Connor got to explore the outdoors today 'Thanks' to his Dad who is in this regard much more adventures then Mom.
Connor has been asking to go outside since the first snow fall earlier this week and now that Ron is home and we had a second big snow fall he finally got his wish.
The first Adventure came in the form of me trying to get him dressed. As you all know by now, Connor did gain quite a bit of weight and the snow suit fit okay but was not as roomy as we were used to. He then talked his Papa into going on the 4-Wheeler which did not go to well since he had to spread his legs to far and the bouncing hurt him as well. He was happy however since he got to try it.
Then my nerves were tested again when Ron and Connor headed for the play-ground. His favorite thing to do before he got sick was swinging on the swing set. He got to try both the swing and the slide (Ron sat him on the slide as high as possible and held him all the way down). He did not like the slide since it hurt his neck BUT he was still Happy!
Overall, if you were to ask Connor, the trip out-doors was a big success and my nerves were calmed again once he was back inside. I loved seeing him smiling the whole time he was outside but it was also squeezing my heart watching him struggle to walk and move. Everything that used to be so second nature to him and now just delivering 20 % is so much work and effort. He is by far a fighter and I am so proud of him!
Alexander, my Mom and I got to get out for a while when we went on an all exciting outing of shopping at Wall-Mart :) It is interesting how we now manage to just go to the store once a week, feeding six and doing really well :) I know it will change but for now it still seems like such a worry taking Connor out into public just because I want to control the germs and virus exposure as much as possible. So even when just the three of us went to Wall-Mart you would have smiled watching me wipe down the cart with antiseptic wipes so we wouldn't catch anything and bring it home to Connor.
What a change to go from being a Mom who never worried much about it and always thinking that each cold the boys caught would just strengthen their immune system to complete reverse and now trying to protect his complete weakened immune system ....
I have been thinking a lot about my upset with the Pikes Peak Regional Hospital, especially the ER and I am now wondering if I can help turn a bad experience into a good one. Since I had quiet a few feedback from others that had a bad experience there as well, it might be beneficial to request a meeting with a Representative and have all of us voice our concerns and see if it will bring a change. I am going to be truthful that I will not be going back there as I had to many problems in the past but I realize there are a lot of seniors living out here and they do not have the option as easily to make the drive to C-Springs or Denver as we have.
I am also thinking I must give an interesting picture to others, since the one reply I get a lot lately is that I need some rest or a day off (even my husband said this to me today), am I really looking this tired? hence the explanation why there are no pictures posted of me - ha ha.
I am finally after not even considering it once in the last three months, thinking that maybe I could do with a day off! I know it was meant well when I would get the speech in the past about how 'one needs to take care of themselves before they can help someone else', but quit frankly I found this phrase more then annoying and irritating. Who in their right mind would leave the side of their child when it is very sick (if they have the option of course), to go and spend a day getting pampered? I can just envision me getting a massage and being up in knots worrying about what is happening to Connor.
However, even I move on and now that he is home and Ron is still on a 'Family Leave' I am ready to venture out to an all girls lunch :) Another progress I am making is in the form of taking a nap each day. It is like going back in time when the boys were small and I would catch some rest when they took a nap. So as for now don't try calling us between 1 PM and 3 PM - ha ha
There are also some more serious consideration going on at our home and for the first time, Ron and I sat down a couple of days ago and talked about our future options. It seems we both have thought about the same path we might face but never mentioned it to each other until now that things are calming down.
For one there is the thought about moving so we could downsize and live more economically but what would initiate the thought of moving the most would be getting Connor closer to the access of medical treatments he needs.
All this talk is NOT written in stone and we are not making any decision right now! As a fact my husband today talked about building a Tee-pee for the boys in the forest behind the play ground. However, we did have a yummy dinner tonight that was made up of whole wheat crackers, Mediterranean Olives, Gouda Cheese and Roasted Pine Nuts Hummus, plus I enjoyed a glass of Liebfrau Milch White Wine and we are almost convinced now we should move to either the Tuscany, Italy or Greece. Not sure how their Heath Care System looks like just yet but maybe I have to do some serious research ... :)
Tonight I want to Thank Mr. & Mrs. Morgan once again for their most precious concern about Connor and most of all for always having such wonderful up lifting things to say about my blog. I am never sure who all reads it and how much sense all my writing makes until someone brings it up. I so love the outlet it brings me but I am also glad to hear that it means something to others that care about Connor.
Hope you all had a peaceful weekend.
Love,
R A C A
Good morning from the Midwest!
ReplyDeleteI felt the need to leave a comment about your feelings about your ER experience with Connor... It was an ordeal like this that brought us down to CMH. I had taken Taylor in to Children's Hospital in Milwuakee, ranked as one of the top in the nation! They had made the initial diagnosis in December/2009, I brought her in there, with our overnight bags packed, because she couldn't put any weight on her right leg...they sent us home that afternoon on Motrin, and a promise of follow up from the Rheum. Clinic. I had obviously packed our bags because I was concerned enough that she should be emitted, but the ER (who mind you was in contact with the Rheumetologist on call) was not so much...he was quick to say it was synovitis, and that would have been his dianosis regardless of her JDM...(the only infection marker that he ran was for WBC - which as we know, will be eleveated because of the prednisone) The clinic did NOT follow up with me before I called them, and they wouldn't schedule an MRI until she was seen in clinic (which wouldn't be for a few days)...I called Dr. Pachman's clinic, they said bring her down, we'll get her in. You know more than anyone else how increadible the staff at CMH is... I will NEVER take Taylor back to Milwaukee, knee-jerk reaction? of course...acceptable for my peace of mind? absolutely...if they weren't willing to respect the severity of her disease, why would I trust them again...if they didn't trust my gut instinct and growing knowledge of the disease as her mom (as in your case) shame on you, I know my daughter better than anyone else, my opinions deserve respect! I hope my venting is beneficial :) Your opinion and eagle eyes will do more for Connor's treatment in the long run than you will ever give yourself credit for...Trust yourself!
Have a great week! ((hugs))
Beth and Taylor
Beth ... Thank You so so much for your post again! It has been so incredible frustrating to see how ignorant people in the medical profession are towards JDM. I knew it is a rare disease and I expect to have to explain it over and over to friends and family but I was not prepared for the battle I would have with nurses and doctors.
ReplyDeleteSeeing I was 'just' dealing with a blood draw last week I can only imagine how upsetting and scary your encounter was. Once again hat's of to Dr. Pachman ... I am really scared to think were we would be now if it hadn't been for her and now Dr. Soep!.
Hugs to you and Taylor ... maybe we cross paths in Chicago some day.
Will you be there for the race in September? I am not a runner but would love to be there to show support ...
Anke :)