I had such a fun day yesterday at the Fish Fest, out here in Irvine. I worked with the people from Big Idea (VeggieTales), getting the word out about the upcoming Pirate Movie, and then taking the characters around the park, so the kids could meet their favorite veggies up close and personal. I just love watching little faces light up when they first see a bigger than life Larry or Mr. Lunt! Hugs and pictures, and lots of happy faces. It was a good day for everyone!
It was also HOT. Ok, by California standards, it was hot. Friends from Arizona or Las Vegas needn't reply...I know I'm a whimp. :) I was with some guys from Nashville who were laughing at my idea of humidity! (But for all my local, fellow-whimpy friends...it was pretty steamy.)
Dave's been doing really well. He looks so great, again. We are still very hopeful that some dialysis might help his kidney function come back. His numbers seem to be improving, so you never know. Personally, I am just enjoying having my husband back. He was so sick for so long. We both feel extrememly blessed with the outcome, so far. God has truly allowed us a glimpse of what someone with a life threatening disease goes through. Our empathy for others will forever be greater.
I'm trying to plan a party to celebrate Dave's remission, but he wants to do something for my 40th b-day. So, we may have a big party celebrating both. Whatever we do we'll have all you guys over, lots of food and the usual karaoke torture!
Ok, I'm off to the pool! Have a great week!
Sunday, July 29, 2007
Tuesday, July 17, 2007
VBS
It’s been another fun week here in the burbs of Orange County, because VBS season is upon us!! This week the two boys are attending the VBS at MV Church of Christ. Awesome church, awesome people!! I decided to work this week, too. So, I’ve had the pleasure of leading a group of 7, 8, and 9 yr olds around some neat stations. I just LOVE VBS. It sure is a lot more action packed than the days when we had only the church organ, and flannel board stories!
Next week the kids have Summer Spectacular at Saddleback. It’s so huge!! Like nothing I have ever seen. We’re so blessed to have Jana Alyra perform everyday. She is a wonderful entertainer!! The kids adore her!
Having a fun week !
Next week the kids have Summer Spectacular at Saddleback. It’s so huge!! Like nothing I have ever seen. We’re so blessed to have Jana Alyra perform everyday. She is a wonderful entertainer!! The kids adore her!
Having a fun week !
Saturday, July 14, 2007
And so it begins
This week Dave began his dialysis every other day. It’s been tough to get used to, and surprisingly it comes with some side effects, like headache and nausea. I was hoping he’d actually feel better after getting it done, but he says he feels about the same. Not that he felt too awful before it started!
He is definitely in remission. His rheumatologist saw him on Friday, and confirmed it. So, at this point we are keeping most of our attention on his kidney function and just covering our bases by looking into several kidney transplant centers in Southern California. So far we like: UCLA, Cedars of Sinai, Loma Linda and possibly Scripps in San Diego. He can be on more than one list, as long as it’s not within the same general area…so we’ll have to choose between UCLA and Cedars for the LA area.
I am the only person willing to donate, at this point. So wherever we go, I will have all the tests to see if I’m a match and can be his live donor. I shouldn’t say I’m the only willing person….his dad and my mom both have offered, but they are both over the age 55, which is usually the cut-off. So, I’m it, hopefully. If he can’t get a donated kidney, then there is a long waiting list, based on several factors. It would take years, sometimes.
We’re sure that God will provide. He’s blessed us so much already!
He is definitely in remission. His rheumatologist saw him on Friday, and confirmed it. So, at this point we are keeping most of our attention on his kidney function and just covering our bases by looking into several kidney transplant centers in Southern California. So far we like: UCLA, Cedars of Sinai, Loma Linda and possibly Scripps in San Diego. He can be on more than one list, as long as it’s not within the same general area…so we’ll have to choose between UCLA and Cedars for the LA area.
I am the only person willing to donate, at this point. So wherever we go, I will have all the tests to see if I’m a match and can be his live donor. I shouldn’t say I’m the only willing person….his dad and my mom both have offered, but they are both over the age 55, which is usually the cut-off. So, I’m it, hopefully. If he can’t get a donated kidney, then there is a long waiting list, based on several factors. It would take years, sometimes.
