According to Connor's Doctors he might be fitted with some special braces for his feet tonight to see if we can get his ankles bend to the 'normal' position. He is also scheduled for an x-ray of his stomach today to see about the pain he is complaining about on his right side.
No pocking today as far as blood work. that will be done tomorrow morning. How funny that the rotation Ron and I picked always has Ron 'on-duty' when Connor gets blood taken. Trust me when I tell you I am not complaining :)
Today overall Connor had a rough day. He started out well but got tired throughout the day and was pretty moody and started to cry easily towards the end. He did get some braces and he was very upset about this. His feet are so bend and his ankles are so stiff that it is almost painful to watch when those braces come on. At first we were told he should wear them all night. Then when Connor was fighting the fact of even putting them on we were told we can go 2 hours on and 2 hours off. So then the braces were put on and he cried so miserably that it was then said we should just do one foot at a time for 10 min each. Talk about negotiating down.
Well, the story does not end here... Ron was able to put one on one at the time for about 15 min each and I just got a page from Ron that he is putting Connor to bed right now and that Connor told him he can wake him up tonight sometimes to put the braces on :)
Connor also had the x-ray of his tummy - stomach taken today and we are curious to see what the result of this will be.
He also got weight again and I think I mentioned his weight on here before but can't remember right now. Beginning of December Connor weight about 43 lb. He lost over 2 lb during this last month and was just under 41 lb. Well he was weight again today and I can tell you he is eating like crazy thanks to the steroids and he weight in at over 43 lb again. However, it looks like all his weight is in his stomach! It is so round and his belly button is just a little line so we are all calling it (no worries... him included...) the Buddha Belly. He was first in asking me where his round belly button has gone :)
Connor really did have a hard day today and was not a happy camper. He was however happy when the Volunteers made their rounds earlier today and he got another Pillow Cover with little Robots on it. He also got very attached to his little 'Tiger" Hospital outfit. So to put a finish to his day he ended up throwing up over his new pillow cover and on his Tiger shirt. The nurses were very sweet of cleaning everything up but of course could not locate another Tiger Shirt and the pillow case will need to get washed. It does not sound like much but something like this can make or break it for Connor who is very emotional right now.
So and as of yesterday Alexander and I, and even Ron today, decided to walk the stairs in the hospital and only use the elevator when Connor and his wheel chair is with us. Going down obviously is easy but my goodness going up has my leg muscles complaining with no end. I am so grateful we do not live on the 9th floor anymore... considering all the food is in the basement of the hospital :)
And now to our Hospital Celebrity 'Alexander'. So far the Hospital put on 4 TV shows since we have been here and our youngest 'introvert' no EXTROVERT has been on the screen in each one of them. Today they had a jam session with Jim and Alexander got up and sang 'You are my Sunshine' for Connor who was in his room getting his medicine via IV. Connor participated by calling in to the show by phone and singing a Star Wars Song. Don't ask how it goes again but it sounded very cute. The other show asked the kids to make up a poem and act it out and the only kids who did was of course our little Alexander. He made a little Poem about the middle of February and snow, snow angels and ice.
For lunch Alexander took me to Diary Queen a couple of blocks from the hospital. It was nice getting out into the fresh air and being able to walk for a bit.
Tonight we all had Domino's Pizza and while Alexander and I headed over to the Kohl's House Connor and Ron went to the play room for about 20 min to watch the clowns that came tonight and I am hoping when I finish this Connor will be in bed now and asleep. It is 8:10 PM and I know I am ready for bed.....
Hugs,
R A C A
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