We are preparing for another trek to Kansas City. This time just me and Jeremy. We will go early in February to evaluate Jeremy for donation. This is a full day and a half of testing and appointments. We are not concerned about this time except for leaving our kids. Our daughter is having a hard time with us being gone. We would appreciate your prayers for peace and joy while we are gone.
Joey has done very well for a few months. This month's blood work showed a slight decrease in kidney function. He is also having some kind of pain nearly daily. Either his bladder, kidney's or stomach hurt. Please pray that these symptoms subside quickly.
We are all showing "signs of stress". Whether it is trouble sleeping, depression or out right anger we seem to all be feeling the strain. We have some great people in our life loving us and praying for us. We are also seeking counseling to help us figure out the best way to deal with all the pressure.
I'll be sure to update again when we return from Kansas City with results. Thank you for all your notes of encouragement, prayers and expressions of love. We feel very blessed. Thanks for taking an interest in our family!
Saturday, January 19, 2013
Wednesday, November 21, 2012
We have much to be thankful for...
I have always believed God new exactly what He was doing when He created each of my children. Especially our son, Joe. Joey was born with a "birth defect" which has led to this road we are now on. Today we received confirmation of Psalms when it say, "You know my inmost being. You knit me together in my mother's womb."
Not only did our creator design my son with an extra flap of tissue, "post-urethral valves", but He did it with this day in mind. Today, November 21, 2012 we learned that Joey and Jeremy have, not the usual 3 shared strands of DNA, but 4. Sounds small to you maybe? Not to me. That extra "bonus" strand will help Joey in the future when he is needing another transplant. That extra strand reminds me that God is divine. He is right here with us on this road and will not leave us nor forsake us now or in the future.
Our coordinator, Rachel told Jeremy that they believe Joey will make a great patient. They want him to continue working on taking his medicine faithfully, on time and without exception. Jeremy will be contacted this next week about beginning his work up for donation.
Today has been a hard day. I am home sick and my husband and kids are celebrating Thanksgiving with out me. However, in the middle of my sadness, my Lord reminded me He loves me and will not forget us. I am glad I am home alone to focus on this news and celebrate our Creator without interruptions!
I pray you enjoy a fun Thanksgiving with your loved ones. Remember, God has a plan for you. It is a good and perfect plan.
Not only did our creator design my son with an extra flap of tissue, "post-urethral valves", but He did it with this day in mind. Today, November 21, 2012 we learned that Joey and Jeremy have, not the usual 3 shared strands of DNA, but 4. Sounds small to you maybe? Not to me. That extra "bonus" strand will help Joey in the future when he is needing another transplant. That extra strand reminds me that God is divine. He is right here with us on this road and will not leave us nor forsake us now or in the future.
Our coordinator, Rachel told Jeremy that they believe Joey will make a great patient. They want him to continue working on taking his medicine faithfully, on time and without exception. Jeremy will be contacted this next week about beginning his work up for donation.
Today has been a hard day. I am home sick and my husband and kids are celebrating Thanksgiving with out me. However, in the middle of my sadness, my Lord reminded me He loves me and will not forget us. I am glad I am home alone to focus on this news and celebrate our Creator without interruptions!
I pray you enjoy a fun Thanksgiving with your loved ones. Remember, God has a plan for you. It is a good and perfect plan.
Sunday, November 11, 2012
Transplant Evaluation
Sorry for the boring title, it's been a long week. We returned from our evaluation in Kansas City. We left after 15 appointments in 3 days! So you can understand our fatigue!
As my boys like to start the story, day 1 I passed out getting my blood drawn. Which at Mercy hospital is a CODE BLUE! Yikes! No less than 20 people responded to me fainting! In my defense, it was a student drawing the blood and they needed 8 vials (she got 2 before I went to "La La" land). Anyway the next day, Joe was a champ, he had 9 vials drawn! Turns out Jeremy is a really good match. We found out today, step two in the process that their blood mixes together without fighting. (Now they have NO excuses!)
