Gentle Tasks

She awakens with a startle. Her long lashes flicker, sweeping down to brush her cheek, flying open wide. Hazel eyes stare through me. She moans and I hear her voice in my heart. "Mama?"
"Yes, little love. I am here. Good morning sunshine. It's a beautiful day today." I move my fingers softly over her golden hair, tracing hearts on her forehead and running a tickle down her nose. I kiss her cheek. She moans again.

"Mama, I hurt."
"I know your hurting sweetheart," I whisper "let's just stretch out your legs gently and get you out of this wet diaper. Then I will give you your meds and run a bath for us."

I pull the covers from her, removing the cocoon of warmth that has surrounded us. Disconnecting her feeding tube from her stomach and removing the oxygen prongs from her nose, I lift her to the end of the bed and set her down, propped gently on a fluffy pillow. She lets out a contented sigh, stretching her legs straight and pushing her body as hard as she can against the pillow.

"Ha!" I laugh at her. "Must feel good to get straightend out after a night of sleeping on your side all curled up against mama." She mews a little sound at me, as if in agreement. I dash to the other room and start the bath water. Nice and warm. Returning to her in seconds I say "I've got the bath going, soon you will be floating in the nice warm water and I will sing to you."

Pulling the snaps of her sleeper open the fabric presses against my fingers in all it's baby softness. What will I do when she doesn't fit in sleepers anymore? I wonder. Removing it from her is similar to undressing a sleeping person, or someone who is unconscious. Her limbs twist easily and fall under the influence of gravity and I must be careful to withdraw each one with care. Removing her diaper she flinches. I notice a redness around her inner thighs where her beautiful baby chub has deprived the skin of oxygen and a rash is forming. Every day I am careful to clean and dry my little love, and yet still we fight these darn crease rashes.

Determined to win the war of the crease, Anaya and I climb into the tub. I hold her floating in the water, using my knees and feet to position her so that I can use my hands to wash first her stoma (G-tube opening in her tummy), then her body, then her hair.

Her back arches and her legs push against the wall of the tub, a firm and deliberate movement on her part. "Push! Push! Push!" I encourage her and she pushes again. Taking a deep breath in she relaxes. Her skin is flush, her lips reddened with highly oxygenated blood from the exertion. She sighs and in that sigh I hear her thoughts.

"Feels Good! LOVE floating! Love Pushing!"

Curly waves of wet golden hair float around her head and I wish I had a camera handy. My fingers find the knots in her neck muscles and I massage them gently, working from her shoulders and up her neck to the base of her skull. Like anyone else Anaya enjoys having her neck and head massaged. "mmmmmm" Contentment.

Cleansing finished it's time for swimming like a mermaid. I begin singing songs from "The Little Mermaid" starting with "Part of your World." Many of you may remember this song from your youth, or your children's youth. Many may remember it from the last time I got good and drunk at the Procter Community Hall Karaoke night more than a year ago. That was the first and last time I drank that much in the past 4 years lol. I ended up singing "Part of Your World", solo, with no music. And I had fun doing it. Lots of fun. But enough about that.

The walls surrounding the tub echo back my voice and the water surrounding us gives it a richness and a vibrancy that can only happen in the shower (some of you may know what I mean) Anaya sighs and floats, occasionally pushing her legs against the end of the tub, while I raise my voice in a sunny salutation of my little love. I allow the song to take me completely, expelling love and frustration, joy, hope and despair.

"I want to be where the people are. I want to see, want to see them dancing, walking around on those...what do you call them? Feet....Up where they WALK, up where they RUN, up where they Play all day in the SUN, wandering free...wish I could be, part of that World..."

That's the Camara sweetend condensed version.

Oh! Baby needs me got to go.

Home!

Yesterday was our first day spent back in Nelson. It is lovely to be home. The pace of Nelson is like a breath of fresh air - or maybe that IS the fresh air! It was a bit overwhelming at first. The house and the yard were in need of some serious work. I swallowed my pride and put it out there and asked for help. I was fortunate that Amelia, Anna, Steve and Mike all had time on their hands and love in their hearts to lend a hand.

Now the house is clean, the yard is weedwacked and mowed and Anaya and I's bedroom has been re-organized so that it suits us perfectly.

My two close friends from Vancouver, Stuart and John, have come to visit for a while and help me with Anaya until our nursing support kicks in again. They've been an amazing help and comfort. John's been making sure I eat (entirely too much), and encouraging me to take moments for myself while he watches Anaya. I even had a bath. (This is a luxury sometimes!)

Brent is coming over to visit with Anaya for a while today, I think she will enjoy the time with him. I'm going to take Stu and Jon on a tour of our beautiful little town and show them how lovely Kootenay lake is. We walked down by the waterfront last night and I took this picture.



The Koots are home. This picture is dedicated to my friend Cameron.

Photo shoot with a friend :)

Always Broken

I find the post that Natalie wrote to be profound. Perhaps I am "Never Not Broken", perhaps I harness my fear and ride it. Perhaps that's why I sometimes scare people with my intensity and my inability to see obstacles that cannot be overcome.

I find most obstacles overcome able. I am like water. I flow. Sometimes I fall, sometimes I go slowly, sometimes swiftly, but I trust that I will get to the ocean eventually. I trust and have faith that I will always make it around the bend, and over the next set of falls.

Maybe one day I'll have someone to share my journey with that is on the same page as me, or maybe not. It must be intense to be around someone like me who is "never not broken".

My baby girl lays beside me, and I listen to her breathing. Her life has changed me in ways so profound I can hardly explain with words. My little teacher. She has taught me more than anything to live in the moment, love with all your heart, give everything you have, and hold nothing back, even if it breaks you repeatedly. I am still whole in my brokenness.

The fundraiser held over the past 48 hours has generated some money. It is enough for me to stay with my baby, enough to buy her carseat and supplies, it has bought us stress free time together to LIVE and LOVE. I thank everyone for that with all my heart and soul. Our moments are precious. Not just mine and Anaya's but each and every one of YOURS too. Be sure to make certain the people you love in your life know it. Take a moment to truly connect with their soul, bask in the profoundness that is the joy of human love and connection. It doesn't get any better than that folks. It just plain doesn't.

I LOVE YOU ALL.
(Even the hater that's been sending me nasty email all day!- You must really have a lot of hurt inside you that makes you say such ignorant things)

There's always room for more love - and if there isn't room, it's your own issue to deal with.

Goodnight Yall!
P.S- Texas, I'm so gonna whoop ya for missing this one. Where the heck are you?

Fresh from the bath!

Anaya being transferred

Angelic Anaya

A post from Natalie deGoey

Never Not Broken


So, I had a pretty intense experience this morning, and I wanted to share it with all of you, as you have been so immensely supportive of Camara and Anaya over the last little while, and I found it to be extremely powerful and timely!

