Life After Transplant

I have had quite a few people indicate that they thought transplant is a cure. I would like to spend some time to let you all know what day to day life is like for us right now. 

I would like to start out by saying that a transplant is not a cure its just a really good life saving band-aid but it is not a cure.  It is also not permanent when Charlie got one of Jeff's kidneys we were told that Jeff and Charlie were such a good match that if we do a good job taking care of Charlie's kidney it could last 35 years. That is a really long time for a transplanted organ to last and we think that it is god watching over Charlie that we were given those odds. With that being said there are many things that could put Charlie's kidney into rejection. His medications are balanced carefully to make sure he has the right therapeutic dose of meds. Currently that is monitored through monthly lab draws that means he gets poked in the arm and they take a few vials of blood. Since he has gone down to once a month lab draws he gets upset when we talk about labs. He is a brave little boy and does an amazing job getting poked but that doesn't mean he doesn't fight back a little. They would like urine samples but Charlie isn't potty trained so that means either bagging him till he pees (Not fun for him at all) or he has to have a catheter put in to collect urine (even more not fun). This is the first time since Charlie first got sick that he has had labs this far apart. he is also down to seeing his amazing Dr. every few months. also very strange for us as we were seeing her every month for about 2 years now.

Charlie currently has to have meds 5 times a day. His one anti rejection medication has to be taken every 8 hours with in 10 min of the time he needs to have the dose, he has that med at 6 am, 2 pm, and 10 pm. Then his next med he also needs 3 times a day, 8 am, 2 pm, and 8 pm at the 8 am time we have a few meds that he takes. All the meds are liquid and taken orally, then he needs to drink at least 40 ounces of fluid a day to keep his kidney happy and healthy (that can be a challenge some days with a little kid). He does a great taking the meds but when we add a new one he gets really upset. We also have a blood pressure machine at home so we can take Charlies blood pressure a few times a week. 

The meds that help his body to not reject his kidney also cause his body's immune system to be weakened. So if charlie gets sick it is much harder for him to fight it off. It also means that there is a possibility his body could decide during whatever sickness to recognize his kidney as an object that doesn't belong and cause him to go into rejection. If Charlie has a fever over 101.2 that is automatic labs. If he has the fever with other symptoms that could mean a trip downtown to the hospital for and Emergency Department visit and possibly a hospital stay. All of this will always be a part of our lives. Charlie will never have a life free of meds, labs, potential hospital stays fear of going into rejection (although right now he doesn't really understand that he could ever go into rejection) this is his normal, our normal. 

For over a year now charlie has had and been fighting Epsom Barr Virus ( EBV) it is a form of mono. To be able to fight it he is on a lower dose of anti rejection meds to give his body a little extra fighting power. With that comes a few different risks. On one hand the lower anti rejection meds could cause his kidney to go into rejection. It also makes it so he can fight off smaller illnesses. On the other hand prolonged elevated numbers of EBV can cause Lymphoma in transplant patients. At Charlie's last appointment with his nephrologist (kidney dr) I had Jeff ask if we could have Charlie go back on to the normal dose of medications. To that Charlie's Dr said she would rather risk Charlie going into rejection then him getting cancer. All of this is hard on Jeff and I. 

One of our fears that we may not talk about often is that Willa or the new baby will get the same kidney disease that Charlie had/has Diffuse Masangial Sclerosis ( Natalie is to old to get it). It is a very rare disease that shows up before you are 3 years old. It is also said to be genetic. So we watch Willa a lot and ask each other do her eyes look swollen? How about her feet? Could they be a little bit swollen? 

Needless to say Kidney disease is still very real in our house and if we know you are sick we will probably avoid you and if we are sick we will probably stay home a lot more often as to not spread germs. Charlie has had his vaccines up till his 2 year shots and now for the rest of his life he can never get a live vaccine. He depends on the herd to keep him healthy. We are aware that we can't protect him from everything (even though we may want to) but when we can we do what we can to keep him healthy. 

June in a Nutshel

I'm just going to go through each family member.

