Happy First Birthday Jillian!

It is so hard to believe that Jillian turned 1 year old today! We had a fun filled day of celebrating. We started off going out for breakfast with Grandma, Auntie Christy, Uncle Chris, Andrew, and Emma. Jill loved her Mickey Mouse pancakes and got nice and messy with the chocolate chips. She enjoyed opening some gifts before heading off to the Teenie Weenie New Year's Eve Ball. It was our park district's "countdown to noon" party for kids. They had a moonjump, crafts, dj, slides, merry go rounds, see-saws, popcorn, ice cream, and balloon drop at noon. There was also time to stomp on some bubble wrap too! Jillian made it until just before noon when she dozed for about a half hour and then woke up just before the party ended and was back in full swing. She came home to a yummy lunch and played some more while Joey napped, and then Nonna and Grandpa came over for dinner, birthday cake and more fun! Happy first birthday baby girl!

Christmas!

We had a very busy but fun Christmas. We host Christmas Eve, hang around Christmas morning to see what Santa left, then we headed out to church and Assumption before going to Grandma's on Christmas day. Joey and Jillian seemed to love every moment! Here are the pictures and our holiday in a nutshell...

Christmas Eve


Christmas Morning


Christmas Day


Joey with his bike, and Jillian doing laundry...

Joshua's Journeys #47 Charge for CHARGE banner!

We received one of the nicest Christmas presents this year from Uncle Mark, Auntie Miya, and Nathan. They came over the other day and we had a very fun visit...its always too short of a time, and the kids play so well together. Joey was crawling around with Nathan, and Jillian was giving him the eyes. Nathan was giggling at Java, and they were so much fun to see all together. They gave Phil, Josh, and I one of the best gifts...they made two banner for the Charge for CHARGE 5K! They are huge, waterproof, and absolutely perfect! Such a thoughtful and meaningful thing for us, thank you so much! Miya even contacted the CHARGE Syndrome Foundation and talked to Lisa (one of the fundamental, key people at the Foundation) to help get things looking perfect. Thank you so much for this wonderful surprise! And shortly after the holidays we will be announcing the 2011 date for Charge for CHARGE, so get your calendars ready!

Merry Christmas Eve!

Before the Christmas festivities continue here I thought I'd update some pictures and holiday happenings. We had a fun visit from Uncle Mark, Auntie Miya, and Nathan last weekend, and of course among all the fun forgot to take pictures. I did get a few of the wonderful gift they gave us as posted above, but was negligent with the camera otherwise, the battery died and I am often forgetful when we are having a good time. The next day we had Uncle Paul, Aunt Katherine, Ben, Abbey, and Juliette over for a holiday celebration. The kids had lot of fun playing together. We also received some Christmas gifts for Jillian from Auntie Trisha, who we haven't had a chance to get together with, but will shortly after the holidays. As Jillian's Godmother she had the task of finding a unicorn type gift of which she did a magnificent job! The unicorn theme is the theme in her room, and reminds of us a lot of fun, as well as trying times in the NICU with Josh.

This week Andrew came over to play in the snow with Joey. They both enjoyed eating the snow, and we reminded them over and over not to eat the yellow snow! We also went over to our new park that was finished earlier this month (what timing!) and Joey loved it. Every morning he wakes up and lifts his shade to announce that the park is all finished. So he was really excited to finally visit it. We also were able to find Josh's tree that was planted by our neighbors for us to see. It is in a perfect location, and I was very comforted to see it back and in good shape. Speaking of our great neighbors, the Soles brought us some super delicious cookies (I personally love the chocolate ones, but the peanut butter are a close runner up!), as well as gifts for Jillian and Joey. Jill got a new spring coat which looks like it will fit her perfectly. They had gotten her her winter coat which she loves and I was so thankful for because time would've slipped away and she probably would've been wearing one of Joey's old boy coats! Joey also got a new hockey sweatshirt which he loves...he wanted to put it on immediately and shoot a thumbs up to the camera! Thanks! And Merry Christmas Eve to all!

Joshua's Journeys #46 Christmas Trees In Heaven

Christmas Trees In Heaven
I began to string the tinsel across the branches of the tree,
And remembered the Christmas when you were here with me.
Are there Christmas trees in Heaven? I really need to know.
Does an angel sit atop the tree and is there any snow?
The house just seems so quiet, Christmas music brings me tears,
But I know that you're in heaven as these days turn into years.
One day we will be together, it was always meant to be,
Together up in heaven, for all eternity.

I came across this poem in looking for a Christmas gift for someone, and wanted to share it. Josh, wishing you were spending Christmas here, but can't imagine how wonderful the birthday party must be up there with Jesus.

Winter Fun

This weekend we had some winter fun! Joey has been back in action helping us shovel and enjoying the snow. Friday night the weather was the warmest we'd seen in a while so we took advantage and went to Cosley Zoo to see the lights with Nonna and Grandpa. Unfortunately we forgot our camera, but we had a good time looking at the lights and hanging out in the barn keeping warm with the animals. Saturday we headed off to the mall to make sure Santa was reminded of what Joey wants for Christmas (this was visit number two this year...we saw him at the tree lighting ceremony the day after Thanksgiving). Andrew, Emma, Auntie Christy, Uncle Chris, and Grandma also joined us. All of the kids did really well. Emma wasn't too sure, which set Jillian off a little bit, but all four sat together well enough for a few pictures. Joey and Andrew told Santa their wishes, and as we were walking away from Santa, Andrew asked me "So where do we pick up my green bike?" Such a character!

