Not much of a change for Ashley. She has been limp and lethargic all day, she barely opens her eyes. No seizures, no coughing...just lying there with a glazed look. She was breathing fast (rates of 70 - 80) all day and now her breathing has slowed down a bit. Not sure if that's a good thing. She really needs to cough to get that stuff out of her lungs. The slowed breathing may indicate that she's getting tired. We'll see.
We were so blessed to have phone calls and visitors today. I didn't feel alone at all. Thank you so much for the prayers and the thoughts that come through comments, email and Facebook. It really is valuable to us. Alex is so happy to be home from work and able to just stay home for the weekend to be with Ashley.
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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'.
7 comments:
Oh boy, I don't like the sound of this, you're always so optimistic, I feel uneasy now...thanks for the updates, glad you weren't alone today. Take care, love and prayers and hugs to all, Kt.
If we can do anything at all to help Jolene, please let us know.
Janice
Glad you had some visitors and gladder yet that X can be home (long weekend too) for a bit. Thinking of you.
Judith
Will continue to pray for you. I usually sing Emily a good night song with her name in it. She then wants me to sing it with other peoples names in it. She request Ashley's name a lot.
Jane
Thanks for the updates. I'm sorry you have to go through these sad times.
Helen
My thoughts and prayers are with you all.
Deb L
Thinking about you & your family often.
Keeping you in our prayers.
Brenda & Ken
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