 

Willa

About a week ago Willa had a well child check up. I kinda got behind on her because Charlie has so many appointments its just hard to add to the Dr visits for the other kids to the list. So she got some shots and did great for them and they also did some blood tests on her and her hemoglobin (Iron) is lower then it should be so we need to cut back on milk, try to get her to take a vitamin with iron in them and feed her more meat to try and get her iron levels up. They want repeat labs in about a week from now... The other test they did was a led test and she has slightly elevated led levels. We don't know where the slightly elevated led levels came from because we have cleaned up all the lead in our house and had our house inspected by the state and we were checked off being clean of lead in our house.

 

Charlie

At the beginning of the month Charlie had his monthly appointment with his Nephrologist (Kidney Dr) and for the most part Charlie looks great, his kidney is working great but he has a virus called Epsom Barr Virus (EBV) and he has had it for a few months despite adjusting his meds and using some essential oils on him it just wont go away. The virus from my understanding is like mono, also from my understanding when transplant patients get the virus they become at a higher risk for lymphoma. Charlie shows no sign in harboring cancer but his Dr. decided just to add a few extra labs onto his blood draw just to make sure no cancer was brewing in him. Well some of the labs she added were very slightly elevated so they wanted to do repeat labs this week. Well this week they were even more slightly elevated. We haven't heard anything from Charlie's Dr or his transplant coordinator so we don't really know what to think of these elevated levels in his blood we just know that they are there. It could be a few different things and I'm praying its not the lymphoma (cancer of the lymph nodes). Charlie's EBV results are at an all time high of about 74,000. A few hundred is considered a safe spot with the EBV and Charlie's is really high and has just been getting higher and higher the last few months despite trying to get rid of it.

 

Natalie

My sweet Natalie is almost 5 and getting ready to start kindergarten in the fall. I'm excited for her but I'm also worried. I feel that with all of Charlie's medical stuff that she is a little behind with her emotional development. She is a very smart kid, she catches on very quickly to new things and is always learning and paying attention to everything going on around her... But if something goes wrong it is like her world is ending and she cant control herself. She just falls apart. Everyone keeps telling me that school will be good for her but I still worry about her emotions.

 

Me (Sarah)

I'm trying to hold everything together and feel like I'm failing. I'm making sure that Charlie is getting his meds and the care he need on a daily basis. I'm trying to keep the kids safe during our kitchen remodel. I try not to be a shut in and go places aside from labs and Dr appointments. I try and keep in contact with friends but I feel like I mostly reach out to people and not many people reach out to me. I have been feeling very lonely lately like aside from my family I don't really have a close group of friends. I have close friends but not a close group of friends and not people that just drop by my house because they see my car outside or see us in out back yard most of my good friends live to far away to do a drop by and most of my new friends don't know me well enough at least that's my thoughts on the matter. I love my life so I don't know why I get down about friends not reaching out to me. I think a lot of people are afraid to get someone in my family sick because of Charlie's transplant and his weakened immune system and they also think that I have to much going on to have time. I hear a lot that friends don't reach out because they think I have enough going on with house remodeling and Charlie's medical stuff.

 

Jeff

Jeff is my rock through everything. He pushes us to work on our house so we can finish our very slow flip and move to our farm that we have yet to find. He works so hard at work that he often bring some work home. His work ethic is really quite amazing he is like the energizer bunny he just keeps going and going. I really think he is an amazing father to our kids. He will drop anything to come help me at labs if the kids are falling apart and I need help. He is always at Charlie's appointments. He will pick up food for us on his way home from work when all he wants to do is come home. Jeff also loves to play basketball; it helps him to de stress. He tries to play a few times a week. He plays open gym Sunday nights and before work on Wednesday and Fridays. On Sunday While at basketball Jeff hurt his finger. It turns out that he broke part of his pinky bone off. To add to the excitement Jeff gets to have surgery tomorrow (Friday) to have a small screw put into his finger.

 

It's never a dull moment in our house. If you were to come over once every week, every time you came over there would be something changed in our house. We are constantly working to finish our house so we can sell it and move to our farm. I hope you don't mind me rambling about my life right now. It feels good to get some of my thoughts written out.