On Sunday Joey and Andrew went with their mom's on the Polar Express! It was a very, very cold day, but luckily we only had to stay outside for a maximum of 5 minutes waiting for the train to arrive. It was windy and frigid but worth it all. The boys got their tickets with their names on them, and later the conductor punched them similar to in the movie (Auntie told us the shape was a "t" for "train"). We got on the train and headed for the North Pole. The train ride itself was fun, but we were also read the story Polar Express on the way out. Once we got there we had a special surprise...Santa joined us and delivered bells to all the kids and sang songs the whole way back. Back in the train depot we warmed up from our short walk off the train with some cookies, juice, and water. Then we were allowed to visit with Santa again! We were in the line to visit Santa, but since we have already mentioned to Santa our wishes (twice!) we decided not to go again, but we did get a very neat snowman ornament with Joey's name on the front, and the back reads the date and states that it was from the Polar Express 2010. So where was Jillian during all this? Well, Daddy took her to the mall for a fun filled day as well. She indulged with Daddy with a snack of a soft pretzel, then lunch was a slice of pizza, and dessert a cookie! Daddy said he let her wander and just followed her around for a while and she was having a blast! They went to a few stores to look for a Christmas dress, but came back with a few outfits instead. Looks like they'll have to venture out again soon! A great weekend had by all!

Thanksgiving, Tree Lighting, and Winter Fun!

Yes, again very behind in updating. Joey is doing much, much better now, and ready for Christmas! Thanksgiving was a lot of fun at Nonna and Grandpa's. Jillian enjoyed her first Thanksgiving feast, trying absolutely everything, and both Jillian and Joey had a blast with Uncle Kevin, Uncle Mikey, Auntie Steph, Uncle Don, and Nonna and Grandpa. We can't wait for Christmas Eve to continue the festivities!

The day after Thanksgiving we headed to town center to see the tree lighting ceremony. When we pulled into our parking spot we were surprised to see our neighbors in the spot directly in front of us! So Jillian was cuddled and loved up by Aubrie, Mr. and Mrs. Sole, while Joey kinda stayed with Joey to watch Santa arrive on the firetruck to light the Christmas tree and then head into a heated tent (thank goodness for that, it was cold and windy!) and we were able to sit with Santa and Joey told him not once, but twice what he wanted for Christmas...a "choo choo table!" Thanks Aubrie, Dominic, Nicolas, Gigi, Mr. and Mrs. Sole for hanging out with us, and Mr. and Mrs. Sole for coming over for a little while afterwards, we really enjoyed your company!

Since it has been so cold outside on Saturday (11/27) we met up with Grandma, Auntie Christy, Uncle Chris, Andrew, and Emma at Chuck E Cheese's for some inside fun and games! Joey loved playing all the games, especially the car racing games. He also like climbing and playing on the free stuff which is always a bonus! Jillian fell in love with the little Merry Go Round, and would look at herself in the mirror next to her, kick her legs, and hold on to the pole while her horsey went in circles...too cute.

The following day we had our first Christmas celebration. We usually don't get together with my dad's side of the family sometimes until February, so this year we decided to aim for a pre-Christmas celebration! Joey and Andrew had a ton of fun running around Grandma's house telling everyone "monsters were chasing them!" Jillian played really well with Uncle Wayne, and we all enjoyed each other's company. Jillian got her first tea set, which Joey and Jillian love to play with, Joey also loves his car. Thank you for all the great gifts, and more importantly great company!

Finally, we have been keeping warm and in the holiday spirit. Joey has made some ornaments, baked some cookies, and enjoyed the first snowfall! He again is a great helper when it comes to shoveling, and his snow suit is nice and warm...he has a hard time coming back in when he is out in the snow! He loves throwing snowballs at Java, and trampling the snowman that Mommy was starting to make!

Picnics, Hospital Stays, and Build A Bears

Yup, that sums up our weekend! Friday night all the big kids: Grandma, Auntie Christy, Uncle Chris, and Daddy went to the opening of Harry Potter. I have never been a fan, never saw a movie or read a HP book, and don't care to start, so that meant that just like the last movie I was in charge of all the little ones. This year I had 2 more little ones to watch (Jillian and Emma). So since it was dinner time and the other kids were out watching a movie and having yummy snacks, we decided to have a picnic in the family room. All the kids ate really well and had a fun time on the picnic blanket. I thought it might be hard to keep them all corralled and eating, but they all had a blast!


As many of you know Joey has a pretty good gag reflex and can pretty much throw up at the drop of a hat (see the post about Jillian's last doctor's appointment for an example!). Well, the week after Halloween our family got hit with the flu. Joey and Jillian got it the worst, but Phil and I also had a little bug too. We were all feelign better within a few days though. We had gotten our flu shots early in October, so we were a little miffed about everyone getting sick, but it happens. Anyways, everyone was feeling better but Joey continued to throw up or have some diarrhea after his meals. We didn't think much of it since he is pretty good at throwing up when he gets upset about anythign, and the diarrhea we thought maybe he was teething (a usual symptom for him). He had no other symptoms of being sick, he was just as playful, no fevers, not tired and even skipping naps here and there. So we just kept discounting it to Joey being Joey. Well, his tummy seemed to be getting a little distended in the evenings and Saturday night after throwing up at Uncle Alex's welcome home party (our hero is home!) his tummy was so distended and tender to the touch. Joey would say his belly button was hurting. So we decided to go to the hospital, since it was later in the evenign on a Saturday night and nothing else was open. After x-rays, an iv, and an overnight stay that brought back many memories of Josh since we were only down the hall from his last stay in the PICU before being transported to Children's, and across the hall from teh family room where we spent the night with him before he came home from the NICU, we had many memories of our times with Josh. Even little things such as signing out to go and get breakfast from the cafeteria, we had to sign our kids initials (both being JK). Anyways, without getting into too much detail, we had a pretty significant walk down memory lane and the days of Josh in the hospital, and found out Joey had an ileus. It was not an obstruction, but from having the flu earlier in the month he didn't completely shake it all and his intestines had a little build up/blockage where he had no choice but to send food back out! Unfortunately he didn't get much remedy from the hospital, he just has to work it out on his own but we all had a very sleepless night. Thank you to Auntie Christy and Andrew for spending the night at our house and taking care of Jillian for us (again similar to the old days of them watching Joey while we were at the hospital with Josh). So fast forward, Joey is doing well, hasn't thrown up since the hospital stay, his tummy gets a little bigger at night still, but he is working on it all. I guess his preemie status will always linger in him and he mihgt have little things like this that come up from time to time. The good thing is we will be home for Thanksgiving...a new worry for our family is Thanksgiving week since that was the first readmission Josh had after coming home from the NICU when he had his shunt revision.


