To all our friends and family,
Sorry I didn't email this am but our power was out this am and than Kourtney dominated the computer the rest of the day.
Our night went extremely well. Kourtney had no swallowing issues, we however kept in mind she was really drugged last night. She had a very quiet lonely day today but her spirits are incredibly great today. The sparkle is back in her eyes and the blisters on her face are starting to dry up. I still haven't called the surgeon as I really want to see how her night goes tonight. She has eaten her favourite (a goofy bun made by my mom's sister Sharon), she managed to swallow it. But I think that she will need surgery in the next couple of weeks. I am really waiting on the Lord to give me a clear sign that she needs it or it is something we could hold off on.
Kourtney's face is starting to dry and scab over, thank goodness for a improved dressing called Mepitel. It is sticky enough to stay on and heal but will peel off without taking the scab with it it is actually revouluntionary for this disease. Her chest area has the same dressing on it and is already getting smaller, we just have to keep pumping her full of her feed through her gtube, she needs the calories to allow her to heal.
On Friday night Todd and I prayed and asked God to heal or or take her into heaven....watching a child suffer has to be one of the hardest things to watch and also make sense of. Todd and I felt wasted and hopeless. The next morning Kourtney woke up and said, "Mommy, you and I are going to make it through this". I couldn't say anything, during the day God gave me so much Peace it almost seemed I was in a state of shock. That night God spoke to me in HIS small voice and said, "Janelle, Kourtney's life is going to serve more of a purpose through her life than through her death, I have given her to you to help serve this purpose, hang in there and I will show you great and wonderful things, don't give up."
I still pray earnestly for Kourtney's total and complete healing, I always will but I honestly think that Kourtney's life will be a constant reminder of God's Amazing Love and Grace, even through the most difficult times.
We will keep you updated. Thank-you for your prayers.
I bought her lipgloss today, she put it on, looked in the mirror and said, "I look beautiful." That's what I call grace.
Sorry I didn't email this am but our power was out this am and than Kourtney dominated the computer the rest of the day.
Our night went extremely well. Kourtney had no swallowing issues, we however kept in mind she was really drugged last night. She had a very quiet lonely day today but her spirits are incredibly great today. The sparkle is back in her eyes and the blisters on her face are starting to dry up. I still haven't called the surgeon as I really want to see how her night goes tonight. She has eaten her favourite (a goofy bun made by my mom's sister Sharon), she managed to swallow it. But I think that she will need surgery in the next couple of weeks. I am really waiting on the Lord to give me a clear sign that she needs it or it is something we could hold off on.
Kourtney's face is starting to dry and scab over, thank goodness for a improved dressing called Mepitel. It is sticky enough to stay on and heal but will peel off without taking the scab with it it is actually revouluntionary for this disease. Her chest area has the same dressing on it and is already getting smaller, we just have to keep pumping her full of her feed through her gtube, she needs the calories to allow her to heal.
On Friday night Todd and I prayed and asked God to heal or or take her into heaven....watching a child suffer has to be one of the hardest things to watch and also make sense of. Todd and I felt wasted and hopeless. The next morning Kourtney woke up and said, "Mommy, you and I are going to make it through this". I couldn't say anything, during the day God gave me so much Peace it almost seemed I was in a state of shock. That night God spoke to me in HIS small voice and said, "Janelle, Kourtney's life is going to serve more of a purpose through her life than through her death, I have given her to you to help serve this purpose, hang in there and I will show you great and wonderful things, don't give up."
I still pray earnestly for Kourtney's total and complete healing, I always will but I honestly think that Kourtney's life will be a constant reminder of God's Amazing Love and Grace, even through the most difficult times.
We will keep you updated. Thank-you for your prayers.
I bought her lipgloss today, she put it on, looked in the mirror and said, "I look beautiful." That's what I call grace.
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