We’re sure that God will provide. He’s blessed us so much already!
Tuesday, July 10, 2007
Missing...one wallet!
I waited to post this, since Dave’s remission was and IS the biggest and best news we could ever had hoped for. But something did happen last week, to me, that wasn’t all that pleasant!
The kids and I were at the mall on Friday afternoon. I had promised them a trip to Build-A-Bear if everyone was “good”. So we ended up there, on a mission to make a bear for their dad. It would be from his boys, encouraging him to feel better soon. So we proceed to choose the bear, fill the bear, put two kissed hearts in the bear, and then give the bear an “air” shower. The boys chose Mr. Bear’s clothes; a fisherman’s outfit. It was actually a tie between Spiderman and Superman, so mom had to step in and offer a third possibility.
After we bought all the stuff, I took the kids to a front table, so we could get him dressed, before taking it home to dad. That’s when it happened!
I had my purse and another shopping bag on the floor, between my feet. But someone literally stole my entire purse from under my nose! I still don’t know how they did it. You hear about stuff like this happening, and I guess it really does.
We found my purse an aisle away, with all the contents (phone, IPod, Joe's epi-pens & keys) still in it…everything, except my wallet! Man!!! Like most moms at the end of the week, I was cash poor. I think I had about $1.50 total cash in there. But my credit cards, some gift cards, my driver’s license, and my Disneyland Club 33 card…they were all in there. For anyone who has had to quickly cancel their cards, it’s not fun. Try doing it at the mall, holding the hands of two boys, while waiting for the sheriff. I am a multi-tasking aficionado! :)
It was a good lesson for my oldest, who’s 9. He is at the age where wandering off sometimes occurs. I have told him that while most people are good, there are people out there that we have to protect ourselves against. I hate that we live in the kind of world which some of the stuff I did as a kid, I can’t let my boys do. Living in the somewhat plastic reality of south Orange County doesn’t help matters. Life is good here. It's clean and pretty, and perpetually new. We live in the 3rd safest small city in the nation. But petty crime does exist. Abduction does exist. Child molestation does exist. I hate it, but that doesn’t make it go away. It was a wake up call for all of us.
We haven’t found my wallet or any of its contents…no big surprise. But I have my two most important , irreplaceable treasures. Safe and intact; my boys!
The kids and I were at the mall on Friday afternoon. I had promised them a trip to Build-A-Bear if everyone was “good”. So we ended up there, on a mission to make a bear for their dad. It would be from his boys, encouraging him to feel better soon. So we proceed to choose the bear, fill the bear, put two kissed hearts in the bear, and then give the bear an “air” shower. The boys chose Mr. Bear’s clothes; a fisherman’s outfit. It was actually a tie between Spiderman and Superman, so mom had to step in and offer a third possibility.
After we bought all the stuff, I took the kids to a front table, so we could get him dressed, before taking it home to dad. That’s when it happened!
I had my purse and another shopping bag on the floor, between my feet. But someone literally stole my entire purse from under my nose! I still don’t know how they did it. You hear about stuff like this happening, and I guess it really does.
We found my purse an aisle away, with all the contents (phone, IPod, Joe's epi-pens & keys) still in it…everything, except my wallet! Man!!! Like most moms at the end of the week, I was cash poor. I think I had about $1.50 total cash in there. But my credit cards, some gift cards, my driver’s license, and my Disneyland Club 33 card…they were all in there. For anyone who has had to quickly cancel their cards, it’s not fun. Try doing it at the mall, holding the hands of two boys, while waiting for the sheriff. I am a multi-tasking aficionado! :)
It was a good lesson for my oldest, who’s 9. He is at the age where wandering off sometimes occurs. I have told him that while most people are good, there are people out there that we have to protect ourselves against. I hate that we live in the kind of world which some of the stuff I did as a kid, I can’t let my boys do. Living in the somewhat plastic reality of south Orange County doesn’t help matters. Life is good here. It's clean and pretty, and perpetually new. We live in the 3rd safest small city in the nation. But petty crime does exist. Abduction does exist. Child molestation does exist. I hate it, but that doesn’t make it go away. It was a wake up call for all of us.
