blond...in more than just my hair color. Book smart, yes....street smarts, not so much. I just don't 'get' everything the way the rest of you seem to. A little explanation is always helpful. I'm WAY too gullible too...I just assume people are always honest when in reality they're just lying--OH I MEAN JOKING. And I hate it when people scare me. Jared has learned NOT to stand behind a wall and say BOO as I walk by if he doesn't want a punch in the arm and the silent treatment. Not funny. No laughs. Just scary. Don't do it. Please.
There ya go! Off to clean the kitchen.
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