Less is More?

Every day here is different in how Kaitlyn is feeling and doing. Today, we decreased the amount of food she is getting at each G-tube pump feeding because her body seems to not be tolerating it as well as before. As her liver and spleen continue to get bigger, it puts more pressure on her stomach, making it not able to tolerate as much as often. We knew this would happen, so it's not a big surprise to us but it doesn't make it any easier.

Kaitlyn on the piano

Kaitlyn also had really dark urine in her diaper this morning. She is prone to urinary tract infections but she isn't showing any other of her typical signs so we are keeping a close eye on her for signs of infection. Worse case scenario is that her kidneys are starting to shut down but hopefully she just needs a  little less food!

Cole on the drum

 She continues to have "quiet" seizures, where she stares up, goes pale and grinds her teeth. Sometimes her arms and legs will tighten or twist a little but they aren't like your typical grand mal/tonic-clonic seizures. Sometimes her breathing will get really shallow or even stop but she has been able to come out of them with just a little help (stimulation, blowing in her face and suctioning). She also has apenic episodes where without warning she will stop breathing for a bit. Her "episodes" from start to finish last about 2 minutes. We are able to keep track of everything with her pulse/ox monitor which she continues to have on her 24 hrs a day, as well as the oxygen.


She is definitely less fussy then she used to be which is either from her disease progressing and her being less aware or from all of the medications she is getting, which tend to have a calming effect. We're pretty sure it's mainly the meds.

Picking a pumpkin for Kaitlyn

She still doesn't laugh but we can get a few small smiles out of her every day. We can also tell when she is happy or excited because she will move her arms, legs and head around more. It's amazing how much communication there is even without talking and being able to barely move her arms and legs. Her eyes, especially, tell us so much.

We are very thankful for having another day with Kaitlyn. Life is so very precious. Please tell your loved ones how much they mean to you every day. Please continue to pray for Kaitlyn and that the decrease in food will help her overall.

Click here to donate $11 for the 11/11/11 Challenge!

Thank you to everyone who is supporting the Niemann-Pick Disease Foundation by donating or taking the 11/11/11 Challenge. It really means so much to us and all of the other families who have been told that their child has just their childhood to live a lifetime. Thank you!