What a busy summer this has been! We began by going to Kansas City's KU Hospital for Jeremy's donor evaluation. It was a long day of tests, but we received good news that not only was Jeremy approved to donate again, but his cholesterol, blood sugars and blood pressure were the best they have been in years! He has worked very hard to get his body in great shape to benefit Joe and his own recovery. I am very proud of him.
Fun fact: tradition in transplant circles is to name the donated organ and make t-shirts! The kids decided to name Jeremy's kidney "Steve" from Cloudy with a Chance of Meatballs 2.
Jump forward a few weeks and Children's Mercy finally agreed on a surgery date, early August. We will need to go back one more time prior to surgery for pre-op, but otherwise we are ready.
All the planning and scheduling has come together so well. Friends and family and neighbors have generously offered so much help. We are so thankful. It has put my mind and heart at ease.
As we think through our needs for the next month, Jeremy had a great idea. We could use some meals to keep in our deep-freeze for when Jeremy is home post surgery with the girls and when we are all back home. Some would also be helpful before then too as we have many appointments to keep. These can be small meals for 2-3 people and some larger for all 5 of us. Joe's appetite is so unpredictable right now, so I have no ideas. He eats a lot of Ramen Noodles (low sodium and drained)! After surgery he can eat anything again, but until then we try to limit potatoes and cheese. He is so adapted to this diet now, that he monitors his intake himself.
What is most important to us now is your prayers and encouragement. We are all trying to take this one day-at-a-time. Thanks for taking the time to read this and please pray we feel God's grace as we journey along this road.
Thursday, July 10, 2014
Tuesday, May 13, 2014
Back on the road to transplant
We went to the Kansas City Children's Mercy Hospital last week for extensive evaluation again for Joe. His kidney function is now at the magical 20% function required for transplant. After about 12 appointments in two days we believe Joe will be approved for transplant. The nurse is now referring Jeremy to begin his testing again like he did last year. Jeremy will have to go to the KU hospital for evaluation because they will do his surgery to remove the kidney. We hope to go to KU within a few weeks. Once Jeremy's testing is finished and approved for transplant the teams will book the surgery. Our hope is that it will happen some time this summer, but it may be early fall.
Joe is not feeling great, but does okay most days physically. He is really battling anxiety, not surprising for a child facing such a difficult surgery and life-long reality of strict medicine regime and continued medical treatments daily. We really hoped and prayed the medical treatments would not be necessary after transplant, but the doctors do not believe that will be so for Joe.
We have learned that Jeremy will be in a separate hospital than Joey which is best for him, but hard on me to have my two favorite men in pain in separate locations. Jeremy's oldest sister has agreed to sit with him while he is in the hospital. This takes a huge weight off my shoulders! He is expected to stay in the hospital 2-3 days, but will require 4-6 weeks to recuperate.
On a happy note, I received a call from the Oklahoma Make-A-Wish foundation yesterday and they have approved Joey to receive a wish! We will meet with volunteers soon to interview Joe and find out what his "wish" will be. I am excited for him. My prayer is that his "wish" will enable him to forget his worries for a while and be a kid.
We know God works all things for His good for those that love the Lord. We believe He will use this trial to strengthen our son's faith and the faith of our whole family. I am thankful His mercies are new every morning!
This is a picture of Joe, Emma, my sister Jennifer, me, my brother-in-law Greg and Jeremy at our favorite diner, Town Topic. We love to eat breakfast here before going to appointments! This time we got to bring Jen and Greg with us. :)
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Joe is not feeling great, but does okay most days physically. He is really battling anxiety, not surprising for a child facing such a difficult surgery and life-long reality of strict medicine regime and continued medical treatments daily. We really hoped and prayed the medical treatments would not be necessary after transplant, but the doctors do not believe that will be so for Joe.
We have learned that Jeremy will be in a separate hospital than Joey which is best for him, but hard on me to have my two favorite men in pain in separate locations. Jeremy's oldest sister has agreed to sit with him while he is in the hospital. This takes a huge weight off my shoulders! He is expected to stay in the hospital 2-3 days, but will require 4-6 weeks to recuperate.
