Saturday, January 29, 2011

Where's Daddy?

This past week Phil had to go on a business trip to Russia. While he has been gone on business trips this long before, for some reason knowing he is so far away makes it seem like it is even longer. We were only able to talk briefly, sometimes at 3am, so Joey and Jillian had not been able to really talk to Daddy much and the one time we tried to Skype it was a bit disasterous. To top it off, Phil left Sunday evening, with a layover in Germany for 8 hours, thank goodness otherwise he would've been landing in Russia around the time of the deadly bombing on Monday! Thank goodness he flew into Nizhny and was safe. Here is my attempt to track Daddy and explain to them on the globe, computer, and with the toy airplane where Daddy is!

Daddy is now home and loving up Jill while Joey continues to nap (he has not been sleeping a whole lot since Daddy has been gone). Thank you to all of our friends and family that checked up on me and the kids on Monday and throughout the week! I know Phil will post soon more about his journey!

Joshua's Journeys #50 Scribble Monsters

Today we got the opportunity to go and see the Scribble Monsters! When I told Joey what we were doing I told him we were going to see a play. He asked "With other kids?" I told him yes, and that it was called the Scribble Monsters. The whole drive he asked many questions "Are the monsters going to eat me? Will they bite me? Will they scare me? We'll sing? And dance?" Joey has been all about monsters lately...scaring him, Java being a monster, etc. So this was a good way to show him that the word monster is not so scary! In addition, all proceeds were going to the CHARGE Foundation! I had learned of this from the CHARGE Listserv and spoke with Tracy the lady who put this all together. She has a young daughter with CHARGE, a little younger than Joey, and had mentioned that she had seen our blog and knew of me. So we went to the production and as I was strolling the kids into the school the next car was a lady pulling her daughter out and said "Sandy, right?" It was another CHARGE mom! I don't know why I hadn't thought of it before going, but I saw 3 other CHARGE families that I knew, and met Tracy and her family whom I had just "met" online. It is so hard to believe that a syndrome affecting 1 in 10,000 worldwide can bring so many people together. It was a great production and the kids had a lot of fun, and I had a nice time catching up with those I knew and meeting Tracy and her beautiful daughter and family. It builds the excitement even more for our Orlando trip to the CHARGE Conference in July!

Friday, January 28, 2011

Joshua's Journeys #49- Kennedy's Birthday

I just read a very well written account from one of the greatest CHARGE moms I know recalling the birth of her daughter, Kennedy. I'm sure many stories of the births of our CHARGE kids are similar, but she hit the nail on the head for many of those first emotions. Both Josh and Joey were taken away from us at birth. We did hear Joey cry and Dad was able to touch him briefly. All I saw from the table I was strapped down on was Josh surrounded by doctors and nurses and then a quick glance of him as he was whisked quickly away. Lisa says the words "cautiously optimistic" which is where I basically lost it in her post... as early as 19 weeks when I had my cerclage and was put on bed rest I was told those words and hated hearing them, however true they may have been. Anyways, I really wanted to share this beautiful account that Lisa shared on her blog. Yesterday was Kennedy's 13th birthday! She is one of the most amazing, happy, and energetic girls I know (pardon me, young lady!). Thank you again Lisa for sharing your story and allowing me to cry, laugh, and recall the day Josh and Joey were ushered into this world as well. Happy 13th Birthday Kennedy!

I miss you Joshua...

Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus. 1 Thessalonians 5:17-18

Monday, January 24, 2011

Babies with babies

Jillian got a crib for her baby dolls from her Godmother, Auntie Trisha for her birthday. Unfortunately it wasn't here in time for her birthday, but I think it was better this way as Jillian was able to show off her mothering skills. She instinctively knew just what to do...she held the baby, patted her, put her in her crib and rocked her. She even gives her babies bottles. Never mind the times she picks them up by the leg, smacks their head against the crib, puts them tummy down with the pillow on their head...lets just say she still has some things to work on! But she loves her new crib. After a visit by her cousins house to watch the Bears lose (boo-hoo!) she came home and immediately put her baby to bed before heading upstairs herself.

And here are a few pics of Java loving the early Valentine's for Joey and Jillian (it was only $1 so who cares, she hasn't destroyed them yet!)

Sunday, January 16, 2011

Masionis Visit!

