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.