Change of Plans and B is for Babboe

So...yesterday evening, Keira's dietician emailed me to see if there was anything else she could do for us. As I had been saying for months (or so I thought), I told her to let us know if she came across any higher-density foods that would allow us to feed Keira more calories with less total volume. She responded immediately with, "You have tried the 1.5 [calories per ml as opposed to 1 calorie per ml] formulas, right?"

What?!?!

Well, no, actually we hadn't. I don't know why we hadn't spoken of this, at least not recently. After talking to the doctor today, I remembered that a very long time ago, we discussed this option and opted out because of the potential for the heavy formula to sit in her stomach like a slice of cheesecake. But it's worth a try. Because I'll only have to get 400 ml in her each day rather than 600. The doctor said he's going to feel like an ass if this is the solution for us. I love him even more.

Also, yesterday, a friend of mine who is less-known by Keira held her for a bit. After having had a really good day, Keira wouldn't look at my friend and started refluxing almost immediately. I'm thankful for that little window because it reminded me that Keira's increased vomiting could be that she's reacting to the changes in her life lately (ie. the boys are back in school; I'm often gone during the day; we've switched her caregivers around a bit; she's done with her beloved OT...). I mean, I know that she's always been prone to getting overwhelmed and overstimulated, but I hadn't quite been able and/or willing to see her vomiting as another manifestation of this.

So, we're holding off on the GJ. Going to try a new food and help her to regulate her sensory systems again. We'll see what happens. We had Keira weighed today to get a baseline before starting her new food. She's down over a pound since last week. Eek!

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I'd like to introduce to you R Life Gives. It's a nonprofit organization that our cousin recently started for the purpose of helping families like ours with specific financial needs. He chose Keira to be the first recipient of this giving and I'm so excited! The idea is much like a Go Fund Me account, though R Life Gives will not get a cut of the donations (I've heard that Go Fund Me takes about 30%!?).

I would encourage you, if you would like to help fund this awesome bike for Keira, that you do it directly through R Life Gives' website. http://rlifegives.org

Just a reminder, the bike will be imported from the Netherlands. It costs $2500. The company, My Amsterdam Bike, has actually donated the first $100 because they thought this was such a neat gift for our girl. Once in our possession, we'll be able to take K along on family bike rides by putting her in the box in her Tumble Form chair or her wheelchair. She's going to love it!

If any money is raised in excess of the amount needed for the Babboe bike, it will go toward other medical and adaptive equipment that will make Keira's life more easy and comfortable. Our unofficial wishlist right now includes a medical-grade scale, an iPad with an assortment of adaptive applications, a "button" and transmitter for Keira to be able to operate various household devices (i.e.. fan, iPad, blender) and toys, therapy-grade headphones and an assortment of therapeutic music CD's, and a baby recliner.

Thank you, thank you, thank you, in advance. We so appreciate you all!