Well, we're getting optimistic and giving Ashley a bath this morning. She coughs and sputters with each turn and turns a little blue around the mouth, but then settles and returns to regular breathing. Alex went to work today, we figured he might as well. Ashley seems to be getting better.
We'll try some formula again today. She's been tolerating water through her G-tube, throughout this time, but each time I have tried formula, she has started vomitting. So, we'll dilute the formula and borrow Hopey's feeding pump for Ashley, and let the formula drip in slowly.
So, I do not think I will post again tommorrow, unless something happens. I'll put another update on here in a couple days. Thank you sooooo much for the prayers, the thoughts and the helpful, supportive comments. Even when someone writes that they are thinking of us, it is meaningful. Thank you.
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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:
HI Jolene & Family,
I really appreciate that you continue to keep us all up to date on your blog. I am thinking of you & praying for you all today. Thankful that Ashley is peaceful but wondering with you what this means. Miss you all.
Love,
Ange
i love baths,enjoy Ashley :)
Always glad to read your posts, thinking of all of you so much!! We continue to pray for Ashley, knowing that God's ways are higher than ours! We won't understand everything here on earth, but we always know He walks with us through everything! Be assured we are praying for you!
I realized today I hadn't been on the blog in a couple days - glad to hear Ashley is feeling a little better today. You are doing an amazing job with all the kids and to be kind and take the time to share with all of us too, thank you.
She is truly an amazing little fighter..she must get that from her incredible mom & dad.
Sending love, thoughts and prayers your way.
Sally
You have amazing strength Jolene. You are reminding us all to love more deeply and to hug our children more often and tightly. I've been thinking of you and your family a lot lately.
Hugs,
Pam Taylor
Hi Jolene and Alex,
Thinking of you all this morning. What an up and down few weeks you've had.
Gavin noticed Brodie was away from school yesterday...is he ok?
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