Soccer Boy

A couple Saturday's ago John got to go meet the people who play soccer in Columbia, he was excited, as were we. His chair is not made for soccer, the big wheel makes it too slow and there is some concern that it will climb the ball and make the chair flip. For playing there is a chair he can borrow that is his size and left handed. But for this day they had us put him in a large chair and we didn't realize until he ran into the third or fourth thing that it was also right handed.



After figuring out that the bigger chair just was not going to work, we put John back in his own chair and things were much more fun for him. He played around with the ball and other people for the better part of two hours and the adults who will be playing on the team were impressed that he enjoyed it enough to keep playing with them and not wander off and do something else.



Next Sunday is his first real practice and soon Grandma is ordering him a soccer ball to practice at home and of course I will remember to take the camera.

Our Redeemer Lives with an Evil Eye

Last week was nuts, John's cold/allergies whatever let him sleep last night though and so this morning even with a bit of a snotty nose left he is even nuttier, if that was possible. It's all in a good way, well okay except feet do not belong on walls, pulling fronds off the palm at church isn't good, wiggling so much that you are practically rocking the pew during liturgy is funny but just not right and finally while were singing I Know That My Redeemer Lives I realized that I was singing it the whole time giving John the evil eye, as in stop it, don't make your chair go back and forth, quit pulling the fronds off, stop playing with the power cord, stop turning it on and off and please don't honk again. These are the kinds of problems that I love to have, they make my day, he has a face full of rotten and ornery and I just love it. Of course I still have the cold/allergies and feel like I just want to lay down and sleep, but of course since I want a house left later this afternoon I think I'll just sit here and type :)

Phew, What a Week!

Let's start with John is fine, okay he has some allergy/cold thing going on and is a bit miserable at the moment, but in the grand scheme of things a cold or allergies is just a little thing and the misery from it so fleeting as to not really matter.

Sunday our friends Angie and Larry Sipe and their 6 children arrived. It has been a good while since we last visited and this was to be a special week because Larry and Mark would be heading off to St. Louis on Monday morning to go to a week long training for Police Chaplains. Well they still headed out and went to the class, but of course not before we took John to the hospital Sunday night. It was par for the course, he has been hospitalized ever single time that his godparents have come to see him. Every. Single. Time.

John's blood pressure was too high, much too high, and so he spent Sunday night and most of Monday getting that straightened out and then just as it was time for us to leave we saw more blood in his ostomy bag. We had seen some anyway, and we all just thought it was a surface thing and weren't too freaked out about it. Well truthfully I was freaked out about it but everyone else was calm until the blood Monday afternoon and then they were freaked out too. The doctor took pictures of John's stoma and sent them to the GI doctor in Omaha, who agreed with the surgeon from Columbia who came by to see John that it was just a surface thing and there was no need to rush him to Omaha. John was discharged form the hospital in Columbia and we got to come home to a house full of friends :)

Tuesday morning it became apparent that he needed to be seen in clinic in Omaha on Thursday and by afternoon we hatched a plan to go invade Charity's house. So Wednesday after breakfast we loaded up, Angie and her six kids, John and I and went to Charity's and got to spend a nice evening visiting. Thursday I took John into Columbia, was so wild in clinic that the doctor took one look at him, told us to have his scope done and then take him home and good luck, lol, it was nice to see them get to see John at full tilt.

The scope was to see if the bleeding was indeed just a surface issue or if John was having a rejection or other bowel issue that would be much more serious. I saw enough blood in the PICU that even though I was pretty sure that this was a surface issue it was still a great relief when Dr. Fischer told me that his bowel looked perfect! He took biopsys and we will find out about those in a few days, but he's not expecting any issues to arise.

Angie and I got back last night, finally got kids fed, 1 medicated and all in bed by 10 and then basically fell over. The Sipes are headed off for the rest of their vacation today, Mark is on his way home and John and I are just hanging out, glad to be home and not scared or worried that something is wrong. Praise God for His Mercy, both in John's health, our salvation and the level of sanity that we retain.

Hungarian Bookshelves

We love books! Any one who knows us knows this, and we are always looking for better ways to store them. Our living room is basically bookshelves with a couch and tv, and John's room had a huge shelf too. The problem with lots of store bought shelves is that they bow and eventually fall apart, and so we were looking for a way to build them in without having all the fancy dancy book shelf stuff, as we want the books to be seen and the shelf to be just that a shelf. We found directions for a Hungarian Bookshelf on the internet and decided to test it in John's room as his shelves were made, but the span was too long and the boards were starting to bow with the old way that they were put up. So Mark constructed these, and if by fall, when he'll have more time, they still look this good he'll be making more for the living room, our room, and the study/sewing room.

Treats for Boy and Dog

I love our refrigerator, just love it, especially when there are doggie cookies in there and John is taking care of his dog :) As much as the dog absolutely loves getting cookies, the little boy loves giving them, not to mention how much fun it is to watch them do this.

Round and Round

I don't know what the sign for carousel is, I should look that up, but for now whenever we get to the part of Columbia that has the mall in it John is eagerly signing 'round and round' for a carousel ride and then of course 'game' for Game Stop.

Art and Medicine

We have often been told and talked about how medicine is as much art as it is science. We were privileged to spend part of one of John's hospitalized days enjoying a young artist who is determined to use her talents in art to help those who are sick and in need of medicine. We were thrilled to go see her art put on permanent display at the Children's Hospital and of course everyone was amazed to see John and how big and healthy looking he is.



This is John's Tiger, ok I know that actually it is someone in a suit being the mascot for the Children's Hospital, but really this is John's tiger and he was oh so very thrilled to be walked down to the quilt by his Tiger. Just as thrilling later for Mark and I after this picture and the next few were taken was that John turned around to the little boy that you see behind him in this picture and they decided to play together, and then spent several happy minutes chasing and running up and down this hallway. We have never seen John initiate playing with an unknown child before and it was just great to see. The two of them lit up every face in the place.



This is the artist who designed and carried out the quilt, including spending time with John and the other children and learning to quilt so that she could finish her project. When we walked up she was so excited to have pictures taken with John, whom she called the artist, and to point out his two drawings and the piece that I wrote for her. It was neat to see her so excited, the official photographer was taking pictures, but before it was done she made sure that her mom got one of her and John too.



Here is the quilt. Mark was concerned about the reflection but I only think that adds to it.



This is the picture that John drew in the hospital, I wish I knew what it was and I wish I understood what the DOX were for, but I do know that he enjoyed doing it and it brought a nice respite in a day that was otherwise pretty painful for him.



This is John's self-portait that he had made previous to going into the hospital, and when the artist saw this she was thrilled and determined that it be part of her final work.



Finally this is my piece, she asked that I write something about hope and so I did. We were happy to participate and happy to help her celebrate the day her art was displayed. And anyone who comes to visit and wants to see, John will be absolutely thrilled to take you down the hallway at his Tiger hospital and show you, as will we.