Saturday, June 13, 2009

Those Promised Pictures


Ah pretend eating, John loves, loves, loves kitchen stuff. When we got to the playroom he squealed with delight over the little kitchen. He loves to shove stuff, I mean cook in the little microwave, cram stuff in the oven, um bake, and have us taste everything he makes. When the playroom closed we got to take a big bucket of kitchen stuff with us and John sped to his room, and sat happily on his bed cooking, serving and pretend eating for quite some time. I keep thinking, ah this is so cute, we should buy him some kitchen stuff for at home, and then he signs all done and the bucket of kitchen stuff sits untouched in the room for the rest of the time we are at the hospital, nope it's a treat somewhere else, it'd just be another ignored toy at home.


Throughout John's time at the hospital we have collected a bunch of favorite nurses and doctors, before we left yesterday we were able to get a picture of John with one of them, Kristin is great and while we don't relish the thought of being inpatient or John being sick, it's always nice to get to see her.

During this whole round of in and out of the hospital, here, there and everywhere, John has, as usual, taken a few medical steps backwards, his feeds are way down, he has a central line and is on tpn and lipids again, and of course IV Cipro because what would a central line be without a central line infection. These are always hard to see and make us sad. While we will have to almost start over with the potty training thing, apraxic kids are notoriously hard to train anyway, we've seen him do many other things that make us smile, cheer our hearts, and leave us cheering for him. John has transitioned himself from a sippy cup to an open cup, except for when he wants to drink while laying in bed and then reverts to sippy cup or straw. He has gone from being a pretty good power chair driver to a down right phenomenal power chair driver, especially when you remember that he is 5 1/2 and is driving a chair with all the weight and power of an adult chair and with nearly all of the speed and acceleration. John's chair can go as fast as an adult can jog, it accelerates from stop to full-speed in the length of a bed, guess how we know that. John has read a 'stop' sign, last night read 'bear' every time it appeared in his 'Bear Snores on Book' and has cleaned up many of his signs and learned many new ones. He is eating again, partly due to g-tube feeds being so low, but he is feeding himself better all the time. He is so much more little boy with each passing day and this round of being sick seems to have not slowed that progression at all. He is even getting to be a little more social, and is learning to show off, which is hilarious. His favorite thing to show off is that he can drive his chair backwards down the hallways while waving and smiling at pretty volunteers. He is more able to answer direct questions from us, and tells us more about what he sees. His chair lets him reach so many more buttons and so has figured out how to operate every handicapped accessible anything and the elevators including knowing to push 'up' or 'dn'. He can get his own ice from the ice machines and fill his own cup from the water fountain without drowning himself or passerby. Even things he hasn't done in a long time, like lay still for central line dressing changes, he picked right back up. I am constantly amazed by this kid. I would say that other than the independence that he has gained with his chair my favorite part of the power chair is that now others see the smart along with the cute.

While in Omaha we got a chance to go to the zoo with friends. This is the first time that John had his chair and so had the independence to go and see what he wanted to see. He has always loved the aquarium, but never really had the energy for much beyond it, this time he got to enjoy much more of the zoo and much more of his friends there. He loved the plastic chains that hang at the front of the bird exhibit and had the best time running through them and gathering them up and playing with them. I asked him later what was his favorite part of the zoo, part of apraxia is an almost perpetual stage fright making it very difficult for John to get to tell what he likes and such. It took him a while, but eventually with a huge grin on his face he told me that his favorite part was going fast with his friends, and watching them as they ran along and giggled and carried on with them I'm guessing it was a part of the zoo they enjoyed too. Charity posted picks of the zoo trip to her Facebook page, if I did the link right you should be able to see them. Zoo trip with friends.

I will continue to update the blog, but for daily, sometimes more than daily updates on both John and life around here I use Facebook more. If you want to find us on Facebook we're there: Ageena Hass and Mark Hass, and we'll always be glad to visit, here, there, or even in person when the chance arises.


Barb the Evil Genius said...

John's progress is great, even if he has some regression.

Gina said...

It always leaves us impressed and amazed!