Last year at this time Josh experienced his first kids' birthday party. Josh and Joey went to Ben's 3rd birthday where there were lots of kids running around and playing. Initially we were apprehensive about bringing Josh since there'd be so many kids and it was still cold and flu season, but we also wanted Josh to experience everything that Joey and any other kid could. Josh had a great day! He didn't have to be suctioned once during the entire party, he was very content watching the bigger kids play, and being held and loved while he took everything in. It was a great day to be out as a family. Thank you Ben for having Josh at your party!
Tuesday, February 23, 2010
Saturday, February 20, 2010
Online Registration Now Open!
The 2nd Annual Joshua Kurby Charge for CHARGE 5K registration is now open online! Please go to www.signmeup.com/68848 (this should work this time!)to register and pass the word along! Once processed at CARA (Chicago Area Runner's Association) there will be a link there as well. If you would like to volunteer please let me know! Again the date is August 14, 2010 8:00am start!
Thursday, February 18, 2010
Valentine's Day and Swimming
For Valentine's Day we dressed Jillian up in her tutu that a few of my fitness class participants got for her as part of my shower gift. It was hard not to look at Jillian and laugh or smile.
Last weekend Joey tried out his water legs and went in the pool with Daddy for his first Parent-Tot Swim Lessons. Joey enjoyed the water and splashing around with Daddy.
Here is Josh last Valentine's Day with his bib and paci. The next day he rested up, but still wouldn't let go of his Valentine balloon while he slept. On the 18th of February he was admitted to CDH because of a possible shunt infection. This led to the transfer to Children's and his very long stay there. More to come on that, but I wanted to keep things uplifting for now. He is such a cutie!
Last weekend Joey tried out his water legs and went in the pool with Daddy for his first Parent-Tot Swim Lessons. Joey enjoyed the water and splashing around with Daddy.
Here is Josh last Valentine's Day with his bib and paci. The next day he rested up, but still wouldn't let go of his Valentine balloon while he slept. On the 18th of February he was admitted to CDH because of a possible shunt infection. This led to the transfer to Children's and his very long stay there. More to come on that, but I wanted to keep things uplifting for now. He is such a cutie!
Wednesday, February 10, 2010
Out of Town Visitors
This past Saturday we were lucky to have Uncle Chris and Aunt Brooke come in from MI/MO to meet Jillian and see Joey. After lunch with Uncle Chris and Aunt Brooke we had a visit from Uncle Mark, Aunt Miya, and Nathan. Nathan sure is getting big, and looks so cute. Joey can't wait to be running around and causing trouble with him. It was also fun to see how in a few months a baby really grows...Jillian is 6 weeks today, and Nathan is 4 1/2 months.
In the evening we had Nonna, Grandpa, Auntie Steph, and Uncle Don over for dinner so they could also visit with Uncle Chris and Aunt Brooke. It was a lot of fun having everyone together. Sunday morning we met Uncle Chris and Aunt Brooke for breakfast before they had to head out of town. Jillian enjoyed her time being held, fed, and loved by Uncle Chris and Aunt Brooke. Thanks for the Valentine's gifts, great company, and a fun weekend!
And here are just some other random pics... (note Phil and Joey watching the Puppy Bowl instead of the Super Bowl!)
In the evening we had Nonna, Grandpa, Auntie Steph, and Uncle Don over for dinner so they could also visit with Uncle Chris and Aunt Brooke. It was a lot of fun having everyone together. Sunday morning we met Uncle Chris and Aunt Brooke for breakfast before they had to head out of town. Jillian enjoyed her time being held, fed, and loved by Uncle Chris and Aunt Brooke. Thanks for the Valentine's gifts, great company, and a fun weekend!
And here are just some other random pics... (note Phil and Joey watching the Puppy Bowl instead of the Super Bowl!)
