Well, Hope is managing fairly well. She's still coughing up yellow stuff, but she's managing to get it up and her breathing is not laboured.
Ashley surprised us by throwing up on Friday night. Just after we arrived at the hotel in Brandon for my Grandma's Christmas gathering. She must have had the flu because she threw up again the next morning and was sick the whole weekend. Yesterday, her breathing was so laboured that I called Dr. Harlos to take a look at her. She's looking a bit better this morning, but still struggling to cough up the secretions.
To top it all off, I was sick with the flu yesteray and have never been so sick in my life. Today I am sitting her typing and realizing that I better go lie down reall quick...I still don't feel so great!
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Ashley and Hope were born with Adenylosuccinate Lyase Deficiency. This metabolic disorder left them with a damaged brain resulting in seizures and profound psychomotor delay. They were not expected to live past infancy. Although they were palliative care, we kept them at home to love and hold. Ashley died on March 18th,2011 (6yrs old) and Hope followed her home on August 14th, 2011 (4yrs old). We now continue our journey as a 'Family of Four'.
3 comments:
oh Jolene - you have had quite some hurdles. I hope it's all uphill from here, no more flu or colds. Will keep you in our prayers. Love you so much, Madelaine
Hi Jolene,
I just read your past month - wow - what a month for you! You are endlessly in my thoughts. I wish I lived closer and could help!
Karin
I just got home and went on the computer and watched your smile box. What lovely pictures. My Ashley was telling me that Ashley had a few rough days at the first of this week. So glad she has improved. I can't believe the change in Hope. How wonderful to see her lovely smile and see her so alert. Thinking of you and yours and keeping you in my prayers. Marie McConnell
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