On a happy note, I received a call from the Oklahoma Make-A-Wish foundation yesterday and they have approved Joey to receive a wish! We will meet with volunteers soon to interview Joe and find out what his "wish" will be. I am excited for him. My prayer is that his "wish" will enable him to forget his worries for a while and be a kid.
We know God works all things for His good for those that love the Lord. We believe He will use this trial to strengthen our son's faith and the faith of our whole family. I am thankful His mercies are new every morning!
This is a picture of Joe, Emma, my sister Jennifer, me, my brother-in-law Greg and Jeremy at our favorite diner, Town Topic. We love to eat breakfast here before going to appointments! This time we got to bring Jen and Greg with us. :)
Wednesday, February 19, 2014
February 2014 Update on our son
Last month, we noticed his function had dropped from 28% to 23%. I began to notice more fatigue and difficulty sleeping for Joe. He will also have days that he has no desire to eat. Joe has lost 4 pounds in the last 2 months. The nephrologist said that if the function did not come up we would need to make contact with Children's Mercy Hospital in Kansas City again. Unfortunately, his function dropped another percent, to 22%.
We saw our kidney doctor on Monday in Oklahoma City. He believes it is time to go back to Kansas City and prepare for transplant. He estimates we have about 6 months, before Joe gets real sick.
This is hard for us all to take in and process. Jeremy and I have really struggled this week having to face this reality again. Joe has taken it very hard. His anxiety is really high.
I have called Children's Mercy and I am waiting to hear back from them on when we need to return to renew Joe and Jeremy's evaluation for transplant. I assume we will go sometime in March.
Will you pray with us for our son's anxiety and overall nervousness to go down, for Jeremy and I to take each day calmly and with peace so we can help our kids deal with this stress and for Joe to not feel like so poorly? We trust God with our son. We trust God is holding us in His righteous right hand (Isa 40:31). We know He has good plans for us (Jer 33:11).
Thank you. We can use all of your encouraging words and support until we can get our "feet back under us" and are ready to fight.
Monday, June 3, 2013
Summer Update
Well, to start off, I apologize to you for taking so long to write an update. I have a dear prayer warrior that has asked twice if she had missed an update. No, life has just been busy and there hasn't been a lot to say.
Joe is feeling well, his kidney function has been sitting fairly steady in the upper 20%. Anything above 20% delays his transplant. He has still had to increase medication at each monthly blood draw until last month. In May he was able to cut out 2 pills! That is the first time he has had any decrease in at least a year, so you can see we were happy!
Joe and I spent today in OKC seeing his nephrologist and doing a study visit for kids with chronic kidney disease. It was a long day, but we personally learn a lot about Joe's health and the field of nephology has learned so much and continues to study the all around effects kidney disease has on children. As an added bonus, Joe gets paid for all the poking and prodding at least once a year!
Today's blood work showed a slight decrease in function, so we still do not know when we can do the transplant surgery. Jeremy and Joe are all ready to go once we get the "go ahead" from the team.
Thank you for your continued prayers, Joe's anxiety is getting so much better. I was reporting to the psychologist at OU just how well he is doing. We praise God for His faithfulness. Our prayers now focus on asking God for His perfect timing and that Joe will not have to get very sickly before he can have his new kidney. Thank you for praying for all five of us. We cherish each one of you!
Joe is feeling well, his kidney function has been sitting fairly steady in the upper 20%. Anything above 20% delays his transplant. He has still had to increase medication at each monthly blood draw until last month. In May he was able to cut out 2 pills! That is the first time he has had any decrease in at least a year, so you can see we were happy!
Joe and I spent today in OKC seeing his nephrologist and doing a study visit for kids with chronic kidney disease. It was a long day, but we personally learn a lot about Joe's health and the field of nephology has learned so much and continues to study the all around effects kidney disease has on children. As an added bonus, Joe gets paid for all the poking and prodding at least once a year!
