In a weeks’ time we have been busy, busy, busy. All with good things. Most importantly last week Daniel came off yet another oral medication. This is a big one that will allow us so much more freedom in our days for planning and sleep and just normalcy and best of all it allows Daniel to eat grapefruit again. He couldn’t eat it for so long and really did miss it. I am still so worried and concerned about Daniel’s ankles and legs being sore and hurting but I know this is soley due to his deconditioning and he is so inconsistently exercising.
Busy week of school and appointments and some fun with Broncos. Daniel and Dad went to a Thursday football game that we were given tickets too by a friend. It was so nice to be given a chance to go. They had great seats and enjoyed the night out together. Although it made for a tough day at school the next day it was all worth it for a night at the game of course.
Saturday was exciting for me as it was my first time getting to volunteer at the Love Hope Strength. The organization responsible for obtaining over 100,000 registrants onto the bone marrow registry. I hope I get to have a long relationship helping increase these numbers and I did by one today as I added myself to the list. Along with many others. I am honored to be on the list and would be privileged and blessed if I was a match to help someone who needed to have a bone marrow transplant. Could you imagine the odds. I also had the honor of working at the Broncos Health Fair where they are now partnered with Children’s Hospital Colorado. I hope this union of LHS and CHCO continues and grows as well.
After a long full morning Daniel and I went to the Taylor Swift concert where we were gifted tickets from the organization Do It For The Love. We were very blessed to be joined by Chris and Cody from Seacrest Studios which made so much possible in the past year. Including the tickets. It was a fabulous night out and the concert was wonderful. One poignant thing that stuck out to me about the night was when we were going to find our seats we were in disappointingly placed seats (to say the least) when I made a suggestion to Daniel that he put on a BMT mask (I always carry one) and we see what we can do to maybe move, he STRONGLY (I am putting this kindly) said “you put on the mask, I am not a charity case.” I was not upset at all. Again another reason I am so proud of my strong son. I feel so lucky he is so proud.
We then rushed over to a fabulous friends bar mitzvah party and I was so happy to just be part of it for the final hour. Mostly to just be able to share with friends and community that have been so wonderful to me. I share this picture of my angels that have been there for me helping me this whole year . I am glad I got there to celebrate a happy moment with a friend and share her joy. So much joy was brought to me as well to see Daniel join in and dance with his friends again as they did and haven’t done in so long. Once again he couldn’t stand the fact I was spying on him but it was with such pleasure to see him happy and doing normal fun things with his friends, like old times.
Then a very special treat, Sunday morning we drove to the mountains for a change of scenery. We have not done this for well over a year (except our great fishing day). We have not been able to be this far away from the hospital with Daniel and now that we can Rob suggested we go for lunch. It was a nice day outing. Minimal car fighting and a beautiful day. It was a nice change of scenery indeed. Daniel’s legs were too sore for too much walking but little incident otherwise and it was super nice to just get away. Maybe next time we will try to do a relaxing overnight. Now that will be really nice.
Busy week of school and appointments and some fun with Broncos. Daniel and Dad went to a Thursday football game that we were given tickets too by a friend. It was so nice to be given a chance to go. They had great seats and enjoyed the night out together. Although it made for a tough day at school the next day it was all worth it for a night at the game of course.
Saturday was exciting for me as it was my first time getting to volunteer at the Love Hope Strength. The organization responsible for obtaining over 100,000 registrants onto the bone marrow registry. I hope I get to have a long relationship helping increase these numbers and I did by one today as I added myself to the list. Along with many others. I am honored to be on the list and would be privileged and blessed if I was a match to help someone who needed to have a bone marrow transplant. Could you imagine the odds. I also had the honor of working at the Broncos Health Fair where they are now partnered with Children’s Hospital Colorado. I hope this union of LHS and CHCO continues and grows as well.
After a long full morning Daniel and I went to the Taylor Swift concert where we were gifted tickets from the organization Do It For The Love. We were very blessed to be joined by Chris and Cody from Seacrest Studios which made so much possible in the past year. Including the tickets. It was a fabulous night out and the concert was wonderful. One poignant thing that stuck out to me about the night was when we were going to find our seats we were in disappointingly placed seats (to say the least) when I made a suggestion to Daniel that he put on a BMT mask (I always carry one) and we see what we can do to maybe move, he STRONGLY (I am putting this kindly) said “you put on the mask, I am not a charity case.” I was not upset at all. Again another reason I am so proud of my strong son. I feel so lucky he is so proud.
We then rushed over to a fabulous friends bar mitzvah party and I was so happy to just be part of it for the final hour. Mostly to just be able to share with friends and community that have been so wonderful to me. I share this picture of my angels that have been there for me helping me this whole year . I am glad I got there to celebrate a happy moment with a friend and share her joy. So much joy was brought to me as well to see Daniel join in and dance with his friends again as they did and haven’t done in so long. Once again he couldn’t stand the fact I was spying on him but it was with such pleasure to see him happy and doing normal fun things with his friends, like old times.
Then a very special treat, Sunday morning we drove to the mountains for a change of scenery. We have not done this for well over a year (except our great fishing day). We have not been able to be this far away from the hospital with Daniel and now that we can Rob suggested we go for lunch. It was a nice day outing. Minimal car fighting and a beautiful day. It was a nice change of scenery indeed. Daniel’s legs were too sore for too much walking but little incident otherwise and it was super nice to just get away. Maybe next time we will try to do a relaxing overnight. Now that will be really nice.