Update on Eva

Eva successfully made it through her surgery and is doing well. She is in a bright pink cast from the waist down. She is in the hospital overnight, and will hopefully be home tomorrow. I'm sure it has been a long day for Eva, and her parents. Now to hope for a speedy recovery!

Eva's Having Surgery

Please keep Eva and her family in your thoughts and prayers today. Eva is having surgery on her hips. Her hips were starting to dislocate and the muscles were really tight, so they are going to do a surgery which will require her to be in a cast from the hips down for a few weeks. We hope she has an easy surgery and a speedy recovery. Eva is a CHARGE kiddo that has had her share of surgeries (heart surgery, g-tube...now out!, and ear surgery to name a few), but every surgery a child has is a big deal. We are thinking of you Eva. Josh will be watching out for his girlfriend.

Weekend Update

This past weekend we were very busy doing outdoor activities and enjoying the nice weather before it turned chilly.

On Saturday we went to the Brookfield Zoo with Nonna, Grandpa, Auntie Marie, Auntie Joanie, Jane, Phil, Janelle, Phil, Corey, and Jacob. We had a lot of fun looking at the animals, visiting the Dinosaurs Alive exhibit, walking around, and spending time with family. Grandpa spoiled Joey with a new book, a dinosaur flashlight, and a Nemo grabber toy. The fresh air tired Joey out on the way home, but not before he enjoyed his very last bottle of milk! As of Saturday around 2:30 p.m. Joey became a bottle free baby! Sippy cups or bust...a big milestone for him!


Sunday was our church's outdoor mass and Trifesta, a fest on the church grounds with food, music, and games. We went to the outdoor mass and then stayed a couple of hours for the fest. Auntie Christy and Andrew met us out there too. Joey enjoyed snow cones, bites of Daddy's homemade tortilla, and of course some Cheerios on the lawn as we listened to music. Joey and Andrew went in a big blow up tent like a bouncy that had air blowing balloons everywhere. Andrew was better at catching them than Joey, but they both had a lot of fun. We finished with a train ride! Joey was ready to go until he saw the train. He didn't want to get out once the ride was over.


Finally here are a few pictures from today. Daddy took a couple of pictures of him when he first woke up and then we had to take a few more of Joey in his Purdue gear chilling out on his little couch drinking his milk like a big boy!

Happy 2nd Birthday Andrew!

Today is our Godson and nephew Andrew's 2nd birthday! I keep telling my sister to start a blog, but since she doesn't I'll have to put a picture show up for him here. Happy Birthday Andrew! We love you!

Meeting My Goddaughter!

On Thursday we visited our friends Paul and Katherine and welcomed Juliette Kathleen into the world. She is so adorable! She was very sleepy while we were there, but I guess being that hot off the press we wouldn't expect her to be full of energy. Still, I wanted to see her eyes. She is so petite- she weighed in at 6 pounds 14 ounces. (It's even harder to believe that Josh and Joey were half that size!) The family of 5 is now back home, we hope getting some rest!

Birthdays...

July 31, Grandma turned 55! We had a nice dinner over at her house that night, keeping things low key since we the Charge for CHARGE race the next morning. Happy Birthday Grandma!



Last Saturday we celebrated (a little early) Andrew's 2nd birthday! It was a lot of fun. Auntie Christy and Uncle Chris rented a truck moonjump, had the water tables out, bean bags, and lots of food and friends! It was a warm, but very fun day. Happy 2nd birthday Andrew!



Sunday, August 16 was Java's 4th birthday. She was spoiled with yummy treats, good meals, and lots of love from all of us. She sure has grown over the past 4 years! Happy 4th birthday Java!




And Last, But Certainly Not Least...
I became a Godmother again today to our dear friends' newest addition Juliette Kathleen. She was born at 8:18 a.m. weighing in at 6 pounds 14 ounces, 19.5 inches long. I can not wait to meet her tomorrow! Her mom, dad, brother and sister are all doing well, although I'm sure are exhausted from all the excitement. Welcome Baby Juliette!

It's A...

Hello Family and Friends,
We are excited to announce that baby number three is a girl! She is looking healthy. At the perinatologist they did a high level ultrasound and looked at all the organs and all seems to be functioning well. Measurements are great too! We are going to have an echocardiogram on the baby in 4 weeks (done by Josh's cardiologist) since she has the better trained eye and to give us some reassurance. Mom is doing well too- not dilating, so no cerclage and no bed rest (at least for now, but we are hopeful that it will remain that way). Looks like Josh is watching out for his little sister!
Hope you are all enjoying your summer and doing well yourselves.
Take care,
Phil, Sandy, Josh, Joey (and Java too!)

Joshua's Journey #9- Baptism Anniversary

Yesterday, August 9 was the one year anniversary of Joshua's baptism. We had wanted to have Joshua and Joseph baptized in our church at the same time, but never knew when Josh would be discharged from the NICU. Just one day after their births Joshua and Joseph received a blessing from the hospital chaplain. About a week later, we had Father Tony (our pastor who had since moved parishes to Mary Queen of Heaven where Phil and I were married) come in for another blessing for both boys, and he also had a special blessing and prayer for the new parents. Father Tony was very impressed in learning Joshua and Joseph's names, and noted the power in Joshua's name. Joshua Roy translated means Jesus is King.