We learned a whole lot, more than I care to share on here, but I do ask that you pray for step 3. Step 3 is that Jeremy's DNA and Joey's DNA share at least 3 common strands. I am praying for five. Don't ask me the details, I know not. However, I do understand that the more strands he matches now, the easier it is to get the next transplant. This I can explain if you ever want to know.
Dr. Warady anticipates that surgery will be early summer. It takes months to get both Jeremy and Joey worked up for surgery. Jeremy will need to got to St. Luke's in KC soon for his full evaluation.
We were told to treat this like a treatment, not a cure. Joey has a rough road ahead. The next 18 months will not be easy. However, I know our God goes before us in all of this. Anti-rejection meds are "no walk in the park". We are happy to learn his very restrictive diet will be gone after he gets a new kidney. We were told that some things we hoped for with transplant likely may not happen, but forward we will go.
Thanks for your continued support. We would be lost without your prayers.
As my boys like to start the story, day 1 I passed out getting my blood drawn. Which at Mercy hospital is a CODE BLUE! Yikes! No less than 20 people responded to me fainting! In my defense, it was a student drawing the blood and they needed 8 vials (she got 2 before I went to "La La" land). Anyway the next day, Joe was a champ, he had 9 vials drawn! Turns out Jeremy is a really good match. We found out today, step two in the process that their blood mixes together without fighting. (Now they have NO excuses!)
We learned a whole lot, more than I care to share on here, but I do ask that you pray for step 3. Step 3 is that Jeremy's DNA and Joey's DNA share at least 3 common strands. I am praying for five. Don't ask me the details, I know not. However, I do understand that the more strands he matches now, the easier it is to get the next transplant. This I can explain if you ever want to know.
Dr. Warady anticipates that surgery will be early summer. It takes months to get both Jeremy and Joey worked up for surgery. Jeremy will need to got to St. Luke's in KC soon for his full evaluation.
We were told to treat this like a treatment, not a cure. Joey has a rough road ahead. The next 18 months will not be easy. However, I know our God goes before us in all of this. Anti-rejection meds are "no walk in the park". We are happy to learn his very restrictive diet will be gone after he gets a new kidney. We were told that some things we hoped for with transplant likely may not happen, but forward we will go.
Thanks for your continued support. We would be lost without your prayers.
Saturday, November 3, 2012
Kansas City, here we come!
Well, we have been redirected to Kansas City Mercy Hospital for Joe's transplant. We will go to Kansas City soon to get Joe tested and test Jeremy and myself for donation. It will be an intensive three days with 13 appointments! I am thankful, the tests are pretty non-invasive for Joe. The hardest is blood work and he is a pro at that now!
Please be praying for us, as the appointments draw near, we are all getting more nervous and stressed. We ask that you pray that we can take in all the education information that we will need and can ask wise, clear questions of our doctors. Please also pray that we get the best doctors, both in skill and "bed-side manner". I know the transplant will happen in God's perfect timing. He never shows up too early and is NEVER late!
I feel more peace right now than I have in a while and I know that is directly because of the many prayers offered on our behalf. Many prayers are coming from people we have never met. Let me say thank you! The comments on here have been very uplifting and we all appreciate them. Please also pray for our daughters, especially Emma, as she is very aware of the stress and is needing some extra affirmation.
I'll let you know how our trip goes just as soon as I am able! God bless!
Please be praying for us, as the appointments draw near, we are all getting more nervous and stressed. We ask that you pray that we can take in all the education information that we will need and can ask wise, clear questions of our doctors. Please also pray that we get the best doctors, both in skill and "bed-side manner". I know the transplant will happen in God's perfect timing. He never shows up too early and is NEVER late!
I feel more peace right now than I have in a while and I know that is directly because of the many prayers offered on our behalf. Many prayers are coming from people we have never met. Let me say thank you! The comments on here have been very uplifting and we all appreciate them. Please also pray for our daughters, especially Emma, as she is very aware of the stress and is needing some extra affirmation.
