3 years FAC

The other day I walked into our Family Advisory Council meeting and noticed a cake. Thought, hmmmm someone's birthday? In fact it has been 3 years since Phil and I, and a few other parents have been a part of the FAC at our hospital. We were picked to be on this council to help the hospital staff see what it is like to have a child going through so much, to be able to advocate for those parents, children, siblings and voice the compassion that needs to be in a hospital. We have seen so many changes, have voiced opinions and shared ideas on many projects including the construction of the pediatric ER and peds units, materials that are important for admission, discharge, and the many procedures that our kids have gone through, and of course my personal baby was bringing Open Heart Magic to the hospital. Driving over, I had thought what can I bring to the FAC anymore? Joey is 4, Josh has been with the Lord for 3 years, I feel like it is all slipping away. We take summers off of these meetings and maybe that was why I felt like I was so out of touch with things. In our meeting there was a discussion about pain managements and it is amazing how a topic can just be stated and memories flood back like it was yesterday, things you thought you had forgotten, not the memory as a whole but the nitty gritty details, oh how those are engrained in my head and heart forever. It is like a word association game: you say apple, I say banana. You say pain management I say call IV Therapy immediately. You say suction: I say don't go past 5. All it takes is one word and you are back in time, holding Josh (man was he fiesty, he didn't get his nickname of "manimal" for nothing!), watching his "popeye face", holding a pacifier in his mouth as he sucked feverishly, watching his tongue move side to side in his mouth as his eyes go side to side in wonder of when it will be done, the initially scariness of not breathing, the need to be suctioned, the kicking of feet ("straight kickin' boo" was another term of endearment), putting so many bean bags of pressure on him that he couldn't move. Oh I could really go on and on, you say pain management and I am there with Joshua reliving it all. And that is why these meetings are so important. We have lived through it all good, bad, indifferent, it has been hospital life, home life, and all that can be in between. We are still advocating for Josh, for any other child that might have a stay long term or short, heck it doesn't have to be a kid with a chronic illness or syndrome it could be any kid going to the ER that has the flu or broke an arm. It my chance to make the stay shorter, the anxiety lessened, and the hospital not so scary. As I told the FAC as the bottom line of pain management. All I wanted to do was be mom, to be the one to comfort to be at the head of his bed, to show that I wasn't scared so that he wouldn't be, and to know that my opinions were taken into his plan of care because I am his mom. Thank you Josh for allowing me to always be your mom.

13th Marathon!

Yes, it was my unlucky 13th marathon this year. Given the fact that I felt it was an unlucky number I still finished with a fair time, not my best (3rd best time), but not my worst either. With the hot summer it was hard training, but the support from my personal curb crew pushes me to the finish every time, thank you Mom, Phil, Christy, Mom, Dad, Joey, Jillian, Andrew, and Emma for chasing around St. Charles to Aurora and back to watch me run, it really means the world to me even if its for a quick wave or hi-five! Not sure why these pics spread out into 3 batches, but here they are, the kids seem to enjoy the mayhem of the marathon, and Joey was my perfect coach handing off some chapstick when I needed it most!

Apple Picking

It is that time of year again! I love fall: sweatshirts, apple picking, beautiful leaves, and lots of outdoor fun. We did our apple picking a little early this year because the summer that we had left for a shortage of apples at most farms. Luckily, where we usually go they still allowed picking, but limited it to the quarter pec per person. The kids still had a blast and we picked lots of delicious Jonathon apples off the trees, and they had a bin of Golden Delicious. We also picnicked outside and were treated to Grandma's apple pie a day later! Yum, yum!

Hockey, Dance, and S'mores!

A few more pics of Joey loving hockey, Jillian the dancing queen, and a fire and s'mores with Grandma!