 

 

This Last Year Has Been Quite a Year

 

It has been about a year since my last blog post and I'm ready to get back into blogging about my life. This blog post will be a recap of the last year.

 

Last June our family and friends put on a benefit for Charlie and it was amazing! We were able to pay off $36,000 in medical bills from Charlie's hospital stays. Yes, you read that right. When Charlie first got sick we didn't have very good insurance with a high deductible. Then Jeff switched jobs and got better insurance and because Charlie had Chronic Kidney Disease (CKD) he also got his own insurance. We also got enough money to save some for some of Charlie's future medical bills. All in all we were just blown away by the benefit. So many people spent hours planning and putting together such a fantastic event. The turn out was just humbling so many people came out to support us truly amazing!

 

July we were just living life with 3 kids waiting for a donor for Charlie and keeping up with Charlie's appointments and his nightly dialysis. Pretty uneventful.

 

August Natalie our oldest turned 4. Jeff and I had out 5th wedding anniversary. We worked on some house construction and we had our yard landscaped. I also had my 30th birthday and just a few days before I turned 30 we got a call telling us that they had decided to take Jeff off of the back burner and that he could be Charlie's donor. We were very excited and scared all at the same time. We knew Charlie needed his gift of life but Jeff being donor meant that I would I would have both Jeff and Charlie having major surgeries on the same day and I would be in the hospital with Charlie and Willa. Willa was 6 months old and was still nursing. It also meant that Natalie would be staying at my parents without her parents. It was decided that Transplant would be September 3rd. That gave us only a few weeks to get ready for transplant. Jeff had to try and get a project done at work and we were trying to finish up a remodeling project. We did not finish our project but that's ok we did it after transplant and some amazing people from our church helped us get some work done while we were in the hospital.

 

September was a very full month. Charlie and Jeff had transplant surgery on the 3rd Charlie was 2 1/2 at the time of his transplant. Jeff was told that it would take 6 weeks to recover and that was pretty right on. He stayed in the hospital for a few days then he went to my parents to stay with Natalie and our dog Hank. Meanwhile Charlie had his surgery and he did wonderful. There were so many people who came to the hospital to be with me while I waited for Charlie to get out of surgery. and my amazing cousin in law stayed at the hospital with me for a few days and helped out so much. Charlie was in the hospital for a few weeks and once he got out we had to bring him in for labs 3 times a week. Charlie has had blood drawn so many times and he has never had a pic line and he freaks out more when you put numbing cream on him then when he just gets poked. He is one brave little boy.

 

Fall

Life after transplant has been amazing. We were able to finish our back entry remodel project. Jeff and Charlie are feeling good. Charlie went from labs 3 times a week to twice a week then once a week and now Charlie is getting labs every other week. He also has monthly appointments with his Dr.

 

Winter

We had an awesome Christmas with family. I think that Willa really enjoyed her first Christmas she thought that presents were pretty cool. Natalie and Charlie also got lots of fun stuff. In January Jeff turned 34 and we also started our upstairs bathroom remodel project. We managed to keep our family healthy most of winter. Some people think that a transplant means cure but really its like a really big band aid. Charlie will be on meds that suppress his immune  system for the rest of his life. There is also no guarantee on how long Jeff's kidney will last before Charlie's body starts rejecting it. We hope it will last over 30 years because Jeff and Charlie were such a close match, but there are so many things that could trigger Charlie's body to reject his new kidney. Charlie turned 3 and Willa turned 1 in February. We had an awesome pool party planned for the kids that we had to cancel for all of our friends because Natalie was really sick. We were praying that Charlie wouldn't get What Natalie had but he did and he ended up going to the hospital for the first time since transplant the day after his party that only family went to. He was really sick and his body just couldn't fight it off. I believe Jeff told me that Charlie's fever got so high that they had to put ice packs on his body to cool him off. Then a few weeks later Charlie was in the hospital again due to another fever.

