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.

Hole in the Wall

The upper hole was punched in the wall by the door knob long before John was even born. It was in a seldom used room and then we were so busy keeping up with John that repairing it just never got to the top of the to-do list. Once John had his power chair and a little energy he loved it and started shoving stuff in it, planning it's enlargement and then attempting to enlarge it. Well today was the last straw when he came out and told me that he had put his iPod in the hole. Well the bottom hole was made by dad rescuing the iPod which was merrily singing away inside the wall blissfully unaware of it's fate. Well we found way way more than just the iPod, which by the way is now going to live safely on the counter for a few days until both the hole has been repaired and the boy gets a little sense, well we hope he does anyway :)

Bubble Dog

John loves bubbles, he has always loved them and he can sign it and make the bu bu bu sound all with a huge grin and eyes alight with glee. Unfortunately John can't blow hard enough or with enough control bubbles on his own, so he always needs some help and today his helper had a great time and then of course the dog had fun too!

Return of Old Abilities

It took John quite some time to recoup this skill, but we are oh so very thankful that it is back, and so is he. Independence is so much fun!

A John's Eye View

John got a hold of my camera a few days ago and of the 20 something pic he took, I thought these showed a good look at the world from his point of view. Of course this was all done in about 5 minutes at breakfast, lol, we do go in other rooms of the house.

Waiting For Dad

Sometimes when waiting for Mark to unload the chair little boys just have to find something to do to pass the time :)

A Different Kind of ER Trip

Let me start this with John is fine. Now I'll tell you what happened and what is and will be happening.

John has worn a Clonidine patch since he was still intubated and in the PICU, it is medicine for his blood pressure and also an anti-anxiety medication, a mild sedative type thing. At that point he needed it, he was freaking out about every light change, noise, or new person that might come in his room or talk too close to his open door. Even at our last appointment we were thinking that there really was no need to change this now. Sometime last week the patch fell off. We have no idea when, what we do know is that by Thursday and Friday we had an almost different kid, so much more energy, ability with everything and wow, just so on all the time. No need for a nap, run, run, run, he was learning things faster, sitting up straighter and everything was way so very very cool, instead of like all the lights were on in there it was like the sun itself was shining in there. Saturday morning when we went to change his patch, this is the normal day, it was gone, so I took his blood pressure, it was a little high but nothing to run to the ER about and put on his new patch. Through the day on Saturday we still had this amazing way more John, whizzing quickly through our house. He slept through the night Saturday night and on Sunday I had to go wake him up, this is strange, and he was so very groggy.

We walked to church and I thought he was leaning and keeping his eyes mostly closed against the sun that was shining in our face, but during church he just sat there and finally asked if I would please just hold him. At the end he wasn't really interested in going and shaking people's hands and even though his friend wasn't there for Sunday School and we did it anyway there was no sparkle, no enthusiasm, no real interest other than just to be there. Mark was gone by this time, he had already noticed that John was down too, but had to go to the country church and when we finished Sunday School John and I walked home. He could barely keep up with me, didn't run over sticks, had no pleasure in spinning circles in the loose dirt and didn't even notice that there was water to run through, just plodded along home, where he just sat and watched tv and didn't even care to choose the show. By the time Mark got home I was beyond just a little worried. We figured it was the patch, nothing else was wrong, no indication that he was sick at all, just this lethargic uninterested noodle of a boy sitting idly in his chair like nothing interested him at all. We put him down for a nap and called Omaha. They said take him in if we thought it was necessary and they would readdress drugs on Monday.

We loaded John up for the ER, he sat all the way to town, never tried to roll down the window, never changed the movie or flipped through it, never asked for a drink, or kicked his feet into the back of the driver's seat, just sat there. When we got to the hospital he told us we were at the Tiger hospital and plodded in. We were there from about 3p to well after 9 that night and finally about 8 John smiled for the first time that day. Everything checked out, labs were fine, blood pressure was fine, everything was fine and it was definitely the meds. We knew this going in, but we had to make sure and were relieved and determined that John be taken off this medication.

