Technically out of PICU

John is technically not required to be in the PICU anymore, but since there is no open room upstairs for him he is still in there. He is however not on the monitors anymore and has been able to stay catheter free. He took a ride in his chair today, we had all forgotten just how much it took him to learn that and I think it was a big shock to all three of us just how much this surgery would take out of him. He was also a little overdue for pain meds, so it was a slow half hour in his chair but we did see improvement in him being able to watch where he was going throughout the time. Mark and I have figured that we will skip PT and OT here and just work on getting him back to zooming that chair all over the place, along with letting him do lots of coloring and stickers and such. They are giving him little trials with his ng tube not hooked up to suction and we are in hopes that he won't have to keep it much longer. It is very irritating to have the tube running down his throat and something that he is not used to and so last night he barely slept, he was finally out of the morphine long enough to make him really aware of just how irritating that tube was. Being the smart little boy that he is, he knew better than to yank it out because they would just put it back in, but them spent the rest of the night trying to gag it up, needless to say a very restless night.

His water is very limited in trying to get the tube out so all the distractions are a great help. Mail came again today, stickers and coloring pages and cards and he loved it. Thank you for all the contact that we have received, it really makes a difference not only in John's day but in ours to know that we are not doing this alone. And Rachel, tell your boys that when I left upstairs to come type this that John and his dad were playing with those planes again, they are a huge hit and the first thing that he asks for when he wakes up. When he's feeling a little better I'll get a good pic of him with them for your boys to see. They have certainly shared many smiles with John.

We continue to pray, to be hopeful of a sooner rather than later recovery, and enjoy our days together no matter where they are. Mark is headed home tomorrow, but we will look forward to seeing him again on Sunday and John and I will fill those days with as much silliness as we can figure out how to do.

Poop!

Poop means that John's bowel is awake and moving, tonight we had poop, we cheered! It also means that John will likely get rid of his ng tube soon, may really get out of the picu tomorrow and is getting ever closer to getting back into his chair for some zooming! Today has been long but good and has had a few bright spots in it aside from the aforementioned poop. John received mail, a package from Rachel, a looper friend, that contained glider planes, we have all had a great time with them and they really have brought a lot of smiles to a little boy, his parents and even those who have occasionally needed to duck when planes go flyingbacross the hall. Thank you Rachel! Our other bright spit came when Charity brought the kids up to visit. John wasn't strong enough to visit for long but what a big difference a visit with friends make here. John will have a great time with the toys they brought and we will all be looking forward to the next visit. Thank you Charity! The phone calls, texts, emails, fb comments and comments here make a big difference, thank you for those and for your prayers!

John is out of surgery

And we are waiting to get to go be with him. Dr. Mercer told us that he did quite well, that his bowel had dilated quite a bit again and had also grown in length. He was able to STEP some of it and just narrow some of it too. He says that John now has 150cm of much more uniform small bowel (for reference that is the same amt that a healthy newborn would have). He did express concern about John's colon, that it is somewhat dilated and not as reactive as it should be. He tells us that in a few years John might need some work done on his colon but for now it will just need to be watched carefully to make sure that he doesn't get too much bacteria growing in there. We are of course thanking God for guiding Dr Mercer's hand and for all the staff and care that John has received. At the same time we once more rejoice in the unexpected blessings provided, this time in the form of a little 6yo boy who needed someone to play with in the waiting room, he's been a great distraction for a very worried daddy. Thank you all for your prayers and concerns and friendship, this path in life is so much more bearable because we do not walk it alone.

On our way...

...we will be leaving a little later today to head up to Nebraska to spend some time with friends before surgery on Friday. John is excited about seeing friends and not nearly so worried about surgery as his mother and father are. We're excited about seeing friends too!

So here's John's address in hospital, the mail is sorted by hospital census so no matter what part of the place he is in the mail can find him.

John Hass
University of Nebraska Medical Center
PO Box 6159
Omaha NE 68106-0159

John loves mail, and if you decide to send him something don't go crazy and spend lots of money on cards, he is much more fascinated with bandaids, rubber bands, paper airplanes, pages to color, or anything that either is or can be made into a ball to throw, you know boy stuff!

Thanks for your prayers. As always we are praying that God's will be done and that He gives us the peace and patience to travel through each of these days, making sure that John has the best day possible for each of them and that we are aware of those around us so that we can comfort them in their need too. We see miracles every day, we just pray that our eyes are open to them!

Look No Hands!

John started this last night, standing up and then leaning back away from us and standing for a second unsupported, tonight he was able to do it long enough for me to get a picture, and nope Mark's right hand isn't touching John at all. We've noticed that he's standing on the footplates of his chair and doing two handed things more often too. He's getting braver and stronger!



Enjoying every moment, tonight getting ready for bed John got a piggy ride and then this...

Surgery Date and 4th of July pics

John will be having a STEP procedure done on July 24th at University of Nebraska in Omaha. This is his second time to have this surgery and while recovery is not fun it is his best chance to have a couple good years of no central lines and growing time. Maybe even longer! It is our hope and prayer that God would guide the surgeons and all who care for John, that God would provide healing in John's body according to His will, and that He would provide us with opportunities to reach out to others with the hope of Christ while we are going through this recovery process. John could be the official ambassador of smiles, and we hope that it won't take long for him to be up and running the hospital hallways spreading smiles this way and that.

I will be updating the blog as I can, honestly I do update facebook more often, you can find me there - Ageena Hass - and you can find Mark there as well - Mark Hass. I will text updates to those that I have numbers to text, and we'll call as often as we can. As soon as I have one I will put an address here, there, and everywhere as John's all time favorite of anything is mail, any kind of mail, honestly the kid would love an old envelope with a bandaid in it!

Here's are the pictures, phew, you knew I'd shut up and get there. The first is of John dancing in his chair with his new IPod touch, thanks Grandma, and the rest are of 4th of July, yep, the guys are giving each other manicures and pedicures and John LOVES fireworks! The big one that he is holding has monkeys on it and on the morning of the 4th all he wanted to know was 'monkey fire today?'. John had a great time watching our fireworks and the others around us,I think this kid was made for 4th of July!