Jennifer Williams was kind enough to come over this morning to hang out while I went to a yoga class... I have a very regular practice that is central to my life and a big way that I manage stress and anxiety, and I have been feeling the loss of it the last couple of weeks, with wanting to give all my energy to Camara and Anaya... I realized the other day that if I am running myself ragged, I am not going to be able to keep giving them everything they need and deserve, and I think balance is important in all aspects of life, but possibly more so in the most trying of times!! I have grown up watching my mother be an entirely selfless caregiver, and it isn't the right way to go through life - "me" matters too, and helps you be more effective and helpful to others! Anyways... I decided I needed to re-focus and get centred, so I could come back raring to go, so I went to a Hatha class with one of my favorite instructors (Julie Peters, of East Vancouver Yoga Studio and Yyoga), knowing that I might be a bit of a wreck, but that it could only do me good.

No sooner do I sit down on my mat, than she starts speaking in her wonderfully soothing voice (she does poetry slam too, people... she is amazing), about this "new goddess" that she recently learned about. I don't think the goddess is new (haha), but it was new to her, and certainly to me... I will try to sum it up as best I can, and there is a link to a lecture at the bottom of this email that goes into more detail.

So this goddess is called Akhilandeshwari, which loosely translates as "Never Not Broken"... when you break down those words, they really mean "Always Broken".... at first this sounds very sad... but Julie went on to explain that what this goddess has to teach us is that "to be broken is its own kind of wholeness"... rather than be contained by a "limiting completeness", she is able to use her constant state of breaking apart to continuously reinvent herself, and wrap herself into whatever shape is required to survive or thrive under any circumstances. This idea kind of spoke to me of my dear friend... my soul sister Camara... but it gets better....

The instructor goes on... "so Akhilandeshwari has this RIDE...", and we all giggle a bit... "and her ride is a Crocodile", we giggle some more... but we aren't laughing for long... or at least I'm not, because the next thing she says starts the tears just streaming down my face....
"and the crocodile represents our reptile brain... the center of our fear." The great thing about this goddess, is that instead of giving in to fear, or instead of pretending that fear doesn't exist - of "conquering it", and sending it away from her (which we all know you can't REALLY do, even if you think you have for a little while)... she freaking RIDES on it... she harnesses it, and she uses it, and it becomes part of her power. It flows with her and is a part of her, and it makes her strong.

By this point I'm trying to choke back audible sobs, and I'm feeling like this story is just speaking directly to my soul, as if a window has somehow opened up into my life, and this voice is speaking directly into the depths of what I need to hear in order to keep going. I mean, as if this goddess doesn't speak to who Camara is, and the way that she has turned this devastating situation into a chance to make a positive impact on the world. She takes that fear that she feels about losing her baby and turns into something vengeful and powerful and AWESOME (and I'm using the real meaning of that word here, not the surf-lingo version)... well, she does... and she has, and she IS. No matter what struggles she has gone through in her life (and there have been a few, not the least of which is mothering a very sick child), she always seems to take it under her skin, and use it not as a crutch, but as a way of moving forward into the world with more strength and compassion than any one woman should be capable of... all of these shattering experiences have been part of her path, and made her into the incredible person she now is... and that so many people are touched by, and moved to offer help and support to.

For me, Baby Anaya is the catalyst, and you can't help but love her in all her softness and sweet beauty... but Mama Camara is the power and the fury, and the righteous anger that creates real change in the world. She could so easily have kept her struggles and her fears to herself, and gone along in isolation, grieving for her child, but instead she is fighting.... fighting SO HARD every day to give Anaya and Solara the best POSSIBLE life... a life which includes almost constant hope and determination... and the ability to laugh through tears (or to laugh so hard it BRINGS you to tears)... and she is sharing it with all of us, every day... sharing her struggles... her heartache and her joy... and most commendably, she is asking for HELP! She has reminded us all that we are not alone, and that there ARE people in the world that will do anything to help a friend, neighbor, or total stranger! She has renewed our faith in humanity, and our sense of right and wrong...

I could go on for days, but I just felt the need to share with you the realization that I had about the person that Camara is (I always knew it, but this goddess finally brought it all together for me), and thank everyone who has contributed time, money, thoughts, prayers, energy, food, cars, milk, etc and especially love. It helps so much more than you could ever realize, and as time goes on she is going to continue to need your support, but I know she is also going to continue to surprise us all with her strength, and her ability to be "Never Not Broken", and show us all what it means to be a warrior!!

Here is the link to the seminar about the Shaktipat goddesses, if you're interested in a more 'expert' take on Akhilandeshwari and her crocodile ride...

http://instantteleseminar.com/?eventID=19839927

A Message from Anaya's Fan Adriana Araujo Curvo

I've just woke up and run here (to Facebook - The Anaya Initative), because I think of this family often. And I had this message in my dream: we all want to help Anaya's family... and no doubt Camara needs to get some care time to herself, like the massage someone set-up for today, and I believe if Camara gets at least 2-3 massages a week it will make wonders to her body and make her refreshed and renewed to have more energy and calmness to give it to her Baby Girl that WE ALL ADORE. I believe we all mommys know how hard it is to deal with a sick child when he/she gets a cold or a fussy tummy and it drains all our energy and I can only imagine, how much Anaya needs her mommy feeling 100% to give her baby girl a 100% of her.

I know we all want to help and money wise many of us probably struggle with only 1 income coming in... but if everyone could give $10 I dont think it will hurt our pockets, but many $10 together will turn into a decent amount that Camara could use to pay for her expenses while here in Vancouver.

But to make it work. We could set up ONE DAY, Tomorrow May 23, for this donation to be made in this matter. And at the end of the day, we'll see how many have helped and take this weight off Camara shoulders. Any thoughts?

To donate please click the paypal button on the side of the blog or click HERE

Time for change

Hello friends,
Anaya and I both slept very well. We are comfortable and have been gently welcomed into Natalie and Geoff's home. Natalie is doing a great job of taking care of us, and organizing people to help me and Anaya. Thank you Natalie - and Thank you to everyone who has helped, or has offered to help in any way.

Today we are hoping to go on an outing to find Solara a birthday present as it is her 9th birthday on May 31. I have a couple of ideas and we'll see how it pans out.

Today I'm also writing with a purpose because I want to fill you in on a major shift that is taking place in our lives.

You may have noticed that I seldom write about Anaya's father, Brent. I also do not write about our relationship, and it's struggles, because I attempt to do my best to focus on the positive. I attempt to use this blog to really express how I'm feeling about Anaya, and to let people know how Anaya is doing.

