Tuesday, February 22, 2011

Sola's Spring green :)

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 :)

Friday, February 18, 2011

Feb 18, 2011

Happy Birthday to Anaya's Daddy, my wonderful partner in life, Brent.

Anaya has had a few good days since recovering from last weeks illness. She might have had "Rosella" Baby measles, but we can't be sure. She is in good shape today. Brent's happy Anaya is having such a good day on his birthday.

We are very fortunate as this week, both our families chipped in some money to help with our moving expenses and with taking Anaya to see a specialist. We have also had more blog donations now we've raised $1100. Thanks to everyone who has helped out. We really appreciate it.

We've sourced out a few furniture items and built Anaya a special change table. It has a padded foam top covered in chocolate brown vinyl. It was fun to build something special just for her.

We found a old white wooden bedframe for Solara. We told her she could paint it whatever color she wanted and she picked this vibrant spring green. It's very bright. It makes her happy.

Sunday, February 13, 2011

Feb 13, 2011

This morning there was a beautiful sunbeam in our kitchen. I had placed Anaya in her mobile-crib unit in the kitchen, and her face was bathed in it's warm glow. She's finally started to feel better after a 4 day fight with some unknown virus. It was very unsettling to see her break out in a rash, have a high fever and even her eyes were bloodshot. We are so glad that she is back to normal.

We've almost completed our move into Nelson. The majority of our stuff is now at the new house and we just have a couple more loads and clean-up duty to attend to at our old place. The man who owns the house we are renting, Tom, is a really swell fellow. He put in new carpet in the living room, and even replaced some outdated appliances that were not working well. He likes to say hi to Anaya every time he comes around the house. He's a grandparent himself.

Monday morning I will be on 103.5 The Bridge Radio station talking about Anaya's need for fresh local milk donations. Anaya is still intolerant to all the formulas that we have tried. We've tried the Dr - suggested hypo-allergenic ones too. All of them make her violently ill. She can't keep them down, she gets horrible stomach cramps and last time she threw up blood. Breastmilk is best for my Krabbe Baby. We recently tried introducing blended banana in the milk and that went ok. We just have to introduce the foods slowly and one at a time. I have the "Home made Blenderized Food for Feeding Tubes" cookbook and I hope to use it more. Right now she still needs 1 L of breastmilk per day. Anyone wishing to donate breastmilk in the Nelson Area please contact me at (milkinnelson@gmail.com) Anyone who would like to help Anaya by contributing financially is welcome to do so by clicking the "Donate Now" button on the side of the blog, or by contacting myself or The Bridge Radio station.

Yesterday when the landlord was laying the new carpet we had to move a bunch of stuff into the kitchen to make room. This is a picture of Anaya having a nap. I could have made myself a cup of tea while sitting in the rocker! Looks like the last tennants stained the back of the stove, but it works.

We are still looking for furniture for our home. We need a few things because our last house was fully furnished and we had to leave the furniture there.

We are looking for :
2 Queen Bedframes (Metal, wood, whatever will get us off the floor!)
1 Twin Bedframe for Solara (Our 8 year old)
Bedside tables
Wooden Chairs for the Pine dining table that Penny and Garth gave us
A wooden Dresser/ Armoir / Shelf unit for Anaya's medical supplies and clothes

If you have any of the above items that you'd like to sell or give away please let me know by phone : Camara 250-509-0593

Wednesday, February 9, 2011

Feb 9, 2011

This morning Anaya has a fever and is breathing very shallow rapid breaths. I'm concerned. We'll be keeping a close eye on her today. The oxygen helps keep her pink. I hope she will beat this bug. She just got better from the last one.