Sunday we were discharged home by noon and Joey fell asleep on the way home since he had maybe 3 hours of interrupted sleep overnight. So he slept while we cleaned up a bit and then I went to pick up Jillian. Once Joey woke up he was ready to go, wanting to play. We had originally planned on going out with Andrew to do a Build A Bear at the county club, and given Joey is not contagious, just has some GI issues to work out, we decided to get out let him play and have some fun. Uncle Chris has a cool work place! Joey made a reindeer-bear and was able to make a wish on his star that he blew on and then put inside his bear. He told us he asked for "a choo choo table." Then he made some other crafts, decorated a cookie, and had some pretzels. We ended the night going out for a bite to eat (which Joey didn't eat much, but we're not pushing it right now since if his tummy's not ready the only place for the food to go is back out!). But he is doing better and better and getting ready for Thanksgiving dinner!


And finally, last night we put the train around the tree...we took out some Christmas stuff on Friday, put our tree up on Saturday which Joey was very helpful with saying the lights are "amazing" and "beautiful." He has been enjoying looking at the lights with Jillian. Jillian has been trying to play with all the ornaments, and they both have been enjoying the train. The train we have has special meaning to us, it was Eva's Grandpa's train, and my mom won it in the raffle at Eva's Bowling for CHARGE event last year and my mom knew that it would mean a lot for our family to have it around our tree each year.



Ok, a few other quick updates from before the weekend. We went last weekend with Uncle Paul, Aunt Katherine, Ben, Abbey, and Juliette to the train restaurant, and had a great time! Joey finally got a haircut. We usually go to our friend's house/old neighbor, but we were in dire need of a cut and so was Daddy, so the boys went to Great Clips for a cut and both did well! Jillian got an early birthday gift from Auntie Christy, Uncle Chris, Andrew, and Emma--her big girl car seat, and she loves it!

Joshua's Journeys #45 BINGO and Magic

When Josh was down at Children's for his long, long stay I found myself trapped in a small room with Josh waiting for lab results, Phil and Joey to come, and time to pass so we could go back home. I had asked at one point for mats to be put on the floor along with some sheets because I wanted to be able to get on the floor and play with my 8 month old like any 8 month old would want. Children's had play groups, but it was only an hour long in the morning, not enough activity for me, Josh, or Joey when I had both of them all day long while Phil was either working in the lounge, the Ronald McDonald House, or in the beginning back at home which at the time seemed so very far away.
One of the most fun things Josh and I happened upon one day was Hospital BINGO. Someone came up to our room and asked if we wanted to play. Thinking there was no way an 8 month old would play BINGO, the man gave me a playing card and told me to help him out. For the kids that could go to the 5th floor, they could go, or for those that needed to stay in their rooms, they could play via the television and call in when they had BINGO. Josh and I had so much fun playing, he really did watch the tv, and watched me call the second day when he actually won! The first day he did not win after several attempts, but we got a consolation prize of a little goldfish beany baby. When he did win, we got to shop from our room on the phone and tell the people what prize we wanted as they displayed them all out and told us about each one. Josh got a Build-A-Bear which was later delivered up to his room. It was something small that the hospital did, but allowed me (and I feel him as well) to feel normal, happy, and upbeat.

Phil and I are on the Family Advisory Council at CDH, as we have mentioned before, and at one meeting we were discussing some of the needs of parents and children who have extended hospital stays. Phil brought up Hospital BINGO and told everyone how exciting it was not just for the child, but the parent as well. Several others agreed and could relate to the need of something fun, interactive, and exciting.
Last month when I was at the expo for the Chicago marathon, I first came across Children's Memorial Hospital looking for people to run for their charity. A man in front of me said, "Oh my son was stayed there for a few days" and the lady behind the table handed him a shirt for him to bring home to his son. I couldn't help but think what are they going to give me to take to my son? After walking around to a few more booths seeing every charity under the sun looking for people to run for them I came across a new charity group: Open Heart Magic. Open Heart Magic is a nonprofit, volunteer group of magicians that are trained to deal with the hospital setting and children with many different conditions. They do magic for the patient, the siblings, the parents, and in turn anyone in the room. They immediately had my attention, with Hospital BINGO in the back of my head. They showed me some tricks that they would do at the bedside for a child, and told me about their program. They were so engaging, interactive, fun, and a lot of what I felt CDH could use. I quickly met the president of the group and his wife and within hours of getting home had contacted the hospital staff from the Family Advisory Council to have him come out and present to the council to determine if they would be a good fit for the hospital. Well, last night he came to our meeting and presented and I felt most if not all were impressed with the magic and the positive feelings the magicians can bring out. I am very hopeful that Open Heart Magic comes to our hospital. In the meantime, I encourage you to look at their website and learn a little more about this wonderful organization. For a child that may be in the hospital for even as little as a day or two, this organization can do wonders to lift spirits. I know Josh and I would have appreciated a little magic while we snuggled up together, and if Joey were there he would have been entertained as well.