Brent and I have decided to go our separate ways after a couple years of attempting to reconcile our differences. This happened the day that I brought Anaya down to the hospital to attempt to get some respite and help - as I was throughly exhausted and emotionally drained. We are amiable in our separation, and plan on parenting Anaya together. He is currently moving to his own space. Solara, Anaya and I will live alone in our little rainbow house. Me and my girls :) Brent will be coming to visit and help care for Anaya as his work schedule allows, as often as he wants.

The timing for this separation is intense, however it had to happen and I am glad for it. I do not feel incredible sadness or loss. I feel friendship and love for Brent and I pray that will remain in my life. I have some fear of managing my two girls, my special little loves by myself. But I have confidence that this is for the highest good of all parties and that I CAN DO IT! We will need the support of our friends and family to establish a place of love, safety and security within our home. Help with tasks, etc.

At the moment I can feel a support network of love holding us up, and a security and confidence within myself that says I cannot fail.

With love to you all,
Camara

Transfer Day of Chaos

How can I describe to you the feeling of floating in a sea of uncertainty? For the past 10 days I haven't known what our future plan is, when we will go home, whether or not we will be transferred to SunnyHill Children's or Canuck place. Whether or not Anaya will live or die. It has been intense, and yet there was no day as intense as today. Let's call it "Transfer Day".

Basically Anaya is stable now. The new medicine, Keppra, has quieted her seizures and something has calmed her apneac spells. She's breathing now as she did before - still laboured, still wet or dry depending on the day - but normal for her. We had what felt like tens of professionals in and out of our hospital room all trying to make a plan for Anaya, and yet there were several moments of uncertainty and miscommunication. One person said we were going to Canuck place, another said we were going to SunnyHill, another said we were staying in hospital. I was just wide-eyed and overwhelmed. I felt like saying "Excuse me- Hi everyone, I'm just gonna pack up and go home now ok?" I actually did say that at one point and was convinced that the right plan was to go to SunnyHill and have a proper seating assessment done - even though it meant staying there over the long weekend. The Dr. preferred to see Anaya leave the hospital while she was stable in order to keep her healthy. There are several nasty viruses going around.

So we packed up everything and Anaya and waited for what seemed like hours for the Pro's to tell us what to do and where to go. Then we headed for SunnyHill. Sounds nice right?

I left Anaya in the Van with Brent and walked into make our arrangements and find our room. I was welcomed warmly and gently by some very nice women and taken to Anaya's spot in a dormitory for disabled children. There were three beds, 1 padded jail cell of a crib, and a hospital type crib for Anaya. There was a chair next to Anaya's cell for me to sleep in. I didn't even see a spot for me to put my luggage or her clothes really. That's when the panic attack hit. My vision narrowed to a hazy tunnel and the woman showing me the room was saying something...something...I couldn't make out her words. I shook my head. "NO!" I said and spun on my heel and left the room.


"What do you mean?" The doctor asked.
"We can't stay here" I said.
"Why" The doctor asked.
"I just can't! The hospital said your rooms were like theirs. I was told Anaya and I were going to have a room to share because I have to stay with her 24 hours a day because you guys don't have 1 to 1 nursing support. I can't sit with her in there for a week. I just can't.

My heart was pounding, my chest was tight. I was solid and firm in my stance. I'm certain that some kind of panicked fire was blazing from my eyes and I told the doctor.

"I think we'll just go home now." I went outside to the Van. Brent was unloading Anaya's stuff. "You can put all that away," I said "we can't stay here." He looked at me with a quizzical expression, said nothing and started putting the stuff back in the van.

Grant arrived from Calgary to take Solara for the weekend at that moment and he said "What's the plan?" I almost cracked up. Everyone was looking at me. Brent from the rear of the van, Solara from around my waist, Grant from the right.
"What's the plan?" I repeated...and tried to make my mind think.

I called our hospital unit and spoke with our head doctor. Dr. Jen. She's awesome by the way. I explained that I was uncomfortable with the way the accommodations were set up, discomforted by the feeling of warehoused disabled children. I told her I had decided to go home. Gently she convinced me that Anaya's seating assessment at SunnyHill was too important to miss. I agreed but stated that I couldn't stay there. Nor could I leave Anaya there. Ever. The very thought makes me have terrible pain in my chest and a desire to scream. I'm in no way knocking SunnyHill. Every place has it's purpose. I just have a fear of confined spaces and maybe I'm just too used to having my own space with my precious little love. I'm used to sleeping - at least a little bit. I'm used to brightly lit rooms with flowers and music.

We came to an agreement. I would check in at SunnyHill and then take Anaya "Out on a Pass" for the weekend and come back for her to be assessed on tuesday.

I called my close friend Natalie Degoey from the hallway.
"Nat? Me and Anaya are coming to stay at your house for the weekend. Just me and her and the dog. I'm sorry for assuming this but we can, right?"
"Of course you can, Mara." Natalie said.
"I'd be offended if you didn't assume you could stay at my house!"

So we packed up Anaya again and headed to Burnaby. I was in hyper anxiety overdrive. If I were a chimney I'd be puffin up a storm! My emotions were numb, my mind was empty yet agitated, my driving was erratic. We arrived at Natalie and Geoff's house in one piece. Geoff started making food and I tried my best to organize all of our stuff that we unloaded from the van. I separated it into stuff that Brent can take back to Nelson and things that I need to stay here with Anaya for up to two weeks.

That being done I ate. Brent sat with the baby for a bit and then went out to meet a friend. I slowed down by checking my facebook page and answering urgent emails. I've had so little time for that lately.

I told Natalie that I wanted to write a blog post and asked her to hold Anaya. She happily and cheerfully held her, suctioning her every few minutes as she is very wet. Natalie actually had fun with Anaya and the Suction Machine. She would put it in her mouth and Anaya would bite down on it and close her lips, and Natalie would laugh her bubbley heart out. I smiled and kept writing. I stopped to take a picture for you to see.

Tomorrow I need to find a vehicle to get Anaya to her appointments and to get around. I will also need some volunteers for the next week or so who want to give Anaya and I a hand - I can't drive alone with her legally - - or morally. Someone either has to drive or sit in the back with Anaya to ensure she's ok and doesn't need to be suctioned and isn't turning blue. I would also like to hang out with friends that love me and would like to spend time with Anaya and I. We have time. I'm going to also be doing computer work and web design for a few hours each day because I have not been able to focus well on my work and the bills still need to be paid. Thank God for the help that Anaya's supporters have been giving her towards our needs and her needs!

If anyone would like to provide any additional help or support to Anaya and I while we are alone here in Vancouver (Burnaby), please e-mail Natalie deGoey at natalie.degoey@gmail.com and she will help to organize, as I have NO NURSING SUPPORT AT ALL and will be 24 hours 1 on 1 with my little love.

