Kaitlyn has had a rough fews nights. During the day she has been sleeping really well and is so peaceful. At night she has been having a lot of pain that has required morphine and the fentanyl patch. Even with those meds, she still has pain and has been crying out. It's mainly between 3am and 6am. We aren't quite sure why but we are trying our best to figure it out and help her.
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| Snuggle Buddy |
Yesterday we noticed that inside corners of her eyes looked a little yellow and her skin had a yellowish tinge to it. All pointing toward jaundice and possible liver failure. We know that her time is limited and we will do whatever it takes to make her feel at peace.
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| Of course, Cole loves the monkey too! |
Thank you to those of you who have brought us meals and supported us. Something that really touched my heart was a package on our front door the other day from 4th and 5th grade students who had just learned about lysosomes in science class. Their teacher lives in our neighborhood and told them all about Kaitlyn and how Niemann-Pick disease effects lysosomes. In the package were drawings and letters to Kaitlyn from her class. The things these kids wrote were so sweet and thoughtful. It really touched our hearts.
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| Tinkerbell is very crafty! |
I am continuing to pray that Kaitlyn is comfortable and pain free. James and I were honored to vote for Kaitlyn and Cole and have shared the link to vote with everyone we know. Count on lots of prayers coming out of CT during the prayer service for Kaitlyn.
ReplyDeleteThe Tucker family from Chicago is constantly lifting kaitlyn up in prayer. We pray for strength for you and Chip. As have gone through this, I wish I had lived closer to offer my help. You all seem like such a wonderful family. We have many people praying your family through FB. I hope you have continued peaceful days and patients to get through the rough nights. God Bless!
ReplyDeleteContinually praying for your sweet baby and your family
ReplyDeleteAndrea Carr Tennessee
Deanna prayers continue from down the road in concord. You, your family, and especially kaitlyn are such an inspiration to us all. Thank you for sharing your story with us. Much love. Carmen brinson.
ReplyDeleteOvernights were difficult for us too. Sending love and prayers and comfort to all of you. Love that monkey and Tinkerbell!
ReplyDeleteWe are continuing to keep your sweet little girl and your whole family in our thoughts and prayers.
ReplyDeleteAli & Joe Reardon
Praying in kansas. Love to you all
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