The End of an Era

We are moving!
We have finally finished fixing up our house and put it on the market. I thought I would do a little recap of our 320 Bluejay Ave, house.
 We have done so much work to our house I'm going to try and find some before pictures to go with the finished house. I hope you enjoy (this might be a little picture heavy).

We will start in the living room. 

Before

These 2 pictures are of the front door and the stairs. Very dark and closed off.

We removed most of the wall in these to pictures.

Good bye 70s wood paneling. 

It was so dark in the sitting area even with the big picture window.

These are all before pictures and here are some after pictures

All those walls in the first few pictures are now gone

No more wood paneling 

you can see the wall that is gone now.

Its so much more open. 

Now we are going to go into the kitchen.
First some before pictures then some after pictures.
The kitchen changed quite a bit. We raised the ceilings. Replaced the windows, put in a lot more lights, and opened it up. 

 The sink was on the other side of the kitchen then the dishwasher. It flows so much better now.

Next we are going to do the laundry room / new bathroom

We added a bathroom and got front loader washer and dryers to save on space

 This bathroom is where the dryer was in the before picture

Its not a true before picture of the dining room as the wall in the living room is already missing but that's some good remodeling mess :)  

I like the afters on all these pictures better then the before pictures.

The office / Charlie's room

This is one if my favorite rooms and non of the pictures do it justice. 

we moved the closet, replaced the window and added 2 windows. We also raised the ceiling quite a bit. I also like the room better as an office probably why  I don't think the pictures do the room justice. 

Both pictures are taken from the same spot.  We removed the closet from the east wall and added it to the wall adjacent to the laundry room.

Up stairs bathroom

The bathroom feels so much cleaner and brighter then it did before we re-did it. 

 Before and after. 

Our bedrooms. I don't really have before pictures. The before of our rooms in my and Jeff's room had no closet doors, white walls and pink carpet. The girls room had white walls brown trim and no carpet. 

Jeff and my room.
The first picture is of our headboard that came after the pictures of our house  

Here is a look at the outside of our house.

 I don't have any from before we started painting the brown. I put in the walkway and plants. You had to walk through the gate to get to our front door and there was a tree blocking the picture window.  We also had cement steps for the front entrance of the house.

Not very pretty

Scraping the paint off. 

Elaina and Danny helping scrape the paint off.

 One no longer has to walk through a gate to get to our front door.
New tree to the side of the house so we can see out the picture window.

New and improved walk way with sitting area under the big maple. Jeff and his dad also made new front steps.

 the original fire pit

The corner garden when I had just made it.

I hope you enjoyed the before and after of our house. We put so much time and energy into our very long slow flip of our house. We are so excited to be moving to a bigger house in July and we hope the new owners of our house love it.
Next post will be of our new house!

What This Hospital Stay Is Like For Our Family

Home before the hospital.

 

Our weekend was fairly normal to start. I'm going to start a little bit before the weekend though. Thursday and Friday Natalie was home sick from school due to a low grade fever and a few episodes of her vomiting. Charlie had a runny nose and a light cough and Willa was fairly healthy. Natalie stopped vomiting and her fever went away but she still had some cold symptoms. She asked if she could go to basketball practice on Saturday morning is she was better. We said as long as you don't throw up and your fever stays away you can go. Saturday morning she and Jeff went to basketball and she had a blast getting out of the house. After they ran a few errands. Charlie, Willa and I stayed home while they were out and Willa was still normal but Charlie's cough was getting pretty bad. Jeff and I had plans to go to his work Holiday Party on Saturday night and the kids were doing well enough we didn't cancel our plans. My mom came over to watch the kids we gave her the low down on what to do with the kids through out the night and told her to call or text if she needed us... She never called or texted so we thought everything was going great. We got home around midnight expecting the kids to all be sleeping and maybe even my mom as well... Well she was not sleeping and nether was Willa. Willa had thrown up in her bed and my mom cleaned her up and then brought her down stairs. I picked up Willa and said Jeff we need to take her temp right away she is so warm, well she had a fever of 103. My gut sunk because she was fine when we left and I knew that Charlie wasn't quite 100%. Well my mom left to go home because she had stuff in the morning she needed to be home for and Jeff and I were getting ready to go to bed when Charlie comes walking out of his room crying. I go get him and he is also burning up. I take his temperature and it is 103.4 and his cough is horrible, my gut was right. I knew we had to bring Charlie to the ER because he needs to go in if he has a temp over 101.2 and or vomiting, I start packing a hospital bag right away because there is no way we can wait to get him to the hospital. We gave him Tylenol and he threw that up right away. Jeff stayed home with the girls and I took Charlie in because Charlie wanted me to take him and is a lot harder on Jeff then he is on me. We left around 1 am! 

