I'm so proud

Joey loves Galaga. Watching him play is so fun!


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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.

Happy Birthday Boys!

Joshua, our oldest child and a great teacher, we continue to thank you for showing us the important things in life, making us realize we are stronger than we know, and can love in so many capacities. We miss you always, and on your birthday we are reminded again of the day our lives were completely flipped upside down, and you started us on a rollercoaster journey that I wouldn't ever want to miss. We love you Joshua!

Joey, we can't believe you are 2 today! You are such a joy and bring so much laughter in our lives. We are constantly amazed with all you do. We see glimpses of your brother in you all the time, and know that a big part of you is in heaven. We look forward to each new thing you learn and do, and are enjoying watching you grow. We love your run, your laugh, your skinny little limbs, the way you take care of your little sister...we love everything about you!

Twins have a special connection that can never be broken, even with life and death. There are many times when we've noticed Joey acting oddly, or picking up a habit of Josh's around times like these, occasions that are reminders to him that he has a twin brother. While Joey may have been very young when Josh passed on, there is no doubt in our minds that Joey knows Joshua and still feels a part of him in daily life. The twin bond is a very strong bond. Happy 2nd Birthday to our twin boys!

Joshua's Journeys #38- And sister makes 5

This quarter's CHARGE Account, the newsletter from the CHARGE Syndrome Foundation, featured articles on planning another pregnancy after having a child with CHARGE. There were many people that wrote of their personal decision on whether or not to try for another baby after having a child with CHARGE, and some scientific data about infertility, prenatal testing (Josh did not have the gene for CHARGE so this would not have helped us) and diagnosis, and more from the genetic counselor Meg Heffner (coauthor of the book on CHARGE). I was among the 8 women who wrote in about our experiences conceiving again and what that meant to our family. I was the only one who has a CHARGE angel that wrote, but each story is personally unique, and I have become friends some of these women and their families. It was fun for me to read and relate to the other moms having a non-CHARGE child after their CHARGE child and the shock of not having to worry about hearing screens, car seat tests, breathing issues, trachs, g-tubes, etc. before even leaving the hospital. To this day, when we are out whether it is at the store, a friend's house, going for a run, going to the zoo, a carnival, the aquarium, you name it I can't help but think where Josh would be sitting, where his equipment would be, if it would disturb others if I were to suction him, how the environment might affect him, the list goes on and on. Of course I could write forever on the what-ifs if Josh were still here, so I will end with that and share our intimate story of conceiving again...

Conceiving Again
By: Sandy Kurby
I had twin boys, one (Joshua) born with CHARGE. He was a fighter. After 8.5 months, he completely blindsided all of us and moved on to Heaven. The doctors, my husband, and I were dumbfounded. He died of reasons outside of CHARGE (they called it an abdominal catastrophe since they really had no explanation). I had tried for years to get pregnant with my boys and finally had done IVF. I was on bedrest at 19 weeks, and delivered Joshua and Joseph at 32 weeks and 6 days.
As most of you can relate, our days had been filled with many therapies, doctors‘ appointments, and, of course, hospitalizations and surgeries. We wondered if financially we could afford to have another child, and if physically and emotionally we‘d be available for a third child. We were back and forth on if we could afford (time and money wise) to have another child. By the time Josh was 6 months old, he was stabilizing at home, we were in our routine, and his brother was doing well too. We felt that we could in fact have another child and were not going to close the door to that possibility. As God wanted, Josh was admitted to the hospital for a month and a half and at 8½ months passed away (March 14, 2009). We were completely devastated. We didn‘t know how we‘d continue without him here.
My husband and I decided shortly before Joshua‘s passing that we would try for another child, eventually. After he passed, I was still pumping/breastfeeding his twin so never got a period, but a few weeks later felt the need to take a pregnancy test (never had maternal instinct before!). I never would have thought it would be positive because of all the complications I had trying to get and stay pregnant previously. Well, early April we found out I was pregnant. While we were not preventing a pregnancy or ruling out another child, we had such a hard time conceiving and staying pregnant in the first place that we were in disbelief. Don‘t get me wrong—we were very happy, but in shock. In telling people that we were pregnant after the first trimester, we heard many different attitudes. Some people were ecstatic for us; others questioned if we were trying to replace Josh, which was and is not the case.
During the pregnancy we wondered: What if this child has CHARGE as well? Many conversations with my husband resulted in the same ending: we would deal with whatever came our way. We loved Josh so much and would embrace having another child like him; we knew we would make things work with whatever was brought our way. There were times during the pregnancy that I wondered if she‘d have CHARGE (and to be honest, after my journey with Josh, there have been and still are times I wish she did have CHARGE!). My OB sent me back to the perinatologist to be closely monitored. We had several growth ultrasounds, a very intense 20-week ultrasound, and as a reassurance we also had an echocardiogram done on the baby by Josh‘s cardiologist (who knew what Josh and his heart were like), but that showed nothing of concern. We were told that although the ultrasound and echo showed nothing, there was still the possibility of CHARGE. My OB encouraged me to have a quad screen test; however, I still decided not to.
All turned out fine. Jillian Grace was born at 39 weeks (c-section) and is very healthy. She had an Apgar score of 10, whereas we never got the Apgar score for Josh. The whole birthing experience was dramatically different. I was able to hold my baby this time, see my baby, go to recovery with her, and feed her. I remember as they were pulling her out, holding my breath just waiting to hear her cry, to know she was breathing on her own. When she was brought to me, the first thing I did was look at her ears. I will say, I was a little disappointed I didn‘t see those floppy ears that I loved to kiss on Josh. And our first question for the pediatrician once we were back in the room was, When will she have her hearing screening?
During her second day of life, Jillian choked on some fluid and turned a little blue. We had to hit the call button, and I had to run down the hall for help. They did the Heimlich Maneuver on her and then suctioned her mouth out. It was a good scare, but we had been through much worse with Josh. It was, however, a reminder of how precious and fragile life is. We are very glad that we did decide to have another child. We miss Josh dearly and he is still a part of our daily conversations, and always in our heads and hearts, and we are glad that he is Jillian‘s guardian angel and has sent her to us. Jillian and Joey are blessed to have an angel always looking out for them.
Jillian is now 4 months old and is very happy and healthy (outside of a cold here and there). She is gaining weight so fast it is amazing—she is going to catch her 21-month-old surviving brother soon in the weight department! I am so glad we did have her—we are truly blessed. Joshua taught us so much about love and life: that material things are not important; it‘s the smiles, the little accomplishments that some may take for granted that mean so much; and that life is precious. I have learned so much from Joshua and am so glad he introduced me to this wonderful community. I stay involved by reading (and replying when I have something to share) the CHARGE listserv, keeping a CHARGE Accounts fundraising page, reading and keeping up with many CHARGE kiddos‘ blogs (I‘m really addicted!), and hosting a yearly 5K walk/run in memory of Joshua with all funds raised going to the CHARGE Syndrome Foundation.

