Timothy had several firsts this past week. We took him to a local playground with WOODCHIPS! Woodchips and CGD don’t go together and we have always avoided woodchips. Well, not anymore. It was a very strange feeling letting him go and explore. It was a mixture of excitement and tension. I couldn’t stopping smiling at this milestone. We have come a long way. Timothy was very excited to play and explore. He still gets very timid and fearful around people, but managed to have a good time.
His first slide since the transplant…
And of course our Claire had a lot of fun too. She was happy Timothy was with her.
Another first…Timothy was able to go to district (small gathering of church people)! He had a lot of fun and didn’t want to go home :). I wasn’t sure how he would be around a group of people, but to my pleasant surprise he adjusted better than I expected. It’s amazing how quickly kids adjust. It’s an adjustment for me too. I feel like we are starting all over. I am careful and mindful of where he is and still worry about what he is exposed to. Hopefully with time, I will be more at ease and will adjust to this new reality.
He is off all his meds now. He was always on medications since he was 2 months old. Every morning and evening and sometimes during the day, giving him meds was part of our life. Not anymore. Hopefully, he won’t ever have to be on long-term meds again…
My husband and I talked about how we are starting over in regards to discipline as well. Because of his illness and what he has gone through the past year, we have been catering to all his needs. And now that he is a little older, he thinks that’s the norm. From social behavior to basic manners, we have to teach him and give him boundaries and guidelines. We are expecting some tantrums in the near future. But we are so thankful we have come this far and are at this stage of parenting.
We have another appointment next Monday to check his platelets and hemoglobin. I think his platelets are still low. He still gets bruises and petechiae around his body. Please please pray his platelets and HGB counts go up. Thank you.
My little fighter! I can’t believe what he has gone through all 3 years of his life… What a resilient kid!