Changes

Thank you to everyone who donated and participated in the 11/11/11 Challenge to raise money for Niemann-Pick Disease research through the Niemann-Pick Disease Foundation. We are so grateful to have so many generous, caring friends and family out there and it really means the world to us! One day with your help, there will be a cure. THANK YOU!!!!!

Snuggled in her new blanket from Aunt Jess

Kaitlyn and her birthdate- so sweet!

Kaitlyn is doing a lot better than she was a few days ago. We aren't sure why (most likely all of your prayers!) but we sure are thankful! Since it seemed that her bowels/intestines were slowing down, we switched her from Pediasure to Elecare. Elecare is more broken down and easier to digest. So far she has been able to process it better. She has had a decrease in the number of wet diapers that she has each day so we are keeping an eye out for fluid retention.

This is what she thinks of how she's been feeling

Her heart rate hasn't been fluctuating as much the past few days. She's actually been able to sleep pretty well at night. During the day she is pretty lethargic but has a hard time taking good naps. Could be disease related or it could be "little brother" related! She went for a number of days with little to no seizure-like episodes, which we were told can also happen at the end of life but she's had a few off and on, these past few days. It's hard to figure out whether that's a good thing or a bad thing?!

Fun with Gigi!

One thing that is starting to bother her more is her saliva. As her disease progresses, she has lost her ability to swallow efficiently, which is why she has the G-tube for feeding. But she still has saliva in her mouth that gets built up and she's having a hard time controlling it so she coughs and chokes on it. We keep the suction machine close by and are using it a lot more frequently. She is also having a hard time sitting in her floor chair cause she is in a more upright position, causing her saliva to pool in the back of her mouth rather than on the side if she were laying on the floor. This is why if she were to get sick with a cold it would be really hard on her body to manage all the extra drainage. There is medication that we have used in the past called Robinul that helps decrease the saliva but it also can cause constipation and other issues. So right now the benefit doesn't out weigh the risk of making her other systems compromised.

Yes- he really IS this happy 99% of the time!

  
We know that this disease is very unpredictable so we are trying to take one day at a time and be thankful for each day that we have, and especially soak up the good ones! :-)

Thank you for all of the messages you all have left, either on the blog, through Facebook, or email. It really means so much to us to know that Kaitlyn has such great support and that she has touched so many of your lives. She is truly an angel from God sent to make us feel more in our hearts and learn what matters most. We are so lucky to be her parents.