 

Spring

We signed Natalie up for kindergarten in the Watertown Mayer school district. She is so excited to start School in the fall and keeps telling everyone that she is going to be going to go to daddy's old school. We finished our bathroom remodel and started our kitchen remodel project. I have been spending time learning and using Young Living essential oils and at the end of march I took a MPS scar release therapy class. I learned about how scars affect your body and I think that what scar release does for your body is really cool. I had no idea how much scars can affect your body in different ways. Charlie also got his wish granted from Make a Wish. We all get to go on a Disney cruse to the Bahamas this fall/winter we don't have dates picked yet we are waiting on passports for everyone because they need them before the tickets can be picked up.  

 

I hope to get back to blogging on a regular basis and I'm sorry it has been so long since my last blog.

Control in the Fish Bowl

Hi all, this is Jeff.  I am going to do my best to frame up our lives from my perspective.  There are a couple of things that I struggle with on almost a daily basis:  how public our lives have become and how little control we have over our lives.  There are many more things to be thankful for.

Our lives have become so public.  It seems like our family has been put on display for everyone to see. Facebook and our website have allowed us to reach a large amount of people and spread the word about Charlie's condition and our family's struggle to tread water during all that we have endured.  Don't get me wrong, I think the awareness that everyone has about Charlie and our family is a testament to how much people around us care and to what ends our family and friends are willing to go to support us.  For that, we are truly blessed.  I would like to unplug at some point and retreat to our hide-away and enjoy things the way normal families do, hopefully that is coming in the not-so-distant future.

For the most part, we have a pretty firm grasp on Charlie's dialysis.  Things had been cruising along fairly smoothly until a couple weeks ago.  We noticed that the deliveries of the supplies were becoming smaller and smaller as we went along.  It finally got to the point where we ran out of one of the necessary supplies and had to improvise to get Charlie connected and disconnected.  Our current situation is stressful enough without these inventory related issues causing more grey hairs to show up...When telling the nurse about this shortage, she told us that she would provide the supplies from the hospital and instructed us that we needed to order more than what we need to prevent this from happening in the future.  Hopefully the dialysis phase will not go on for too much long;  Jessica, Kari and John Kral (Sarah's siblings) have been going through the process of becoming a donor.  I have too.  There is a 2-day transplant evaluation process that I will be going through on June 17th & 18th.  If all goes well, I think we can start talking about transplant.  To be completely transparent, this is a scary process.  I know there are no guarantees.  But I will do ANYTHING I can to help ensure that Charlie has an opportunity to live a full life.

God has blessed me with Sarah.  Sarah and I, while struggling through the stress, continue to grow with each other and I believe that we are stronger now than we were last year.

Natalie is becoming quite the tall, vocal young girl.  She is rapidly approaching 4 years old (August 3rd) and is wearing 5T clothing.  She is still my little peanut.  Natalie carried on a 5 minute conversation with her cousin Anthony tonight and I don't think Anthony got more than a "hello" in.

Charlie has been out of the hospital for almost 4 months now.  It doesn't seem like a long time when I say it, but when we were living in the hospital for long stretches of time, it seems like much, much longer.  He has grown more than 2 inches since he started dialysis.

Willa is growing like a weed.  She is 3 months old now and I'm sure Sarah is not looking forward to having a 3rd mobile child to watch after.  It seems like she is recognizing me more and more and seeing her gum-filled smile is really wonderful after a stressful day at work.

I want to mention poor Hank.  He is not receiving any attention from Sarah or myself and has become a jungle gym for Natalie and Charlie.  He is still the same lovable, whiny meat-head.

Thank you for all you do.  We appreciate everything that people have done to support us.  God has put us exactly where we need to be and surrounded us with great people.

-Jeff 

Life

I have thought about writing more often but I find it hard to to catch my breath. Our lives are more busy then I have ever imagined, with Natalie and Charlie running around and baby Willa in tow. Everyday has its challenges but at the end of the day we are grateful we have each other. 