I'll let you know how our trip goes just as soon as I am able! God bless!
Monday, October 1, 2012
On the Road Again (with Momma Bear)
October 1, 2012
We were back on the road again to OKC. This drive is getting less and less enjoyable! We sometimes wonder if we will ever want to go to OKC again just for fun. But alas, there we were cruising down the Turner Turnpike for another doctor's appointment.
This time we were doing some testing with our urologist. The tests came back positive. Joey's bladder is doing well and will not need any additional work prior to receiving a new kidney. We praise God for that news! He is always faithful and gracious.
By the way, Momma Bear showed up at today's appointment. I think I even scared Jeremy! In case you are buddies or close to any medical specialists, will you please remind them that what is ordinary in their work life is anything but ordinary to their patients and families. Our doctor accidently starting to call me "high strung"! Poor guy. Yes I was, but I had reason to be a little high strung! Don't get me wrong, he is a great doctor and feel priviledged to have him for ten years now, but a momma will stand up and fight for her cub when needed!
In my last blog I mentioned that we were finally at the transplant stage. At the last blood test Joey has 19% function remaining. We have been referred to the transplant team. Unfortunately they are not as eager to see us as we are to see them! We expect to hear from them soon and get to finally ask so many of the questions we have. Until then, we (I) will try to be patient. This team will take us all the way through transplant. ~so I really need to be nice! ;)
I have some specific prayer requests. First, that God grants us peace. The stress is really wearing on Jeremy and I and therefor, we know, affecting our kids. Joey is handling it very well. We realize he doesn't understand it all and doesn't need to either. We pray that Emma and Hope don't get lost during this time. It is very hard to fight for appointments, remember medicine, treatments, and be the mom and dad all three of our kids need us to be. We realize we need to cut back in many areas of our life, but that is not easy for either of us. Jeremy and I both love to lead, volunteer and stay busy. However, we know God is calling us to slow down and walk this road with Him.
Secondly, please pray that we get all necessary testing done on Joey and us to find him the perfect match before the need for dialysis. It is the desire of us all that we do not have to go down that road.
Thank you for all the comments and prayers. I cherish every one. Please keep sharing this with anyone who is willing to pray for us and our journey. May God bless you!
We were back on the road again to OKC. This drive is getting less and less enjoyable! We sometimes wonder if we will ever want to go to OKC again just for fun. But alas, there we were cruising down the Turner Turnpike for another doctor's appointment.
This time we were doing some testing with our urologist. The tests came back positive. Joey's bladder is doing well and will not need any additional work prior to receiving a new kidney. We praise God for that news! He is always faithful and gracious.
By the way, Momma Bear showed up at today's appointment. I think I even scared Jeremy! In case you are buddies or close to any medical specialists, will you please remind them that what is ordinary in their work life is anything but ordinary to their patients and families. Our doctor accidently starting to call me "high strung"! Poor guy. Yes I was, but I had reason to be a little high strung! Don't get me wrong, he is a great doctor and feel priviledged to have him for ten years now, but a momma will stand up and fight for her cub when needed!
In my last blog I mentioned that we were finally at the transplant stage. At the last blood test Joey has 19% function remaining. We have been referred to the transplant team. Unfortunately they are not as eager to see us as we are to see them! We expect to hear from them soon and get to finally ask so many of the questions we have. Until then, we (I) will try to be patient. This team will take us all the way through transplant. ~so I really need to be nice! ;)
I have some specific prayer requests. First, that God grants us peace. The stress is really wearing on Jeremy and I and therefor, we know, affecting our kids. Joey is handling it very well. We realize he doesn't understand it all and doesn't need to either. We pray that Emma and Hope don't get lost during this time. It is very hard to fight for appointments, remember medicine, treatments, and be the mom and dad all three of our kids need us to be. We realize we need to cut back in many areas of our life, but that is not easy for either of us. Jeremy and I both love to lead, volunteer and stay busy. However, we know God is calling us to slow down and walk this road with Him.