To read the full newsletter (and see a few pictures) click here. Our story is on page 14, but there are many other great accounts and a lot of information throughout the whole newsletter.
I particularly like Corrie's quote "If you're a person of faith, you know there's nothing like the CHARGE experience to get you praying." Corrie is a mom of 2 CHARGE children--I hope I am able to meet her and her family at next year's conference!

The newsletter also announced the Joshua Kurby Charge for CHARGE 5K on August 14...don't forget to register!

Weighing In

Today we had Joey's 2 year and Jillian's 6 month appointments. Ok, so Jillian isn't 6 months until next week, and Joey has a week and a half, but we went today. The last time we were there it was just for Jillian and Joey was very clingy and had a very hard time even though he was not looked at. This time both Jill and Joey did great. Jillian was her smiley self, even laughing at the nurse listening to her heart. Joey enjoyed stepping on the ducks on the scale for his weight. The doctor was very impressed with Jillian's sitting abilities and of course her eating abilities too! He told us since she is sitting so well we can start introducing finger foods already as well as a cup! We actually tried a cup last night and have been giving her Biter Biscuits now and then, but now we can really get into it! The doctor was also impressed with Joey's potty training progress. The doctor started off giving us some sheets on potty training and talked about how to know if a child is ready to start potty training, when Phil interrupted him and told him that Joey goes peeps in the potty pretty regularly. We are just working on number 2, and the doctor was very happy to hear that. Good job Joey!

Ok, so what you've all been waiting for...their stats! Jillian is a big girl, but consistently following her growth curve:
Weight: 17 pounds, 14 ounces putting her at the 88%ile (same %ile as her 4 month check)
Height: 26 1/2 inches putting her at the 76%ile

Joey's growth curve is more of a straight line. He has skyrocketed for his growth even though he is still a little guy. Remember he started off no where near the growth chart at all, so he is doing great catching up.
Weight: 24 pounds in the 9%ile (last time he was in the 6%ile)
Height: 32 3/4 inches 18%ile

A lot of updating...

I have fallen behind once again, so here is a lump of pictures and happenings.

Phil turned 30...finally, and we had a small get together at Dave and Buster's to celebrate. Phil was in his element (with all the kids) playing video games and having fun!


We have had a lot of outside fun between the raindrops. We've been back to Cosley Zoo in Wheaton, a small but perfect zoo for Joey and Jillian. We've also made it to the "big" pool to go swimming. Joey likes the zero depth pool and the sand play area. There is a small water slide that Joey and Andrew have mastered as well. We have been going to the pool in Bartlett, since I work at the park district over there as well and got a discount! Joey and Jillian are going to the daycare for a couple of hours on Wednesdays and Thursdays while Mommy works, and then we usually try to head to the pool afterwards as a treat. Joey started off crying each time I'd leave him to go work, but today he didn't even turn his head as I walked away and when I came back to get him he was going down the slide and ran over to me to grab my hand and go play!


Finally, this past weekend we went to the Shedd Aquarium for Father's Day. Joey and Jillian had a great time. We started off with the Fantasea show and wjere we saw penquins, beluga whales, red tailed eagle, sea lions, and more. Joey enjoyed the show, and Jillian was mesmerized by the changing lights. Walking around to the different exhibits Joey was very interested in everything and would say no whenever we tried to make him leave to go to the next area. Once he saw there was more to see he was ok, but did not want to leave. After the Shedd, we took a little walk to Navy Pier for an outside lunch before heading home in some pretty crazy traffic. Overall, they both did excellent and we all had a great time.