Halloween Happenings

Ok, so a little late, but better than never. Here is the summary of our Halloween Happenings:
On 10/23 we went to Nonna and Grandpa's in the morning for some blueberry pancakes made by Grandpa, and then we went to Goberts Farm for some fall fun. Joey had a blast feeding all the animals, and even though it was raining (pouring at times) we all had a really fun day. Jillian even got interested in the animals and saw the giraffe! The kids also enjoyed hanging out at Nonna and Grandpa's especially since they had their pumpkin all blown up in the yard.
Sunday 10/24 was the annual NICU reunion party. All the NICU graduates come back to visit the nurses and families that had spent some time there can see each other and catch up. Joey had a lot of fun this year and was running around doing all the crafts, talking to and walking away with some of his old nurses (of course Bethany!), and enjoying some food, good music, and of course the bubble machine! Jillian looked a lot like Joey did last year at the party, totally enthralled with the bubbles. This was the first Halloween dress up party too!
During the week we went to the liibrary, all dress up of course, to participate in the parade, listen to some Halloween stories, and dance to the festive music.
The 30th was yet another dress up party at Auntie Christy and Uncle Chris' house. Joey and Jillian had a lot of fun with all the kids, some of the adults even dressed up which was pretty fun too!
Then of course there is Halloween, the main event. Joey and Andrew had a lot of fun trick or treating, and we tried makig taffy apples at the end of the night which was, interesting and messy!
Sorry for the condensed post, but I realized I am way behind, and figured you'd rather see the pictures anyways...

Sonny Acres and other happenings

Sunday night we had our annual trip to Sonny Acres to pick out our pumpkins and have some fall fun. Joey and Andrew enjoyed running around, but were in heaven when they saw the train and cars that they could ride. Thank goodness we got there late enough where there was only 10 minutes left for rides! They took advantage of every second though. Jillian enjoyed playing with the pumpkins, but fell asleep shortly after getting home. Grandma, Auntie Christy, Uncle Chris, Andrew, and Emma left shortly after we got home, but Joey and Daddy stayed up to carve the big pumpkin. Of course Joey did a Mickey pumpkin! Joey helped Daddy carve the pumpkin, but when it came to pulling out the seeds, Joey took one look, actually gagged (ok, I guess no surprise there), and said "I don't like pumpkins!" and wanted no part of it!


Here is a potpourri of what else has been going on this month since the last update. We celebrated GG Joe's 88th birthdday at Grandma's house. GG Joe is the fittest 88 year old you'll ever find, always playing Mr. Fix It and always on the go. October 10 was my 9th marathon. It was my worst time overall, but my first marathon back since having 3 kids, so I was happy to have finished! Joey really seems to enjoy coming to watch me run. He will wake up early 4:30am with no problem and trek to the city with Grandma to cheer me on. Auntie Christy, Andrew, and even Emma also came down to see me at a few different spots along the course. Thanks for the cheers, it was so refreshing to see you all! I heard Emma was bopping along to Elvis singing in Lincoln Park and was having a great time at the race. Joey and Jillian came to Assumption to help me put the other "estate" back in order from fall clean up. I don't usually have my camera with me, but we were having some snacks out there and I had the camera in my diaper bag. They enjoyed being in the open, playing, blowing bubbles, and picnicking with their brother. I pointed to Josh's picture and asked Joey who it was and he said "My brother Josh." So sweet. The following weekend Auntie Trish came by to hang out with us for a while and go to lunch. It was a fun day, and Jillian loved all the attention from her Godmother! This past weekend we also had a visit from Uncle Mark, Auntie Miya, and Nathan. Watching Nathan, Joey, and Jillian playing was a lot of fun, but even better was watching Nathan pet and play with Java. He kept smiling and laughing...his laugh is so infectious, its adorable. I always seem to forget to take pictures, but we had a great time with them. Joey, Jillian, and Java really enjoyed Nathan's company (as did we!).


And finally, last but not least, Java has an update of her own. Java had a hematoma and had to have surgery on Monday. She came home with a big bandage on as well as a cone. She did not tolerate the hard cone at the vet, so they gave her a softer one, but she still seems mortified to be wearing it. She went to get her bandage off today, but they had to rebandage her because while her ear is healing nicely as soon as they took the bandage off she shook her ears and seemed interested in her new freedom. Poor Java will have to have the bandage on until Monday, and the cone is supposed to be on until November 8 when her stitches come out. I guess she'll have a costume of her own this year for Halloween! Outside of Joey telling us Java has a booboo, and Jillian attempting to free Java from the cone once in a while, they have been very gentle and patient with her while she's been recouperating.

The Stats

So Jillian went in for her 9 month appointment today, here are her stats:
Weight: 19 pounds, 12 ounces 66%ile
Height: 28.75 inches at the 86%ile
She is very tall and starting to thin out a little bit.
Yesterday Jillian hit a big milestone and walked 5 steps on her own, repeatedly! She is doing amazing in terms of walking. I asked our doctor if there was any concern of her not crawling at all, but he said she was doing remarkably well. He enjoyed her babbling, she fought to get out of my arms and walk around, and the nurses laughed at the fact that she clapped for them after her shots. They each took a leg and gave her a shot at the same time, Jillian barely let out a whine, and then started clapping. It was really funny.

On the total flip side...Joey and I also were there for our flu shots. Joey had fallen asleep in the stroller while we were waiting to get in (which really wasn't all that long, it was just after lunch so he was a little sleepy). He stayed sound asleep for Jillian's appointment even with me leaving the room to get her weighed which worked out really well. The nurse even did his vitals for his shot with him sound asleep. The very unfortunate part was that he woke up just before they were going to do the shot on anyone and Joey was confused as to why I was giving Jillian her bottle in her diaper in a strange room. So he got very upset and very worked up. For those of you that know my boys, they have hyper gags, and if you upset them they will react with throwing up (at least until Josh got his nissen)! So Joey performed all too well and trashed his clothes, the blanket I brought with for Jillian, and hit his shoes and the stroller. I was lucky in the sense that I wasn't holding him, and he was in the stroller so he got it all. Luckily I had an extra set of clothes (what I call my dunce outfit for whichever one ruins theirs), and I just threw all of his clothes away. It was quite a scene! For the kid that didn't have the appointment he sure had the anxiety. So much for the pep talk on telling him to be the supportive big brother and tell his sister that it'll be okay!

