Sunday, May 30, 2010

Happy 30th Birthday Phil!

Happy 30th (and golden) Birthday Phil!
I have nothing to say here except we love you! (And stop complaining about being old...I'm a good year older!)


Today (Phil's 30th!) we went to brunch at Cantigny with Nonna and Grandpa. Joey was enthralled with the fountain, the golf carts, and beautiful scenery at breakfast. After eating we walked around outside a bit. Joey had fun looking at the tanks and running all around. We went into a museum and Joey gave one of the Vets a high five and got a poppy for donating some money.

Thank you to all of our service men and women! And we can't wait for Uncle Alex to come home in December!

Outside Fun

This weekend Joey and Jillian cooled off poolside. Joey showed off his water slide skills for Nonna and Grandpa.

Flyers Game

At Just Play Daddy got some free tickets for a Schaumburg Flyers game, so this past Friday night we went to the ballpark for a lot of fun. Joey and Andrew did really well. I have a feeling we'll be visiting again soon!

Just Play!

Last weekend was Just Play, a big outside day of fun for the whole family. Mommy had to work both days, but Joey, Andrew, Jillian, Emma, Daddy, Auntie Christy, and Grandma came to play for a while. After Just Play Joey woke up from his nap and wanted to be outside again so we went to the park. Jillian enjoyed the swing, but Joey was enjoying the slide much more this summer. He also had a lot of fun running the bases on the baseball diamond. It was very hot, but a very fun day!

Wednesday, May 26, 2010

Malachi is home

Malachi passed away yesterday at 4:30pm. We continue to pray for comfort for those he left behind. Our hearts are heavy for his parents and all those who were touched by this young life.
"Malachi's life was definitely NOT in vain. God had a mighty plan for his seven months and we would like to collect tangible evidence of the impact Malachi has had on the lives of those who have followed our story."

I urge you, first of all, to pray for all people. Ask God to help them; intercede on their behalf, and give thanks for them.-Timothy 2:1

Tuesday, May 25, 2010

Praying for Malachi

Please join us in deep prayer for the life of Malachi and strength for his family. A fellow CHARGEr is getting ready for God to call him home. His family is at peace with what the Lord is presenting them and trusting Him in a most graceful way. While Josh's passing completely blindsided us, his doctors, nurses, and basically anyone that knew him, I cannot imagine the agony and grief of waiting and wondering when the time will come for your son to pass. Please visit their blog to learn more about this extremely amazing boy and his valiant parents. Please say a prayer for him, his family, and the days and weeks ahead for all of them. If you would like to learn more about Malachi's journey feel free to visit their blog:

"Through the tears and pain and grief, we are thankful. We are thankful that God has given us peace about what must come next for Malachi and that we can accept the next step in His plan for our lives--as unimaginable as it may seem. We are thankful that Malachi will be hole and able to fully see and fully hear and play and not be poked or suctioned or hooked up to any monitors. Most of all, we are thankful that God allowed us seven months with our beautiful baby boy and the assurance we have in Christ that we will one day be reunited."

We are thinking of all of you, holding you all in our hearts and in prayer.

Friday, May 21, 2010

Joshua's Journeys #36 Eating

I have been waiting to do a Joshua's Journey about his feedings: tube feedings, bottle feedings, and solids. I knew I would have so much to say and wouldn't know where to start. But with Jillian starting solids, I thought I'd start with a brief (as brief as I can) look at solids with Josh and I will definitely revisit this subject again!

Maybe it is the dietitian in me, but I love, love, LOVE feeding babies their first solids. I love seeing their eyes of surprise at the new texture, smacking their lips figuring out the mouthfeel, the tongue push and look away when they are overwhelmed, and I even enjoy the mess on their face and anywhere else it may land! Josh had his first taste of food in the NICU which was yogurt from a q-tip. I would dip the q-tip into yogurt and put it on Josh's lips to get him to first accept something touching his lips since he had quite an aversion to that, and to get him to start taking tastes. Josh had a hypergag, so anything going into his mouth made him gag and it took a bit of work to get him to even take tiny little tastes in the beginning. After a while we graduated to trying some bottle feedings which is pretty backwards. Most babies take a bottle before solids, but Josh had his tastes of yogurt well before Joey ever tried solid foods. When we finally started to try bottle feedings with Josh his record consumption was 8 cc's. For those that may not know cc's, there are 30 cc's in and ounce, so 1 cc is pretty much a droplet. It would take working for a good 10-15 minutes putting a nipple to his mouth to get him to accept it without gagging, and then another 30-45 minutes of working with him to try and get those droplets out of the bottle. Of course this also required a lot of suctioning since he'd often get upset, and after any feeding we'd have to suction to see if he was aspirating anything. In order to check if he had aspirated anything we'd dye the milk blue so once we were suctioning we could see if it was the milk in the suction catheter.

Even though it was a test of patience and persistence I loved feeding Josh bottle feedings and spoon feedings. Mondays were my favorite days because we'd go to speech therapy to see Cathy and work on his feedings. Cathy allowed us to do so many things with Josh because she believed in us and our care for Josh. In order for him to really taste something (since a lot of taste is smell as well) we would try a taste of yogurt when changing his trach. We would simply cover the stoma with some gauze and the pressure of one of our fingers and give him the vanilla yogurt (Activia!). I remember the bright eyes and delight in Josh's face the first time we did that. Not only was he happy to have the trach out at the time, but to get the taste of vanilla must have been quite a deal for him.

