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.

Joshua's Journeys #40- You Make Me Happy!

This post that Phil came across is one that I think speaks clearly to our life with Josh and many other moms that look at our blog (ok, all the CHARGE mommies out there!). Please feel free to read as much or as little as you would like. It made me smile, cry, nod, and sigh as I related to a lot of what this mom was talking about but through everything knowing I wouldn't trade it for anything and that I am happy with the life the Lord has given me.
Click here to read this wonderfully written post.

I'm so proud

Joey loves Galaga. Watching him play is so fun!


- Posted using BlogPress from my iPhone

Location:Burning Trail,Carol Stream,United States

Oops, I did it again...I slacked on my blogging! We've got a lot of pictures to update here. First off, Jillian's 6 month birthday was June 30. Auntie Christy and I celebrate the half birthdays, and I am so glad that we do since that was the only time Josh had us sing "Happy Birthday" to him. When we do our half birthday celebrations, we make a half-cake. For Jillian Auntie Christy made a half cookie cake, and Jillian was trying to dig right in! Go figure! Later in the evening Jillian proved her big girl status sitting with the boys while they ate their popcorn. She put her arms around them and enjoyed a little Mickey Mouse.


Northlake Days was another fun night, but mostly for Joey. We visited Auntie Steph and Uncle Don's house before heading over to the carnival. Joey loved riding the cars, and was very serious and determined. He liked the blue car the best, and didn't want to get out or go into any other cars. He picked his car out watching the ride before, and when it was his turn to go in he picked his car out and didn't get out until we ran out of tickets! I was proud he picked the Blue Bug (just like Mommy's first car!) and when I tried putting him on the Dumbo ride with me he wasn't as excited and just looked over at the cars.
Earlier that week we visited Nathan, Uncle Mark, and Auntie Miya. Joey plays with Nathan's picture all the time and says his name, but started out a little shy when we got there. He loved all of Nathan's toys, and has been talking about Uncle Mark a lot! The other night at dinner out of nowhere Joey said he wanted to see Uncle Mark. Auntie Miya made a great lunch with lots of food, thank you!


Here are some of the pictures from Joey's birthday party. We didn't take pictures of it, but we had 4 blue balloons, and 1 white at the party to remember Josh. And earlier in the day Joey and Jillian signed a balloon that we had at Assumption for Josh. Joey had a blast with his Mickey bouncy and playing with everyone. It was a hot day, but it didn't stop him at all! Happy Birthday Joey!


The day after Joey's birthday was Abbey's birthday party. Abbey had an Elmo themed party...Joey's next favorite! It was a lot of fun. Abbey got some adorable girly gifts and you could tell Daddy can't wait until Jillian is old enough to get some of the baby dolls, tiaras, and dress up clothes! He couldn't hold himself back from putting Abbey's tiara on Jillian and taking a picture. Of course Ben was being a goof and put it on too!
The 4th of July was on a Sunday, and Grandma had mass said for Joshua at her church (also the church that Mommy and Daddy got married at, and said by Father Tony, the priest who baptized Josh). It was a beautiful mass with a very poignant first reading regarding an infant and his mother, and later a song was sung that was also at Joshua's funeral mass. Afterwards we went to Grandma's house for a little while before heading out to our yearly party of another aunt and uncle (sorry no pictures, and we forgot our suits!) from when we were kids playing softball. Before we left for the party Jillian and Emma were playing together on the mat and Auntie Christy had her arms full of kids.


Here are some random pictures of the kids playing outside, at the pool, and then last night at the Riverwalk with Auntie Pam. Joey had a blast eating al fresco, having gelato, going for a walk on the Riverwalk, feeding the ducks, playing at the park, and then Auntie Pam wetting his feet in the fountain! Joey keeps talking about the ducks and the fountain, and Jillian had a good lip smack with her first taste of ice cream/gelato!


And finally, the dog days of summer...poor Java has been beat with the parties, fireworks, and kids crawling over her.

Joshua's Journeys #39- Josh's Mom

Yesterday I was at the park district getting ready to teach a spin class when one of my "regulars" and I were talking about our weekends. She had asked how my weekend was and I told her it was Joey's birthday on Saturday and then Sunday we were very busy with a lot going on. I explained that we went to a mass in Elmhurst where my mom had the intentions of the mass said for Joshua, and then we had a 4th of July party, and a friend's birthday party. I began to explain that I have twin boys, and one passed last March. Before finishing that, she stopped me and said, "Sandy, I just found out last weekend that you are Joshua Kurby's mom. I never realized your last name to put the two together." She then said her condolences and some very kind words, but what stuck with me the most was that she knew Joshua Kurby, and then realized I'm his mom. Josh continues to be present in many people's lives, and introduces himself to others that may not know him. I know there are a lot of people at the park district that participated in the Charge for CHARGE run last year, and many that are getting ready this year. I am thankful for all of them, and can't help but smile when I see someone walking the halls or taking one of my classes donning their race t-shirt. But today, I was taken aback a bit to hear someone say "You are Joshua Kurby's mom."

I just had to share that since it truly made my week! I will update pictures soon, since I know many want to see pictures from the boys' birthday.