Thursday, January 8, 2009
Lovin' KIDS!!
While getting ready to brush his teeth tonight, Benson asked..."Where did all the food go that was in my teeth?" "Well, probably into your tummy." (thinking thinking thinking) "I want a BIG tummy, just like my Grandpa." (thinking thinking thinking) "But I miss my Grandpa. I want him to come see me."
Mayo Trip
We just got word that we'll be able to go out to the Mayo Clinic this month! Exciting...a little scary that the process is actually beginning! The Week of January 26 is when we'll make the trek. Details to come!
Saturday, January 3, 2009
Christmas cont.
We really were extremely blessed this holiday season. We were blessed to be home as a family and even if it's really not, life just felt simple this season. It has been so great to have Jared home and not at school! I'm sad to see that come to a close as the new semester starts on Monday. But the BRIGHT light at the end of that tunnel is just ahead! He'll be DONE with his MBA the middle of March...which will make this last semester easier to endure through!
But as I was saying....we were extremely blessed. Many offered gifts of service to us this season through a Secret Santa left at out doorstep, many plates of holiday cookies and treats, gifts and gifts cards from the hospital, and some very generous monetary contributions...some from we know who to thank for and others sent anonymously. For all we thank God. We were humbled almost every day at the kindness, love, and generosity offered to our family. It has been a wonderful season to draw closer to Christ, remember Him, and recommit ourselves to Him.
On the fun side of it all, Benson got his hot wheels roller coaster from Santa. "Is that for me?" he asked perplexed?! Claire got some small, hopefully entertaining toys to take to the hospital to enjoy during her treatments. And the one big gift we got both the kids was a small toy kitchen for them to play with. I think it will be instrumental for Claire to at least find the fun in pretending with food since she doesn't eat anything right now. Benson is really getting into the pretend/make-believe stage and is loving being the chef of the house!
My favorite gift is my new white tennis shoes and Jareds is his 12 inch dutch oven. It was a simple Christmas filled with great memories and much to be grateful for! LIFE!
((I'll have to take a picture of my tennis shoes! I've been looking long and hard for a pair I liked and finally found them! I get happy every time I look down!))
Oh and some of the best news of all....drum roll please....BENSON IS POTTY TRAINED!!! Just another one of those proud mommy moments ((not that I really did anything. It just had to click! and it finally did!)) Actually, that was kind of the deal with the roller coaster. No diapers + big boy underwear + staying clean & dry all day = roller coaster! Simple math. We all understood the rules...it clicked with him and HAPPY DAY for everyone!!!
But as I was saying....we were extremely blessed. Many offered gifts of service to us this season through a Secret Santa left at out doorstep, many plates of holiday cookies and treats, gifts and gifts cards from the hospital, and some very generous monetary contributions...some from we know who to thank for and others sent anonymously. For all we thank God. We were humbled almost every day at the kindness, love, and generosity offered to our family. It has been a wonderful season to draw closer to Christ, remember Him, and recommit ourselves to Him.
On the fun side of it all, Benson got his hot wheels roller coaster from Santa. "Is that for me?" he asked perplexed?! Claire got some small, hopefully entertaining toys to take to the hospital to enjoy during her treatments. And the one big gift we got both the kids was a small toy kitchen for them to play with. I think it will be instrumental for Claire to at least find the fun in pretending with food since she doesn't eat anything right now. Benson is really getting into the pretend/make-believe stage and is loving being the chef of the house!
My favorite gift is my new white tennis shoes and Jareds is his 12 inch dutch oven. It was a simple Christmas filled with great memories and much to be grateful for! LIFE!
((I'll have to take a picture of my tennis shoes! I've been looking long and hard for a pair I liked and finally found them! I get happy every time I look down!))
Oh and some of the best news of all....drum roll please....BENSON IS POTTY TRAINED!!! Just another one of those proud mommy moments ((not that I really did anything. It just had to click! and it finally did!)) Actually, that was kind of the deal with the roller coaster. No diapers + big boy underwear + staying clean & dry all day = roller coaster! Simple math. We all understood the rules...it clicked with him and HAPPY DAY for everyone!!!
Saturday, December 27, 2008
Hospital Christmas Fun
Not many people can say they went to the hospital on Christmas Eve and actually had a good time! Benson, Claire and I did!
Benson got to enjoy a little virtual fun thanks to the wonders of modern technology. Santa was much too busy at the North Pole making some last minute preparations, so he visited each child via the web cam! His trusty, computer-savvy, elves delivered a plush dog with a gift card to each child! At first Benson wasn't too sure about how all this worked, but was soon delighted to tell Santa all he wanted for Christmas was a roller coaster and some shoes (hot wheels roller coaster, that is!) Claire enjoyed the computer Santa MUCH better than the real guy who came strolling in Christmas eve. The photo of her face with Santa says it all!! She was much happier tucked away in the comfort of her car seat!
