Missing You

Not an hour goes by that we are not thinking of and missing Joshua. He filled our lives with so much love and life that he is still present everywhere. Joey has picked up many of Josh's mannerisms that he never had done before such as crossing his legs, tugging at his ear playfully, and keeping us up at night! We have read that Joey is exhibiting the classic signs of grieving for an infant... not sleeping well through the night, being a little more clingy to his parents, crying more than usual, and he's a little more irritable. Joey definitely knows a part of him is gone. I think the "twin thing" is a true phenomenon. We do know that our angel is present and watching over us all.

Thank you to all of our friends and neighbors that have been helping us get through the past 2 weeks. We appreciate all you do and are grateful to have you in our lives.

In Remembrance of Joshua

Mommy and Daddy got some tats so we can tell Joshy we love him every day.




Thanks to everyone for their support -- it means more than you know.

Joshua Roy Kurby

For those of you who have been following Josh and his journey of life, he had been at Children's Memorial Hospital downtown for about a month. Just after midnight on Saturday, March 14th, God decided that Josh needed to be with Him. He has grown his angel wings and will be looking down on us. We miss him deeply and love him so very much.


Services for Josh are as follows:

Tuesday, March 17th 3pm-8pm
Brust Funeral Home
415 Gary Avenue
Carol Stream, IL 60188
630-510-0044

Wednesday, March 18th
10am Mass
St. Isidore Parish
Gary and Army Trail Rd.
Carol Stream, IL 60188

Assumption Cemetary
1S510 Winfield Rd.
Wheaton, IL 60187

A comedy of errors

Josh was discharged from Children's on Tuesday. He was sent home with his PICC (a more serious version of an IV) line in so we could continue to do blood draws for a while without hurting him. Well, on Wednesday Sandy and I noted that Josh's arm (the one with the PICC in it) looked swollen and red. So, what did we do? That's right, back to the ER!

Josh was re-admitted to childrens (after yet ANOTHER ambulance ride from CDH -- mom rode with him this time) on Wednesday. Why was he admitted? Not because of his arm, but because a med that they prescribed him from his previous hospital stay gave him the green apple splatters. He'll be there through the weekend and will hopefully be discharged (again) sometime next week.

Where's Joey? At the ER!

So, Joey started puking Friday around lunch. I had just sat him down to eat, and was bringing the spoon to his mouth when he projectile vomited all over both of us. He continued to barf the rest of the day. On Saturday, he was still barfing, so I called his Pediatrician's office. They suggested I take him to the ER because he was in danger of becoming dehydrated.

So that means that yesterday Josh was at Children's and Joey was at Central DuPage. Awesome. Joey and I went back home from the ER after about 4 hours of observation and a little medication. I also have the flu and was on the verge of barfing the whole friggin time. Joey and I are both doing much better today. Thanks to Nonna and Grandpa for helping us so much!

Josh had a bunch of visitors on Saturday. Grandma and Auntie Pam came by as well as Uncle Mark and Auntie Miya. Josh's aunt & uncle got him 3 huge ballons! I'll post some pictures later.

Making Lemonade

Last night we made the move to the city and today was day one with everyone somewhat more together. We checked in to the Ronald McDonald House which is about 4 blocks from the hospital. We have it worked out now so that during the week mommy will watch Josh and Joey at the hospital while daddy works at the house. Once he is done he is able to come to the hospital to be with all of us and mommy can take a break and go back to shower and change. Daddy takes Joey home at night, gives him his last bottle of the day, and tucks him in before going back to work for a few more hours. Mommy is spending the nights at the hospital with Josh. It seems like the best way to make lemonade with the lemons life has handed us the past few weeks. Our family is at least together for the majority of the day.

Josh is on day one off of his antibiotics. His feedings were increased ever so slightly. We have at least another week or two here if all goes really well. If the "infection" comes back it may be a lot longer, but right now we are hoping to be home in a couple of weeks. Joey has been doing really well. He loves flirting with the nurses and gives smiles to everyone he sees. Josh is also smiling a lot more now that he is back to playing with his brother. Mommy was able to take them both down to infant play group today where they were able to play with a lot of different toys. We got a play mat for the room so once the roommate is discharged (sometime tomorrow afternoon) we can have some more room to sprawl out a bit in the room.
photo album
For those that are interested there are some more pictures of the boys and some of the house we are staying at too.

The Doctor is in

Yesterday we had to call in the expert: Joey came down to the hospital to see what is going on with Josh. It seems that the doctors still don't quite have a good handle on Josh and unfortunately our goal of coming home Friday seems to be shot. How long will Josh be held hostage here? We don't know. It may be weeks or months. He finishes his antibiotics on Wed. and we'll see if the infection comes back. If it does he may need to have the shunt revised; in any case he needs to stop spilling sodium and potassium out and stop holding on to the small amounts of fluid he is getting.

Joey has been his usual laid back self just going with the flow. He is so close to crawling and loves to stand and hold onto mommy and daddy's hands while trying to walk. We don't want to miss any of his milestones while we are caught up with Josh. Grandma and Nonna have been doing a great job watching him while dad works, but having the whole family spread over a couple of zip codes has been wearing on all of us. Later this week we may all be moving to the city for a while to be closer to Josh and try to restore some routine and home life.

Thank you Uncle Kevin and Uncle Andy for stopping by over the weekend to hang out with Josh. Uncle Chris and Auntie Christy also stopped by to see how the little guy was doing. Josh really enjoyed your company!

Photo album