Kaitlyn's Korner: Fun times

Monday, October 3, 2011

Fun times

Kaitlyn had a really great weekend. Yay! She has had only a few tiny episodes so it looks like the increase in Keppra is helping! She did have a fever on Friday and has felt pretty warm since. She has also been crying occasionally when she has a wet diaper so she will be starting antibiotics in case she has a urinary tract infection. She's had a few in the past so it's pretty easy for us to tell when one is coming on.

Hey everyone!

Holding Kaitlyn is one of my most favorite things to do. It doesn't happen very often because of the discomfort it causes her. With her liver and spleen being so large and her body having such little muscle tone, it really takes a toll on her anytime we move her. Normally, your liver and spleen are protected by your rib cage. Her liver and spleen are almost down to her hip bones! This is one of the hardest parts of the disease on us, as her parents. Not being able to just pick her up and hold her and squeeze her. We do it in our own way but it is difficult none the less.

Precious time together

There are so many things that you take for granted when you have a healthy child (we have one of those too!). The little things that seem so normal like sitting up, crawling, a simple smile or giggle. Every day we grieve the loss of these simple yet priceless things that are taken away from us.

Here is a video of Kaitlyn exactly a year ago!

While we grieve the loss of these things, we still cherish what we DO have- Kaitlyn. She is STILL with us and we remind ourselves of how blessed we are everyday to have her. We can tell when she is happy, whether she smiles or not and we love her just the way she is- amazing, beautiful, sweet, funny, and precious.

Hair fun!

When I was a little girl, I always loved having my hair played with and my sister, Jessica, and I would take turns braiding our hair. I thought Kaitlyn deserved some fun hair time too!