What a busy day for all of us today!
Today Connor had a very full day with three therapy sessions schedules, PT, OT and Speech. I am forgetting if I mentioned his speech but it deteriorated about one week into our stay in Chicago and we are all guessing it is due to his muscles in his mouth and throat being affected as well.
Ron told me he seemed to be doing well for two of his sessions but was tired for the third. The Therapist are now discussing if the schedule is to much for him for now. It is crucial he does get therapy but there is only so much his body can handle right now.. It was also decided to get him on a better schedule for his pain meds and instead of Tylenol they tried giving him Motrin today and this seemed to help a bit.
His blood test levels also came back from the blood work they did this morning and two of his levels are still high and actually higher then they were in Chicago. Dr. Soep has been in communications with Dr. Pachman and as of now we moved his infusions of Solumedrol from two pulses a week to three (Monday, Wednesday and Friday).
Connor and Ron also got a visit from the surgical team about the possibility to get a Port put into Connor's chest in the near future. Connor who likes his PICC Line better then the IV was according to Ron very excited because he also does not like the PICC Line to much since it was a bother to him when he got a shower last night. So is request was to get a Banana flavored mask again when he is going into surgery ... so simple when you are a kid!
And to bring some smiles and attention to Connor he has been holding court to several visitors since arriving in our home State. He had Lady Di and King Richard there on Saturday, then Richard came back with his son Matt who our boys adore to no end, and today the big highlight was Auntie Sam and Uncle Ron. They came all the way from Colorado City, to spend two days in Denver to be with Connor.
I look forward to meeting up with them in the morning :)
Which brings us to Alexander and my day. It was super busy but also fun to have this time together. Alexander has been an Angel for most of the time and something I had worried about was his lack of appetite since all this started has been resolved for at least today. He was eating quiet a bit and was just asking me about dinner :)
The two of us ran some errands this morning and one important one was a haircut for sweet Alexander. He is back to looking like my boys used to look like and the true adventure will start when I try to cut Connor's hair in the hospital tomorrow. I talked to the stylist who did Alexanders hair and she showed me what I need to do and even offered to come to the hospital until she heard he was in Denver and not in the Springs. So now I have a haircutting set and I am ready to go - ha ha
Miss Ann came over today as well to get the run through about taking care of our dogs for the next 4 days which is a big relief on my part. I told her if things go wrong I am 'only' 2 1/2 hours of driving time from home.
So and the big one for me today was calling both our insurance companies, spending time with Verizon since my little Droid was acting up today and this is not something I need right now.
We used to have Blue Cross and Shields for 2009 as our Heath care provider, and we switched back to United Health care for 2010. I am only mentioning this so you understand why I mentioned two insurance companies. Blue Cross is handling all the claims we had from Decembers Doctor visits and testing, while United now is hit by our claims from January on. I have to say it was a good experience talking to both and they were very helpful and informative. Both Representatives I talked to were kind and compassionate which was nice. Now I am not sure how it will all play out in the end but that is for another day :)
So and now Alexander and I are packed up for our drive to Denver at 7:30 AM. Ron & Alexander will take a Noon flight to Seattle and then on to Anchorage and I will take over my post on Connor's side.
Hope you all had a nice weekend! We for one had a productive one.
Hugs,
R A C A
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