Joshua's Journeys #42 CHARGE Syndrome Book Is Here!

I was waiting with baited breath, as Joshua's grandparents all got their books first, for our copy of CHARGE Syndrome the book that has a few pictures of our beloved Joshua! The book is fantastic...wonderfully written by experts that we've had the opportunity to meet (a few of them)at last year's conference. There are 4 pictures of Josh in the book: one of him doing some non-nutritive sucking on a pacifier, one of Mommy holding him, one post surgery when unfortunately he was not feeling all that well (the picture was supposed to show an infant in pain), and one of Mommy doing some kangaroo care (I'm covered well!) with Daddy reading a story to him. Josh has definitely left his mark on our world again. I had a hard time putting it down yesterday after thumbing through the pictures. I enjoyed all that I had read so far, it really is well written by experts on CHARGE. It was also so great to see a lot of friends in there as well...Mighty Max and Amy, Ellen, Ben, and more. If you would like to see the book, I'd be happy to brag!

Charge for CHARGE Fund Raising

Thank you so much for your participation in the 2nd Annual Joshua Kurby Charge for CHARGE 5K! We had a great race day, and are already thinking of next year's date. Thank you for all that participated, volunteered, donated, and sent well wishes. We were able to surpass last year's fund raising total by almost $100...so far! We still have until the end of the year to make our $5,000 goal!

Surpassing last year's fund raising total shows great success for the race. I had been warned by other race director's of a "sophomore slump" where there is a huge dip in participation, volunteers, and overall enthusiasm. I am so pleased to say this was not the case for us, and know that we will be back even bigger next year! Please feel free to send me any comments/suggestions about the race/post race events so we can continue making each year a more successful year than the previous.

The breakdown of funds raised:
$2,480 in registration online, mail-in, and race day
$450 additional donations
to total $2,930 in funds raised from the 2nd Annual Charge for CHARGE 5K!
We had accrued $1,365 on our CHARGE Accounts web page prior to the race, meaning some people that knew they were not going to be able to attend the race donated prior, or donations were made in memory of Joshua at other times during this year. So our total funds raised this year so far are $4,295!

Last year's total ended at $4,225, so we are already ahead of last year and well on our way to our goal of $5,000 for the year end. Thank you for all you have done to help support the CHARGE Syndrome Foundation, and our family.

2nd Annual Charge for CHARGE 5K!

Yesterday was the 2nd Annual Charge for CHARGE 5K and for what threatened to be a rainy day was an absolutely perfect morning. I was up and out putting signs along the course at 5am with a sprinkle of rain here and there, asking Josh to pull some strings up there. After heading back to the pavilion to settle some stuff, others from their cars and home, we all were amazed with the double rainbow in the sky. I couldn't stop taking pictures and couldn't show how the rainbows were perfectly framing the pavilion where the race registration was.
As volunteers arrived everyone was talking about the rainbows that they saw, the family of deer, 2 snapping turtles, it was just a perfect start to the day for everyone. We all felt Josh's presence and had smiles on our faces.


The rest of the race went well. We had a glitch or two with our race timing company which delayed our awards adn raffle ceremony, but otherwise we were very happy with the day's event. We had 2 t-shirts this year white was the official race shirt with the proper year (2nd Annual). The blue shirts were misprinted but the color that I had wanted. Unfortunately the printer had put Inaugural on those shirts, so our volunteers wore those for the day. Thank you to all of our volunteers that helped out, and many who have done so for 2 years now! Without you we could not do this at all! And thank you to Beth for always helping us...this year just like last she took Joey on the walk so that we wouldn't have to worry about him during the race. She also had Andrew and is always so good with them. Thank you!

Our first place finisher, Jesse Owens did a great job with a finishing time of 17:38. It was wonderful to see so many people come together to help us raise money for the CHARGE Syndrome Foundation. We had 5 states repreesnted: Illinois (of course), Ohio, Michigan, New York, and Washington. Thank you to everyone that came out and made it a wonderful day. I will post the total amount raised as well as more pictures (although there are a lot here) very soon. All money will be forwarded to the CHARGE Syndrome Foundation in memory of Joshua and can be viewed on his Charge for CHARGE web page, which I will have the link up again in the next day or so.

Again, thank you to everyone and we hope to see you next year!

Bean Bag Tournament

Last weekend we had a bean bag tournament in Barrington to help raise funds for the CHARGE Syndrome Foundation. A friend of mine was throwing her first fundraiser for the foundation and we were glad it was a nice day and close by. She did a remarkable job with a dj, raffle, pizza, and of course the tournament. Phil and I did not win, but in using Dom's technique I did much better than I thought I would and we both felt we could've done better. But in good fun and for a great cause we had a wonderful time. Thanks Becky for putting on such a great event, we hope you do another one next year! (And thanks Grandma for coming out on the hot day to watch the kids while we played!)