Natalie is growing up so fast and becoming her own person. She knows what she likes and asks over and over to do things that she likes and if she doesn't like something she will let you know with a tantrum. We are working on her to show her emotions in a different way then tantrums but it takes time to train, some days she does great and says "Mom I'm sad we have to go!" When she says that it makes me so proud of her because I know she wants to throw that tantrum and she is trying not to. She is also loving being able to pick out her own outfits everyday. Right now she loves to put little books in her bag and to set up picnics with her play food. She also loves to play with Charlie and to help me out with Willa. At almost 4 she is such a little adult at times, just growing up so fast.

Charlie is amazing! With everything he has gone through the last few months he still manages to find joy in everything he does. I love hearing him laugh when he is really into a movie.  Everyday he is learning more and you can see his pride in it when he does something new. During the day he seems like a normal kid without any problems, he is walking, running, climbing and talking. Just last week he started going up the stairs again now I can't keep him off. When just a few months ago he couldn't do that because he was so sick and swollen that he wasn't moving and had stopped talking. Since starting dialysis he has re-learned everything. Even though Dialysis keeps him going its still challenging for everyday life. Charlie has to be hooked up everyday for 12 hours, that means we have to start giving him his meds and doing vitals by 7:30 so he can be hooked up and in bed by 8 pm so he can be unhooked by 8 am. If we have to leave in the morning everything is rushed, we have to unhook Charlie then give him his meds and do his vitals, not to mention getting everyone else ready fed and out the door. Dialysis helps Charlie to live right now but he needs a kidney transplant to save his life.  When he goes to his Dr appointments he says thank you to the lab tech after he/she draws blood from his arm so they can test it. If its a girl he will blow her a kiss good bye if its a guy he will give knuckles. Even though he knows that the lab people cause pain I want him to still have manors and because he says thank you and blows kisses EVERYONE knows who Charlie is. They also know who Charlie is from his scowl. He hates being touched by medical people and will let you know with a scowl as they walk in the room and a tantrum when the touch him, but he will always say thank you and if its a girl he will blow kisses and if its a guy give knuckles. 

Willa is a easy baby till about 8 pm. She sleeps most of the time. She is a very happy little girl during the day. She is fussy from 8 to 10 or 11 pm then sleeps most of the night waking once or twice to eat. At her 2 month appointment she was 100% in height and 90th% in weight. She is a little blessing.

Q & A: Our Lives

Q. How long has Charlie been on Dialysis?

A. He started on January 27th.

 
Q. How does home dialysis differ from hospital dialysis?

A. Peritoneal Dialysis (PD) is done every night for 12 hours.  This form of dialysis is performed at home, but only Jeff and I have been trained on how to administer the dialysis. Hemodialysis (HD) requires a trip to the hospital 3 or more times a week and be hooked up to a machine that takes his blood out of his body and cleans it. He would have to be hooked up for 4 hours without running around or eating during that time. Not to mention the only hospital that does it for little kids is an hour away from our house at Amplatz.

 
Q. How long is Charlie on dialysis each day?

 A.12 hours every day. 

 
Q.How is Charlie different now that he is on dialysis?

A. He is back to our trouble making little boy. He is such a trooper

 
Q. Is the home dialysis machine portable?

A. Yes, it even has a case that it fits into.

 Q. If you can take it other places, what all do you have to bring?

A. We have to bring the Cycler (dialysis machine) and what ever bags of solution we need. If we go out of state we can have the bags of solution sent to our hotel. 
 

Q. Is Charlie still on so many medications now that he is on dialysis?

A. He is on 3 different blood pressure medications, one thyroid medication, and 5 other vitamins and supplements.

 
Q. Is Charlie cooperative about the dialysis?

A. Yes, we put a TV in his room so he can watch a movies when he is stuck in bed awake. Since he is hooked up for 12 hours a day he often times doesn't sleep for 12 hours and needs some entertainment. 
 