I should tell you that Anaya did not seem to take much notice of the commotion going on around her. She had a decent day, although she struggled a bit with wet secretions. I hesitate to dry her out too much though - because a bit wet is better than a bit dry. She is content. She had alert moments and certainly enjoyed playing the suction game with Natalie. She has some pain but we've been giving her painkillers to help make her life more comfortable. I can't stand to see her in distress.

I'm certain that there is still so much more to say but I've been writing for well over an hour now and I think I'm tired. LOL.

Love to you all. Thank you for keeping us in your thoughts and prayers. Thank you to Katie and to Seana and to Natures Path and to Natalie and Geoff, to the Dr's and nurses, and cleaning staff, and the friendly maintenance guy, thank you to the lady that made my coffee and the woman who asked to pet the dog. <3 - Camara

Hospital Day 9 (i think)

Time moves in waves here. There are moments of absolute chaos and moments of quiet hissing stillness. Anaya almost died this week. It was intense. By some miracle she has recovered and has stabilized. I am SO glad :) I love having my little teacher around and I will take care of her as long as she wants to stay.

I'm not going to spend forever filling you in on all the bureaucratic BS that is my day to day existence here as everyone tries to figure out what to "Do" with us. But I will fill you in on the highlights. It's gonna be point form because I'm exhausted.

1. The nurses, doctors, OT's, PT's and Palliative Team from Canuck place are all women except for 2 men. That is quite the ratio on this unit! Seriously though. The room will be filled with 10 women and 1 man. Shows how far women have come in medicine.

2. Every single one of them has been kind and wonderful to work with. They all struggle with the red tape as much as anyone else does.

3. I have gotten to see lots of my old high school friends here in Vancouver as they have come to meet my beautiful baby, and reconnect and it's been lovely.

4. I've made some new friends that I find so much love and comfort in their presence. They include Lisa Fedorak, Cameron Stewart, John the Bear,Carey Stacey, Karla, Dr. Jen, Soon to be Dr. Stephanie and Melanie Skolovy-Brodi
YOU ALL ROCK MY WORLD and I am so glad to have you in it.

5. I met another "Camara" she works at Canuck place. ha!

6. You can buy roses made of feathers. Who knew right?

7. Hospitals are NOT the place for healthy 9 year olds. Solara is bound and determined to help me through this difficult time be distracting me with her dramatic antics(ARRGGGHH!!!)I'm about ready to sell tickets to her show. LOL

Well, Here's to Anaya! I'm hittin the hay with my little love cuddled close to my heart.

Prettied up for outside :)

Wide eyes! Bright Soul!

Suddenly very sick

Anaya having her ECG during crazy heart racing/ seizure event

Click here to see video


http://www.youtube.com/watch?v=DenrH7qpWD4&feature=youtube_gdata_player

Hospital Day 5

My sweet baby girl is having a rough time.
It seems like we are getting closer to the day she'll get her wings and fly to heaven.It was a long drive down here. I had to come alone, suctioning her every five minutes - while driving and reading a map. I decided to bring Anaya here because there was a lot of family stress in our house, and I was also exhausted from doing most of the nursing of the previous 10 days by myself. Anaya had been having tons of Apnea or "Apneic events" that had me really concerned as she appears to be uncomfortable and in pain. She needs special care and I'm at the end of my rope.

I wanted to get a respite stay at Canuck Place. It's a lovely hospice for palliative kids in Vancouver, but it's hard to get into. So I came to the Children's hospital for them to Assess Anaya and hopefully get some respite.

Initially it was very difficult here. I told the nurses and Dr's that Anaya cannot be left alone because she sometimes stops breathing or needs frequent suctioning so that she doesn't choke - but they just thought I was being an overprotective mother. So I had hardly any nursing support- i had to beg for them to watch her so that i could go get food or take a shower.

Then they did an oxygen and breathing study on her called an oxymetry. She stopped breathing 373 times in a 12 hour period, long enough for her oxygen levels to go way down, and her heart rate would drop too. Now Anaya has 1 to 1 nursing care (her own nurse). So that I dont have to be nursing her 24 hours a day.

The Dr's are very concerned about her breathing. They suggested we do a study on a steady dose of O2 to see how it would help her. It was a good improvement. She only stopped breathing 33 times and her oxygen levels did not get too low. We discussed the Bi-pap option and it was explained throughly to me how it would actually worsen Anaya's condition. Because she has excessive secretions, the bi-pap would allow more fluid to build up in her lungs, causing lung trauma and pneumonia. It could actually make her life shorter and more uncomfortable. Now that is an explanation that I can understand.

We also talked about pain management. The Palliative team suggested some strong narcotics to help Anaya through her painful spasms. Then I had another Dr. come in and tell me to be prepared for Anaya to stop breathing and die if we used those narcotics....wow was I ever upset. It turns out that it was a mis-communication and that the drugs are safe, they will not kill her inadvertently.

We have had lots of amazing visitors. Friend of mine from high school have been very supportive. Some of Anaya's special milky mama's from the lower mainland have also visited and brought milk, food and love! I'm so very grateful for all of the support. It's difficult to be here but I know that I am doing what is right for Anaya. To get her the help and support she needs.

I don't really know how we are going to get home when we get discharged (whenever that may be)...my van is in rough shape. I can't trust it to make it around the block - let alone 400km. If anyone knows someone who might be able to help with the transmission in a chevy venture van 2004 or of ANY other options please let me know as soon as you can. I'm available on my cell phone at 250 -509 -0593 or you can email me at maraglow @ gmail.com and I will respond as soon as I can.

Thank you and God Bless

BC Children's Hospital

We arrived here. The BC childrens/ womens hospital is a MAZE! I feel like a mouse that has to memorize the little twists and turns. It is not easy to find things here. Good thing they hand out maps at the front.

It's been a crazy long day that I want to fill you in on but I'm too tired.

Suffice it to say that Anaya is doing well. She is not having any health deterioration at the moment. We are here to get a full assessment and access resources for her that we cannot get in Nelson.

We are looking into Bi-pap apnea support and also pain relief/management and physiotherapy support - as well as how to get aids for her such as a wheelchair and special car seat.

I've been so busy taking care of her the last few days that I've let myself get run down. I really need some help and support. I could really use a break. I need sleep. I need a kid-free day. I really hope we can get into "Canuck Place". http://www.canuckplace.org/ It's a hospice for palliative kids here in Vancouver. They provide care so that parents of special kids can have a break from having to manage so much all the time.

I'm so exhausted. It's 1 am here and Anaya's due for a feed. They don't have the nursing resources to let me have the night off...

Thank God for friends like Kyle, Cam and Katie for being my Hero's and filling my day with awesomeness (friendship, food, phone charger, laughter and LOVE!) You guys are the best.