Back to school

Sunday we finished off our fun filled summer by going to the Brookfield Zoo. The kids were super excited to go and we had a few passes from someone that I teach so we took advantage of the free day. We packed up and headed out to be one of the first to enter the zoo, saw quite a bit in a few hours, had lunch in front of the giraffes, and shortly after there was a downpour but luckily we were right by a covered area. The storm passed quickly and we were able to make our way to the dolphin show before heading home for naps. On our way out of the zoo we ran into one of Jillian's new teachers! (more about that after the zoo pics) Monday was a day of rest and relaxation before the start to a busy school year. Jillian was up first on Tuesday. She was very excited to go to school and be with her new teachers. She met them the week before with Daddy, and it is nice that we know one of her teachers from the CDH Parent Advisory Council. One of her daughters who is actually in Joey's class was also in the NICU for a period of time, and we have seen Beth, aka Mrs. W, every other month for the past few years. With 2 new teachers to their school, and both in the same classroom which is Jill's it is nice to know that we know Mrs. W outside of school as well and know that Jill is in good hands. Jill loves Mrs. W and was so excited to put on her back pack and head out to school. She remembered the routine from last year quite well: hanging up her back pack, going potty, washing hands, and the look on her face with Mrs. W pretty much says it all; I know she'll be fine and have no problems at all. Another big girl thing that I forgot to mention earlier in August was that Jillian was upgraded to her big girl bed! She is no longer in a toddler bed, but a full size bed, princess sheets and all! We were initially worried she might fall out since her room doesn't allow for the bed to be against a wall to keep her from rolling out at least the one way, but she has proven big girl status once again and has been in her big girl bed for 3 weeks already! Today was Joey's turn. Joey has always be my more apprehensive one, to put it lightly. But he was also excited for school this morning. It was a rainy morning so he donned his froggy raincoat and boots and brought his back pack along. He found his name on his cubby without problem, and washed his hands and waited for the doors to open. He saw his friend Ryan who he played t-ball with over the summer and they both exchanged smiles and hellos. I started to get nervous as I saw his teacher open the door, she said hello to Joey and he turned around and ran right to her. He picked out his name tag and his teacher helped him pin it on, as she was doing so another parent stepped in front of me and I was worried Joey was going to get upset. He never looked back, never said goodbye, just walked right into class! I was so proud of him after the leg hugging and tears from last year which seemed to last longer than they should have, and I thought for sure with Jillian being Tuesday/Thursday and him being Monday/Wednesday/Friday he would want to be with us. I was so pleasantly surprised and almost worried as to why he did so well, but I guess the fact is he is growing up! I didn't even have a chance to take more pictures because he was moving so fast to get into class! Jillian is going to be able to go to work with me Wednesdays and Fridays while Joey is in school. She goes to the Kids Club while I teach a class, so today was her first time heading in there on her own. She was very shy to my friends at the desk and asked me not to leave in the daycare. She didn't cry but was a bit cautious. I helped her find some ponies to play with and then headed out. When I returned she was still playing in the same spot and Sara had mentioned she didn't get up to play with the other kids but also was fine with them coming to play by her. So I think Friday she will open up a bit more to them and that new experience. She did say she loved mommy's work and wanted to go back on Friday, luckily she is pretty adaptable and I wanted to train and teach so that I could be there to drop off and pick my kids up from school and have one along if I need to like I am doing this year. I am sure she will settle into that part of the routine and we will still have a good hour and a half once I'm done with work to play before getting Joey.

Nic helps Joey skate!

