Hope you are such a strong, little girl!!!
This morning, Hope has given me some little smiles in between the seizures and coughing. Her eyes get drowsy often, and I think she did get some sleep last night. Alex was up checking on her a lot, last night and said that she was sleeping until the seizures started closer to morning.
After the scare we had yesterday, I am very surprised to see her doing so well today. Her color is good, and her breathing is steady, although she's still coughing up a LOT of foamy, white stuff, and occasionally some thick, yellow stuff. But, NO FEVER! The fevers scare me, because Ashley's downhill slide involved fevers which she had never had before. Hope is the same, and I can't remember her with a fever before this. We are still probably looking at a grim picture right now, but like Ashley, we won't know how many dips there will be, until the end. So, cuddle time has become a priority.
Thank you, again, for the supportive emails and comments. I did notice that something happened to some of the previous comments (they disappeared), and I have no idea what went wrong. But don't worry, I did get to read them.
5 comments:
I think there's more than one strong girl in your family!!
oh Hopey. You are a strong, sweet little girl. I feel for you.
love you Jolene.
xo xo Camille
hold her tight and often! Enjoy every moment you can!
Thinking of you!
Karin
Always praying! Hope looks so big...she's really grown.
-Elise
Jolene,
I can't believe that I stumbled upon your blog today. My daughter Bethany is 7 years old and was diagnosed with Adenylosuccinate Lyase Deficiency at the age of nine months. She will be 8 on Saturday. I read your blog and I see my life. Your little girls actually have so many resemblances to my little angel. Bethany is showing signs that we may be facing end of life with her. You know better than anyone that we can't be sure the when, but I feel it in my heart of hearts. I do not want to intrude on you but if you would be interested in corresponding with me I would love that. My email is c.riggs.1@hotmail.com. I would just love the opportunity to fellowship with someone that is walking in my shoes. God bless you and your family.
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