Today's blood work showed a slight decrease in function, so we still do not know when we can do the transplant surgery. Jeremy and Joe are all ready to go once we get the "go ahead" from the team.
Thank you for your continued prayers, Joe's anxiety is getting so much better. I was reporting to the psychologist at OU just how well he is doing. We praise God for His faithfulness. Our prayers now focus on asking God for His perfect timing and that Joe will not have to get very sickly before he can have his new kidney. Thank you for praying for all five of us. We cherish each one of you!
Sunday, March 3, 2013
To Keep You Updated
We are in a waiting pattern right now. Jeremy should received full clearance to be able to donate his kidney to Joey this week. They asked for an EKG to be done locally before they said yes. Our physician said everything looked fine on it, so we fully expect Kansas City to give their okay by Wednesday.
Joey is showing an improvement in his kidney function. He is currently at 27% function. At this level we cannot schedule surgery. He must be at or below 20%. At first, I really struggled with this, but I am learning to wait patiently on God's perfect timing. I thought I had a "great" plan for how we could schedule this major "disruption" into our lives and be on our merry way. Of course, God's plan are always better than our own, so we wait.
Joey is feeling okay right now. He is dealing with more psychologically than the physical pains. Medicines are still on-going. We are hoping for our insurance company to approve a new therapist out-of-network. We feel she can help Joey and us prepare for his transplant and life post surgery.
Joey was able to play in his first volleyball tournament this past weekend! It was a lot of fun and a great learning experience, ie we didn't win a game. :) We were thrilled with Joey's energy level throughout the day. So all in all it was a great day!
Please keep praying for us. My concerns with waiting are just wondering what Joey will feel like by the time he is allowed the transplant and what I will need to do with our girls during our hospital stay. Thank you for your words of encouragement and prayers. Thanks for passing this blog along to your friends and trusted prayer warriors. I know without a doubt the reason for my peace is I've received so many prayers on our behalf. God bless!
Joey is showing an improvement in his kidney function. He is currently at 27% function. At this level we cannot schedule surgery. He must be at or below 20%. At first, I really struggled with this, but I am learning to wait patiently on God's perfect timing. I thought I had a "great" plan for how we could schedule this major "disruption" into our lives and be on our merry way. Of course, God's plan are always better than our own, so we wait.
Joey is feeling okay right now. He is dealing with more psychologically than the physical pains. Medicines are still on-going. We are hoping for our insurance company to approve a new therapist out-of-network. We feel she can help Joey and us prepare for his transplant and life post surgery.
Joey was able to play in his first volleyball tournament this past weekend! It was a lot of fun and a great learning experience, ie we didn't win a game. :) We were thrilled with Joey's energy level throughout the day. So all in all it was a great day!
Please keep praying for us. My concerns with waiting are just wondering what Joey will feel like by the time he is allowed the transplant and what I will need to do with our girls during our hospital stay. Thank you for your words of encouragement and prayers. Thanks for passing this blog along to your friends and trusted prayer warriors. I know without a doubt the reason for my peace is I've received so many prayers on our behalf. God bless!
Thursday, February 7, 2013
Jeremy's Donor Evaluation
We just got home from Kansas City tonight. We spent the last two days doing Jeremy's donor evaluation. It was exhausting, very emotional and in the end very good.
I struggled during some of our meetings with the weight of these two surgeries (Jeremy's and Joey's). Jeremy did well, but it was difficult for him too. They evaluate every aspect of him and his family. Past surgeries, medications, family deaths, illnesses, emotions, family dynamics and support.
The funny part of our time was Jeremy asked every person we saw what the religious affliation was of the hospital St. Luke's. On Wednesday, we received three different answers and they were all wrong! My sister looked it up and discovered it is Episcopalian, FYI. Today, we met the priest who is Jeremy's advocate in the donation and he was the first to confirm the denomination. Of course! I have to say, the surgeon did get it right!