Mother's Day!!

What a beautiful day! I have had an incredibly blessed day. It started with waking up with my two favorite little girls! I came downstairs to a perennial daylily and a home-made pin from Solara. We thought about going out to the Procter Mother's day event at the Procter Community Hall - but Anaya was having a bit of a rough time with her secretions and I thought it might be a bit stressful to be taking care of her surrounded by a hundred people.

I miss Procter. It's such a good community. It's the people I miss the most. The only time I see them now is when I'm dashing around Save-On foods or Ellisons trying to gather up groceries.

I posted a tweet about how I wished I could buy some flowers today to plant in my yard and I got showered with LOVE! Monica wrote me and brought by a gift of money from a lady who said it was for me to spend on MYSELF! (So of course I went and got flowers!) Then I was sitting out in the sun holding Anaya, with Solara sitting on the stool beside me - when a family I don't know arrived with the MOST BEAUTIFUL hanging basket of purple petunias. It's HUGE. The lovely woman introduced herself as Kara (sp?), a reader of my blog. I was blown away by her thoughtfulness and generosity.

Thank you so much!

Anaya enjoyed her time out in the sun, and now we are back inside, just to make certain that she doesn't get too much at once. I love that the sun sets so much later now, that it shines all over my yard and is encouraging the most beautiful blooming rock wall I've ever seen. I feel so happy and blessed for all of the love in my life right now. It seems like these days smiles come readily to my lips and sparkle in my heart.

I just saw a hummingbird zip past me. Apparently it is a good omen. It is said in some cultures that the hummingbird symbolizes Timeless Joy and the Nectar of Life. It is the symbol for overcoming that which seems impossible. - Quite fitting I think.

Some things seem impossible - but they are not always so, just complex. Sometimes the answer is beyond our current understanding...

My little love has grown so much. She is a little girl now. I love running my fingers through her angel silk hair....I'm going to go and hold her now. She's a bit wet in the throat and she needs me.

Happy Mothers Day to all MOMS out there! You are what makes the world go round!

Anaya's Milkmaid!

Rain and Rainbows

There are moments in life that stop time. Moments that surround you completely with their vivid arms of sensory interpretation. I have moments like that quite often. Sometimes it's when I'm with Anaya and Solara, sometimes it's when I'm alone, sometimes it's when you look into the eyes of someone you've just met and find part of your soul staring back at you. Or when a friend comes over and brings you food made with love. The moment can steal up on you. Usually you don't notice it, but if you are open with your heart, and let go with your mind - they come more frequently.

I haven't slowed down much lately. In fact - I find myself so overwhelmed with things that I "have" to do that I have been missing out on moments like that. I've taken on some big projects for my home-based business and also trying to keep up on Anaya's website etc. Having realized my work-aholic attitude last week, I've started to schedule my time as to be more effective and less overwhelmed. So far I'm still behind. I'm trying like anything to catch up but there's always more. I need to find someone who can help with emails and someone who can come to my house and help me clean so that I can spend more time holding my little love.

But it's hard to schedule time for Anaya. I just want to hold her and love her every second. How can I say "These three hours everyday will be just for Anaya". It just sounds wrong to me. I need a duplicate "me" to do the work so that I can just snuggle my baby. We all wish right? I wonder if I would argue with another me. **Laughter** We'd probably both want to spend time with the baby.

Anaya has been having a rough go the last while. Her muscles in her little neck are sore and stiff. She whimpers when she is picked up. She now turns blue even when on oxygen sometimes. She seems to be unable to take a breath. She tries desperately to yawn, but her little chest muscles ignore her brain's request for air. Generally when this happens it is when she is awake. I have been watching her like a hawk, and when I see it I give her one quick puff of mouth to mouth. One puff is always enough to help her muscles remember to work. Then she starts breathing on her own. The times the are a- changing. How I've feared this stage of the progression of her disease. The time when the suffering begins to eat our beautiful moments and I'm faced with terrible decisions. The doctor says that a bi-pap machine at night for Anaya would be like having her on a ventilator. That it would be a life-support. I've always thought that we wouldn't do life support. No "heroic" measures, or crazy invasive machines will be used to keep her beautiful perfect little body alive. That was decided long ago. But where is the line? She needs a little bit of help. The occasional puff of air. The sensation of asphyxiation must be terrifying for her. My baby, my little love. What am I going to do? How am I going to survive watching my baby die?

Well it takes rain to make rainbows.

I got in trouble this week from our nursing company. They are called "Resource-ability" and they get all pissed off every time I mention the names of our nurses in my blog. I've tried to explain to them that I have a right to use the first name of my nurse if given permission from the nurse, that it in NO WAY WHATSOEVER violates their "confidentiality" policy about "Client privacy". Anaya and I ARE the client. Needless to say, there was a bit of a showdown about how Anaya's nurses are supposed to be nameless and faceless. No pictures, no names. I was definitely upset. These women are part of our family day-to day. I trust them with the life of my child. They play a HUGE role. It ended with one of our nurses taking an "Indefinite leave of Absence" which is about to become a permanent leave - how am I supposed to trust someone who ditches me without a nurse for five days? It's enough to make me want to curse publicly.

Thank God Katie is here. Katie from Texas. Katie Shutt of The HumanKindness Initiative. I'm not certain if saying her name three times is enough. This woman has the energy of a supersonic ping pong ball. Her deep throated laughter and contagious smile are seconded only by her boisterous voice that rings in my ears the way sunshine tickles my skin on a perfect day. She came from Texas on Thursday. I met her at the airport in Spokane. It was interesting to meet the face that goes with the voice I've been talking to on the phone for at least an hour every day. Initially it was weired. Like trying to sync my brain into understanding that that body, Katie's little body, is inhabited by a soul much larger, brighter and louder than any other I've ever met. Then we started talking and within the hour we were synced and comfortable. It was an incredibly quick 3 hours of driving. We have a lot to talk about. We are like twin sisters that were separated at birth (at least our spirits feel that way). I've never felt so comfortable with another woman. I feel like I have a kindred spirit, a new family member. I'm so happy about it.

The day after Katie got here we no longer had a nurse, so we've been with Anaya the whole time. Our other nurse, let's call her "Carolla" is away and won't be back until Thursday. Taking Anaya out can be difficult. She needs to travel with her oxygen, her suction, her emergency medicine and all the stuff that normal babies need. Lately I've been taking her everywhere with me as I show Katie what Canada is like here in the Kootenays. Our car seat for Anaya is a joke. It's a carseat for regular toddlers and it does not support her little body or her head in anyway that is good for her. I asked our "Physio Consultant" about the possibility of getting her a car-seat that she can actually USE and got blinked at with incredulity. So all we have is the Wal-Mart seat that she folds into like an accordion, her spine bent and to the side, her head lolling back, her legs sticking up at an angle that hurts even MY knees just to look at. She always ends up choking because her head is too far back and she can't swallow the saliva in her mouth. Then I have to pull over and suction her. It's really very awful - why the heck don't they make special car-seats for disabled children? Is my physio consultant telling me the truth? Do they really NOT exist here in BC? If anyone knows different please let me know immediately.

