Tuesday, February 22, 2011

Feb 22, 2011

This valentines day my daughter asked me why people kiss with their lips. I contemplated for a while. I think the lips are one of the most sensitive places on a person. When we press our lips to something we can really feel it. We are close in, to smell, to feel, to hear. When I kiss Anaya's forehead, or her cheek, I can feel her soft baby skin beneath my lips, smell sweet apricots and hear her breathing. A kiss is intimately getting in someone elses space and showing them love :)

Anyways, enough about kissing. I have awesome news. Anaya is doing great this week. There has not been any worsening of the seizures, she's healthy and she's tolerating new foods!

That's right! NEW FOODS!

We've been blending bananas, yams and avocados individually this week and trying her with them. She loved the bananas, loved the yams, and just had her first avocados! I'm excited at the idea of being able to meet her dietary needs without having to rely solely on breastmilk donations. The milk donations are slim nowadays and I've been feeling panicked. With luck we will be able to feed her a bit more real food each day until she gets most of her needs met that way. Right now we give her an ounce or two of real food a day and about 30 ounces of breastmilk. Tomorrow I will give her 3 ounces of real food. An ounce at breakfast, lunch and dinner. We have to be careful to ensure she tolerates the food well and does not become constipated, as children with her condition often suffer from bowel impaction.

Right now the little princess and I are sitting in the livingroom watching Solara play a game with her friend. It's actually relatively quiet tonight. Thank goodness. I had a long day of cleaning today. Brent got another load of stuff from the other house today and he's unloading the truck now, alone in the dark ... Though it never really gets dark in the city. I'm having to get used to street lights again. And traffic sounds. It's not so hard. I like our new little place. It's clean and bright. We've found lots of the furniture items we needed too :) we all have bedframes now, lol.

I'm still waiting to get an appointment with Dr. Escolar in North Carolina. Lots of Krabbe moms have told me that taking Anaya there is a
must. We will make it happen!

I'm not sure if it's all the bustle of moving or what, but I've been feeling content lately. Perhaps it comes from knowing we are doing the right thing for our family. Brent also got a job offer that starts in March and we are pretty stoked about it. He is subcontracting as a welder's "helper" on the Harrop ferry refit crew. It's going to be a challenging month with him working 12 hour shifts, but it will be worth it :)


  1. So happy to read this post... Awesome that things are working...slowly..but working. Good to know the little princess is eating avocado...that's such a good food...

    That kissing post was interesting..and funny too.

    Say hello to the little warrior..

  2. Hi Camara, just wanted to say we are still out here and following yr blog. So happy to hear Anaya is doing well, and that you, Solara & Brent are all happy in your new house. You are in our thoughts & prayers. Love Sarah, Richard & Nathaniel xxx

  3. Hi, It's really nice to hear of all the changes. Glad Anaya is experiencing new stuff and we just love hearing about how everyone has been doing. Wish we could visit more but we are thinking of you all, all of the time, Love to everyone, Al and Eliesha.


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