I am off and spending 48 hours with Claire. Grammy and Poppy relieved me at lunch time and Daddy got there before the transplant and will have to update on that, but everything went well. Con is doing amazing, he likes our view a bit too much, we can’t have the cloth curtains so at 3 am wanted to look at the cars on the FDR, so it was a long night, but not in a bad way. He assisted with his 4 am blood draws and earned himself a few beads. When he woke up he did not really want anything for breakfast except pediasure, but ate lunch for Grammy and Poppy and more importantly dinner post transplant for daddy, this kid is amazing! Con loves OT and had another amazing session today this time water play, which was an amazing way to get him to like his oatmeal baths more. He also got his favorite today, one one one music therapy! Overall for a transplant day, he had a great day!
Claire hung out at camp Hand until I picked her up, we are beyond blessed to have Lauren and big cousin Maddie, Claire was so happy there and I have tears in my eyes thinking about how lucky we are to have Lauren, she takes Claire in even though she has 4 kids of her own and treats her like her own, I also know she in her heart wants to help and boy is she!
Claire and I also got to have a date at Friendly’s, they now know her there, lol. We also picked up a child hood cancer awareness lawn sign, Bernardsville is amazing and all because of Campbell, you should see how “gold” her street is, brings tears to my eyes, this is such an amazing town, first Heartworks and now seeing the whole town gold leaves me speechless, the support is unreal as is the awareness, Thank You, Campbell and your amazing family, you are all changing the world.
Lastly, Claire has changed so much in the last week, while we are getting feedback each school day on what we have to work on and I was worried if we did the right thing by sending her, I can 100 percent say we have done the right thing. The problem with Claire is that even though she is a 25 weeker she does not qualify for early intervention in any area really as she is not delayed enough, yet she is delayed vs her actual birthday and probably on target with her due date. The solution was send her to preschool, well while feedback is hard to hear the growth completely outweighs it. After one week she knows all her colors (I had been trying to work on this all summer in my free time, lol), she is a complete chatterbox and only speaking in sentences and just so happy, not clingy like she has been in past hospital stays and there is so much more. So yes there is a lot we need to work on, but it is the best thing for her!
A few, actually a lot of pics from today:
During his transplant:
Silly after his transplant (and eating):
Dinner date with Claire:
Our lawn sign: