Saturday Morning

Kaitlyn was finally able to fall asleep for a nap around 4:30pm yesterday (Friday) and then woke up for a short bit and then slept the whole night until around 7:00am. She really, really needed the rest and I'm so glad she was able to sleep uninterrupted.

(Sorry I don't have any new pictures to post for today, but I have added some below from this time last year. Amazing how much has changed!)

This time last year- Daddy and Kaitlyn putting the angel on the Christmas tree

This morning she still sounded really congested in her throat, nose and sinuses. Her lungs are already compromised due to NPD. The storage material that builds up in her body, called sphingomyelin, builds up in the lungs causing it to be more difficult for her to breathe adequately. That with the added pressure of the enlarged liver and spleen make her lungs a weak point for her, especially when she gets any sort of respiratory virus or infection.

This time last year

This time last year

She is on the full 2 liters of oxygen- the safest level for continuous oxygen for her. We usually have her on 1 and a half liters. I feel like the added oxygen will help her lungs get what they need so that her body can focus on fighting off the infection and virus. We have also had to suction out her nose and throat a lot since she can't swallow efficiently enough to clear them.

This time last year- baby shower for Kaitlyn's little brother Cole!

Jordan, RN will be stopping by this afternoon to administer the last rocephin (antibiotic) shot and to listen to Kaitlyn's lungs to see how they sound compared to yesterday. We are praying that there won't be a need for a chest xray. Kaitlyn is at home upstairs today resting and that's where we plan to stay!