On a positive note - we have been having an incredible response from Anaya's Website and The Anaya Initiative. People have been sending books for the Library of Hope, wind spinners for the yard, and postcards to Solara. It's been fantastic to have those moments of joy when the mail arrives. It is something me and the girls look forward to like a child at Christmas. When a new book arrives we try to ensure they are organized to make certain that everyone gets a thank you and the books get posted on the library page, but I'm behind in it. It's just not as important as other things have been this week. I'll get to it soon enough. I'm behind in my e-mail too. So if you've emailed me and you are waiting for a response - please be patient with me.

I'm thinking of a shoulder I could cry on, but I'll end up laughing instead. There's just something too funny about stressful situations. Everybody knows who I am, what I feel. My heart is an open book. Sometimes being anonymous even for a moment takes the weight of the world off of my shoulders. I only wish I was a little stronger and could handle a little bit more. I need a little more Celtic blood I think....

Anaya's 20 Month Birthday!

Today is Anaya's 20 month Birthday! We are so proud of her for being such a strong brave little warrior and making it this far. She has outlived the average age of death of a Krabbe baby by 7 months already!

Today we are hopefully going to get some help from a respiratory therapist. We also plan on making Anaya something special to taste...melted chocolate drop maybe?

Must run! Have a day filled with gratitude and HUG your kids!

This photograph was taken by Theresa of http://www.photographybytheresa.ca/

Sleeping beauty in color :)

Which photo do you prefer?

Anaya is doing well tonight. She's a sleepy little monkey.

Sleeping beauty :)

Brent says this picture looks "gothic". I think it highlights her eyelashes. :)

April 23, 2011

We are home again now. It turns out Anaya has a urinary tract infection. Her painful winces might have been when she was urinating. Her breathing is still an issue. The Dr's think that her apneac spells have gotten worse. Sometimes she pauses for quite a long time. She then gets "dusky" or "blue lipped". We have been giving her oxygen and she might need a bi-pap oxygen supply. which is pressurized and would help her get a full breath.

It's late. I just wanted to write that Anaya is alright. She's on antibiotics and is sleeping soundly. I think we are meeting with a respiratory therapist this week, once our Dr. sets it up.

Anaya's at ER

We've taken Anaya to Emergency due to her breathing issues. I think we may be transferred to the children's hospital. Right now she is stable, but needs assistance. Please send your love our way.

Happy Easter Weekend from Anaya!

Photography and Massage Day!

Dear Readers,
I can't begin to tell you how exciting this period of time has been for our family. So many things that are really, really good are going on!

First of all Anaya has been happy and healthy this week and that makes everyone around here smile :)

Second of all we have received enough milk donations to keep Anaya fed for months :) There have been so many beautiful women across Canada who have offered their liquid gold to help keep Anaya alive and well. We are so incredibly grateful to them. Special thanks to the women of Nova Scotia who sent an entire deepfreeze full of milk. (There must be something wonderful in the Nova Scotian water!)

Third of all I made some incredible new friends. The paper article wrote about "A Stranger in Texas" Her actual name is Katie Shutt and she lives in Dallas Texas. Katie Shutt has been working almost full time volunteering to help make Anaya's life better. She's been calling around trying to find a motorized wheelchair for her, helping to rally breastmilk donations, and now managing some of our communications efforts. She's the founder of The HumanKindness Initiative, of which The Anaya Initiative is a part. My other new friend, Katie Edwards, is the reason why Anaya has been on the news and in the paper. She has been contacting media and others to help raise awareness about Anaya's life and needs. She has been instrumental in helping get breastmilk for the baby.

I love Katies. Katies are golden people. Just so you know.

Fourth - people have been sending books for the Library of hope and it's been incredible watching the books grow!

Fifth - I've been contacted by several organizations to look into getting Anaya a special wheelchair.

Sixth - I've been asked to create a website for a company :) (FROM HOME!)

Seventh - A photographer came here today and took pictures of Anaya and our family from "Helping Hearts" and organization that does photo shoots for sick children.

Eighth - Bodhi Day Spa donated a massage to Anaya and she LOVED IT!

You probably don't want me to keep counting my blessings out loud but there's so many! I think I'll save some for another post!

Anaya in her Stander today

Anaya is doing well. Just this past week we finally got to use her Stander at home. It is just what it's name implies. It holds her body in a supported standing position. She really seems to like it and we notice her secretions are not as bad when she's in it.

I hope to write an entry to fill you in on what is going on with us later today.

The paper article

Front Page!

Rainbow Tree

Sweet Angel,
We are rocking gently back and forth in our chair. I am looking out the window darling, and I can see your Rainbow Tree. The colors dance and spin in the wind for you my love.

Oh my baby, how you would delight in the magic of it. I can imagine your smile. I can almost hear your baby laughter. My mind sees a little girl in pigtails, toddling around the tree. Picking her first flowers, she say's "Flowah, Mama!" She would see the pink pinwheel and I would blow in the pinwheel and show her how it spins. That liitle girl is you love. Oh baby, Anaya, sweetheart, I love you so much. Please stay here with me a while longer. Your daddy and your sister and I love the lessons you teach us each day. My brave girl. I know you work so hard. Sometimes even breathing is hard. I am here darling and I will always help you as best as I can. I love each breath you take. Just to feel your warm little self snuggled against my heart is enough for me. I will always keep you, my little love, close to my heart.

Your sister has arrived. She's got kisses for you! Let's go put your new dragonfly out in the Garden together.

Prayer Box

April 12, 2011

It is a beautiful day here. The sun is streaming in the window. Anaya has already been outside for her walk. The flowers of spring are showing their colors everywhere. I love spring bulbs. There don't seem to be any in our yard at our new house. It's probably something I'll tweak this year :)

It's been so busy this week. I have been working very hard at keeping up with milk donation e-mailing and building Anaya's site, and working on finding more jobs for Nelson Staffing. I completed my paperwork anyways, and now I find a moment of space to blog. My head is hurting and I think I need a Tylenol.

Last night I took Solara to her second soccer practice ever. I've never played soccer before and I dressed her wrong. I put the shin guards on over the socks. When we got there she was the only one in Hawaiian shorts, with hot pink shiny shin guards. We were a few minutes late due to Anaya having a rough moment and Solara got the Evil Eye from the coach (who doesn't know about Anaya - I was going to tell him but they were already in the middle of practicing). So anyways, I'm sitting behind this glass window with the other moms watching Solara practice in the soccerdome. I sat alone. No one really said "Hi" to me. I didn't know anyone. I smiled at some of the moms and they looked at me askance.

