We took Katie to see her heart doctor on Friday, and.... get ready.... the news was not terrible!! It might even be considered kind of GOOD. We didn't see that coming. Actually we did, because I knew, Jack would watch out for her. She has a guardian angel now, and so does Charlotte.
Basically, Katie's heart looks the same, it's not enlarged or working too hard, and she's gaining weight and doing well, so he said to go home and come back in 6 weeks and he'll look again. She definitely is going to have to have something done, the balloon catheterization at least, but the bigger she is the better. And he said there is a chance that the valve that is too narrow could grow and widen as she grows which would be awesome, since that is the one thing that's really concerning and can't necessarily be fixed with the catheterization.
He weighed Katie and she's 12lbs 1 oz!! Not sure what Charlotte's weight is, but I would guess about 11 lbs. My chubby girls.
(Charlotte first then Katie):
I've been trying to get out with them more. It helps being busy, and out of the house. Here they are on Thursday before our big trip to Short Hills Mall for lunch with our friend Melissa. The girls were really good. They're definitely my daughters.... great at shopping already!
But, Charlotte was REALLY constipated all week, we'd been trying everything to get her to poop, pear juice, taking her temp rectally, even a suppository, and nothing. Where does she FINALLY decide to go? The mall of course, right in the middle of Pottery Barn Kids. Oh well.
I wanted to mention about the fund we set up for Jack. This is NOT a solicitation for money, more for ideas. When Jack died we knew we wanted to ask for donations in lieu of flowers, but couldn't decide on where to donate to. There are lots of great organizations we tossed around, St. Judes, Make A Wish, even CHoP and St. Barnabas, but I really wanted the money to go to a specific child or family. I wanted there to be a child who knew that because of Jack, their life was maybe a little bit better. So we decided to set up this fund (all the money goes to our lawyer who keeps it in a non-interest bearing account until we decide what to do with it).
That is my dilemma though - what to do with it. We really want to keep it going by having fundraisers every year. My dad organizes golf tours and said he could set up a golf tournament for us, and we are thinking of maybe doing a firefighter softball game or something along those lines. BUT where to give the money?
It doesn't always have to be to the same thing. We've talked about sending a child to camp this summer, or contacting CHoP to see if they have a family with a specific need. It could be something as simple as a child who's family can't afford a bed for them, or school supplies, or Christmas presents. I really just don't know. I feel like Jack did so much GOOD in his short life, and I don't want that to end. I want that feeling of love, and gratefulness and kindness that he brought out in everyone to go on and on. That God sent me Jack for that reason, to make me help other people the way he helped so many. My whole life I've felt kind of purposeless, I never had a job I loved, I never had a 'calling' to much of anything. This is my calling.
I want it to be the right thing we do with this money. I want to be able to tell the children it goes to, there was once a baby named Jack who was so loved, and changed the world, and he's changed your life too.
So if you know of anyone, anything, have any ideas, please share them with me. This is my mission right now. This is what is helping me get through, knowing we will keep Jack's memory alive. I need to find the right way to do it.