Catching up after a long while

The support for us is amazing. I can’t wrap my head around how many and how much people are doing for us.  Christmas was more than I’ve ever imagined for my kids and I. So much love, giving, compassion and support given to us, has me speechless. When this feels impossible, I attempt taking in how much support and love we have- and since that’s impossible to quantify- it cheers me up and keeps me going. Thank you. 

I waited so long to update, that I’m not sure where to start.  

Since mid December, Kaitlyn has been struggling still- but also fighting to be the kid she deserves to be. In between the moments that seem unbearable, Kaitlyn’s smile makes everything seem ok in the world. She’s made pictures for us, talked about being a princess, and so much more. In Kaitlyn’s alert moments, she enjoys every minute and inspires anyone who witnesses that.  She needs more of those moments, and she’s teaching me every day not to take them, or much for granted.

A few weeks ago, Kaitlyn had surgery in Oakland to replace her VNS device (vagal nerve stimulator). One of the wire leads broke, which stopped it from working. The day we found out it was broken, it almost didn’t seem real, that another thing was wrong in addition to everything else?! Then I felt weirdly relieved- this was something they knew they could fix. And, they did. Her doctors had surgery scheduled in less than a week. Her VNS is fixed and working again. Her stitches are out, and she’s healing from that. It’s amazing to me that describing a week can fit in a paragraph, but watching her have even one seizure feels like forever.

When we were in the hospital, I met a family whose 2 year old daughter was struggling. Kaitlyn shared a room with her the second night we were there.  Their little girl had surgery and had recently started chemo. The little girl had this cry that was so strong, which is an amazing thing- our ability to cry.  Her cry got us talking about the strength of kids who are fighting a fight we can only imagine.  They were such an amazing family, each reciting their last few months in an exhausted yet completely loving, and selfless way. They also talked about cancer and their struggles with such hope for the future.  The mother and I took turns watching both the girls laying there. We didn’t have to say everything we were thinking. Some of the most inspiring moments in these last months have had no words, yet words are all I have to describe them.  Our girls were fighting very different things, but they’re fighting with everything they have, and they keep us going even when we don’t think we know how.

We just got home from 3 nights in San Francisco.  Kaitlyn’s strength is indescribable. Kaitlyn was still losing weight and continuing to struggle with multiple seizures.  She wasn’t holding down her feedings consistently. Her weight got down to 50.4 pounds last week. Her doctors had decided a  GJ (gastrostomy-jejunostomy ) tube is the most productive next step to help Kaitlyn absorb her feedings better. I think it’s called a jejunal tube, but since over googling now, I’m finding it’s called a few things (and I’m sure I’ll nickname it to something awkward soon). This tube was placed further into Kaitlyn’s digestive tract- in the small intestine (past her stomach, called the jejunum). I had no idea we even had those until this.  From the outside, this tube looks similar the g-tube she already had, except it has an extra port. One goes directly to her stomach, and the other to her jejunum. It comes with some potential complications & can need more maintenance- so she’ll be carefully monitored. The feeding schedule is that she’s on this feeding tube for 20 hours a day.  In some ways, this has felt like a giant let down, but in more ways- this is something that can help our Kaitlyn. The GJ/jejunal/J/gastro-jactocrazyname-o’ tube is providing a lot of hope right now. So far, so good! She’s tolerating the feedings better. She’s been so much more alert as well! In the hospital, she walked to the playroom and had the energy to play dolls, organize play furniture, draw sweet pictures, and do some puzzles. It’s going to be a bit of an adjustment to have her connected to the feeding pump for 20 hours a day, but we can do this and we'll figure out how to find a new normal again.