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