Anyway, we did get good results. The surgeon is pleased with Jeremy's kidneys. They have to be sure there is only one artery leading from the aorta to the kidney, it makes it easier on Joey's surgeon. It looks like there is and they plan to take his left kidney. Dr. Moore does think he will do Jeremy surgery at St. Luke's while Joey's will be at Children's Mercy. They will transport the kidney to Mercy. The doc joked that they would FedEx it over. This mom didn't find it funny, but Jeremy appreciated the brevity! We will just have to wait and see. For my own selfish reasons, I would like my boys under the same roof, but Jeremy would receive better care at an adult hospital.
Our last appointment was with a nephrologist to review all of the reports and test results. We were scared for a time that Jeremy's hemoglobin A1C test was slightly elevated, but this doctor said not to worry. A year ago the standard was higher and he would have easily cleared. So, it will likely be an issue discussed in the determination meeting, but not likely to stop us.
So from here, we are waiting on final test results and the transplant team to meet and decide if Jeremy can donate. We are feeling a lot of relief at this point. We have a lot of logistical planning we need to do before surgery, so please pray for us to have peace and wisdom in these matters. Please pray for the transplant team to make the best decision and for us to have peace with their decision. Also, Joe has been having some daily pain. It is better, we think we know the cause, but basically it is just a reality of where he is in kidney failure. So please pray for his comfort both physically and emotionally.
Emma had a great time with her aunt and cousins. We are so thankful for that! Thanks, Missy! Joe and Hope got the week with their Nana and Poppy, so I knew they would be great. We had so much help, we so valued the messages we received this week. Prayers and love from so many people really made a difference.
I struggled during some of our meetings with the weight of these two surgeries (Jeremy's and Joey's). Jeremy did well, but it was difficult for him too. They evaluate every aspect of him and his family. Past surgeries, medications, family deaths, illnesses, emotions, family dynamics and support.
The funny part of our time was Jeremy asked every person we saw what the religious affliation was of the hospital St. Luke's. On Wednesday, we received three different answers and they were all wrong! My sister looked it up and discovered it is Episcopalian, FYI. Today, we met the priest who is Jeremy's advocate in the donation and he was the first to confirm the denomination. Of course! I have to say, the surgeon did get it right!
Anyway, we did get good results. The surgeon is pleased with Jeremy's kidneys. They have to be sure there is only one artery leading from the aorta to the kidney, it makes it easier on Joey's surgeon. It looks like there is and they plan to take his left kidney. Dr. Moore does think he will do Jeremy surgery at St. Luke's while Joey's will be at Children's Mercy. They will transport the kidney to Mercy. The doc joked that they would FedEx it over. This mom didn't find it funny, but Jeremy appreciated the brevity! We will just have to wait and see. For my own selfish reasons, I would like my boys under the same roof, but Jeremy would receive better care at an adult hospital.
Our last appointment was with a nephrologist to review all of the reports and test results. We were scared for a time that Jeremy's hemoglobin A1C test was slightly elevated, but this doctor said not to worry. A year ago the standard was higher and he would have easily cleared. So, it will likely be an issue discussed in the determination meeting, but not likely to stop us.
So from here, we are waiting on final test results and the transplant team to meet and decide if Jeremy can donate. We are feeling a lot of relief at this point. We have a lot of logistical planning we need to do before surgery, so please pray for us to have peace and wisdom in these matters. Please pray for the transplant team to make the best decision and for us to have peace with their decision. Also, Joe has been having some daily pain. It is better, we think we know the cause, but basically it is just a reality of where he is in kidney failure. So please pray for his comfort both physically and emotionally.
Emma had a great time with her aunt and cousins. We are so thankful for that! Thanks, Missy! Joe and Hope got the week with their Nana and Poppy, so I knew they would be great. We had so much help, we so valued the messages we received this week. Prayers and love from so many people really made a difference.
Saturday, January 19, 2013
Feeling the Squeeze!
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!
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!
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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