Groundhog Day every four weeks :) Today Connor is getting his 6th IVIG Infusion and we are truly getting the hang of it all. Once again we started out with the 1 hour Solumedrol Drip, followed by Tylenol and Benadryl, then the 4 hours of IVIG and we will ending it with his Methrotrexate Infusion. It is still a strange feeling to watch that small bag of IVIG dripping into Connor and knowing that this is the equivalence to $10,000.00!!! Just think at this point he has $60,000.00 worth of IVIG in him ... I even attached a photo today of the IVIG bag so you see what this much money looks like in liquid form :)
We did enjoy this day again in the company of the Stenzel Family and also Connor's favorite Infusion Nurse Amy!!!! Truly we just love Amy and she has the touch of an Angel when working with any child and we are so so so grateful that she is Connor's main Nurse when he comes to TCH.
It is a comfort to have people around you that you feel comfortable with and it is in a sense a small community we have here. Today there is a Bone Marrow Transfusion on this floor as well so everyone has to keep their door closed. For some strange reason the boys and I are in the only room that has no alarm attached so we can keep our door open and have an 'open door policy' but Emma and her parents are in another room and their door needs to be closed. Not that this keeps us from visiting however :)
Connor also met a little boy today that was about the same age and him and he and his Mom are contemplating a Medi Port. So it was wonderful to watch Connor show this boy his port and tell him what he thinks about it. I gave my Mom perspective but I think Connor has the insider story and it looks like this boy will be scheduled for surgery soon ....
We had a wonderful talk with Dr. Soep as well and Connor's Blood Levels keep looking great so we are now going to make another big change and move to every THREE week of Solumedrol Infusions!!!! This is huge and we are so excited! Connor also got a good report from Miss Carrie Kerry today and she thought the Water and Horseback Riding Therapy would be great for Connor and after I mentioned it to Dr. Soep she took the paper work for the approval :) Now all we need to do is also clear it with Dr. Pachman and it will be a go :) I truly hope it will pass because I can see Connor having a lot of fun with this kind of Therapy and he deserves a break after all :)
Well, we are home now and looking forward to some Papa Murphy's Pizza tonight :) Both my dumplings fell asleep on the drive home and I am tired enough to head to bed around the same time we get Connor and Alexander asleep :) My lovely husband put up my Swinging Chair today so tomorrow I am planning on spending some time in it with a drink in one hand and my book of the week in another :)
I am trying to add a link to my blog today and I am asking you to please click on it or go to the WebSite to Vote. Pepsi is giving away money for Research and if CureJM gets the most Votes in the month of July then we (CureJM) could get as much as $250,000.00 for Research and bring us this much closer to find a Cure. I am actually begging you to Vote, and go back and Vote again and again as long as it takes for us to get in the first place. Right now we are in the 19th place so we have work to do!
http://www.refresheverything.com/makejmamemory
Thank You!!!! and just think if there is a Cure for JDM then I won't be bugging you all the time :) and instead find something new to bother you all about :)- haha :)
Love,
R A C A
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