Tuesday, February 2, 2010
Joshua's Journeys #30 -Easter Seals
Mid January Josh and I had our first visit to Easter Seals, a great organization that helps special needs children. They have an audiology department that I had heard good things about. It was between Easter Seals in Villa Park, or going to a Westchester campus of Children's. Easter Seals was much closer, and the people there were very friendly. When Josh was in the NICU Phil and I had gone to a parent's night out where we were able to meet other parents, parent liaisons from Easter Seals, and enjoy a night of wine tasting (it was at a Wine Bar--too bad I still wasn't sipping any wine at the time, but Phil sure enjoyed it!). We met Sharon, one of the liaisons that I had been in contact with over the phone for a few other things, and our personalities clicked immediately. It was so nice to hear that we weren't the only ones doing and thinking some of the things we were. At any rate, she had become an instrumental support person and great person to network with.
Sharon met Josh and I practically at the door our first day at Easter Seals. We went to the audiology department for a few more hearing tests and to discuss hearing aids. Joshua absolutely hated the extra hearing tests and had a major wardrobe malfunction (the only time in public which really is surprising considering). The audiologist sat down with me and we worked on how we could keep hearing aids on Josh's ears. The structure of his ears were so floppy, and one ear was already curled in, however that ear ended up being the one to hold the hearing aid on the easiest. As a quick sidenote here, many people noticed Josh's ears first as being different. I LOVED Josh's ears. If I could've known that I wouldn't physically have him here today I would've gotten earmolds made, like some do handprints of thier kids because I loved them so much. The floppy ears were so adorable, and the one, (yes Crystal you noticed in the picture correctly) was shaped like a heart. With the hearing aids in it was hard to tell it was heart shaped because the aid pushed it up a little which is why that side fit so much better. But I would always kiss and tickle his ears, maybe they didn't look like everyone else's ears, but I loved his ears so much. I think CHARGE ears are the cutest, although I know if we had a longer journey with Josh and made it to trying the cochlear implants there would be a time when we'd have to do some reconstructive surgery on his ear because of its floppiness.
Karen, the audiologist helped me facilitate the delivery of the hearing aids so I could get them as soon as possible since she knew that getting a jump start on the aids was a big deal to me (although I was told it would still take 4-6 weeks, she got them to me in only 3). I was told at Children's that we had to go through the steps of hearing aids to prove that they wouldn't work for Josh before we could start down the cochlear implant path, which everyone knew Josh would need considering his profound hearing loss. Not that I wanted more surgeries for Josh, but I wanted the implants as soon as possible so we could work on speech or any hearing as soon as possible too. We were back at Easter Seals in February when the aids came in, but it was a great first experience with lots of helpful and resourceful people. Sharon, and the audiologist came to Josh's funeral mass and I later spoke with Sharon when I was delivering some donations to Easter Seals. She mentioned that she and Karen sat in the church holding each other's hands and holding back tears unsuccessfully. Josh melted so many hearts with his smiles and actions. We were so glad to have crossed paths with Sharon and others at Easter Seals. Last year our family walked their "Run for the Kids 5K" and we plan to again this year.
Sharon met Josh and I practically at the door our first day at Easter Seals. We went to the audiology department for a few more hearing tests and to discuss hearing aids. Joshua absolutely hated the extra hearing tests and had a major wardrobe malfunction (the only time in public which really is surprising considering). The audiologist sat down with me and we worked on how we could keep hearing aids on Josh's ears. The structure of his ears were so floppy, and one ear was already curled in, however that ear ended up being the one to hold the hearing aid on the easiest. As a quick sidenote here, many people noticed Josh's ears first as being different. I LOVED Josh's ears. If I could've known that I wouldn't physically have him here today I would've gotten earmolds made, like some do handprints of thier kids because I loved them so much. The floppy ears were so adorable, and the one, (yes Crystal you noticed in the picture correctly) was shaped like a heart. With the hearing aids in it was hard to tell it was heart shaped because the aid pushed it up a little which is why that side fit so much better. But I would always kiss and tickle his ears, maybe they didn't look like everyone else's ears, but I loved his ears so much. I think CHARGE ears are the cutest, although I know if we had a longer journey with Josh and made it to trying the cochlear implants there would be a time when we'd have to do some reconstructive surgery on his ear because of its floppiness.