Vacation pics, updates, and CS Fire Station Open House

So I have been purposefully negligent in updating the blog. I just loved Phil's post and all the videos of Josh and didn't want something else to be on the screen when I first look at the blog. Anyways we have been fairly busy. Mid September we went on our first family vacation to Door County for a long weekend. It was a fun time, although the weather was a little on the chilly side. Joey loved being by the water, Jillian enjoyed the outdoors, and we all thought the cabin was perfect for our first vacation. Joey slept in a big queen bed, and Jillian had other plans. She refused to sleep in the Pack and Play and insisted on sleeping with Mommy on the couch (Daddy did take one night too). We were worried that she would be spoiled and insist on the same treatment once we got home, but she must've known we were on vacation and went back to her regular sleeping patterns when we got home, as did Joey who did not nap at all when we were on vacation! We had a fire pit outside of our cabin so we could have fires and make S'mores. We went to the beach one day, although it was quite cold Joey took his shoes off and ran towards the water! We also spent some time in Sturgeon Bay at the Maritime museum and Joey went on a tugboat! Joey and Jillian enjoyed walking around the towns of Door County and were so well behaved when we were out and about and at restaurants. They definitely seemed to have a fun time. It was a perfect getaway for us, and at a good time for us as well.


Jillian turned 9 months Sept. 30! I can't believe how time is flying! She is doing so well and seems to be growing up so fast. Jillian refuses to be fed by anyone and will only eat table food. No more baby food for her! She definitely puts Joey to shame at the dinner table, but we knew that would be the case early on! Watch out Nathan and Juliette: Jillian has her 9 month appointment next Tuesday so we will see how her "healthy" stats compare! Jillian loves her walking stroller and will stroll her doll around the house by herself (stopping to clap for herself, pick something up, or adjust her baby doll). She likes holding your hand (usually just one) to walk around and has taken 2 steps all on her own! She will most likely skip crawling all together, as she throws a little fit when she is put on her tummy. She will roll over and find a way to squat and then pull herself up and walk. She definitely prefers being upright! Jillian has become quite vocal as well. She will say Mama, Dada, ni-ni (for night-night), no no, yeah, cat (because of a toy), dog, and has attempted ball. Of course she also does the Lala, Gaga stuff as well. She loves hearing songs and will clap at the end of a song, or if a song involves clapping she will join in with you. She lifts her arms over her head (like "so big") when we say "Amen!" and will wave hello and goodbye (especially at her reflection in the mirror!). She enjoys peek-a-boo and also ripping off her bib and teasing you with it, as well as smashing her sippy cup on Cheerios or flipping the plate on the floor. Which also leads to her joy of feeding Java!


Joey has been doing really well too. He enjoys giving his sister hugs and kisses, but is also not afraid of taking toys or claiming which are his. He cracks us up with his witty comments and we sometimes wonder where he even picks up some of his hysterical phrases. The other day I was changing out pictures in our frames and he pointed to one and said "that's Jillian, me, Andrew and Emma picking apples, waiting for the tractor." He pointed to the other one and said "me and Andrew with our firehats." The third one he asked who was in the picture. I told him it was him and his brother Josh. He responded with "Where is my brother? Where is Josh?" It put a smile on my face to have my first conversation with Joey about Joshua, and know there will be many challenging, heartbreaking, and also joyful times in explaining that Joey is a twin. I want to keep this post very light, but will probably revisit this at a later time. At any rate, it shows Joey's curiosity and Joey is always asking "why" these days. I respond with "because..." which is usually followed by another "why?". After a few of these back and forths Joey responds "Why because?". So I am now consciously trying to answer without saying "because..." I am really enjoying his energy, curiosity, and ways that he constantly amazes me!


Finally, today we went to the Carol Stream Fire Station for their open house. They had a lot of activities for the kids to do including a big bouncy slide (which neither Joey or Andrew cared for), a firefighter's obstacle course, mats to stop, drop, and roll on, all the gear to try on, firetrucks and ambulances to go in, we watched a helicopter land, balloons, and refreshements. Joey was a bit more shy than Andrew, and both seemed to like the popcorn the best! If you ask Joey what town he lives in he responds "Carol Stream Fire Station." In my attempt to teach him the town he lives in I always tell him as we are driving by the fire station that the Carol Stream Fire Station is his town's fire station, so I think he thinks he lives in the Carol Stream Fire Station! At least he has a bit of a clue!

Joshua's Journeys #44 -- From Daddy

When I put together the "Josh & Jill" video over the weekend, I relived the entirety of Josh's short & powerful life. I (and I imagine this may be common among bereaved parents in general) have this dichotomy inside me: I have a powerful need to do whatever I can to remember Josh and his life; at the same time I do what I can to preserve my (relative) sanity by avoiding reliving things like the night he died over and over again.

Do you know how certain memories are filled with a type of un-categorizable emotion? Like a song in the background, but felt rather than heard? Something that marks that memory in such a way that it provides a special & unique marker? Almost like you could identify the memory just by the feeling it provides.

I used to have that only for memories of my youth; getting ready for one of my parents parties and listening to the talking heads, or playing with my transformers, or countless other childhood memories.

It's a special gift that I now have for most, if not all, of Josh's life. I watch the slideshow and relive Josh's first days. My utter fear both for him and of him. My fear that both of these children living in the NICU at a bajillion dollars a day was going to bankrupt us.

It takes me longer than Sandy to really bond with my children. I loved them all from the start, but there's the love of one's new baby (or babies) and then there's the love of a parent for their child. Sandy seems to make this transition immediately, which terrified me because God, am I such a terrible person? Josh needed more from his parents than any other child I've known, and he's my child. How is it that Sandy seems to be so in love with this child from the start, and what I'm mainly feeling is trepidation?

But here's the secret: A child with special needs is an amazing gift. Every tiny, insignificant accomplishment of theirs makes you squeal with joy. I can't begin to explain the joy I felt at his first real big smile. I thank God that is on video, and I can watch it whenever I want.

Josh Smiling on Chrismas from Phillip Kurby on Vimeo.

I want to share a couple of my memories of Josh with you all -- maybe we can relive some of his life together.

