What a weekend!

This past weekend was filled with lots of blessings and lots of concerns. Kaitlyn is starting to have more pain and irritability that we can't get to go away with our "normal" tricks (repositioning, opening her g-tube to see if there is air in her belly, reading books to her, watching videos, cuddling). We don't know for sure where the pain is coming from but our best guess is that it's coming from her growing belly. Her belly is really getting big, especially right under her rib cage at the top of her belly. It's almost hard as a rock in that one area. This is normal for a child in the later stages with NPA. Since her liver and spleen are so large and keep growing bigger and bigger, it pushes up against her lungs, making it more difficult for her to breathe.

Not feeling well

Stephanie, RN, our hospice nurse, helped us recognize that Kaitlyn isn't always using her lungs to breathe. She will have episodes where her breathing changes from her chest rising and falling (normal breathing) to using her stomach muscles to push in and out to help her breathe.

Finally getting some rest

 



We know the path that NPA is taking us down but it isn't easy to see the changes and know that she is in pain. In the past, we have used her pain medicine, morphine and valium, as needed, but we are now facing the reality that it may become part of her daily routine.

Not feeling so well, upstairs watching Tinkerbell

Kaitlyn still has good days but when she has bad days, they are starting to get pretty bad. Our priority is her health and well-being. It's so hard as a parent to have to give your child medication like this but we know that we are doing the best thing for her, to make her pain go away.

I got to hold her while she napped and it didn't hurt her!!!!

On a different note, over the weekend we had the pleasure of spending some time with a family who has been touched by Kaitlyn's journey. Some of our friends have shared Kaitlyn's story with their other friends, whether through Facebook or the 11-11-11 Fundraising Challenge and we were able to meet one of these families. Their daughter just turned 2 and for her birthday party, instead of gifts, they asked their friends and family to donate money to the Niemann-Pick Disease Foundation and/or Kaitlyn's Fund. They had never met us before this weekend but they were so touched by Kaitlyn that they decided to do this act of generosity.

I've said it before but THIS is the reason Kaitlyn is here. She has the ability to touch people's hearts, whether for a day or forever. Although we wish we could change the outcome of this disease for her, we know that BECAUSE of this disease and what she is going through, she is able to fulfill her purpose on earth and do God's work.

A smile with Memere :-)

We are so thankful for what the Cook family did and we look forward to spending more time with them. A HUGE thank you to all of their friends and family who donated to the Niemann-Pick Disease Foundation and/or Kaitlyn's Fund. It means SO much to us and to the other families who have a child with this disease.

Thank you God for Kaitlyn and for the many hearts she has touched and will continue to touch. We are so blessed to have her in our lives.    

Loving books with Cousin Makayla!