We haven’t found my wallet or any of its contents…no big surprise. But I have my two most important , irreplaceable treasures. Safe and intact; my boys!
Saturday, July 7, 2007
Remission.....At last!!
I am so thrilled to post this! We got Dave's latest test results yesterday, and it shows that the disease is no longer active, he is in REMISSION!!! Praise God!
This has been the hardest thing we, as a family, have had to go through. With God's grace, maybe we won't ever have to go through something like this again.
The last 10 months have been really hard on his kidneys. So, while the Rituxan infusions still may work at getting his kidneys to function again, right now they are only functioning at 10%. he will begin dialysis this coming week. But we are holding firm that God's in control of this situation, and that His timing is perfect.
The great thing about remission (besides the obvious) is that now his other vital organs will be safe! Many Wegener's patients experience life threatening lung, heart, and brain conditions that can not be treated effectively. So we are beyond relieved!! Also, since he is in a remission state, if he needs a kidney transplant, he is eligible now.
Thanks for all the prayers these many months. We are positive that without prayer, the results of the this situation would not have been so great!
As for me, I'm floating, and when my feet touch the ground, I'm dancing!! Thank you Lord for healing my guy!!
This has been the hardest thing we, as a family, have had to go through. With God's grace, maybe we won't ever have to go through something like this again.
The last 10 months have been really hard on his kidneys. So, while the Rituxan infusions still may work at getting his kidneys to function again, right now they are only functioning at 10%. he will begin dialysis this coming week. But we are holding firm that God's in control of this situation, and that His timing is perfect.
The great thing about remission (besides the obvious) is that now his other vital organs will be safe! Many Wegener's patients experience life threatening lung, heart, and brain conditions that can not be treated effectively. So we are beyond relieved!! Also, since he is in a remission state, if he needs a kidney transplant, he is eligible now.
Thanks for all the prayers these many months. We are positive that without prayer, the results of the this situation would not have been so great!
As for me, I'm floating, and when my feet touch the ground, I'm dancing!! Thank you Lord for healing my guy!!
Thursday, July 5, 2007
Back home tonight...
After spending the day at UCI, getting what Dave calls “spigots” put in his arm and chest, he’s back home tonight! Thanks for all the prayers. As usual, God led us to a great doctor who did a beautiful job on the surgery. The nursing staff was great, too.
So now he’s ready to begin Dialysis as soon as he needs to. We’re waiting to hear from the nephrologist as to when he thinks starting would be advantageous. While we both have mixed feelings about starting dialysis, it just makes sense that he’ll feel better after he gets some of that crud cleaned out of his blood. Taking a lot of the work off of his struggling kidneys.
We’ll keep you all up to date on the happenings. Thanks for all the support!
So now he’s ready to begin Dialysis as soon as he needs to. We’re waiting to hear from the nephrologist as to when he thinks starting would be advantageous. While we both have mixed feelings about starting dialysis, it just makes sense that he’ll feel better after he gets some of that crud cleaned out of his blood. Taking a lot of the work off of his struggling kidneys.
We’ll keep you all up to date on the happenings. Thanks for all the support!
Tuesday, July 3, 2007
Pre-Op Today
Dave saw Dr. Kubaska, a vascular surgeon at UCI today. He will go forward with surgery on Thursday to place the fistula and a perma-line (which ironically is a temporary line) so that dialysis can begin right away, if needed.
Today consisted of all the pre-op stuff plus a fun new procedure called “vein mapping”. He left the hospital with purple marker all over his arms…looking like a map!
His blood Creatinine level is still rising; a few tenths of a point, but still rising. So we’re both very glad that this procedure is happening. At least now, if things get to a dangerous level, he can go right in for dialysis.
If you are reading this before Thursday 1pm, PDT….please say a little prayer that all goes well during the short surgery. Having any type of kidney failure puts you a greater risk during any procedure using general anesthesia. God is in control!
On a lighter note; have fun at your 4th of July celebrations! We are going to have a little get-together, ourselves. BBQ a few burgers and invite the neighborhood kids over for Dave’s annual pyrotechnical extravaganza! Should be fun. We need a day off with some fun!!
