Thursday, March 10, 2011

March 10, 2011

It's been a long week. The North Carolina trip came together, and fell apart. The UNC coordinator at Dr. Escolars office now says that Anaya does not qualify for free flights unless we commit to come every six months. It's too much to go back in September at the start of the school year. We've decided to take Anaya to the Alberta Childrens Hospital for a reassesment by the nuerology team there, and put our heads together with a tube feeding nutritionist and the palliative care team.

If we still need to see Dr. Escolar after that- we will find a way to do it without having to be a part of their Krabbe Study. I'd like to thank my Father, my Friends and our Blog Donors for their willingness to help us fund the North Carolina trip. The $1500 collected from the blog donations will remain in Anaya's account for her future needs. Right now we have a dire need for breastmilk and we will need to have some shipped in.

Anaya cut 5 teeth in the past week. Poor baby. Her mouth is so sore. The introduction of blended solid foods continues to go well. Yesterday we added egg yolk and beets to her list of accepted foods. We need to make certain we meet her caloric needs while ensuring her comfort. She's otherwise healthy and really enjoyed moving her limbs in her bath yesterday. She shows so much awareness at times. She tries really hard to move her arms- they just don't always go where she wants them to. They shake with effort, like a parkinsons patient. Yesterday I helped her reach her hand to her lips. She found it interesting. :)

Brent has been leaving at 5 am and getting home at 8 lately. We chat for a bit and he eats, and then we put the kids and ourselves to bed. I owe so much thanks to Lois and the Kootenay Christian fellowship for making us meals for the freezer. It cuts down on my dinnertime stress in a big way. And they are delicious too. On Sunday I asked for prayers at the church that we would find someone to accompany us to NC, and one of the women at church, a nurse, volunteered to come. I'm so glad I started attending their church. These are good, kind people who are fun and lively in their worship.

Solara and I are learning how to bridge our grief and stress to get out of a state of 'alarm' and into a place of contentment. Emotionally Solara's needs right now are that of a younger child. Our councellor says the best thing we can do is meet these needs, give her more attachment, more assurance of her importance in our family. She fears death, the idea of it and it's grossness. She has a vivid imagination and is now convinced that I'm going to die too. I just take her in my arms and hold her close and try to assure her that I'm not going anywhere.

Ah. What a week. At least we are all alive and well, and together we will get through this.


  1. Great post my friend. Like princess is happy in her new place. Hope you found someone to go with for the trip. Forgive me my ignorance, but how necessary is that trip to north Carolina? What do you mean she doesnt qualify for free flights? Sorry for my ignorance again.

    If you come to the childrens I hope I can go and visit the little warrior!!!.. Big hugs!!!

  2. Felipe,
    When we contacted NC about bringing Anaya there they said they could pay for the flights from an American city if we let them do an MRI of her brain to add to their reseach data on Krabbe kids. So that part was supposed to be paid for, but we need to account for our own lodging, food, travel etc for a 2 week stay.

    You'd be very welcome to visit us in the Childrens Felipe.

  3. aw solara. hugs hunny. i used to worry when i was her age too, i think maybe its a normal growing pain amplified in the situation. xo.
    so great your having open family couselling/discussion for her. this is a really really good thing. love as always to little one.
    camara i think of you so often. my miilk supply is decreasing and i wish i could help more. i missed sending this time but will keep my stash growing (have only maybe 25 oz/5 medela bags) but i will add when i can. when does grant come/go next calgary/nelson? if it is awhile maybe i can send what i have sooner, i mean once it get a bit more. lemme know. xox. love and love and more love.
    ~ heather

  4. So much happening...I hope Anaya's teeth aren't bothering her as much. Poor muffin. I'm happy to hear that Solara is attending counseling, which I know from personal experience can help so much (it sounds like you are too?). It must be so scary for Solara, growing up so fast by learning about death and dying. Glad Brent is working, but boy those are some long days he's away and you're on your own. Camara, I'm wrapping my arms around you and sending such big hugs to you. xo


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