Tuesday, November 23, 2010

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!

Wednesday, November 10, 2010

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.

Tuesday, November 9, 2010

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...