Saturday we were so very lucky to have Crystal, Dan, Alex, Bailey, and Eva over for the afternoon. Josh and Eva are the two that brought our families together. Since CHARGE Syndrome is such a rare disorder (affecting 1 in 10,000 worldwide) it was very difficult to find another person with CHARGE Syndrome in the area. I joined a Listserv shortly after Josh's diagnosis and met a lot of people around the world with CHARGE or with a child with CHARGE. Still, I hadn't met a single one in person until the day of Josh's funeral. Crystal, Eva's mom, has a heart of gold and from reading my post on the Listserv about losing Joshua, she drove a good distance with Eva when she found out about Josh. It was at Josh's funeral that I first met another child, and a couple years older than Josh, that had CHARGE. It warms my heart to this day and words cannot describe how thankful I am for Crystal to have come out to Josh's funeral and to bring Eva so I could hug her, talk to her, and see what Josh would be like in a few years. Crystal and I have remained close through each others blogs, fundraisers (she does the Bowling for CHARGE fundraiser and includes Josh in it each year, and has come out for the Charge for CHARGE 5K), birthday parties, and e-mails. At the CHARGE conference in 2009 (just 4 months after Joshua passed) Crystal invited me to a mom's dinner with 6 other CHARGE moms who I have also formed great relationships with. However, this was the first time we were able to bring just our two families together to play and talk. It was unfortunate that they couldn't make it to Jillian's birthday party, but worked out much better this way because we were able to spend the whole time with all of them! Jillian loved the Puppy that they got her for her birthday, and I am especially thankful that Crystal got Jillian's name programmed in for us so I don't have to worry about figuring that out! Jillian loved playing with Alex--they share the same birthday, so they hit it off real well! Joey had a blast with Bailey--he wanted to do everything Bailey did and laughed the whole time! And it was so wonderful to play with Eva and to see in person how far she has come. Like I mentioned I visit her blog daily (at least) and Crystal does such a remarkable job posting videos of her progress and all that their whole family does that I feel like I am up to date on all she does, but to be able to play with her and see her in action brings it all to a whole new level. She is an amazing and beautiful girl, and I thank Josh for sending her and her family into our lives.

Crystal also made me a pretty bracelet with all of my kids names on it. I love it! Thank you so much! And yes, we will be getting together much more often and hopefully again soon! They have had a rough year, but we are hoping for a healthy and fun 2011!

Bake, decorate, eat!

Joey and Jillian have been having a fun time baking last weekend and Friday night. Last weekend Joey and Jillian took out their new Playdoh Cake Making Station that they got for Christmas and had a great time making and decorating cakes. Saturday morning Joey helped Daddy make some super yummy waffles. Joey love to help out in the kitchen, especially when it comes to pouring and stirring things! He often helps Mommy make desserts and will help wash and spin our salads at dinnertime. Last Saturday Joey and Jillian made their own real cakes with the Easy Bake Oven Jillian got for Christmas! Joey was really interested in the tool that pushes the cake into and pulls the cake out of the oven. Both helped make a small, yet yummy yellow cake with chocolate frosting! They both loved it! And finally, Friday night Nonna and Grandpa came home from their trip to Florida so we made them dinner after watching the kids during the work day, and then celebrated by decorating our own cupcakes! Grandpa loves his chocolate and encouraged Joey to add more chocolate sprinkles, while Nonna kept Jillian from becoming a sprinkled mess!

Saturday, January 8, 2011

Joshua's Journeys #48 Charge for CHARGE 5K

I am pleased to announce the date for the 3rd Annual Joshua Kurby Charge for CHARGE 5K. We will be having the 5K this year on Saturday, August 20 at 8:00 a.m. The place remains the same: 391 Illini Drive in Armstrong Park, Carol Stream, IL. We are going to be included in the race calendar February issue of Competitor's Magazine, so we'll see if that helps our field grow even more!

Please take the time to mark this date on your calendar so you can run, walk, or volunteer. If you would like to volunteer please let me know! More details, registration forms, etc. to follow and I will update more info on our blog as well as our Charge It For CHARGE page, so please check in from time to time. Hope your new year is off to a great start, and hope to see you on August 20 (if not sooner)!

Friday, January 7, 2011

Jillian's 1 year check

This morning I took Jillian in for her 1 year check up. Jillian had the hardest time with the elevator...I think she might have a fear of elevators. There was an older lady in the elevator looking at Jillian and talking to her and another baby (9 1/2 months). Jillian was shaking her arms and legs and looked terrified. When the lady got off the elevator the other baby's mom asked me if she knew where she was going because she looked so scared. I thought maybe she does know, but thought she was still too young to be scared of the doctor's office. As soon as we got in she was perfectly fine. She had smiles for everyone, and laid perfectly still as her doctor checked her out. She said giggled and babbled a bit and her doctor said that she was the "best patient he's had all year, and one of the best 1 year olds he's ever had." He said they are usually hard to keep still, but she was so interested in all he was doing and held my hand while he checked her out. She then clapped, babbled, and was jumping on the table, but was very easy to keep calm and controlled. The nurses commented that she had great targets for her shots (yes she has plump thighs!) and Jillian let them know she was not happy with the shots, but calmed down quickly. The nurses were on there way out the door when they asked if I had any questions. I asked if we could go... they said yes unless I had a question. I was just not used to the whole get your shots and leave concept. With Josh and even Joey I would have to wait 15 minutes after their shots to have their hearts rechecked. Joey was given the okay at his last appointment with his cardiologist, whom we never have to see again because his murmur is gone, and Jillian has not had any issues at all. As her doctor said she is a beautiful and perfectly healthy! So here are her stats...

Weight: 21 pounds, 15 ounces (66%ile)
Height: 29 inches (48%ile)
Head circumference: 17 7/8 inches (62%ile)

Sunday, January 2, 2011

Jillian's Birthday Party

Well, Jillian's birthday week came to an end, as did 2010. We celebrated her birthday with family and friends on New Year's day...what better way to start the year than being surrounded by the people you like best! We did miss a few people at the party, but Jillian still had a great time, and has had quite the birthday week of activities and celebrations. Happy First Birthday Jill!

Also, here are Jillian's 1 year pictures. We don't pick up the prints until the 11th, but here are some of her pictures.