Tuesday, August 30, 2011

Daddy's Graduation

John was so thrilled and excited, both the night before we went to see Mark's graduation from his first unit of CPE (Clinical Pastoral Education) and during the ride over he kept signing 'John daddy's school', 'John daddy's friends' 'John chair fast daddy's school'.

We are so proud of him, I am so proud of him and the work he has done and that he is going back for another unit of what has to be the hardest educational experience I have ever seen just makes us more so. I was going to try to describe what the process of CPE is like from my admittedly outsider perspective but find that the words that I have just pale in comparison to what I have watched. The only thing I can say is that this is a course with no test, no term papers and no lectures, and more work, more pain and agony and more rewards than any classroom experience I have seen. I love you Mark, I'm so proud of you and God bless your efforts in this unit!

Monday, August 29, 2011

First Day of First Grade

Our first day was full of fun stuff, taking down the sunflowers, watering plants, picking melons, counting black walnuts that John scooted around in his footplates to pick up from the park, writing letters in the dirt under the swings, reading Wind in the Willows, making leaf drawings, and looking at bugs and butterflies. We'll get to the actual books pretty soon, and we are both looking forward to it.

Saturday, August 27, 2011

And We Cheered and Cheered

Every child has that thing that they love to do and have been working at for a long time and then they finally find a way to make significant improvement, for John it is Mario Kart, he loves it, we love it, and yesterday he won his very first game, and then placed 4th in the series of 4 tracks, we cheered, oh how we cheered!

Friday, August 26, 2011

Joy Abounds

This week we had two sets of appointments. The first to determine what equipment John needed to help forward his independence and it was decided that while we thought a manual wheelchair would be good a month or so ago that John had progressed enough that now what he needed was a walker with a seat so he could sit and rest when he needs too. We are thrilled, John is thrilled, and he even likes the idea of moving his power chair outside and using his walker inside. It's just amazing to us!

These pics are from Wednesday, what a joy to see him enjoying an ice cream cone and entertaining himself while waiting for food that he then eagerly dug into when it arrived.

Early Thursday morning we left for Omaha to see the transplant team. The trip up was fun and enjoyable even though our normal route is still flooded. We were a bit late but just in time to get to see our favorite GI doc who was just being sociable and hanging out in clinic. John is big and strong enough that I held one of his hands and we walked into clinic together while Mark was parking and then he got to hold one of Dr. Fischer's hands and walk with him and later walked out of clinic with Dr. Mercer, the surgeon who did his transplant and who cared for him both before and after. We got to visit with April and say hi to several other people and the smiles were irrepressible on every face that knew John.

He has now grown enough and is eating enough that they reduced his formula that he receives and put him on regular Flinstones Complete vitamins, this is just exciting to us. He goes back to Omaha sometime around the 1 year anniversary of his transplant and then they don't expect to see him except for annual, yes annual, checkups, it's amazing, beyond amazing.

We got to spend Thursday evening and night with our friends who have come so far with us, been so close to us and that we care so deeply for that we often forget they are 'just friends' and call them family. John was thrilled to get to play with the kids and we loved visiting and the little one even snuggled up with both of us and then this morning before we left made sure that John's hair was properly poofed for the road.

I was surprised on the way home how easy the tears flowed. It is so emotional to go to Omaha, so many times we made that trip just hoping for more news and another thing to do to keep John alive a little longer, and then came transplant and all the fear and compassion and mercy and visible miracles and now we come home with this amazing boy, this boy who is so close to the all important one year mark, with the boy who for the first time in his life we have real hope that we will see him as a teen and as an adult, the tears of joy mix with the tears for the family of the donor and in all of it is our hope in Christ and feelings that are just too big to keep inside.

To finish the day we stopped to get apples and peaches from the local orchard and then of course to retrieve our 'friend dog' from the vets office where she was being boarded. John was so happy to see her and we are so happy to be here, home, together with all these days of promise ahead.

Thursday, August 25, 2011

A Reader

Mark and I have one academic goal for John that he be literate, not just able to read the occasional box in the store, or newspaper column, but that he can read real books, classic literature, science journals or whatever his interest is and understand it and use the knowledge gleaned from it and enjoy the journey through the world that good books give us. He can read a bit now, a few words here and there and occasionally he surprises us and knows things that could only be gleaned from reading, but he certainly isn't reading to the level of the book in his hands yet, but he loves books, he pages through them, pretends to read them and brings them to us to have pages read and even has the patience to sit through longer books being read to him. This brings us great joy even when we would rather him not put his feet on the table.

Wednesday, August 24, 2011

Sink Boy

The most amazing part of these pictures, John's standing on the floor!

Tuesday, August 23, 2011

We All Scream...

...for frozen yogurt, ok so it doesn't rhyme, but it doesn't make John's tummy have troubles like ice cream does either. It took us a while to figure this trick out, but if we make yogurt from good milk, add some coconut milk, sugar and flavorings and turn it into frozen yogurt, John and obviously Mellon get to enjoy it without issues :)

Monday, August 22, 2011

Silly Pictures for Papa

We were having fun while talking to Papa, Mark's dad, yesterday and took these pictures. I wish I could have gotten a picture of John's new trick, but I haven't quite figured out how to do that yet.

Photo on 2011-08-21 at 18.23

Photo on 2011-08-21 at 18.24

Photo on 2011-08-21 at 18.22

Photo on 2011-08-21 at 18.26 #2

Photo on 2011-08-21 at 18.21

We love you Papa!

Wednesday, August 17, 2011

Tuesday, August 16, 2011

Dog Wash

Not a day goes by that John and usually John and Mellon don't give us a good fit of giggles. John has always loved ice cream, it has never really loved him, but we did figure out that homemade frozen yogurt with no just plain milk in it works and he can enjoy the ice cream without the gassy consequences. Eating is still a new thing though and learning to balance quickly melting ice cream on a spoon when your motor control is not your strongest feature is a trick, but one which both John and then Mellon enjoyed.

Monday, August 15, 2011

What You Doing Butterfly?

At one point this summer, early on, I was toying with the idea of us doing school, lots and lots of school to try to catch John up with all that he missed last year, well that has passed thankfully to the wayside and while we have done some school, mostly a bunch of reading and counting, we really enjoyed the butterflies.

We kept them in John's room and fed them orange slices everyday and since letting them go he has already asked a few times when we are going to get some more, so at some point I need to either catch or mail off for a few more caterpillars, it was loads of fun. The expression in the last picture just kills me, he reminds me so much of the little brother on Different Strokes sometimes in his expressions and this was one of those moments.

Sunday, August 14, 2011

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.

Saturday, August 13, 2011

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!

Friday, August 12, 2011

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!

Thursday, August 11, 2011

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!

Wednesday, August 10, 2011

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 :)