I think my postings might become shorter since we seem to enter the 'Groundhog' movie scene where each day has about the same schedule. We do have some changes that come thanks to visitors :)
Once again Connor started with Breakfast Club, followed by OT, ST, PT and ST again.
He was not quiet a happy boy this morning however since he got woken up to his big upset at 6:10 AM for a blood draw. He does expect to sleep in until 7 AM and like his Mom is not happy when he does not wake up on his own terms :)
A big highlight today was a visit from Auntie Sam and Uncle Ron who took part in his Physical Therapy today. It is pretty eye opening to watch first hand how much he can or can't move. Once again we went outside for a 'walk' but now we have to be concerned about him being exposed to sun light since this could cause his disease to flare up. So we made sure he wore long sleeves and a hat and Ron will bring sunblock with him tomorrow.
I did forget to mention that Matt stopped by yesterday for a couple of minutes and Connor had no shame to ask him to come back on the weekend with some Pizza ... shameless little boy :)
Ron and Alexander had a busy day today driving to Fairplay to register 'my' car and to get the disability sticker for it as well. They tried to give Ron the license plate with the disability sign on it but he declined on that one :)
Tomorrow someone is going to stop by and measure Connor so the hospital can put in an order for his wheelchair that he gets when we leave here.
That puts me to another part I have to mention that was not happy news for us but kind of expected. Connor's blood test results came back this afternoon and the numbers are not where the doctors would like to see them. His muscles are still inflamed and his red blood cells numbers are still low. There will be blood tests in the morning for additional testing and also Dr. Soep will talk to us in the morning about some alternatives to otter medications we might have to look at. Also his 10 mg of Prednisone he gets in between his Solumedrol will be replaced by 10 mg of Solumedrol as well. There is still concern that he is not absorbing the meds he is taking orally.
So once again to make a long story short ... I was told today that he is still to weak and the disease is not under control the way they were hoping and that a release date of March 12 does not seem likely at this point. Now this is a downer BUT we also made it clear from the get go that the priority is Connor and the last thing I think would be good for him is to go home only to have a relapse and have to go back in the hospital. I know I am not the patient and I don't like coming back after I have been home!
Tomorrow will be a busy day for us as a family because not only will Alexander be allowed to spend a couple hours upstairs with Connor, he will also get some time with the Child Life girls and learn about the procedures Connor had. We had a nice time on Monday and Wednesday when the four of us were together and as a bonus Auntie Sam and Uncle Ron will still be here plus Oma & Opa are arriving in Denver tomorrow and will stay with us for 8 weeks.
I do have to send out a HUGE THANK YOU to Shelly, Clare and their son Alexander for once again helping me out in a huge way! Love You!
And I also heard from my husband that my precious MOPS friend Vickie came by the house bearing food for us ... one of the greatest gifts of all, since I seem to forget about food and sure have not stood in front of a stove in a long time. So THANK YOU Vickie!!!
I will end on a funny note here. Connor complained about his Tail Bone hurting all day and when I looked at it it does look a bit swollen so I told the nurse and she said she will leave a note for his doctor tomorrow. Connor however said who he really needed to see was a 'Popo Bone Doctor' ... so I am hoping they will find one for him - ha ha
Hugs,
R A C A
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