Today consisted of all the pre-op stuff plus a fun new procedure called “vein mapping”. He left the hospital with purple marker all over his arms…looking like a map!
His blood Creatinine level is still rising; a few tenths of a point, but still rising. So we’re both very glad that this procedure is happening. At least now, if things get to a dangerous level, he can go right in for dialysis.
If you are reading this before Thursday 1pm, PDT….please say a little prayer that all goes well during the short surgery. Having any type of kidney failure puts you a greater risk during any procedure using general anesthesia. God is in control!
On a lighter note; have fun at your 4th of July celebrations! We are going to have a little get-together, ourselves. BBQ a few burgers and invite the neighborhood kids over for Dave’s annual pyrotechnical extravaganza! Should be fun. We need a day off with some fun!!
Monday, July 2, 2007
News...
For everyone who has been praying for us, thank you so much! I have a little praise report:
I talked to the Rheumatologist , and found out a couple things that gave us some hope. First, the Rituxan Infusions Dave took will take about 4 months to show true e and complete effectiveness. We are at about the 7 week marker, and one of his blood test values that show active disease IS actually coming down….a great sign! Plus, aside from the side effects he gets from tapering off the Prednisone, he is feeling good. That is a HUGE sign.
The doc said that YES, the meds could still help heal the kidneys, but it would take a bit longer to achieve that effect. So, while he may have to go on dialysis for awhile, his kidneys could very well respond to the Rituxan treatment a couple months from now. That is awesome news!!
Right now, we are not going to worry about transplant. Dave will check his kidney function every week, and get ready to start dialysis (seeing the vascular surgeon this week, etc.), just in case. But we also believe in miracles of every size. God’s timing is different than ours, so whatever direction we have to take, its fine. It is a scary thing walking in faith. Before this, I can tell you, I have never done it. For some reason, when we are at the lowest, He gives us a dose of Hope. Throughout this whole ordeal God always shows us a little light.
Thank you for your love, and prayers!
***Awesome Verse! God IS faithful!!
Facing the spiritual battle (sin and/or discouragement)
Finally, dear brothers and sisters, I ask you to pray for us. Pray first that the Lord's message will spread rapidly and be honored wherever it goes, just as when it came to you. Pray, too, that we will be saved from wicked and evil people, for not everyone believes in the Lord. But the Lord is faithful; he will make you strong and guard you from the evil one.… May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ.
2 Thessalonians 3:1-5 NLT
I talked to the Rheumatologist , and found out a couple things that gave us some hope. First, the Rituxan Infusions Dave took will take about 4 months to show true e and complete effectiveness. We are at about the 7 week marker, and one of his blood test values that show active disease IS actually coming down….a great sign! Plus, aside from the side effects he gets from tapering off the Prednisone, he is feeling good. That is a HUGE sign.
The doc said that YES, the meds could still help heal the kidneys, but it would take a bit longer to achieve that effect. So, while he may have to go on dialysis for awhile, his kidneys could very well respond to the Rituxan treatment a couple months from now. That is awesome news!!
Right now, we are not going to worry about transplant. Dave will check his kidney function every week, and get ready to start dialysis (seeing the vascular surgeon this week, etc.), just in case. But we also believe in miracles of every size. God’s timing is different than ours, so whatever direction we have to take, its fine. It is a scary thing walking in faith. Before this, I can tell you, I have never done it. For some reason, when we are at the lowest, He gives us a dose of Hope. Throughout this whole ordeal God always shows us a little light.
Thank you for your love, and prayers!
***Awesome Verse! God IS faithful!!
Facing the spiritual battle (sin and/or discouragement)
Finally, dear brothers and sisters, I ask you to pray for us. Pray first that the Lord's message will spread rapidly and be honored wherever it goes, just as when it came to you. Pray, too, that we will be saved from wicked and evil people, for not everyone believes in the Lord. But the Lord is faithful; he will make you strong and guard you from the evil one.… May the Lord bring you into an ever deeper understanding of the love of God and the endurance that comes from Christ.
2 Thessalonians 3:1-5 NLT
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