Change of Guards again today. Alexander and I made it to TCH just in time for our traditional McD's lunch and Connor was in great Spirits. We had a nice 20 minutes together as the four of us and then it was time for Connor to get ready for PT.
Today's schedule was the same as yesterday other then the added Solumedrol. This is scheduled on Mondays, Wednesday and Fridays, plus the Methratrexate on Fridays as well. It really is amazing how much he gets of medicine each day other then those two big ones. It really is worked out to a science at this point which pills are crushed and dissolved in OJ and put in a syringe, which one is taken with Chocolate Pudding, three that are chewable and then those that a liquid and go straight into his mouth via syringe but followed by a sip of OJ. Just think we have to 'teach' a new nurse almost daily on this regiment...
There is Blood Work scheduled for tomorrow and if the numbers keep dropping then Connor might go back to 2 pulses of Solumedrol a week, Tuesdays and Fridays. This would be nice so we hope those numbers look good!
As a treat Miss Kerrie told us we could all go in the garden outside and have Connor practice walking on a more uneven surface. This thought was pure heaven for all four of us because just getting outside and breathing fresh air and feeling the sun was just wonderful. Plus the more I though about it is was the first time outside for Connor in 35 days if you discount the move from the Ambulance to the Airplane when he came from Chicago.
Unfortunately we had a tiny upset when we reached the walking path because on his way out of the wheel chair his pant leg got caught on the chair and he fell on his knee's. This caused some tears and upset but after about 3 min he was walking again. Alexander on the other hand was running all around the park and hopefully burned of some more energy even thought we think his levels will never diminish.
Right now Connor is getting a lesson on how to switch out his Butterfly Needle for his Port. It is really neat how Child Life comes in the rooms and lets the kids practice the procedures they are getting on an Stuffed Animal. Connor did get his needle changed today so when asked why his frog is getting a new port needle and what the medicine will do for the frog he said it will help him to 'Hop' again. Well makes sense since he is hoping his medicine will make him walk again.
Ron and I are wondering if we truly are looking at a March 12 release date. As much as we want it and as much progress as Connor is making we still have a hard time imagining him walking out of here without the need of a wheel chair. After talking to Dr Soep this afternoon however it looks like they will order a wheelchair for us to take home so when we are faced with longer distances like going to a Park or to a Mall he can have the comfort of choosing to use it. As mentioned before, the distances he is walking right now are not terrible far but better obviously from one week ago.
Thanks to the Solumedrol today Connor also is ravenous again when it comes to food. He ate two Oreo Cookies and a bowl of Raviolis as a snack now and is already dreaming about a Cheese Burger for Dinner. He is also doing his best to drink the Protein Strawberry Milkshake he got from his Nutritionist. He does not like it but after my speech on what is good for him and him wanting to go home he is drinking sips of it - poor kid ...
Well he had his Cheese Burger and a Pudding and right now is in heaven because he found a copy of Star Wars Lego for his XBox at the Volunteer Office when we returned to movies.
So we are set for tomorrow. And then on Friday Oma and Opa will be here and neither of our boys has stopped smiling about those news.
Hugs,
R A C A
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