Sorry I've been quiet these past few days. I've been having a rough week emotionally. Kaitlyn is doing okay but the disease is progressing. Her seizures have gotten more frequent and are causing her oxygen concentration to go down too, which they weren't really doing before. She is also getting more dependent on the oxygen. When we take the nasal cannula off of her face to put her shirt on, her oxygen will dip within a minute or so into the low 90s. Not a bad number at all but a week or so ago it would take at least 15 minutes for her oxygen to start to dip.
It is obvious that the disease is progressing rapidly and it is really difficult to accept all the changes. Sometimes it just feels like it's getting closer and closer to the end. I'm not trying to be negative but rather honest in what we are going through.
I cherish every moment I have with Kaitlyn. One of my favorite things to do is to hold her. I haven't done a lot of it lately cause it seems to always cause her pain but I've been making a point to hold her every day, even if it's just a few minutes. Holding her makes everything seem right in the world, it is one of the best feelings.
Since Kaitlyn's last stay at the hospital and the start of seizures and apneic episodes, she isn't interactive much at all. She will occasionally give a half smile or move her arms and legs to show that she is excited but it is really hard to watch your child not be able to express herself like she used to. It has been almost a month since I've heard Kaitlyn giggle. The truth is that it might have been the last time that she was neurologically able to giggle. I hope that it isn't but as things get worse you just don't know.
With this type of terminal disease, you don't just mourn the loss of your child when it happens. You mourn and grieve every day for the things that are lost, like abilities your child once had, like being able to say "Mama", to giggle, to smile and see both dimples.
It's been a tough week but we are so thankful that we get to spend it together.
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| Seizures take a lot out of her |
It is obvious that the disease is progressing rapidly and it is really difficult to accept all the changes. Sometimes it just feels like it's getting closer and closer to the end. I'm not trying to be negative but rather honest in what we are going through.
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| Checking on big sis! |
I cherish every moment I have with Kaitlyn. One of my favorite things to do is to hold her. I haven't done a lot of it lately cause it seems to always cause her pain but I've been making a point to hold her every day, even if it's just a few minutes. Holding her makes everything seem right in the world, it is one of the best feelings.
Since Kaitlyn's last stay at the hospital and the start of seizures and apneic episodes, she isn't interactive much at all. She will occasionally give a half smile or move her arms and legs to show that she is excited but it is really hard to watch your child not be able to express herself like she used to. It has been almost a month since I've heard Kaitlyn giggle. The truth is that it might have been the last time that she was neurologically able to giggle. I hope that it isn't but as things get worse you just don't know.
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| She still loves books but is now more into the ones that rhyme! |
With this type of terminal disease, you don't just mourn the loss of your child when it happens. You mourn and grieve every day for the things that are lost, like abilities your child once had, like being able to say "Mama", to giggle, to smile and see both dimples.
It's been a tough week but we are so thankful that we get to spend it together.
I haven't missed a posting yet, and I haven't ever commented. I have cried, prayed and at times, smiled. When I read this post, I knew I had to post something to let you know there are so many people praying for you, as well as your family. Your journey is unimaginable...mothers should not have to go through what you have. Please know you are amazing and you are an inspiration. We pray for Kaitlyn so frequently, but we also pray for you and Chip and Cole too. And for everyone who has been touched by Kaitlyn's life. The grieving process started a long time ago...share your pain and worry with us so we know you need extra strength!
ReplyDeleteI am praying for you all. I remember sweet Kaitlyn from her birthday party at the Fieldstone Farms club house. I was one of the lifeguards who helped with the her party. She was so beautiful and full of life! She had a contagious smile. I wish you all the best and continue to pray for you and her.
ReplyDeleteI want you to know that I check every day for updates, I am touched by your strength and grace. I continue to pray for beautiful Kaitlyn.
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