What a treat!

We got the best treat this morning. We woke up around 6am and Kaitlyn was giggling in her sleep! We haven't heard her giggle in over 2 weeks so this was such a wonderful moment for us. With Niemann-Pick disease, children can lose abilities and never regain them back. Knowing that she still has it in her is such a blessing, even if it is just when she's asleep.

Kaitlyn and Cole- best buds!

Over the weekend, we were pretty much cooped up at home. Cole went to the doctor to have his ears rechecked and his ear infections are gone (yay!) but it looks like he now has a virus (boo!). The doctor said his throat was really red and that's why he hasn't been drinking his bottles or sleeping well. We really hope Kaitlyn doesn't catch it or hasn't already caught it. It's so hard to tell sometimes why she is fussy since there are so many things that could cause her pain and discomfort.

Smooch! (before we knew about the virus)

Viruses are really dangerous for children with NP because their immune system is already weak. The lungs are also a weak point and viruses that effect the respiratory tract are especially life-threatening. Please pray that Kaitlyn doesn't get this virus and that if she does, that it doesn't effect her lungs or breathing.

Poor guy isn't feeling well

Over the past few days, she has had some episodes that are more seizure-like. These are different than the episodes where she stops breathing completely. Her oxygen is starting to drop a little with these seizure-like episodes despite being on oxygen 24 hrs a day. Last week these type of episodes didn't make her oxygen drop at all so we are obviously concerned.

She always smiles when Daddy gets home from work!

Today has been especially difficult for her. She has had multiple episodes that seem to be more severe than usual and she is starting to get upset afterwards. Before, it seemed as thought she didn't even know they were happening. She throws out her bottom lip and looks so sad. :-(

Hanging out together

We know that this will just get worse as her disease progresses. The only things that we can do are consult with her neurologist about medicine to control these episodes and comfort her at home when they happen.

Checking on Big Sis

Please continue to keep Kaitlyn in your thoughts and prayers as you go about your day. She could really use them.

Hope everyone had a good weekend!