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So I am home with a sick Claire Bear, after seeing her this is definitely preemie related (I.e. Immature lungs and a weeker immune system) so we are going to lay low this weekend, goal is to have her on the mend by school time on Tuesday. We have started up her steroids and Abuterol in a preventative step and will likely continue throughout cold and flu season. As I said to the twins ped today, Claire is definitely the sicker twin right now, he chuckled and said nothing else really matters does it, could not agree more, Con is kicking a$$! I am sad Claire is sick though because we had two fun things planned this weekend. First, tonight we were going to the high school football game, it is a “white out/gold out” game going gold for Campbell and childhood cancer awareness. Campbell’s mother created t-shirts for the game and ordered 400 of them and get this, they are sold out, how amazing is that?! She was kind enough to put 6 aside for the four of us and Grammy and Poppy, knowing we know no one in the high school to purchase for us. Check these out, how amazing are they and how amazing is Bernardsville, the t-shirts sold out to high school kids! The parents in this town are doing something right, I thought Heartworks was the thing that made our community special and unique, but also the people are right up there too.

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Also, below is Robin’s profile picture, as a community we can never ever forget, we need to honor Campbell’s, never stop talking about her or her entire story, it is the only way the next kid can be saved, which could very well be Connor.

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In addition to this a bake sale is being held at the game, 5 people very important to me all baked, thanks, Mama Meg, Lauren, Kristin, Jenn and Ryan! All the money from both the t-shirts and bake sale are going to the lab run by Con’s first nuerosurgeon, if he ever relapses we will likely call on their services, so it is very dear to our heart!

The other event we are missing, is the twins NICU reunion picnic, even if Claire is better tomorrow I can’t in good conscience take her because of all the suppressed immune systems that would be there. We wanted to go number one because Claire would have a blast, it is at an unreal camp around here that has everything, go carts, zip lines, pony rides, you name it, but also because both Casey and I were going to go, Grammy and Poppy were going to watch Connor and it would have been very special for Claire to have a day to herself with both Mommy and Daddy, so that part sucks, but oh well she needs to get better!

Other than that Con is doing great, no fevers, enjoyed play therapy and music therapy today, is settling into a hospital schedule too, napping each day and sleeping a solid 12 hours, still eating too (not a lot, mostly junk, but we will take it). No one can get over how well he is doing!

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2 thoughts on “Home

  1. Con looks amazing! He is such a miracle. You’d never know looking at his pictures what he has been through. Hope you all get that extra time at home! Sorry about weekend plans and that Claire is sick. Even for non-premies, going to school for the first time brings all sorts of disease home! I’m sure she is just happy to have you there.

  2. How is it that Claire is the sicker twin!?! Unbelievable Connor how strong you are. There is so much your community and Campbell have offered to you all & to childhood cancer in general. It is amazing to hear about. I hate your weekend plans are squashed, but glad you can snuggle Claire bear to feeling better.

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