The flood...

The weekend of the 25th we were surprised to find our basement flooded. Since we are a few weeks out now I can be light in talking about it, but we were definitely not expecting to see the water in our basement since we've had worse rain and hadn't flooded before. Our sump and battery back up went out so we were in operation cleanup. As we were throwing cut up carpeting out well windows our neighbors realized what had happened and came right in to help. We are so lucky to have such wonderful neighbors. They came with fans, squeegies, helping hands, and even took Joey back to their pool to keep him out of our way! Thank you so much to all of our neighbors for helping us out in so many ways! We really shouldn't complain, we think we only got a few inches, and the other side of town was hit really hard. We were also able to turn the night into a get together with great friends/neighbors/family.
(Dominic has some much better pictures that he put together and e-mailed me, but I haven't figured out how to put it up here yet. Maybe Phil will help me with that--hint, hint)

Water boy

Joey has been enjoying the pool this summer. He likes playing in our kiddie pool and ou rfriends came over one day to play with us. Later that day our neighbors had a graduation party for Dominic and Joey was in the pool and in heaven. He loved splashing around with Mr. Sole and of course all of the kids that play with him and include him in everything. He did not want to get out. Congrats Dominic!

Joey 2 yr. and Jill 6 mos. pics

So I know I am horribly behind in posting pictures, about a month to be exact, but in July Jillian had her 6 month pictures taken with Joey's 2 year pictures. They both did really well. Joey kept giving Jillina kisses and hugs and Jillian was eating up the camera.

Joshua's Journeys #42 CHARGE run this weekend!

Don't forget to sign up for the 2nd Annual Joshua Kurby Charge for CHARGE 5K on Saturday, August 14 at 8AM. To sign up go to signmeup.com and search CHARGE or Kurby. There is also race day registration beginning at 7AM. We hope for great weather and a fun day!

More updates on our happenings to follow soon...

Joshua's Journeys #41 Mixing Business with Pleasure

I beleive a lot of times life is a preparation for what is yet to come. My fourth grade teacher taught me sign language, which I would later have to do a refresher course, I volunteered for the Special Olympics, and always had an affection for special needs children. I also have my master's degree and am a registered and licensed dietitian and the main focus of my work is with people on tube feedings: calculating their needs and making sure patients are able to tolerate them well. Before I got pregnant the very first time around, I began a new path in the population which I serve and started working in the NICU figuring out formulas and breastmilk compositions for babies. Little did I know in a few years I would use all of my experiences with Josh. There were many times in which I called upon my background to help with Joshua's care and development. One of the dietitian's at Children's Hospital paid me a huge compliment saying she thought I advocated for Josh very well and had the expertise to back up my convictions. I joined in when the doctors, nurses, dietitian and other healthcare workers were rounding on Josh and did not hesitate to speak up.

Shortly after Joshua's passing I was asked by my boss if I wanted to pick up an account in pediatrics. She stated that she knew it might be hard for me under the circumstances of losing Josh, but knew that I dove in head first and had a spot in my heart for pediatric and neonatal nutrition. I was back and forth on if I would accept the account that was a good hour plus away from home. I even talked to some of Josh's NICU nurses about the decision, how they deal with loss in the work environment and if they thought it would be appropriate for me to accept the account. I did accept the position knowing that if I let the opportunity to work with trached, vent dependent, and g-tube fed kiddos I might regret it the rest of my life. The first day I cried all the entire hour-plus drive to Harvey, IL. I was fine the entire day and was overwhelmed by the wonderful, caring nurses, and completely touched by each baby and child that I came in contact with. It was where I wanted to be. I cried the whole way home missing Josh, and still do most all days, but I am so happy to be working here.

I had to give up the account when I was on maternity leave for Jillian, and thought I wouldn't get it back. The dietitian that covered for me lives a lot closer, but she was no longer able to do the account, so this past Monday was my first visit since Jillian was born. When offered to go back again, I jumped on it, even if it meant the long drive. I received a warm welcome and return, and am so happy to be back. On Monday when I was there I was told that CBS news would be there today to do some coverage on the financial issues that a lot of facilities like this face. The only one like it in the state, the facility I work at has a capacity for 67 infants to young adult aged patients all g-tube fed, some do eat orally as well, and most all are trach or vent dependent. While I am not happy that the facility is in such a financial state ($2 million behind funding from the state), I wanted to share a clip of where I work and to bring some attention to the issue of aid for this population.

Click here to view the clip of Children's Habilitation Center.