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.