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With all the issues that Ava has been through, how will this affect her long term. Are these things that she will always have to deal with in her life? Or is there long term outcome with all these Dr visits?
Ava has a progressive disease that has no cure. She will slowly get worse until her organs fail or her immune system fails (and she gets sick from that). Our hope is that it will progress very slowly and she can live into early adulthood. Her body doesn't make enough energy to keep everything going so it eventually will take it's toll on her. Mitochondrial disease is a sad, terrible thing.
As of right now, Ava's liver and panceas aren't doing their best, which is why her blood sugar keeps bottoming out.
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Last edited by Ditzzy; December 25th, 2010 at 06:49 PM.
Reason: spelling
She is such an angel and such a beautiful little girl.... I will never understand why things happen like this but I know that every second you have with her is a blessing.... we'll continue to pray for her!!
Hope, you know I love you, and I love Ava. Every time I think of this, I feel ill. There are no words, but I have always been so gladto be your friend and know your girl. I pray for the best of everything for her.
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Thank you Jaidynsmum for the siggy!
You are one brave Mama. I'm touched that you have allowed us to share in your and her journey.
I worked with a boy with the same disease when I was in college and grad school and he was 14 then and starting to attend a regular high school after growing up in a special medical needs school. I believe he is still surviving... his life was very difficult but he was a blessing to know at that time!!! I know all situations are unique but just thought I would share what a blessing and a fun child this boy was at 14 even with the challenges he had to face.
I worked with a boy with the same disease when I was in college and grad school and he was 14 then and starting to attend a regular high school after growing up in a special medical needs school. I believe he is still surviving... his life was very difficult but he was a blessing to know at that time!!! I know all situations are unique but just thought I would share what a blessing and a fun child this boy was at 14 even with the challenges he had to face.
That's our hope is that it progresses slowly. I'd love for her to go to high school and college.
I'm sorry I didn't clarify Ava's disease to you all. It's been very hard to adjust and everytime we think we're catching up, something else happens. She spends almost half her life in the hospital and We're working very hard to have a way to keep her home more often. A medical home.... Even the "stress" of Christmas totally knocked her for a loop. She doeasn't handle excitment or change well from a physical standpoint.
(((hugs))) I think of you and your family so often Hope, I feel so thankful for getting to know your family, and that you share your story and journey with us. You know we love Ava so much
Maybe they'll come out with some new treatments for her, Hope. She's so young, and it seems like they discover new medical breakthroughs all the time. She's definitely a fighter, and I feel so blessed to know both of you! Hang in there, Miss Ava. You're an inspiration to everyone.