The SWAT team also made a special appearance Christmas eve. The kids were so excited to become real junior police squad members with their special sticker badges and squishy police cars! Claire was actually okay with the policemen near, but especially liked the squishy police car. Benson loves watching movies with his friend Adrian who does dialysis Mon. Wed. Fri. They're good buddies and keep each other entertained.
Singing songs, getting a stocking from Santa filled with goodies, and even a story about the Grinch made Christmas eve at the hospital as good as it could be!! And having cute kids to share it with...that's really what makes Christmas fun!
Benson got to enjoy a little virtual fun thanks to the wonders of modern technology. Santa was much too busy at the North Pole making some last minute preparations, so he visited each child via the web cam! His trusty, computer-savvy, elves delivered a plush dog with a gift card to each child! At first Benson wasn't too sure about how all this worked, but was soon delighted to tell Santa all he wanted for Christmas was a roller coaster and some shoes (hot wheels roller coaster, that is!) Claire enjoyed the computer Santa MUCH better than the real guy who came strolling in Christmas eve. The photo of her face with Santa says it all!! She was much happier tucked away in the comfort of her car seat!
The SWAT team also made a special appearance Christmas eve. The kids were so excited to become real junior police squad members with their special sticker badges and squishy police cars! Claire was actually okay with the policemen near, but especially liked the squishy police car. Benson loves watching movies with his friend Adrian who does dialysis Mon. Wed. Fri. They're good buddies and keep each other entertained.
Singing songs, getting a stocking from Santa filled with goodies, and even a story about the Grinch made Christmas eve at the hospital as good as it could be!! And having cute kids to share it with...that's really what makes Christmas fun!
Sunday, December 21, 2008
A lighter heart
I must admit that for the past several weeks our hearts have been a bit more heavy than usual. Insurance is what I like to call a necessary evil. Evil because it can be sooooo hard to get correct answers from the random person answering the phone on the other end...evil because there's always exceptions, limitation, and flat out stuff the won't cover! Necessary because without, we'd be toast/broke! (and for that reason alone, I am soooo grateful for it...even if it has an evil side too!)
A few weeks ago, I contacted the insurance dept out at the Mayo Clinic and told them about our current insurance. She took down all Claire's info and called our insurance company to see how/what they would cover for a transplant out of state. The next day she called back and said that they couldn't accept the insurance. Our insurance may pay for what was needed, but it wasn't in the Mayo's system to accept that out-of-state insurance. That would leave us with the remaining 20% of what Claire's transplant will cost, as Claire's Medicare covers 80% of her transplant no matter where we go. Well, 20% doesn't sound like much until you get it next to at kidney/liver transplant. The estimate she gave us for the remaining 20% we would be responsible for was between $40,000-$60,000. And that's if everything goes peachy perfect! That causes your heart to sink a bit.
Jared and I then began preparing our minds for the thought that if we absolutely wanted to have Claire transplant at the Mayo, it would be much more feasible for us to simple move out to Minnesota and get insurance out there that would cover the remaining 20%. We were 'heavy-heartly' ready to start packing our bags. But we kept investigating to see if there was something, anything we could do to allow us to stay here and still have her transplant out there. With guidance from the Spirit, we were lead to talk with someone directly at our insurance company who actually knew A LOT...and who seemed very confused when we told her what we found at by talking with the people at the Mayo. So she decided to investigate a little bit herself and see what the deal was.
After a week and a half, she called me back and said she thought everything was going to work! She talked with the same lady whom I spoke with earlier out at Mayo and there was a misunderstanding of what insurance we had and how a transplant could be covered under that. The lady at Mayo was going to double check with her supervisor and give us the official go-ahead if all was well. Friday we got the call that our insurance here would indeed pick up the remaining 20% for Claire's transplant performed at the Mayo Clinic! And we don't even have to move!! Wow, what a huge rush of gratitude filled my now much lighter heart! Answered prayers. Blessings. Nothing short of a miracle.
Second lightening of the heart.
Jared lost his job a few weeks ago. The company he was working for was based in Australia and was trying to get too big too fast. Therefore, they had to let some employees go in order to get some things restructured. They said they'd like him back in a few months after they get some things worked out...but ya can't just sit around and twiddle your thumbs for 2 months!
So Jared started networking. Turns out one of the other employees from this company who also was let go was friends with a guy in Hawaii who wanted him to come work for him. Jared connected with this guy in Hawaii and between the 3 of them, they're going to start their own trading room ((that's what his previous job had been too...moderating a trading room...calling out trades)). After working out all the kinks, they got things up and running this week and already have a decent size 'room' to get going with. It may take a few months before we know if things pan out but for now something is always better than nothing.
Another blessing. Jobs are always a good thing to have. Answered prayers once again.
Thank you for your prayers.
Still no word on Claire's lipids/cholesterol. We'll test them again the first of January to see if the medicine is helping. I asked the Docs at the Mayo if they had seen such high levels on other patients doing so much dialysis and they hadn't!! I was shocked. She was shocked too that her levels were that high...and wasn't quite sure what the solution was either. One of our friends in the Ward is a pediatric cardiologist and he's going to get us the name/number of a specialist who may be able to help in some way. We'll keep on truckin' along with this issue!! The story's not over yet!!