The ER at the U of M Children's Hospital.

We get to the ER a little after 2 am. There were 2 people that had gotten their before us and that was it. We get signed in and wait our turn I her the lady at the desk call back and say that Charlie is a level 3 transplant patient... We start in triage and do the normal weight, blood pressure, temp and height. Then they bring us back to a room. I knew we were in for a long night and is one of the reasons I do not like going to the ER at night unless we have to. Anyways The nurse starts by saying the ER doctor is busy so she is just going to put in an IV and try and get some labs drawn as well. Me being 1/2 asleep was like ok sounds good, not really thinking that she hadn't even talked to the ER doc to see what labs he wanted drawn, Transplant patients need more labs then your average person. In trying to get the IV in she blew 3 of Charlies fragile veins (that's 3 pokes for 3 veins) then she finally got one and got some labs out of it. Charlie was not happy and was screaming let go of me people. I wasn't very happy either. Then the Er doc came and saw Charlie and said he needed more labs, a urine sample and an X-ray. I was not happy they wanted more labs after poking him 4 times already. They get all ready to do labs and end up poking him 2 times trying to get labs... this is the most anyone has ever poked charlie in one day, I really wasn't happy about all his pokes. I was happy when they said that it was time for x-ray because I knew that he didn't get any pokes for that. We made it to x-ray and they were really nice and Charlie did great. the wanted to make sure he didn't have pneumonia. His lungs looked great! Easy test! Next test is urine sample. I wasn't sure how that was going to go as Charlie has always been bagged or had a catheter put in to collect urine, but I talked him into peeing in a cup because he had been through enough and I wanted another easy test for him. He did it with flying colors!!! Go Charlie! We get back to the room and Charlie is about to fall asleep... um yeah its the middle of the night! Anyways I found out no one had called the on call nephologist, one of the first things they should have done. and he wanted some more labs and a flu test. yuck and yuck! Charlie is pretty much asleep and they do the flu test, a swab up the nose if you haven't ever gotten one before. Not really something anyone wants as they are falling asleep. then the nurse says we are getting admitted (I knew we would be) and they still need that other lab. She tried and missed I said no more he needs his sleep. they have fluids running on the iv and Charlie was really dehydrated they also have antibiotics running just as a preventative. It is now 6 am Charlie is sleeping and our room on the 5th floor is FINALLY ready!!! Holy Cow was that a LONG night. It was by far our worst ER visit and we have had a few. 

The 5th Floor.

A breath of fresh air! After the night of no sleep and many many tests that we had being on the floor was just so great! We were greeted by a nurse that knew us and he was on top of making sure everyone was quiet and that we would not be disturbed so we could sleep! AMAZING! We were able to sleep with minimal interruptions until 1 pm. We had to wake up for some meds, vitals and rounds but other then that no one bothered us. During rounds the Dr said that Charlie probably has a virus and we will probably stay till Tuesday because that is how long it takes for the blood and urine cultures to come back. If they look good then we have the all clear to go home, if they don't I'm not really sure what the plan is. Charlie and I just hung out ate some food the nurse would come in for different meds or to change iv fluids or to give him his iv antibiotics. As far as hospital stays it was a pretty low key day. Charlie still had a slight fever but it was mostly gone and his cough is still roaring. Jeff and Natalie stopped by a little before dinner and Natalie just brought so much life to the room. My parents we coming back from my nephews event and stopped by to bring us dinner they they went on their way because they had other stuff to do. Jeff was going to stay the night at the hospital so he could work from hospital and I was going to go home with the girls and SLEEP. Natalie and I head home after dinner and I'm so tired its hard to drive but I turned the ac on and kept myself awake for the hour drive home. we get home around 7:30 and Jeff's parents bring Willa back home so I don't have to do any extra driving. 

Home for Natalie, Willa and me.