Joey was discharged the following week, and we were left wondering when Josh would make it home. As time passed we learned more about Joshua. Joshua was now on a ventilator and it was decided that he would need a tracheostomy, g-tube, nissen, and later on a VP shunt, and many other surgeries. In preparation for the first of surgeries (as these anniversaries approach we will blog about each experiences) we decided we wanted Joshua to be baptized. We once again called Father Tony who was more than willing to come in short notice for Joshua's baptism. Father Tony said a prayer with me over the phone and agreed to come in on Saturday, August 9, 2009 to baptize Joshua.

For many people the focus of the baptism celebration is the party; having friends and family over to meet the new baby, have some food and spirits, and celebrate the life of the baby. I called Trisha Joshua's Godmother who was away at school at the time. Without hesitation she drove in from Michigan to be there for Josh. Chris, his Godfather who is at his busiest this time of year also put the day on hold for Joshua and the Lord. Since there is a restriction on the number of people allowed in the NICU the baptism involved an intimate few of us: Mom, Dad, Trish- Godmother, Chris-Godfather, and Father Tony. It was a most beautiful ceremony where for the first time I felt I understood the true meaning and experience of baptism. Trisha had made a gorgeous and colorful garment to be placed over Joshua which we later hung in his room, and although we weren't allowed to light the candle we smelled the rich oil as it was blessed and placed upon Joshua's head. It was a most precious ceremony, you could feel the power of prayer within the circle that we stood around Josh. Father Tony had many special prayers for Joshua and always has such a wonderful way with words. One thing I will not forget, before Father Tony left that day he took a moment to himself by Joshua's head and starred at him smiling. He came over to me and said "This boy wants to live. He wants to live. He will." Father Tony had to leave, but left us very uplifted and full of promise.

We went home from the hospital to a nice luncheon between our immediate families. We celebrated Joshua's baptism and faith in the Lord. After everyone left, I returned to the hospital to end the day with Joshua. You could tell in Josh's eyes that he knew the day was special. I held him that night as we both felt the comfort of our Lord, we knew that the Lord would take care of all of us.

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world. -John 16:33

Inaugural Joshua Kurby Charge for CHARGE 5K

(3 different slide shows at bottom of this post!)

I can't say thank you enough to everyone who came out to run, walk, volunteer, cheer, or do anything to be a part of the Inaugural Joshua Kurby Charge for CHARGE 5K. I smiled and shook my head the other day as I placed a bib number, gold medal, and finisher's ribbon for the race on Joshua's grave. He did it again...it never ceases to amaze me how much love, energy, devotion, and happiness Josh can pull out of everyone. Several times during the planning stages I would talk to Joshua and ask for his help. As the gun went off on race morning I looked up to Josh and asked him to please not pull any fast ones on us, and please help me bike faster than the lead runner so I'm not totally embarrassed!

The day was perfect. We had over 140 registered participants, very fast runners, mixed with families strolling their children. I was worried about the weather being too hot when I first started planning things in late March, but it was a nice cool morning, and the rain held off. After the awards and raffle I thanked everyone for coming and it wasn't until then that it started to drizzle. It only lasted a few moments so clean up went quick as well. We were able to raise close to $5,000 for the CHARGE Syndrome Foundation. All the money raised for the event will be going directly to the Foundation in memory of Joshua.

It was wonderful to see so many people there to run, walk, raise awareness about CHARGE, and honor Joshua's memory. We had many NICU nurses present, as well as Carl- Josh's first and best buddy, other CHARGE families that traveled as far as an hour to get there, many friends, neighbors, family, and some people I have never met. A great time was had by all. (Phil even won 3rd in his age group! Go Daddy!)

If you are looking for race results they are posted on CARAruns.org look under race results, mychicagoathlete.com under race results, or racetime.info under results.

I will let these people speak for themselves. I don't know most of them, so I find these to be a very high compliments to everyone:

-I wanted to take a moment and thank you for the Charge 5K event. I enjoyed the course immensely, rarely do you have an opportunity to run a path that doesn’t end up as an out and back or a twice-around. I didn’t become bored or impatient and was able to relax into a great run. The bagels were a nice touch. Please tell Panera thank you from me. I appreciate that they would support their community in such a generous fashion. The bagels were the wonderful. I have always been a Panera patron and now I like them even better.
Kind regards,
-- Rebecca


--Sandy,
Just wanted to take a moment and Thank You for the wonderful event you hosted this weekend. My girlfriend and I were in town on business and chose your event because we liked the cause and the location. You and your volunteers did a great job with sponsorship, registration, course layout, timing, and all the small things that make for a pleasant event. Most important, your group created a welcome atmosphere with lots a friendly, smiling faces eager to help in any way they could. Congratulations on a successful inaugural event. Hope you were able to further the CHARGE cause and thanks for educating us and letting us help support this worthy endeavor. I hope you will sustain it for years to come. And, I hope I will be able to attend again.
Thanks Again, and well done.
Rob

P.S. As a result of their sponsorship of your event Panera Bread has gained a fan as well as a customer. I will make it a point to stop at one of their shops whenever I can.


--Hi Christy,
I had a great time. I would have liked to have stayed and talked more, but I had to get my son to Taekwondo lessons. I am glad the rain held off for most of the event to make it easier on everyone. I hope your sister felt it was a success. I certainly did. I hope she is able to have it again next year.

Since I am not very familiar with CHARGE, I don’t know the details of how it affects kids and families, but given the mortality rate associated with it, I am surprised it hasn’t received more media attention. Hopefully, with awareness events like this, it will get more attention, funding, and research.

Please let your family know it was a great inaugural race.

Ryan


-Thanks, Sandy,
It was a nice race and I’ll be looking forward to doing it again next year.
Rock (a gentleman that placed in the race)