Saturday morning Joey had quite the surprise, Grandma came by to come and watch him play hockey, and just before he got out on the ice Nic (his role model!) and Mr. Sole (aka Mr. Hockey himself!) came to see Joey on the ice! They brought him a Wolves Hockey bag that he loves carrying around like a big guy, thank you so much! Joey was loving it all, and gave plenty of smiles and thumbs ups to us. Mr. Sole of course was King of the arena, back at one of his old stomping grounds knowing everyone there. Grandma got to see Joey in action, and Jill was happy to hang with Grandma and watch. After his practice, Nic put on his skates and Joey was in heaven playing tag and learning some moves from Nicolas. Joey has a picture of him and Nic on the ice holding hands hanging in his room. Thank you so much for getting up and out the door early to make Joey's day! After hockey we were off for some Jill time. Jill's dress for Auntie Trish's wedding came in, so we went to go pick it up and her try it on. Of course Jill thought she was a princess and did not want to get out of it, or give up the basket once Grandma told her she'd be holding a basket as she walked down the aisle. We got home and matched up the shoes we had gotten, and got the stamp of approval later in the day from Auntie Trish when we went for Andrew's birthday party (yes, another one, but his Grammy and Papa are in, so he got another party). Sorry no pics from the party this time, but the kids had a ton of fun! Anyways, Jill has a picture of her in her dress and loves showing it off, can't wait til she is all dolled up with her hair done, tights on, and running around at Auntie Trisha's wedding! Here is a preview of her in her dress, and a few pictures from the shower with Auntie Trisha and Auntie Pam.

Here Comes the Bride...

Jenn, my cousin, got married yesterday! I couldn't have been happier for her, she looked so beautiful, so happy, and there was so much love surrounding her. She made a gorgeous bride, and of course her groom looked quite dapper too! They are expecting in November so they have a busy year still ahead, but we were so happy to have been able to be a part of their special day. The wedding took place at St. James Farm, one of the most beautiful places in the area! It was quite warm, but I don't think anyone really seemed to mind because the smiles from the bride and groom made the heat not seem so bad at all. The kids loved playing around with their new friend Scooter, and then we all enjoyed and indulged at Wildfire afterwards. Thank you so much for including us on this very special day! Congrats Jenn and Chuck!

Happy Birthday Andrew!

Last Saturday Andrew turned 5! We couldn't wait to celebrate at his superhero party! We were told to dress as our favorite super heroes, so our family turned into the Super Kurbys! It was a hot day, but the kids weren't deterred from the bouncy, and had a blast jumping as superheroes, eating pizza, drinking juice, having cake (of course slim Joey stuck to watermelon!), and helping Andrew celebrate his 5th birthday in style! Happy Birthday Andrew! Today (9/1 already!) is his other birthday party, where his grandparents from NY will be in, and another superhero theme, I'm sure the Kurbys will strike back this afternoon! But Andrew played a pretty convincing Spiderman and Batman! Auntie made some adorable capes for all the kids to be superheroes themselves. Emma didn't quite get into it until the end, so Jill and her hammed it up for the camera. All our kiddos are superheroes!

Hockey!

Last weekend was Joey's first time on the ice. Joey was so excited to play hockey, more than any other sport we've asked him about. When we got the park district brochure I asked him if there was anything he wanted to do this fall. Without even opening it up he said hockey. I thought, he must be confused, so asked again. Hockey. He said he really, really wanted to play hockey. He had done an All Sorts of Sports class before and when they did floor hockey that was one that he really enjoyed, so we thought sure, why not. Now, if you remember his t-ball attempts, the last was successful because it was outside, but he was quite hesitant. He did have fun with t-ball, but with hockey we weren't sure about the whole ice part. So we told Joey he should talk to Mr. Sole aka Mr. Hockey. Joey spent the next 2 days stalking his car to see if he was home and then finally he was able to bring him the guide to tell him he wants to play and get his expert opinion. We ended up signing him up, and I wasn't sure what to expect. The night before he said he probably needed to wait until he was 6 or a little older, and I kept telling him that Mr. Sole said he was the perfect size. In the morning Joey was very excited to go, and once we got to the rink was stoked to get his skates on and watch the others. He loved hanging out in the locker room waiting for his coach, and then his first step on the ice...he was off. Not one look back at us, only smiles, of course he fell, but got up so fast, and loves it! We couldn't be happier with his love for hockey!