What a beautiful day today in Denver. We woke up to blue and sunny skies and the forecast for temperatures in the 70's.
Connor went to his Breakfast Club as always at 7:30 AM and by 8 AM he was back and ready to leave for the Denver Zoo. Unfortunately for him he had to wait for one hour and forty-five more minutes. We spend those playing some more SW Wii and before we knew it we were rushing down stairs for our pick up with Amanda :)
I have always bragged about the great care Connor got when we were in Chicago and how he got attached to everyone there and I have to say they are getting some big competition right now from Denver....
As you all know by now, Connor was not very open hearted when it came to him trying to attach to the Denver Hospital. He was hoping the flight from Chicago would take him home and when he realized he would stay at a hospital again he shut down his normal charming self. To quiet a degree we all did. So I have to take my hat off to the following people for not being discouraged even when Connor was moody, tired and depressed.
Connor's favorite Nurse stands to be without competition Chinonye, followed by Megan, Shelly and Maggie!
His favorite Therapists hands down for PT are Miss Kerrie Carrie, who always knows when to push Connor and when to back away and who has been treating us as friends and not just patients and Miss Tara, Connor's other PT Therapist, who has been game for and helping set up all the fun outings we had so far. This then includes on top of Connor's list Amanda, who is taking care of Connor's OT and who is fun, outgoing and extremely patient. None of the wonderful field trips would have happened if Amanda and Tara had not seen the need for Connor to get out and try to make Therapy fun. First the Marble Slap Ice Cream Field Trip and today the Zoo. It takes quiet a bit of coordination and effort to make something like this happen and we are so so grateful to see a smile back in Connor's face! The Zoo was so much fun and Connor got out of his chair at least four times to walk. What made it really enjoyable as well was Miss Tara bringing along her son Tommy who is 6 years old. It felt more like a play-date and outing with friends and as Connor said on the drive back - "This was not Therapy it was fun and I am so HAPPY!"
I also want to point out Megan who is Connor's OT as well and who just had a Baby! she was very good to Connor as well and I am in awe how much she cared for him and worked with him while she was this close to becoming a Mom.
Then there is Mr. Javier, Connor's Psychiatrist who is wonderful to talk to and convinced Connor so far to write a book and to go Geo Caching :)
I am sure I already mentioned Dr. Soep. She of course is an Angel. It really must be a trade for Rheumatologists to be kind hearted. She talks to us in a way that makes everything easy to understand and she always lays out all the options for us. She communicates with Dr. Pachman or Dr. Curran on a frequent basis which I am sure is not the usual protocol but she knows we cherish all opinions :)
Another news is that Connor's Batman Boots came in today which are braces made to fit and hopefully for him to wear at night-time to help straighten his feet.
We also had a visit from the GI Doctors and they are still waiting or needing more blood work. It could be he has an inflammation or infection, it could be due to the medications he is getting or it could be caused by JDM itself. The doctor told us that this is not something he worries about to much right now and this would not put a damper on a release date. The blood work they will take will also show them if anything is going o in his Pancreas which is not very likely to be the case but as always better safe then sorry ....
Right now we are waiting to see Dr. Soep and I am still hopeful we can get a release date set .....
I am thinking (dangerous I know :) that it is easy to Believe when you are not challenged and put to the test BUT it is also easy to Love and Like someone when they are lovable and likable. When we were in Chicago at CMH I believe we were mentally in a better place lots of the time and Connor really was his charming self when he would go to the Brown Play Center to color or play BINGO and sing songs through Channel 16 from his Hospital Bed. He was even in the spirit of buying ice cream for his nurses ..... , well he did set up a cookie plate here in Denver :)
Here in Denver we did have a handicap because we all were exhausted and Connor pretty much decided he had enough. There were not to many sparks left in him and there were times he was grouchy, tired and very moody towards everyone (which I think speaks to all of us as a family ...
So I think the Doctors, Nurses and Therapists had not as easy a time to fall in love with all of us but they tried and most did anyway ...
One of our next challenge I think when we arrive home will be working on some of Connor's more recent behavior. As I said even basic manners will be ignored if he feels he is not getting the attention he deserves. Understandably he got a lot of attention in the last 49 days and it will be a new experience again to share the lime light once we get home.
However, I am gladly taking up this challenge because it means we will be HOME...
Which of course reminds me ... On the Home front today Ron was able to finish our Taxes, which I am very grateful for since this is not a job I like, and then everyone got some time on the back porch today sunbathing as well as Coffee and Cake. It truly was a beautiful, sunny day all around here in Colorado it seems.
Now to Connor and my meeting with the highly anticipated visit from Dr. Soep ....
If the Blood Work tomorrow comes back looking good or the same as the last one we are looking at a release date for FRIDAY, MARCH 19, 2010!!!! This is 2 Days from today and would be day 51!!!!!!!!
I am still in shock and Connor has not stopped smiling, laughing and just being bubbly to no end. It sounds like he will stay on twice weekly pulses of Solumedrol, with a possible down grade to just once a week. We keep the methrotrexate, cyclosporine and the IVIG going as well, but the IVIG might be just a once a month. Home-care it sounds will take care of all the medication that goes through his medi port plus the blood work and then they will also provide in-home Physical Therapy and Occupational Therapy. We should be able to fill all his medication here at the Hospital Pharmacy so we will get home prepared in that regard.
So please keep your fingers crossed that tomorrows blood levels look good! We are so hopeful to catch a break .....
We most likely won't handle any visitors in the beginning since we will need to figure out a schedule on how this will all play out but knowing me you will stay up dated through this blog anyway. It's not like I have a hard time finding words :)
Hugs,
R A C A
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