Our thanks!

Kaitlin and I would like to thank everyone who came out and/or contributed to our 3rd annual Coming Together for Kaitlin benefit this past weekend. It was very nice to see everyone, once again, come together and support Kaitlin and our efforts to raise awareness for Late Infantile Neuronal Ceroid Lipofuscinosis.

In the past week, we have had a lot of appointments for Kaitlin. Kaitlin had a visit to her neurologist, pediatric surgeon and her opthamologist to name a few. We got a new button for her gtube inserted that is said to be more comfortable and help to reduce both granulation tissue and drainage from the tube site. It seems to be working well. The eye doc said that her vision has changed, but not drastically. We were happy to hear that! Kaitlin was rushed in for an emergency EEG on Tuesday to get a better idea of where her seizure activity lays at this point. I was happy to hear that some of the jerking and absentness we have been witnessing with Kaitlin is not seizure activity. It seems to be just an increases in her myoclonus and unfortunately a general progression of the disease. While I'm saddened to hear that she is progressing in some ways, I'm still happy to hear that she is not in a constant state of seizing.

On a happier note, keep an eye out for some new merchandise we will be posting. We have Come Together for Kaitlin t-shirts (Men's, Woman's and Kids) and Chamilia beads that were designed specially for Kaitlin from a jeweler in Connecticut and are beautiful. They have an engraving on the side that says "Together for Kaitlin". The beads are pink, purple and black. I will post pictures of all soon with their pricing and as always, the proceeds benefit Come Together for Kaitlin.