Q. Does Charlie still need a transplant?

A. Yes, there is still a need for a transplant. Unless God heals him there is no other option but a transplant.
 

Q. If yes about the transplant - what is the timing?

A. As soon as we find a donor and can set up date with the surgeon and the donor.

  Q. What are the transplant people looking for as a donor match for transplants?

A. Someone between 18 and 50 in age and in good health. They told us that anyone can be tested to be a donor. Some people may not be a match for Charlie but they could swap with another donor that isn't a match for their kid/ friend then they would give their kidney to Charlie. Its called paired exchange. to be a direct donor you would have to have A+ or O+ blood type since charlie is A+.

 
Q. I know Charlie lost a lot of muscle mass when he was hospitalized so much this winter - how is he doing with re-learning to do things like crawl and walk and play and talk?

A. He has bounced back so fast since starting dialysis. He started crawling again soon after his 2nd birthday (2-9-14). The day Willa was born Charlie started walking again (2-24-14). Ever since then he has been acting like a normal 2 year old. He is talking all the time. 

   
Q. How is your family doing?

A. We are doing really well considering whats going on. Jeff and I have both accepted what is going on with Charlie which makes our lives 'easier'. We still wish that this wasn't going, on and Charlie was healthy. Some days its hard  but most of the time its our new 'normal'. Now that he is on dialysis it is much 'easier' as we don't have to worry so much about going to the hospital because dialysis helps keep him healthy. Although any sign of sickness Jeff and I are talking to Charlie's nurses to see if we need to bring him in. We are all happier not living at the hospital. We have a really hard time thinking about his Transplant. He will have a huge incision, he will be in the ICU for a week after the transplant and then in the hospital for another 2 weeks; so 3 weeks total. That just breaks my heart. I know it means he will be 'better' but what are baby has to go through to get better is something I would not wish upon anyone.

  
Q. What help can people provide to your family?

A. Meals, donations (to help with ALL the medical bills), prayer (pray that god will heal Charlie), company (since we can't leave the house as easy as we once could), support, and help with the house (cleaning, construction, landscaping anything to help us finish our house so we can move into a house that will better fit our family).

  Q. What happens if a donor match kidney is not found?

A. Charlie need's a kidney they will not stop looking till we find one. Right now he is on an inactive donor list that will become active if we can't find a match with in our family and friends that are being tested.

 
Q. Is there an ideal time to get a donor kidney?

A. As soon as possible.

Q. How is looking for a kidney for someone so young different than an adult who needs a kidney transplant (if anything)?

A. I'm not sure except I know that the younger you are the higher you are on the list to receive a kidney. Kids can and do have adult kidneys in there body.

Q. What is the procedure to hook Charlie up to dialysis and also to unhook him?

A. Check previous blog post. A Day of Dialysis

 
Q. In addition to dialysis are there other things you need to do each day to monitor Charlie?

A. We need to take Charlies blood pressure, temperature and weight 2 times every day (morning and night). Then he also need his medications every day.

 
Q. Are there results of some sort you are recording? Do those results get sent to someone who is monitoring Charlie?

A. We record the numbers from the cycler and Charlies vitals every day and once a week we give them to a nurse that talks to Charlie's Dr. about the numbers.

 
Q. Does the dialysis machine automatically send results (is there an internet connection on the machine?)

A. It does not and no there isn't internet on the cycler.

 
Q. How often are you discussing results with those who are monitoring Charlie?

A. Once a week. Unless we are having a problem then we can page them any time day or night.

 
Q. Do you have a normal range for results (whatever those are) so you have an idea that the dialysis is working?

A. Yes we do.

 
Q. Can Charlie roll over in his sleep and stop the machine from working in some manner?

A. He can sleep in any position he wants on occasion he will kink the line or need to be flipped over due to a low drain.

   
Q. Does Charlie have to be in bed when he is on dialysis? If yes, how is he doing with that? Does he seem to understand?

A. Yes, he does need to be in bed. Its normal for him now that he has been on it for a while. When he first started on dialysis he was to sick to fight being hooked up and now that he has been on it for a while he is used to it. Yes, there are times when he doesn't want to be in bed or he wants to be held, but for the most part he knows it his time to be in bed.