Secondly, please pray that we get all necessary testing done on Joey and us to find him the perfect match before the need for dialysis. It is the desire of us all that we do not have to go down that road.
Thank you for all the comments and prayers. I cherish every one. Please keep sharing this with anyone who is willing to pray for us and our journey. May God bless you!
Monday, September 17, 2012
We are a family of five, going down the road of life. We have had many exciting destinations and some scary stops, but we are in this together and can't wait to see the other side.
Our son has been diagnosed with well, lots of labels. Hydronephrosis, high blood pressure, nephrogenic diabetes insipidus, urinary reflux, kidney disease and now our latest, kidney failure.
It all began when I was about 5 months pregnant. Our ultrasound showed "a large bladder". We were told, the doctors wanted to see the baby empty his bladder. So they asked us to come back for a second ultrasound in a month. We then learned what the doctors were fearing, our son could not empty his bladder in utero. That doesn't seem too bad until you realize that babies drink amniotic fluid and cycle it through their systems. Our son had a tiny flap of skin blocking his urethra (pee tube).
At five days of life our very healthy 9lb 9oz boy went in for surgery at OU Childrens' Hospital and had that tiny skin cleared. Unfortunately, the damage was done.
Jump forward 10 years and 5 months and we are now facing what the doctors suspected for Joe, kidney failure.
Joe is a funny, sweet, loving (at times), brave kid. He has endured more in his 10 years medically than Jeremy and I have combined. He has come away with some scars, but amazingly very "well adjusted".
I hope this blog can keep those who are praying for Joe and the rest of us (Dad-Jeremy, Mom-Carrianne, Sis-Emma, baby Sis-Hope) informed of the journey. I am finding it difficult to keep up with all the phone calls and texts. It is especially hard with each new diagnosis. So please, don't be offended if we need some time. We want to hear from you and we do need to talk about this, but it is often hard. Please share this with anyone willing to pray for us. We believe unashamedly in the power of prayer and the healing of our Lord.
Jeremy came home today and said, "I don't know what the road hold, but we know Who holds the road." Personally I think he read this in a fortune cookie, but hey, it works!
God's not done with us yet. See you on the road!
Our son has been diagnosed with well, lots of labels. Hydronephrosis, high blood pressure, nephrogenic diabetes insipidus, urinary reflux, kidney disease and now our latest, kidney failure.
It all began when I was about 5 months pregnant. Our ultrasound showed "a large bladder". We were told, the doctors wanted to see the baby empty his bladder. So they asked us to come back for a second ultrasound in a month. We then learned what the doctors were fearing, our son could not empty his bladder in utero. That doesn't seem too bad until you realize that babies drink amniotic fluid and cycle it through their systems. Our son had a tiny flap of skin blocking his urethra (pee tube).
At five days of life our very healthy 9lb 9oz boy went in for surgery at OU Childrens' Hospital and had that tiny skin cleared. Unfortunately, the damage was done.
Jump forward 10 years and 5 months and we are now facing what the doctors suspected for Joe, kidney failure.
Joe is a funny, sweet, loving (at times), brave kid. He has endured more in his 10 years medically than Jeremy and I have combined. He has come away with some scars, but amazingly very "well adjusted".
I hope this blog can keep those who are praying for Joe and the rest of us (Dad-Jeremy, Mom-Carrianne, Sis-Emma, baby Sis-Hope) informed of the journey. I am finding it difficult to keep up with all the phone calls and texts. It is especially hard with each new diagnosis. So please, don't be offended if we need some time. We want to hear from you and we do need to talk about this, but it is often hard. Please share this with anyone willing to pray for us. We believe unashamedly in the power of prayer and the healing of our Lord.
Jeremy came home today and said, "I don't know what the road hold, but we know Who holds the road." Personally I think he read this in a fortune cookie, but hey, it works!
God's not done with us yet. See you on the road!
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