Solids were definitely easier for Josh to tolerate (bananas being his favorite- and oddly enough to this day Joey will not eat bananas at all), and it was expected that Josh would eventually use his g-tube for liquids only and eat solids regularly after a couple of years. Josh seemed to enjoy his time eating as well. I think he liked the one on one attention with the bottle feeds, and the interaction with his brother during solid feedings, sitting in his chair next to his brother eating just like he did. After a lot of practice from the early days of trying to get a q-tip past his lips Josh would insist on holding his own spoon while I fed him, or take the spoon I was feeding him with to assist me in feeding him. Again, I can go on and on about feeding him, and I know I will revisit this subject in different ways later on, with so many stories about his unique feedings, but for now I thought I'd just put up some pictures of Josh eating.

Veggie Tales

Tuesday 5/18 was Jillian's first taste of vegetables...carrots! I have decided to make her food for her instead of buying baby food. It is more economical and much healthier. So far it seems to have worked out well! She really enjoyed her carrots. Joey even wanted to try them so I let him get his spoon and take a bite. While he does like cooked carrots, he did not seem to like the pureed form, or maybe was just really surprised. He took a spoonful of "Baby's food" and put it in his mouth. Then he looked at the spoon, looked up at me, made a horrible face, and said "Mommy's turn" took my hand and spit it all out in my hand! He then wanted to try some of her rice which he calls "Baby's hummus" and got a very similar reaction. I had thought when I started making Jillian real foods maybe Joey would take an interest and want to eat it too, but I think he's learned his lesson that his food is much better! Jillian seemed to enjoy the carrots though, and has been so fun to feed. She lets you put the food on the spoon, but right away wants to take the spoon from you and pull it to her mouth on her own...little Miss Independent! Today we moved on to peas and she seemed to take to that pretty well too. She has been really enjoying solid foods--eating and playing!

Every morning we do our exercises. Joey will either lay next to Jillian or stand and lift his arms and legs and count with me or sing the abc's while we bicycle our legs. Yesterday when I said it was time for exercises he went over to Jillian and decided to be the exercise instructor lifting her legs and counting like I usually do. And like a good instructor he tried to share some milk to rehydrate afterwards too.

Tuesday, May 18, 2010

Emma Rose's Baptism

Sunday was the baptism for Emma Rose, my niece and Goddaughter. In no way can I ever replace Mary, but I was honored to be asked to be Emma's Godmother here on earth, while Mary takes care from above. Emma looked so beautiful and behaved quite well in church. (The best part was after she was stripped of her diaper before being dunked she took the opportunity to tinkle on her mommy--Good girl!) The celebration continued at Emma's home with lots of family, food, and fun. It was a very nice ceremony and party. God Bless Emma Rose!

Tuesday, May 11, 2010

Mother's Day

We had a low key, but fun mother's day. We had brunch at the country club that Uncle Chris works so we were well fed, and the boys went on the golf carts for a ride. We walked around a little bit and got some cute pictures by the fountain.

Later, I brought some flowers over to Assumption (the cemetery) and spent some time there. Unless I am running at the cemetery (which I have found to be a very peaceful and concentrated place to run), I spend all my time at our grave site. However, on Mother's Day I decided to wander over towards the area where most babies and young children are buried. Maybe it was a newfound maternal instinct, one of a bereaved mother, but I felt the need to take the time to appreciate the lives of all the children there, and the families they have left behind. Josh has sent me on quite a journey, but I appreciate all that he has taught me, and look forward to many more experiences he has in store for me.

I came home to Joey napping, and was able to find Phil playing with Jillian. Jillian gave me a great mother's day gift by laughing her first big belly laugh! She laughed over and over, and we were actually able to capture it on video. Like Josh, Jillian waited until Joey was napping to give her first laugh. They both wanted our undivided attention, and had the same leg kicking, eyebrow lifting giggle going on. It was so cute, and definitely made my day! (I'll have to see if Phil can get the video posted for you to see!)

Tuesday, May 4, 2010

Weekend Fun

Saturday Joey woke up very early (4:30 am!) and took his first out of state trip to Kenosha, WI to watch Mommy run a half marathon! Joey was wide awake at 4:30 when I put him in the car to go to Grandma's house. He wanted to go in and play with Aspen, but it was a brief stop before jumping in Grandma's car to head up to WI for the race. Joey pointed out all the trucks, and telling us that Uncle Don drives one!

Grandma and Joey had a lot of fun cheering on Mommy and all the other runners. Joey was yelling "Go Runners Go!" and enjoying some snacks and the outdoors. Joey had been on most all of my training runs with me, and really enjoys being in the jogging stroller. He often wakes up from his naps asking to go running. He asked Grandma at one point to go in the street and run. Joey was so excited from the day, he didn't even sleep on the way back home! All morning today he has been running around the house yelling, "Go Runner!"

On Sunday we had a long overdue visit with Uncle Paul, Aunt Katherine, Ben, Abbey, and Juliette. The kids had a lot of fun playing outside and inside, and it wasn't until everyone was settled down in their pj's that I remembered to take some pictures. They were all wound up, but ready to give Chien (their dog) some hugs, and to plop down and rest on him. Poor Chien!

And finally...a quick Jillian update: Jillian started rice cereal on Friday night and has been enjoying eating solids quite a bit! She doesn't fuss at all and even seems to chase the spoon into her mouth if you aren't quick enough. She does push a lot out right now, but she is still learning, and I think will pick up on it pretty quickly!

Monday, May 3, 2010

Joshua's Journeys #35 International Babylost Mother's Day

To all my friends I have met who have an angel themselves, Happy Mother's Day. You are still a mom, you have strength and love from beyond. As Carrie Ann says so beautifully..."Some people only dream of Angels, I held one in my arms."
I love you and miss you Josh. Thank you for being the first to change my name to Mommy!