 
Q. How is Natalie doing with all of the attention Charlie needs and now with new baby Willa?

A. Natalie is AMAZING! She is my biggest helper. She and Charlie play so well together, it is so awesome to watch. When she wants mommy or daddy she tells us she need a snuggle. 

 Q. Do you receive updates on routine basis regarding Charlie's priority on the donor list? 

A. He is on an inactive list right now as we are testing family and friends first. 

 Q. Does he have a number at this point?

A. Not at this point but because he is so young he will be at the top of the list if there isn't a match withing the family and friends that are being tested.

Q. Does he have any priority because of his age?

A. Yes, he will be at the top of the list if he needs to go on the list.

Q. Is the dialysis frequency difficult to manage, especially with a 3 year old and a newborn?

A. It can be, Jeff and I try to start getting him ready for bed between 7 and 7:30 so he can be hooked up at or before 8. Some times its a challenge with the other kids but for the most part Jeff and I are a good team and can get it all taken care of with time to spare. 

Q. Are you both exhausted?

A. Most days I would say yes we are. Charlie wakes up a few times during the night, Willa is a night owl and also wakes up during the night and Natalie is an early bird. In any given night Jeff and I get out of bed to help kids at least 2 times but often its more then 2 times. Jeff and I do not sleep much at all but surprisingly can function all day. 

Q. How often does Charlie get sick like the other night that you were up with him all night, but he was better in the morning?

A. Because his kidneys are failing at such a rapid rate and he is in end stage renal (kidney) failure we have to be very careful to not expose him to sick people. He has a weakened immune system. Anything could send him to the hospital.  

Q. How often do you need to take him to the doctor(s)?

A. Once a month while he on dialysis. after his transplant it will be weekly.

  Q. Do you need anything? Diapers? gift cards? Money?

A. This is a hard question to answer. Yes we do but if I say we need diapers we will be blessed with to many boxes of diapers to sore them all. Gift card to target to buy diapers would be better. or gift cards to The Home Depot would be good to as we need to finish our house so we are living in a finished house. If you have ever been to our house you will know that is it always under some sort of construction. Money is always helpful. We have so many medical bills its hard to justify spending money on the remodelling that needs to happen.

Q. Has Willa been tested yet?  

A. No she hasn't    

Q. What will life be like after his transplant?

A. Life will not be easy. He will need medications every day at the same time for the rest of his life. It will be to prevent his body from rejecting his new kidney. For the first year every time he is sick we have to go to the ER to make sure its not his body rejecting his new kidney. Some of the medications he will be on could cause skin cancer and other kinds of cancer. Every time he is outside we have to lather him up with sunscreen and keep him out of direct sun light if we can. They say the first year after the transplant is the hardest. I'm not sure what could be harder then the past few months of our lives so I'm not looks forward to the first year after his transplant. He will have to have his blood drawn 2 or more times a week and have to see his Dr. at least once a week. 

Thank you to everyone who asked all these questions. If you think of any other questions just ask in the comments or send an e-mail and I will add them. 

Also please feel free to share our website hoeftfamily.com and or our blog thehoefthomestead.blogspot.com  

Willa Christine Hoeft

Willa was born on February 24th at 2:25 pm.

She was 8 pounds 14 ounces and 19.5 inches.

Labor was fast and had no complications. 

(Photo taken by Danica Donnelly)

I love Willa's Name. 

She is named after my grandpa William Clarence Hearst.

Willa is the female version of William.

Christine is my middle name.

Hoeft is our last name.

WCH

(Photo taken by Danica Donnelly)

This is our first family of 5 photo, thank you Danica!

We didn't find out if we were going to have a boy or a girl but we both thought Willa was going to be a girl.  We were right! Natalie would tell people that she was going to have a baby sister that was a boy. (I'm not sure she knew that sisters are girls and brothers are boys even though we explained it to her.)

Sisters!

(Photo taken by Danica Donnelly)

We are all so happy that Willa is here. She is such a good baby
 Whenever she cries Charlie asks "What happened Willa?" and Natalie says "Mommy Willa is hungry!"