Gardening Success!

Well okay nothing like real gardeners get, but compared to the one green bean and one sad little tomato that we managed to grow last year this has been a veritable bounty!





Not to mention just how much we have enjoyed it right up until I sprained my ankle of course, but that too shall pass and we will be right back out there enjoying it some more. The funniest part of all of this is John and the water hose. So far this summer he has watered one hearing aid to death, now he knows to take them out and give them to me before he gets the hose; he has watered his chair to the point where it had to dry out in the garage for a few days before either the seat or the controller was workable again and even now there are moments when the chair has flashbacks to it's recent drowning and starts beeping for no apparent reason, and of course he also watered his pants right off, that was just too funny when I came around the corner and he was happily watering himself with his pants on the ground, watered off and tossed to the side, ah who needs pants anyway.

Extra-Chair-icular Activities

John and his power chair have been inseparable since they met until lately. Now it seems that he is finding his old friend to be somewhat limiting and we see him looking for more and more reasons to get out of it.



He figured out how to get down into the footplates by himself and at least several times a day is found sitting there sorting through or just plain getting into something. He also figured out how to put the chair in the right place so that he could get out on the footplates and then use a doorframe or edge of the table to stand up. He has for quite some time enjoyed 'dancing' in his chair, going in circles, bopping his head and feet to the music, but of late he asks for help to get out and either wants to dance with someone, like his cousin or one of us, or will even hold onto the chair and dance beside it.





We have loved seeing this and in conversations with various of his doctors have discussed putting him in a manual chair so that he has more direct control over his own movements. He has been fitted for one and this discussion will ensue in earnest later this month, but we got to trial out the chair in July and it left us wondering some things. Even in it he wants out to walk, or stand or whatever and we both really wish that we could find him a smaller version of a walker with a seat in it. He has been fitted for a walker that would fit behind him, and we just wonder what of this new equipment will give him the most freedom. He has new braces, shoe inserts actually, that he is getting adjusted too now that he has shoes that they will fit into. The last time he had braces the difference between how well he could walk with them on and without them was quite remarkable. Already without the braces we have seen him stand independently for seconds at a time and even take a few independent steps, so we wonder if the braces may eventually negate the need for other equipment. Mostly though we just stand and watch in amazement!

Visitors and Dancing :)

Part of our summer has been getting to enjoy some family time. First my mom came to visit for a few days and we ended the visit with her by driving to St. Louis and getting to meet my cousins daughter for the first time and for them to meet John for the first time. We had a great time at the St. Louis Zoo with grandma and cousins. Then Mark's brother, Paul, and his oldest son, Isaac, stayed with us a few days during their motorcycle vacation. John loves having someone to play with and having a nice tall cousin to dance with was fun!

Growing All The Time

I wouldn't ordinarily put pictures of my bathroom on the internet, it's nothing special but the little boy standing in it who can now reach the sink to wash his hands all by himself is!





These pictures were actually taken over a month ago and since them he has shown us that he can use the light switch at the back of the counter and get out his own toothbrush and toothpaste and use the counter to walk from the bathroom door to the potty by himself. I was watching him stand up last night holding onto the window that you can't see in the picture but is next to the potty and realized that if his heels were up agains the wall and he was standing up nice and straight his head would be right at the sill of the window. Out of curiosity I got the tape measure and that sill is 43" from the floor, just amazing!

Gravity Defying Dog ... or

...Camera Genius of a Silly Boy?


Summer is flying by us. Days and weeks slip past without me even realizing they have come and gone. Partly this is due to Mark taking CPE (classes that will eventually allow him to be a hospital chaplain) in Kansas City and being gone from 6am to well after 6pm most days, and overnights and whole days the rest of the time along with keeping up with his two churches. The other part of this is just how easy it is to care for John now, meds in the morning, meds at night, hooked up to his formula pump for 8 hours or less at night and other than that just being a little boy, well a bigger little boy all the time. I sprained my ankle last week and am on the tail end of having to sit with it propped up with ice on it for parts of the day so thought that I would take this time to blog some and catch up on the pictures in the camera and the stories of a silly boy and these will post in the coming days. I've spent this week knitting a gift, knitting a sock that has more complicated cables than I've ever attempted before for my sweet husband who has a new found love for dress clothes and getting stuff ready for school to start in the fall, oh and taking my turn at Mario Kart, thanks mom for sending that!



I'm not sure why but I love this picture that John took of the bells at our back door, it definitely shows the wear that the bells have had on the wall and door and the wear that the bells have had from the boy and dog, but still I just love it. Mellon is bell trained, as in when she needs to go outside she goes and rings the bells, she is also knock-on-the-window trained because when she is outside enjoying herself chasing squirrels or digging to China and John wants her to come back in he goes and knocks on the back door and she comes and sits there and waits for him to let her in. They have become quite the pair over the summer and while not always together the times that they are seem to cause more giggles and smiles all the time and the chasing, oh how we love the chasing :)

Manual Chair Try Out

The picture isn't very clear, but even with the fuzz I think the excitement is clear! We met with the man who would write the paperwork for this chair for John a few days later and he told me that he has written paperwork for kids that he has wondered whether they could handle the equipment that was being ordered but not this time, John was thrilled and already wheeling it around turning corners and circles. John is looking forward to this smaller chair, it will fit into the bathroom so that he can start gaining more independence there and will also fit into friends houses that his power chair is just too gigantic for. He wants to learn to spin it fast and to play basketball in it. Often times now we see him sitting in the foot plates of his power chair, or asking to get out to dance and do other things, it's like the chair if becoming too confining and he is seeking more freedom, which of course is just amazing to watch!

He is going to be getting a walker too, it should look something like this...

Walker

and in a conversation with his physical therapist who had seen him before transplant I asked her if she thought he would walk faster if we started coming to therapy and she said 'no' he doesn't need therapy he just needs practice. We are so excited that he is doing so well and while I have tons of other pictures and stuff to tell about how he's doing mostly I'm just busy keeping up with him :)

Daddy's Glasses

I haven't been very good at keeping up with this lately, it's not because John is sick, actually it's quite the opposite, John is doing amazing and each day finds him doing more and more stuff, so really instead of blogging I've been keeping up with John. We still haven't gotten pictures of him walking, sorry Papa, I'm working on that, maybe while Paul and Isaac are here this afternoon we will be able to do that.