Tuesday, February 8, 2011

Feb 8, 2011

Anaya has moved to Nelson! It's been a hectic week. We were fortunate to find a house we could move to right away. We've been packing and moving and doing a lot of cleaning the past few days. It's hard work. I keep telling myself this is what is best for Anaya, best for our family. We are so sad to move out of the Procter community. They've been such an incredible support. And the place we were living in was a dream. Sigh. The fridge in the new house is broke down and I can't get a hold of my landlord. Hopefully this isn't the shape of things to come. The dryer is on it's last legs too. We are pretty happy with the new place. It was recently repainted and they are putting new carpet in the living room this week.

We got Anaya's "station" all set up in the living room. She's our hub. Solara picked the western room and she can't wait to unpack her toys.
Brent and I are getting lots of exercise moving everything. Anaya's been going on long walks with the nurse while we unpack.

I will blog again as soon as we get our Internet set up. I'll post some pics.

Love to all!

Saturday, February 5, 2011

Feb 5, 2011

Just a quick post to let you know that the last few days have been ok. Really busy trying to organize the move and the trip. Donations are up to $800 now! We are very grateful to everyone who has contributed. Thank you :)

Wednesday, February 2, 2011

Feb 2, 2011

I have great news! We've rented a sweet little place in Nelson and will begin moving in pretty much right away.

Anaya has had a very good day, after a not-so-awesome night. She was up quite a bit with bad secretion issues. I suctioned her so many times I lost count. I'm really hoping that tonight will be better. Not being able to sleep because Anaya is gurgling loudly and having wet wet breathing is not fun AT ALL. I'm happy to say we noticed less seizure activity today.

I spoke to Dr. Escolar's assistant in N.C about bringing Anaya down. We are making arrangements. I think we will take her there in the last week of february. I have to call the BC medical in the morning to find out if they will cover the cost of the tests that they want to run on her while we are there - and if they will cover any of the other expenses. I should know tomorrow what is going on. You should know that the blog donations now add up to more than $300 in the past 3 days! Thank you so much to the people that help out even a little bit!

I got approved for a cough-assist machine for Anaya. Hopefully it will be shipped here soon. It is basicly a two way ventilator that puts air into the lungs - and then sucks it back out quickly to imitate a cough. It should help her keep her airway clear and make a HUGE difference (I hope). Thank you to Eric in Israel for telling me about it. We will probably use it on her twice a day for 5-10 minutes to get the wetness out of her lungs. I'll know more about it when it gets here.

Tuesday, February 1, 2011

Feb 1 2011

The picture from the last post was taken a few minutes ago as Anaya sat in her chair in the sun. We've had to paint her tongue with gentian violet, an antifungal medicine, because she has thrush real bad right now. I think the antibiotics caused a yeast overgrowth. Poor baby - yucky itchy mouth must be awful.

I've been trying to reach the Specialists office this morning to get a booking to take Anaya to North Carolina but they haven't called me back yet. As soon as I have a date I can find out if any of the trip will be covered by medical. So far we have recieved almost two hundred dollars in donations from our readers towards the trip/move. Anaya's "uncle Grant" has also promised some money towards the trip. We are so appreciative. Thank you so much.

Last night Anaya had the worst seizure activity I've ever seen her have. Her whole body was convulsing and she was very distressed. Add to this that someone left a nasty comment on my post... What an awful evening. I couldn't help but respond to this person, as I was hurt and angry. Whoever it is, I hope they quit reading my blog. They don't deserve to share in this experience with us. I'd like to know who it is, so that I can be certain to keep a distance from them. I'm going to let it go now. None of it is true, or relevant or helpful in any way.

I took Solara to see the Dr. And we got a referral to a child councellor. I hear she's a good lady. I have an appointment for myself tomorrow, to get myself some mental/emotional help too. Everything is so overwhelming right now. It feels like the world is coming apart by the seams. I want to keep it together to be strong for my baby and my family. But I feel stretched so thin, so tired.

I want to thank you, reader, for being here for me, for all of us. I lay bare my soul to you because I need the support and understanding. Know that I read each and every comment of love and support and take it to my heart. I know I'm not alone in this, and I'm thankful for you.

Gentian violet lips