When Christy, Sandy's sister, first saw Josh laying there in his little bed (was it the incubator or the warmer bed? I don't know anymore) her eyes welled up with tears and she brought her hand to her mouth as she said "He's precious". I love her for that. It makes me cry just thinking of it, and I will always hold this memory close to my heart.

Josh in the NICU from Phillip Kurby on Vimeo.

That's the thing: If I had only known how beautiful he was at that moment, much of Josh's earlier days would have been so much easier for me. Sandy always talks about how cute his ears were. How she loved that one was decidedly heart shaped. I couldn't see that beauty when he was born, although I saw it later and ache for it now. If I ever get a chance to speak with a family who've just had a CHARGE baby (or anything else), I will do my absolute best to show them just how beautiful that child is.

When we starting talking about the possiblity of Josh's homecoming, I had the idea to make Eddie Money's "Take Me Home Tonight" the soundtrack of his trip home. I can't hear that song without thinking of the drive home with Josh & Sandy in the back seat with the stereo blasting. Josh was finally coming home to sleep in his room and meet Java. It's kinda funny now to think of it, but Java really didn't seem to care too much for yet another baby living with us. I love Java, but man she is dumb sometimes.

Josh Coming Home from Phillip Kurby on Vimeo.

One of my main motivations for writing this entry is to help me remember Josh. I remember the day after Josh died, Sandy and I were sitting on the floor in our kitchen crying and talking about him. I told her I was afraid of forgetting him -- his smell, his mannerisms, his face. I've already forgotten his smell, and it's like an aftershock of his death. For a long time I would hunt around the house smelling stuff just to try to find him again, but its gone.

Again, our diligence in documenting his life with video & pictures is a blessing. I never have to forget his face or the way he moved. I never have to forget his cough (oddly important to me), and I never have to forget how I used to gently stroke his head.

I hope above all that I always remember the things Josh taught me. Of utmost importance is this: Love really does overcome all. I still feel Josh's love in my life; I only hope I'm able to direct mine with enough focus to reach back to him.



I'll do another one of these in the future. There's so much more to Josh's story.

Joshua's Journeys #43 255 Days

255 Days of Baby Blue Eyes
255 Days of Laughter and Tears
255 Days of Hopes and Dreams
255 Days of Family and Friends
255 Days of Life and Love
255 Days of Beginnings, Ends, and New Beginnings
255 Days... that Jillian has now been with us, and the number of days Joshua spent with us.

Alike in so many ways, and different in just as many. We remember birth dates, death dates, and this one time when Jillian (our youngest child) has been with us the same number of days Joshua (our oldest child) has been with us.

Josh and Jill Grow Together from Phillip Kurby on Vimeo.

Beauty Will Rise by Steven Curtis Chapman:
It was the day the world went wrong
I screamed til my voice was gone
And watched through the tears as everything came crashing down
Slowly panic turns to pain
As we awake to what remains
and sift through the ashes that are left behind
But buried deep beneath All our broken dreams we have this hope:

Out of these ashes, beauty will rise
and we will dance among the ruins
we will see Him with our own eyes
Out of these ashes, beauty will rise
For we know, joy is coming in the morning...in the morning, beauty will rise.

So take another breath for now, and let the tears come washing down,
and if you can't believe I will believe for you.
Cuz I have seen the signs of spring. Just watch and see:

Out of these ashes, beauty will rise
And we will dance among the ruins
We will see Him with our own eyes
Out of these ashes, beauty will rise
For we know, joy is coming in the morning...
in the morning...

I can hear it in the distance and it's not too far away.
It's the music and the laughter of a wedding and a feast.
I can almost feel the hand of God reaching for my face to wipe the tears away, and say "It's time to make everything new. Make it all new."

This is our hope. This is the promise. This is our hope. This is our promise.
That it would take our breath away to see the beauty that's been made out of the ashes...out of the ashes...
That it would take our breath away to see the beauty that He's made out of the ashes...out of the ashes...

Out of these ashes, beauty will rise
and we will dance among the ruins
We will see Him with our own eyes
Out of this darkness, new life will shine
And we'll know the joy is coming in the morning...
in the morning...beauty will rise!

Oh Beauty will rise
Oh, oh, oh, Beauty will rise

Labor Day Weekend Fun

Friday we headed out to another Schaumburg Flyers game (this time with Nonna and Grandpa) to wrap up their baseball season. The Flyers did not have a good record, but the park and atmosphere are still a lot of fun. It was really cold and windy, but we bundled up since it was Sesame Street night and Jillian and Joey did great! Joey got a ball from one of the players on the other team, and while all the other kids kept theirs Joey threw his back. So another player started playing catch with Joey. Joey was in heaven. He had a huge smile on his face and kept throwing the ball back and forth. He was much more unsure of the Sesame Street characters, but Jillian shook Elmo's hand.


Saturday we were home in the morning while the basement was being worked on. Joey knows our contractor by first name (Mike). Mike made it to buddy status quickly by bringing Joey a doughnut last weekend! Since it was a nice day we left Daddy and Mike to work on some basement details while we went to the 2Toots Train Whistle Grill in Glen Ellyn for lunch! Joey and Andrew loved watching their lunch delivered to the table by the train. Joey doesn't know Thomas the Train, but loves trains in general, and was happy to see Thomas on one of the tv's by our table too. The diner was decorated like a 50's diner, and the atmosphere was perfect for the boys. Emma loved looking at the lights and decor, and Jillian loved the cupcake that Joey got. It came with a train whistle that Joey likes, but Jillian tried getting her hands on the cupcake...go figure!


Sunday we did our annual apple picking. Last year we went fairly early as well, and this year it was opening weekend and a perfect day. The weather was great, the kids were in good moods, and we all had a fun time. Joey liked the tractor, but was a little clingy with the hayride itself. Jillian had a fun time playing in the grass and trying to eat an apple. She wasn't terribly successful. She would get mad if we tried to start an apple for her, but she still has no teeth so she can't quite bite into an uneaten apple on her own. Emma seemed to enjoy and have better success at getting a little taste. Still she had a lot of fun. Joey insisted on carrying his own bag of apples no matter how heavy they got. Joey and Andrew had a great time picking apples and then playing on the tractors!