Monday came and the docs came up with a weaning plan. So John is now on a half dose this week, he is acting way better than Sunday and a little better than his normal with the full dose but no where near the sparkly whizzing speed demon that he was on Thursday and Friday. If his blood pressure stays steady through the week he will go to 1/2 of this dose next week and if he remains stable will come off this drug completely at the end of that week. If he needs blood pressure medication they will move him to an oral med that doesn't have the sedative side effect to it. John understands this and is glad that the medication is going away, Mark and I are excited, we can't wait, we also know that full time John with that new energy level is going to be a handful and will need many more things to direct his attention and keep him busy but who cares, just to see him so very very alive, almost on fire, is so amazing, it's so very different than anything we have seen of him in his whole life and yet it's something that we've always seen a spark of here and there, we are eagerly awaiting the return of the full glow!

The Trash Man Cometh

John is being raised by really weird parents, Santa Claus comes to take pictures with him at the hospital and he doesn't really care so much, even when he feels good enough to participate, other kids await the Easter Bunny and John doesn't really care, Halloween comes and goes without costumes or candy or concern, but oh boy when the trash man comes then we care :)

Sink Fixing Guys

The sprayer on my sink broke a few days ago and today Mark had time to fix it, he also had plenty of help...





...and of course after the two guys were finished fixing the sink they decided to tackle the dog :)

Shut-Up Dog

The dog was barking and John was bound and determined that she shut-up now, silly dog, of course this is a near nightly show, but still she barks and he knocks, and we giggle.

New Cub Scout Shirt

John is beyond excited about Cub Scouts. He is practicing his salute, which is rather difficult for him as he is so very very left handed to start with and his right hand is still very weak, but he went tearing into our room where there is a cross with a flag on it and was showing us that he was saluting. Of course today he is driving around with his Tiger Cub hat on sideways like Will Smith in Prince of BelAir and Mark is teasing him about earning the Untrainable badge, John doesn't care, he's too excited.

Sometimes You Just Don't Get What You Expect...

...and other times you get more. In our life right now we are seeing this in two distinctly different things that are working out so very well together.

We didn't expect that as John got better and stronger and well just more John every day that our calendars would get more and more full, it's not doctors appointments now, it's Cub Scout meetings and hikes and such, Sunday School that now needs to be done more than ever, power wheel chair soccer coming up fast and while we thought we would put off school until the fall, and we will most of it, but some little things have got to be added in just to give the boy some more stuff to do. This is fun, and crazy and wild and we like it :)

The other thing we didn't expect was that we would change diets and make a major discovery that would start to make everything better and more doable. Mark and I have both been just feeling run down and achy and tired since coming home from the hospital and so after listening to our friends talk about diet stuff and reading some more ourselves we decided to give up all grains, legumes and sugar for 30 days to see if we would start feeling better. We are. What we didn't expect was what it would do for Mark. His stomach hurts less and less by the day and at times not at all. From everything we've read now it looks like Mark probably is allergic or intolerant of wheat/gluten stuff and the stomach/gut ache he's had his entire life is from that. You can hear how much better he feels in his voice and see it in all the things that get done around here and in just how much happier he is. So we are learning to make pancakes out of almond flour, eat lots of veggies even for breakfast and do all kinds of other cooking we would have never thought of even 2 weeks ago.

In both of these our lives have changed a lot, and all for the better even if there is adjusting to do!

A Good Life

John saw Mark head out to work on the Jeep, tossed his Wii remote aside and headed out to be with dad. While Mark is gone John collects his stuff, when Mark returned last night John was wearing both Mark's pectoral cross and his MP3 player. When I was a girl and thought of what kind of man that I wanted to marry it was always thoughts of someone who had hands to do strong things, like work on cars and fix things, and hands that were gentle to hold and love a child. Dreams do come true, and this is a good life, a very good life indeed.