I looked down at myself. I was wearing old sweatpants, a t-shirt and a comfy sweater covered in dirt because I just moved a large rock in Anaya's Garden. I know I have huge bags under my eyes, no makeup on and my hair is undone and windblown. In my world I don't have time for worrying about that kind of surface stuff some days. I just take care of Anaya, work, take care of Solara, do housework, and collapse into a chair to check my e-mail and work on getting milk donations to feed my "palliative" baby.

What do I have to say to these moms? How do I act? "Hi, I'm Camara - I know I look scary right now, but there's a good reason for it. I'm really a very nice person who could use some new friends. Which kid is yours? Mine is the one dressed funny with the shin-guards on the wrong way."

God. I just sat there. Maybe I need a makeover or something.

New!

In the wee hours I created a little something new. I hope you like it :)

Http://www.healinganaya.com

It's our own domain :) everything Anaya in one place :)

The Rainbow Tree of Hope

April 10, 2011

A bit about birds, Anaya and Stemcells...

The time flies by like a flock of migrating birds. Spring is here and the birds are coming back from the far reaches of the south and are heading to Northern BC to the Wetlands for the summer.

On our walks Anaya can hear the birds. Her eyes open wide and dart from side to side. I know she wonders what on earth each sound is. The honking of Canadian geese, the caw of a crow, the chirps of the little birds - when she is awake she is aware of each one.

Yesterday we put Anaya in her stander at home for the first time. After a few minor adjustments it fit her unique little body. She was so wide awake and curious. She didn't cry or express discomfort at all. We placed the stander in the living room by the television and turned on Saturday morning cartoons. She got to listen to an episode of "Martha Speaks" a children's show. I think she liked it. After a while we took her out and fed her breakfast. A tube-worthy smoothie of fresh apples and bananas with prune juice mmmmm. She is just so awake and aware the last few days. I love it when she is like this. I spend every moment I can with her - once my work is done that must be done.

When I see her like this it gives me hope. Hope that perhaps Anaya will be the miracle Krabbe baby. Hope that the thousands of prayers that have been said in her name to God will be heard, and acted upon. I recently found out that breastmilk contains 3 different kinds of Stem Cells. Anaya is benefiting from the milk of many healthy mothers who do not have the genetic deficiency that I do within regards to the GALC gene.
Is it possible that this gift of breastmilk may save her life? Here are somee articles about research done in Australia and India.

Dr. Mark Cregan from Australia confirmed the presence of putative stem-like cells in human milk in a research study in 2008.

A pleuropotent cell is capable of developing into many types of tissue.



Research details
Researchers conducted pilot study in two Kolhapur hospitals on 25 newborn babies suffering from various diseases.

Under the trial, scientists gave colostrum stem cells isolated from the breast milk that is produced during the first five days after birth to the babies.

These were given in cultured medium of 5 ml containing 5 to 10 million cells, and the duration of the therapy varied depending upon the recovery.

Study results
Results revealed that all the 25 babies showed a speedy recovery after being given colostrums.

Researchers further estimated that in the first five days of breastfeeding, a newborn gets about 5 million stem cells per kg body weight each day.

As is known, colostrums contain about 50,000 cells per ml. As the milk matures, these go down to just 50 to 100 cells per ml.

Furthermore, researchers found that stem cells could be used to help treat spinal injuries, diabetes and even Parkinson’s disease in infants.

Besides, certain neonatal diseases like neonatal sepsis, respiratory diseases and others could also be cured if these stem cells were isolated from human milk.

Financial Chronicle quoted Patki as saying, “We will seek permission from Indian Council of Medical Research to carry out 100 trials each in Kolhapur, Pune, Mumbai and Delhi.”

Patki and study-colleague Dr. Ramesh Bhonde, NCCS stated that the team is certain of creating an oral drug for babies in three years’ time after approval from Drug Controller General of India (DCGI).

The research will be published in the journal Human Cell.

Here is another article

An Australian scientist has discovered that human breast milk contains stem cells. This is an exciting discover since stem cell harvesting is a hotly contested debate. Dr. Mark Cregan is confident that within five years scientists will be harvesting stem cells from breast milk to research treatment for diseases like diabetes and Parkinson’s.

This also further supports the benefits of breastfeeding and Cregan is also excited about the new doors that this could open about the potency of breastmilk.

Cregan believes breastmilk contains key markers that guide an infant’s development all the way into adulthood. “We already know how breast milk provides for the baby’s nutritional needs, but we are only just beginning to understand that it probably performs many other functions,” says Dr Cregan, a molecular biologist at The University of Western Australia.

Cregan’s team cultured cells from human breast milk and found a population that tested positive for the stem cell marker, nestin. Further analysis showed that a side population of the stem cells were of multiple lineages with the potential to differentiate into multiple cell types. Meaning the cells could potentially be “reprogrammed” to form many types of human tissue.


Cregan’s team have shown the cells have all the physical characteristic of stem cell. The next step for the team is to see if they behave like stem cells.

If these cells do behave like stem cells, Cregan and his team have made a great discovery in finding an ethical way to harvest stem cells, rather than harvesting them from human embryos.

I found them by google keywords "Stemcells in Breastmilk"

If you know anyone willing to spare a few ounces of colustrum, it may really help Anaya!

There are many moms in the USA wanting to ship milk and Colustrum to Anaya but the shipping costs are high. Please help Anaya by donating a few dollars using the Donate Now button. Thank you with all my heart.

Solara, Buddha and I walk by lake

Anaya's Krabbe Library of Hope

Check out our video on YouTube:

http://www.youtube.com/watch?v=iS7qaGK-vD0&feature=youtube_gdata_player

Anaya and Solara's Rainbows

Anaya's new milk freezer!

April 3, 2011

Last night I lay awake listening to Anaya's breathing. Lately it has become more shallow, more labored. She's been needing oxygen almost 24 hours a day. I was hoping that she would not need it after recovering from her recent illness, but she does. This makes me wonder about her brain function. Is the demylination spreading more into her brain stem? Is she drawing closer to the end of her journey? How many breaths do we have left?

I take her in my arms and kiss her cheeks, reveling in the incredible softness found only there. How can I memorize the feeling? Touching her hand, I feel her chubby little fingers close around mine, and she sighs contentedly. She knows her mama. She's always known her mama. Holding her I walk to the sunshine coming through the window. We stand in the warmth and I hum to her, singing her a sunshine song. We named her after the Sun. "Aya" was an ancient sun god. An- Aya. Perhaps we presumed too much.

