We couldn't access John's site last night, livejournal seemed to be having issues, but all is well and back up today. We woke up with a bang as lightening hit pretty close to the house, but not close enough to damage anything here or nearby as there were no sirens and such to follow up with.
Yesterday was a pretty good day for John, if a bit long and hard because Dad wasn't home all day. John and I are very spoiled with dad being able to be home most days and up here with us, as opposed to down stairs in his study, for meals. When he's not home we miss him, but never more than at meal times when John holds out his little hands to hold hands for prayers and is looking at me like "hey, I've got this extra hand here and where's that daddy that holds it" so I hold both hands and on we go. He ate at every meal and I was so proud of him. It was our first time to try mac&cheese and John loved it. He has had a problem with dairy products in the past and we've not given him more than a bite or two of ice cream here and there so don't know how he is doing with it anymore, other than not having to deal with it. So I made that old box mac&cheese with no butter or milk and he ate a full serving of it, much of that speared on his own fork and gotten to his mouth with a little help now and again. He seems to have suffered no ill effects from it, hooray, it's always nice to have something more that we can put on the list of John likes this.
After a nap John was ready to 'go, go, go' in his own words. So I put him in his gait trainer and we went outside and walked up and down our street a little. John was having a great time and even moving his feet for a good bit of this, as opposed to sitting in the seat and just letting the toes of his shoes drag down the pavement. Thank goodness for those extra tough toes on the shoes. Anyway we got back to the house and I decided to try him in our big bike-wheeled stroller, he used to hate it but now loves it and was disappointed when I realized that the tires were too flat to take him for a walk and had to get him back out. Dad is going to get those tires blown up for us today. I asked him if he wanted back in the gait trainer and he was enthusiastic to say the least. He stood up for me to put him in and even spreads his little legs out now so that I can pull the seat through and fasten it. We went all the way around the block and he stayed in the whole way, moved his feet most of the time and enjoyed most of it. He obviously was done a couple driveways before our though because when we went back that's where we found his hearing aids laying in the road. So he went immediately to bed. Thou shalt not throw thine hearing aids in the road! He was an unhappy little boy for a bit, but dad came home and rescued him and then he was thrilled not only to be out of bed, but mostly because dad was here.
Our evening ended with a trip to town for labs and grocery shopping, but first off dinner. The people at the chinese restaurant that we like so much come by and talk to John a lot and they think he's cute because he loves the crab legs. Well Tuesday night there are no crab legs, but John still did a good job eating, chicken, potato log, even some rice, cantaloupe and of course his favorite fortune cookie. He sat in the high chair the whole time and with so few people in the restaurant on a Tuesday night he often had the undivided attention of the waitresses, they are his favorite, right next to nurses and pca's of course.
He also did very well all the way through Walmart, actually rode in the cart the entire time. That's not really a given when he is tired, which by that time of night he was starting to wear out, but he did very well. He was thrilled when we would give him stuff to hold and when we got to the check-out line and daddy held him up so that he could reach his own M&M's the squeals of delight drew the attention of a good part of the surrounding people. One cashier gave him a sticker, I could tell he was tired, because a sticker will usually elicit almost as much joy as a bag of M&M's but not last night, the end was coming.
At the lab he was tired enough he didn't talk to them much, but sat there like usual and held his hand out so that they could take his blood. He did smile for the lab lady a little, but by then he was tired and ready to go to bed which is exactly where he went when we got home. His lab numbers were a little better, the CO2 is up to 16.2 but that still isn't his normal so we are waiting for word from his GI nurse practitioner to see if there is something we need to be doing about it. The funny thing was he had normal platelet numbers, like 211, John never has normal platelet levels, actually if he breaks 100 it's a great day. So we are interested to see if this is a trend or just one of those weird things that happens once in a while. The lab lady even told me that she had to double check it because she was surprised that he would have that high of a number, and then took a good look at them and they were good looking platelets. So we'll see.
The Food Adventure Continues
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I started this blog when we started changing the way we eat. Finding out we
needed to be gluten free, actually for me wheat free, was a huge big deal.
Late...
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