Claire took her first steps!! ENJOY!
A few weeks ago, I contacted the insurance dept out at the Mayo Clinic and told them about our current insurance. She took down all Claire's info and called our insurance company to see how/what they would cover for a transplant out of state. The next day she called back and said that they couldn't accept the insurance. Our insurance may pay for what was needed, but it wasn't in the Mayo's system to accept that out-of-state insurance. That would leave us with the remaining 20% of what Claire's transplant will cost, as Claire's Medicare covers 80% of her transplant no matter where we go. Well, 20% doesn't sound like much until you get it next to at kidney/liver transplant. The estimate she gave us for the remaining 20% we would be responsible for was between $40,000-$60,000. And that's if everything goes peachy perfect! That causes your heart to sink a bit.
Jared and I then began preparing our minds for the thought that if we absolutely wanted to have Claire transplant at the Mayo, it would be much more feasible for us to simple move out to Minnesota and get insurance out there that would cover the remaining 20%. We were 'heavy-heartly' ready to start packing our bags. But we kept investigating to see if there was something, anything we could do to allow us to stay here and still have her transplant out there. With guidance from the Spirit, we were lead to talk with someone directly at our insurance company who actually knew A LOT...and who seemed very confused when we told her what we found at by talking with the people at the Mayo. So she decided to investigate a little bit herself and see what the deal was.
After a week and a half, she called me back and said she thought everything was going to work! She talked with the same lady whom I spoke with earlier out at Mayo and there was a misunderstanding of what insurance we had and how a transplant could be covered under that. The lady at Mayo was going to double check with her supervisor and give us the official go-ahead if all was well. Friday we got the call that our insurance here would indeed pick up the remaining 20% for Claire's transplant performed at the Mayo Clinic! And we don't even have to move!! Wow, what a huge rush of gratitude filled my now much lighter heart! Answered prayers. Blessings. Nothing short of a miracle.
Second lightening of the heart.
Jared lost his job a few weeks ago. The company he was working for was based in Australia and was trying to get too big too fast. Therefore, they had to let some employees go in order to get some things restructured. They said they'd like him back in a few months after they get some things worked out...but ya can't just sit around and twiddle your thumbs for 2 months!
So Jared started networking. Turns out one of the other employees from this company who also was let go was friends with a guy in Hawaii who wanted him to come work for him. Jared connected with this guy in Hawaii and between the 3 of them, they're going to start their own trading room ((that's what his previous job had been too...moderating a trading room...calling out trades)). After working out all the kinks, they got things up and running this week and already have a decent size 'room' to get going with. It may take a few months before we know if things pan out but for now something is always better than nothing.
Another blessing. Jobs are always a good thing to have. Answered prayers once again.
Thank you for your prayers.
Still no word on Claire's lipids/cholesterol. We'll test them again the first of January to see if the medicine is helping. I asked the Docs at the Mayo if they had seen such high levels on other patients doing so much dialysis and they hadn't!! I was shocked. She was shocked too that her levels were that high...and wasn't quite sure what the solution was either. One of our friends in the Ward is a pediatric cardiologist and he's going to get us the name/number of a specialist who may be able to help in some way. We'll keep on truckin' along with this issue!! The story's not over yet!!
Claire took her first steps!! ENJOY!
Tuesday, December 16, 2008
Quote
"But God alone speaks in us, and we wait, in singleness of heart, that we know His will, and in silence of our spirits, that we may do His will, and do that only."
--Longfellow
Thursday, December 11, 2008
Lipid update
What to do what to do?
After being off her 12 hr night time PD dialysis and a night of fasting, Claire's levels did come down! Yeah, that's good...but just not good enough. Her cholesterol stayed about the same but her triglycerides came down 300 pts. to 880. STILL the normal is 119!! And in having her off PD, her other electrolyte levels got all messed up. So they started her back up again on nightly PD to get those levels back in line (which they now are), but the lipid levels are still obviously an issue. We haven't got her oxalate level back to see how being off PD affected that, but should get them next week.
And so we try a different approach. We started Claire on some fish oil, twice a day, as well as another cholesterol reducing medication called Niacine. They think these will help, but will it be enough?
Only one way to find out. We'll give it a whirl.
Any one in our family know of high cholesterol as a genetic issue?
After being off her 12 hr night time PD dialysis and a night of fasting, Claire's levels did come down! Yeah, that's good...but just not good enough. Her cholesterol stayed about the same but her triglycerides came down 300 pts. to 880. STILL the normal is 119!! And in having her off PD, her other electrolyte levels got all messed up. So they started her back up again on nightly PD to get those levels back in line (which they now are), but the lipid levels are still obviously an issue. We haven't got her oxalate level back to see how being off PD affected that, but should get them next week.
And so we try a different approach. We started Claire on some fish oil, twice a day, as well as another cholesterol reducing medication called Niacine. They think these will help, but will it be enough?
Only one way to find out. We'll give it a whirl.
Any one in our family know of high cholesterol as a genetic issue?
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