Karen, the audiologist helped me facilitate the delivery of the hearing aids so I could get them as soon as possible since she knew that getting a jump start on the aids was a big deal to me (although I was told it would still take 4-6 weeks, she got them to me in only 3). I was told at Children's that we had to go through the steps of hearing aids to prove that they wouldn't work for Josh before we could start down the cochlear implant path, which everyone knew Josh would need considering his profound hearing loss. Not that I wanted more surgeries for Josh, but I wanted the implants as soon as possible so we could work on speech or any hearing as soon as possible too. We were back at Easter Seals in February when the aids came in, but it was a great first experience with lots of helpful and resourceful people. Sharon, and the audiologist came to Josh's funeral mass and I later spoke with Sharon when I was delivering some donations to Easter Seals. She mentioned that she and Karen sat in the church holding each other's hands and holding back tears unsuccessfully. Josh melted so many hearts with his smiles and actions. We were so glad to have crossed paths with Sharon and others at Easter Seals. Last year our family walked their "Run for the Kids 5K" and we plan to again this year.
Wednesday, January 27, 2010
Bowling for CHARGErs 2nd year!
Crystal has set the date for her 2nd Bowling for CHARGErs event. This year it is the weekend after Joshua's Charge for CHARGE 5K, so it will be a great way to unwind from the race and have some fun. Crystal put together a website to keep everyone updated on the bowling fundraiser, and on it is the video montage she so nicely put together in remembrance of Josh, as well as a montage of last year's event, and a lot of other great stuff. Please check it out, and if you can save the date! Here is the website:
http://bowlingforcharge.blogspot.com/
http://bowlingforcharge.blogspot.com/
Sunday, January 24, 2010
A Fun Weekend
Friday night we took Joey and Jillian out to Uncle Don and Auntie Steph's house to help celebrate Uncle Don's birthday. Joey had a blast running around and playing with Uncle Kevin and Uncle Mikey. He was showing off some of his toys, playing with pillows, giving hugs to Baby, and just getting crazy running around and showing them how much energy he has! Jillian was very good too, she stayed awake for part of the ride out and was pretty wakeful most of the time that we were there. She enjoyed the company as well as all of the love and attention! Thanks for a fun night out!
On Saturday we had Uncle Paul, Aunt Katherine, Ben, Abbey, and Juliette over for breakfast. The kids played well together and ate at their own little table. It was really cute. Abbey and all the boys went downstairs to play games while all the other girls stayed upstairs where it was a little quieter. Thanks for coming over, Joey was beat from playing so hard, and Jillian was glad to be snuggled and held by Auntie Katherine!
Sunday (today) we made it out for Jillian's first mass experience. We made it in before mass started which was great, and both Joey and Jillian were excellent the whole time! Afterwards we went for a late breakfast and we're relaxing the rest of the day before Daddy goes back to work tomorrow after being off since Jillian was born!
On Saturday we had Uncle Paul, Aunt Katherine, Ben, Abbey, and Juliette over for breakfast. The kids played well together and ate at their own little table. It was really cute. Abbey and all the boys went downstairs to play games while all the other girls stayed upstairs where it was a little quieter. Thanks for coming over, Joey was beat from playing so hard, and Jillian was glad to be snuggled and held by Auntie Katherine!
Sunday (today) we made it out for Jillian's first mass experience. We made it in before mass started which was great, and both Joey and Jillian were excellent the whole time! Afterwards we went for a late breakfast and we're relaxing the rest of the day before Daddy goes back to work tomorrow after being off since Jillian was born!
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