I was happy to be home and to finally be able to get some good sleep. I put the girls to bed (Willa still has a fever). and wait for my meds before I climb into bed. I'm finally ready to go to bed, Hank our dog has been let out one last time before going to bed and I think the girls are are sleeping Hank is good to go and we are golden for sleep... I'm asleep before 10. 11:15 comes rolling around and Natalie wakes up screaming in pain. her ear hurts I tell her there isn't much I can do tonight and I get her back to sleep in my bed. Then Willa wakes up and her fever is back tenfold and she comes into bed with me. Mind you I am so tired dealing with the girls is a difficult task for me. Anyways both girls take turns waking up all night and I finally remember that we have Tylenol and go get some for Natalie and she slept the rest of the night after 4 am. Willa not so much, she wanted to sleep on my face. I was not a fan. 6:30 came around and I knew I had to get Natalie up for school. I didn't want to move. I get her up get her dressed make her breakfast and get her out the door and on the bus by 7:30 I'm so excited she is gone for the day because I need more rest. I send her teacher an email saying Natalie was up part of the night and her ears hurt but she doesn't have a temp so I'm sending her to school and I can come pick her up if I need to. Her amazing teacher responds and says sounds good! then asks if I want the school nurse to look in her ears to see if I need to bring her in later. I tell her that would be wonderful! I climb back into bed with Willa and amazingly enough she and I both sleep till 9 am when my alarm went off for my meds. I had an email from the school nurse saying that she had looked in Natalie's ears and there was fluid behind both ears so I do the mom thing and make appointments for both girls to have their ears checked out at the Dr's office after school. Mean while we get up and have a very slow morning meds, breakfast, movie, play, get dressed, lunch and a nap for Willa. While Willa naps I shower and get packed for Willa and I both. Jeff has to be at work on Tuesday due to a full day of meetings that he can't miss, so I have arranged for Willa to stay at my parents as I cant have her at the hospital with me because she is sick and Jeff has to go to work. I'm finally done getting everything ready for both Willa and I and its time to go get miss Natalie from school. I pack up the truck and have hank outside so he can go to the bathroom before we leave, then I get Willa (she was still sleeping) and off we go to pick up Natalie from school. she was in a really good mood as I had brought her tablet with that had been put away for almost a week. we get to the clinic they look in both girls ears and tell me they both have double ear infections! Yuck and Yuck! No fun at all. We get their meds and head to my parents to drop off Willa. On the way Jeff tells me Charlie is sleeping so to leave Natalie at my parents. I tell Natalie and she starts crying a lot. She wants to see Charlie then she starts crying because she cant sleep over at grandmas with Willa. I tell her that she gets to have a sleep over with Daddy at home... That didn't really help her; she was really upset that everyone was sleeping in different places. Once we were at my parents she was singing a different tune. To tell you the truth Charlie being in the hospital affects everyone in our family even our dog and we are often sleeping in all different places. 

Same Night and Day but at the Hospital with Jeff and Charlie.

 This is not Jeff telling this so I could be missing some things. I just know what Jeff told me. 

Jeff said it was a long night as the night nurse was not very quiet (that happens sometimes) and for as many times as they came in to check things on charlie and what not they never checked his diaper. some time in the night they woke up Jeff because Charlie was soaking wet and needed new everything. Not something you want to wake up to especially when Charlie is being pumped full of IV fluid meaning that yes he will in fact pee more during the night. They get him all cleaned up and back to sleep. Labs we supposed to show up at 5:30 am 30 min before Charlie's VERY important meds. Labs were late and the nurse decided to hold Charlie's 6 am don't ever be late meds. Labs finally showed up and Charlie got his meds late... So not ok. I think they went back to sleep but I'm not sure. I would have though. When the Dr rounded Jeff talked about the meds being late and no one checking Charlies diaper over night even though they were bugging him all night. The Dr said they were sorry and she will talk to the nurses. They also decided during rounds to order a full virus panel and another nose swab this time for virus'... More not fun stuff for Charlie. The boys hang out all day and I get to the hospital just as Charlie is getting his dinner. He was so happy and goofy acting it was awesome. Before Jeff left to go get Natalie then go home he told me that Charlie's IV had stopped working and that he needed a new one. About 20-30 min after Jeff left they came and put in a new IV. One poke, great nurses helping and Child Family Life specialist there to help distract Charlie with an iPad full of fun kid games. Where were all these amazing people when we were in the ER the first night? Sleeping I'm sure. Charlie's fever is gone and he still has quite the cough. As of right now the plan is to go home tomorrow (Tuesday). They should know what he has and be able to send home meds if they need to for his specific illness.  

That is this hospital stay

Later this week on Tuesday night Natalie will be playing basketball in the high school girls basketball half time. Wednesday Charlie needs to come back to the U to meet with his Dr for an every other month follow up, Jeff wont be able to make it this time (lots of meetings). On Thursday I have a Day full of appointments for me and baby Theo and Charlie and Willa will be hanging out with Grandpa Hoeft. They are planning on inducing me on February 23rd the day before Willa's 2nd birthday. I am in the final count down with this LAST pregnancy of mine. YAY!!

Thanks for reading my long blog. I'm sorry if I'm rambling or repeating myself I have been typing this at the hospital and there are a lot of interruptions. I also don't have anyone to proof read this so just put all the mistakes into a very sleep deprived pregnant mom. 

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.