When my 14 year old got out of the shower tonight, she told me that sometimes she wonders how long Bella will live. The very next moment she added, “But there’s Sarah and she’s 21.” And then I was grateful. Grateful for the internet. Grateful for blogs. Grateful for people that open up their lives and hearts for all of us to see. Grateful that we aren’t walking this road alone. Thank you.
In Bella world, things are good. She is up to HME trials of 30 minutes twice a day – yeah!!! We are trying a new regiment of diuretics. We are switching formulas to something with probiotics that will hopefully help with our GI symptoms of late. And I double checked, it’s lactose and gluten free. I’m pretty paranoid about that. Last visit they tried to add something with both milk and wheat - nope says Mama. Oh yeah, says the doc. :) Oh well, at least we all have the same goal – a healthy, happy Bella.
Oh that top picture is my favorite!!
I still can't believe with all she's been through that she can come off the vent with no oxygen. Amazing!
The things are older ones say,that pull at heart strings.Make us smile and cry,simultaneously.We here, are forever grateful to be journeying alongside some of the most amazing people,amazing children,that we are blessed to know.Virtually and other wise.
Love all the pictures and so happy Bella is holding her own.She is a miracle.
I cant believe how big she is getting. I too love your blogs and that I can try and keep up with all the people I love so and miss so much through them. I love your honesty and openness.Such a beautiful girl with an incredible spirit. I love you and her!
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