By now you all know I do NOT like getting up before the sun makes an appearance but for Infusion day's we have to leave the house no later then 5:30 AM.
Yesterday was special in many ways because the boys and I got to pick up Ron at DIA who came in from Santiago, Chile, and who spend the day with us. It was not easy for him as he had already been awake for over 24 hours when we picked him up and of course the day had just started here so he had a while to go until he could go to bed last night.
Connor was so happy to see that Amy was working who is hands down his favorite Nurse at TCH's Infusion Floor. I said it before and I say it again that we just love Amy and it is 100% true when I tell you that a Nurse can make or break the day of a child or even Adult.
Connor never even blinked when she accessed his port and the rest of the day was smooth sailing. He started with the blood draw, Benadryl and Tylenol, then the Solumedrol, IVIG and ending with the Methrotrexate.
He was feeling a little down due to the meds and he was a bit more tired then usually but still all in all it went very well.
Dr. Soep told us that we might talk about the possibility of cutting back on the Prednisone after our next IVIG visit and after the Cruise. We do not want to 'rock the boat' right now when we have so many fun things planned for October, like a trip to Miami and the Make A Wish Disney Cruise :)
We will also have a Therapy Assessment done at TCH next time we come since Connor is not making the improvements we would like to see in his feet and legs. Dr. Soep thinks we might have to readjust our approach and even brainstorm the possibility of Botox Injections for his feet.
I had a very surprising experience today as well at the Infusion Center. The boys went to see Mrs. Patt who organizes Arts and Crafts for the children and while I sat down to watch the kids play I started talking to another Mom who was here with her two children and whose son was Diagnoses with Leukemia in April 2010.
The thing that was amazing was not the part of having a good conversation with a fellow Mom but the fact that within 10 minutes into it I was actually laughing a lot. This is a rare opportunity here but it felt wonderful and I am thinking there is more need of this in an area of the hospital were you can see so much sadness and pain.
The Mom's name was Sarah and her beautiful son who is sick is Addison. She also has a beautiful daughter named Madelene.
I am truly grateful that they were part of making this day more enjoyful.
Ron, the boys and I ended up having a late lunch at 3 PM at Chili's in Castle Rock and when we got home we were happy to find out that our Camper was selling today. It really was not as hard as I thought to see it go because we truly did not use it at all.
While Ron finished the sale I went to have a Mom's Night Out with fellow Twin Mommies in Woodland Park. It was my first visit to the Bierwerks, a new Brewery in WP and I have to say I loved it. The atmosphere was great and I am hoping that the next time we go there will be more beers brewed. They had run out of most of them so there was only a choice of two dark beers, regular and wheat. I like light beer but it was still great. So for the second time yesterday I ended up having some good laughs. The funniest part for me was when I was trying to point out where Heidelberg was on the huge German Map they had and it took me a few minutes to find it. Well, my only funny excuse was that the map showed the old borders of Germany and while I tried to use the River Rhine and the border of France as my focus point it was throwing me off that they were closer in the middle of Germany then the Germany I grew up in :)
I also met a 'new' Twin Mom who has identical Boy Twins age 5 and who used to live for a few Years in Germany and it was really fun to reminisce.
So when I got home last night I found three men in our bed snoring away so I had to carry two of them back in their own beds. I love having the boys in our bed when Ron is gone but even thought it is a King size bed there is not enough room for 4 people and one of them who wiggles all over the place each night.
Today we are catching up with work at home and running some errands. We always have to watch Connor on how he is feeling the 'day after' but so far so good. Both boys are running around outside playing in the playground and forest along with Apple and Tasha.
Wishing you all a peaceful and fun weekend!
Hugs,
R A C A
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