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.