If at first you don't succeed...

Try again! Joey got some new goldfish. This time we actually spent more than 13 cents, and got the $4.99ers. They have been alive for 2 days and counting! Joey named them Tiny One and Big One (both are similar in size though), and the fish bowl is called Mickey Park. He enjoys feeding and looking at them, but also says that they scare him sometimes...he is a bit of a scaredy cat these days.

Jillian has been doing really well. She is now 8 months, and so incredibly close to crawling. The hard part is she would much rather stand, hold your hands to walk, or hold on to the ottoman or another toy and walk along on her own. She has stood independently for more than 5 seconds, even swinging her arms or holding things, so we'll see if she bypasses the crawling stage altogether. Her first official word was about a week ago--Mama! I'm not just saying it...Phil agreed! She plays with a lot of words now like Mama, Dada, Cat (I think from her play table), Gaga, ba-bye, and ni-ni (which I really think she is trying to say night-night since she says it when she's tired). She doesn't necessarily use all the words appropriately yet, but she is definitely playing with her voice and trying to get some vocabulary. She is very vocal most of the time, and wants so badly to be as mobile as her brother. She is doing well with finger foods eating most everything as long as it is cooked or soft.

I continue to pick up the book CHARGE Syndrome and read a few pages when I can. It is really well written and I think an excellent tool for practitioners and new CHARGE families. Last weekend I did a 16 mile run where I ran to, around, and back from Assumption thinking about Josh and all the footprints he has left.

And on to the month's end in pictures...
Here are a bunch of pictures from the last 2 weeks or so of August. Joey went to the splash park by Grandma's house, then the regular park, Trifesta (the fest at our church), another trip to Cosley Zoo where Jillian was a bit more interested, the kids playing at home, last weekend at the pool, and Nonna and Grandpa's house where they got Joey and Jillian a play table! No pics of the new fish yet, but if they stick around I'm sure you'll see them. Enjoy!

Joshua's Journeys #42 CHARGE Syndrome Book Is Here!

I was waiting with baited breath, as Joshua's grandparents all got their books first, for our copy of CHARGE Syndrome the book that has a few pictures of our beloved Joshua! The book is fantastic...wonderfully written by experts that we've had the opportunity to meet (a few of them)at last year's conference. There are 4 pictures of Josh in the book: one of him doing some non-nutritive sucking on a pacifier, one of Mommy holding him, one post surgery when unfortunately he was not feeling all that well (the picture was supposed to show an infant in pain), and one of Mommy doing some kangaroo care (I'm covered well!) with Daddy reading a story to him. Josh has definitely left his mark on our world again. I had a hard time putting it down yesterday after thumbing through the pictures. I enjoyed all that I had read so far, it really is well written by experts on CHARGE. It was also so great to see a lot of friends in there as well...Mighty Max and Amy, Ellen, Ben, and more. If you would like to see the book, I'd be happy to brag!

Charge for CHARGE Fund Raising

Thank you so much for your participation in the 2nd Annual Joshua Kurby Charge for CHARGE 5K! We had a great race day, and are already thinking of next year's date. Thank you for all that participated, volunteered, donated, and sent well wishes. We were able to surpass last year's fund raising total by almost $100...so far! We still have until the end of the year to make our $5,000 goal!

Surpassing last year's fund raising total shows great success for the race. I had been warned by other race director's of a "sophomore slump" where there is a huge dip in participation, volunteers, and overall enthusiasm. I am so pleased to say this was not the case for us, and know that we will be back even bigger next year! Please feel free to send me any comments/suggestions about the race/post race events so we can continue making each year a more successful year than the previous.

The breakdown of funds raised:
$2,480 in registration online, mail-in, and race day
$450 additional donations
to total $2,930 in funds raised from the 2nd Annual Charge for CHARGE 5K!
We had accrued $1,365 on our CHARGE Accounts web page prior to the race, meaning some people that knew they were not going to be able to attend the race donated prior, or donations were made in memory of Joshua at other times during this year. So our total funds raised this year so far are $4,295!

Last year's total ended at $4,225, so we are already ahead of last year and well on our way to our goal of $5,000 for the year end. Thank you for all you have done to help support the CHARGE Syndrome Foundation, and our family.

2nd Annual Charge for CHARGE 5K!

Yesterday was the 2nd Annual Charge for CHARGE 5K and for what threatened to be a rainy day was an absolutely perfect morning. I was up and out putting signs along the course at 5am with a sprinkle of rain here and there, asking Josh to pull some strings up there. After heading back to the pavilion to settle some stuff, others from their cars and home, we all were amazed with the double rainbow in the sky. I couldn't stop taking pictures and couldn't show how the rainbows were perfectly framing the pavilion where the race registration was.
As volunteers arrived everyone was talking about the rainbows that they saw, the family of deer, 2 snapping turtles, it was just a perfect start to the day for everyone. We all felt Josh's presence and had smiles on our faces.


The rest of the race went well. We had a glitch or two with our race timing company which delayed our awards adn raffle ceremony, but otherwise we were very happy with the day's event. We had 2 t-shirts this year white was the official race shirt with the proper year (2nd Annual). The blue shirts were misprinted but the color that I had wanted. Unfortunately the printer had put Inaugural on those shirts, so our volunteers wore those for the day. Thank you to all of our volunteers that helped out, and many who have done so for 2 years now! Without you we could not do this at all! And thank you to Beth for always helping us...this year just like last she took Joey on the walk so that we wouldn't have to worry about him during the race. She also had Andrew and is always so good with them. Thank you!

Our first place finisher, Jesse Owens did a great job with a finishing time of 17:38. It was wonderful to see so many people come together to help us raise money for the CHARGE Syndrome Foundation. We had 5 states repreesnted: Illinois (of course), Ohio, Michigan, New York, and Washington. Thank you to everyone that came out and made it a wonderful day. I will post the total amount raised as well as more pictures (although there are a lot here) very soon. All money will be forwarded to the CHARGE Syndrome Foundation in memory of Joshua and can be viewed on his Charge for CHARGE web page, which I will have the link up again in the next day or so.

Again, thank you to everyone and we hope to see you next year!

Bean Bag Tournament

Last weekend we had a bean bag tournament in Barrington to help raise funds for the CHARGE Syndrome Foundation. A friend of mine was throwing her first fundraiser for the foundation and we were glad it was a nice day and close by. She did a remarkable job with a dj, raffle, pizza, and of course the tournament. Phil and I did not win, but in using Dom's technique I did much better than I thought I would and we both felt we could've done better. But in good fun and for a great cause we had a wonderful time. Thanks Becky for putting on such a great event, we hope you do another one next year! (And thanks Grandma for coming out on the hot day to watch the kids while we played!)

The flood...

The weekend of the 25th we were surprised to find our basement flooded. Since we are a few weeks out now I can be light in talking about it, but we were definitely not expecting to see the water in our basement since we've had worse rain and hadn't flooded before. Our sump and battery back up went out so we were in operation cleanup. As we were throwing cut up carpeting out well windows our neighbors realized what had happened and came right in to help. We are so lucky to have such wonderful neighbors. They came with fans, squeegies, helping hands, and even took Joey back to their pool to keep him out of our way! Thank you so much to all of our neighbors for helping us out in so many ways! We really shouldn't complain, we think we only got a few inches, and the other side of town was hit really hard. We were also able to turn the night into a get together with great friends/neighbors/family.
(Dominic has some much better pictures that he put together and e-mailed me, but I haven't figured out how to put it up here yet. Maybe Phil will help me with that--hint, hint)

Water boy

Joey has been enjoying the pool this summer. He likes playing in our kiddie pool and ou rfriends came over one day to play with us. Later that day our neighbors had a graduation party for Dominic and Joey was in the pool and in heaven. He loved splashing around with Mr. Sole and of course all of the kids that play with him and include him in everything. He did not want to get out. Congrats Dominic!

Joey 2 yr. and Jill 6 mos. pics

So I know I am horribly behind in posting pictures, about a month to be exact, but in July Jillian had her 6 month pictures taken with Joey's 2 year pictures. They both did really well. Joey kept giving Jillina kisses and hugs and Jillian was eating up the camera.

Joshua's Journeys #42 CHARGE run this weekend!

Don't forget to sign up for the 2nd Annual Joshua Kurby Charge for CHARGE 5K on Saturday, August 14 at 8AM. To sign up go to signmeup.com and search CHARGE or Kurby. There is also race day registration beginning at 7AM. We hope for great weather and a fun day!

More updates on our happenings to follow soon...

Joshua's Journeys #41 Mixing Business with Pleasure

I beleive a lot of times life is a preparation for what is yet to come. My fourth grade teacher taught me sign language, which I would later have to do a refresher course, I volunteered for the Special Olympics, and always had an affection for special needs children. I also have my master's degree and am a registered and licensed dietitian and the main focus of my work is with people on tube feedings: calculating their needs and making sure patients are able to tolerate them well. Before I got pregnant the very first time around, I began a new path in the population which I serve and started working in the NICU figuring out formulas and breastmilk compositions for babies. Little did I know in a few years I would use all of my experiences with Josh. There were many times in which I called upon my background to help with Joshua's care and development. One of the dietitian's at Children's Hospital paid me a huge compliment saying she thought I advocated for Josh very well and had the expertise to back up my convictions. I joined in when the doctors, nurses, dietitian and other healthcare workers were rounding on Josh and did not hesitate to speak up.

Shortly after Joshua's passing I was asked by my boss if I wanted to pick up an account in pediatrics. She stated that she knew it might be hard for me under the circumstances of losing Josh, but knew that I dove in head first and had a spot in my heart for pediatric and neonatal nutrition. I was back and forth on if I would accept the account that was a good hour plus away from home. I even talked to some of Josh's NICU nurses about the decision, how they deal with loss in the work environment and if they thought it would be appropriate for me to accept the account. I did accept the position knowing that if I let the opportunity to work with trached, vent dependent, and g-tube fed kiddos I might regret it the rest of my life. The first day I cried all the entire hour-plus drive to Harvey, IL. I was fine the entire day and was overwhelmed by the wonderful, caring nurses, and completely touched by each baby and child that I came in contact with. It was where I wanted to be. I cried the whole way home missing Josh, and still do most all days, but I am so happy to be working here.

I had to give up the account when I was on maternity leave for Jillian, and thought I wouldn't get it back. The dietitian that covered for me lives a lot closer, but she was no longer able to do the account, so this past Monday was my first visit since Jillian was born. When offered to go back again, I jumped on it, even if it meant the long drive. I received a warm welcome and return, and am so happy to be back. On Monday when I was there I was told that CBS news would be there today to do some coverage on the financial issues that a lot of facilities like this face. The only one like it in the state, the facility I work at has a capacity for 67 infants to young adult aged patients all g-tube fed, some do eat orally as well, and most all are trach or vent dependent. While I am not happy that the facility is in such a financial state ($2 million behind funding from the state), I wanted to share a clip of where I work and to bring some attention to the issue of aid for this population.

Click here to view the clip of Children's Habilitation Center.

Joshua's Journeys #40- You Make Me Happy!

This post that Phil came across is one that I think speaks clearly to our life with Josh and many other moms that look at our blog (ok, all the CHARGE mommies out there!). Please feel free to read as much or as little as you would like. It made me smile, cry, nod, and sigh as I related to a lot of what this mom was talking about but through everything knowing I wouldn't trade it for anything and that I am happy with the life the Lord has given me.
Click here to read this wonderfully written post.

I'm so proud

Joey loves Galaga. Watching him play is so fun!


- Posted using BlogPress from my iPhone

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.