She is wide awake now, eyes open, seeking for light that isn't there. I nestle her safely in the crook of my arms and rock her way down and then way up like a swing. When I get to the top her eyes open wide and I see a smile in her eyes. It's like an Anaya-safe version of being thrown up in the air.

Sensing that she has had enough I snuggle her to my shoulder and we press our hearts near each other and melt in the wonder that is the baby-mama bond. How many more days will I get to be with her? The answer is unknowable. I try to focus on the present and enjoy the moments. All the little things still call away my attention. Housework, yard work, business, Solara...even on a Sunday.

I pass my little snuggle bug to the nurse and head upstairs to work on some data entry. I have a deadline to meet in a few days....

April 2, 2011

http://www.cbc.ca/video/#/News/Canada/BC/1258521056/ID=1866010799

If you click the link above you can see Anaya on the news last night :) She had a pretty good day yesterday, and slept well last night.

Solara and Brent are in the kitchen making sausages and eggs. I'm so hungry and excited. I love Saturday morning breakfast :)

The freezer that was donated to Anaya doesn't work. We really need a deepfreeze. More milk is on it's way next week. Hopefully we will get a freezer worked out before then!

Anaya this morning.

Solara in vivid color!

March 31, 2011

I'm sorry that it has been a few days since I've written. It's been quite a week. Anaya was very sick and was hospitalized, and then released. She's on antibiotics and is now much better. On monday we went to a "seating clinic" which is where Anaya is fitted for her special seat, bed and stander. I took some of the recent cute pics of her at that clinic. I got a new software program that lets me edit pics. Changing the color, adding a border, altering the lighting slightly. I'm having lots of fun taking cute pics of Anaya and making them even more BEAUTIFUL! I also took some of Solara and we are playing with those too!

I'll post a pic of Solara as well, when I finish this post.

Our new Anaya Initiative Page on Facebook is really helping to get out the word about breastmilk donations. Now that Purolator is on board we are able to get milk from all over Canada :) Anyone wishing to contact me about donating breastmilk can do so at milkinnelson@gmail.com. CBC was just here interviewing me about milk donations. I hope it has some impact. There should be something on CBC Vancouver news tonight.

We had a deepfreeze donated! Brent cleaned it out and plugged it in...we are waiting to see if it will freeze some ice cubes. I'm hesitant to put milk in there until we know for sure it will work. It's really old. I suppose if it doesn't work we will use some of Anaya's funds to buy a new one.

Brent and I are going to see a counselor that specializes in child development regarding Solara in half an hour. We are hoping she can give us some guidance on how to help her through her grieving process, how we can best support her and help her grow and be happy :)

I want all of our readers to know that PUROLATOR ROCKS and that FED EX never even responded to my emails. Think about that the next time you need a courier!

Beauty!

Anaya at the Seating Clinic today.

Gift from Lisa!

March 25, 2011

The day began with my awaking to Anaya sleeping peacefully with her head over my heart. She felt hot to the touch and I took her temperature - 39.5 - That's hot! We got up and gave her some medicine and her antibiotics. Nurse got here and took over so that I could work on organizing some milk donations. Right now they are cuddling in the rocking chair and reading stories.

I've had an idea to start "Anaya's Library of Hope". People can send Anaya books and stories that we can read to her, as she is blind - but she can hear and she loves to be read to. The intention is that we will put a sticker inside each book that says who it was donated from. Then if or when Anaya passes away we will donate all the books to the local Nelson Library for children to enjoy in memory of Anaya. Every time one of the books is read to a child it will be a loving moment for Anaya's soul. You can get more information about Anaya's Care Drive and Library of Hope on our Facebook page "The Anaya Initiative" under the discussions tab.

We are so incredibly happy to report that several women from all over Canada have offered to send milk to Anaya! We still need milk donations and I'm asking that anyone who wants to donate please e-mail me at milkinnelson@gmail.com. We really need to get another freezer for breastmilk. We are having a breastmilk-freezer fundraiser this week - so if you can contribute even 5 or 10 bucks that would sure help out.

March 24 - KL Hospital

We took Anaya into emergency this morning because she's had a fever for two days that does not go away with fever reducing meds like Tylenol. They got her in right away and we got quick access to suction and Oxygen. After a chest x-ray and a lot of needles we found out that Anaya has a bacterial infection of some kind. She is also dehydrated from sweating so much. Our Dr. suggested we bring Anaya home, give her antibiotics and do our best to keep her comfortable.

We are back to a Breastmilk only diet while she's sick because she doesn't seem to be digesting food well. I have several offers of breastmilk that I'm trying to coordinate shipping for but I'm so swamped with a sick baby, and exhaustion. I could really use some help on this one. Anyone want to take over the milk coordination? I could forward you all the e-mails and the spreadsheet I put together.

I've been really emotional the past few days. Today I don't have the words to express my sense of despair and grief. I just want to help my baby. I wish I could do something to save my baby. I had a dream last night that a Dr. told me not to give up on her. He told me that some cases just don't fit statistics and that I should not believe that Anaya will die soon - but instead allow the possibility that she might live on for an unknowable amount of time.

If only this dream were a message from a higher power (God if you like). If only it were true. Please let it be true. I just want my little love to stay in our lives, and not suffer. She's our earth-bound angel. Her beauty melts the heart of everyone who meets her. How could a little girl, so soft and vibrant, shining with the light of her soul - ever become cold and still?

We are building a Facebook page especially for Anaya. It is called "The Anaya Initiative" and it is to build awareness, help find milk and fundraise for Anaya. There are also "Care drives" on the site - where fans can send a post-card to Anaya's Super Sister Solara, or donate a children's book to Anaya's Library of Hope. Please share our page and help us shower love on our little angel.

Woman, Uncensored: Life-Saving Milk Needed in Canada

Woman, Uncensored: Life-Saving Milk Needed in Canada

March 21, 2011

I have Amazing NEWS! Purolator Canada is going to help us get milk to Anaya! I have been contacted by a few mamas who would like to donate and we are getting it organized. Anyone else who would like to donate milk, please contact me at (maraglow at gmail dot com) ~sorry to write it like that but spam sucks~

I have updated the "look" of the blog and I'd love to hear your feedback on the colors and if it is clear and readable, and if you have suggestions on improvements.

Anaya is feeling a little bit better today. I'm hoping her cold is almost over. I gave her oregano oil on her feet and oregano spirits in some water, I also gave her vitamin C and Tylenol to help her fever. She's doing great on her breastmilk today. She also had some blended yams and bananas. I don't know many babies with Krabbe Leukodystrophy who get real food! Nurse Joanne has taken her for a walk while I work on my computer work. Other than updating the blog I also had some invoicing and bookkeeping to do.

I'm going to spend a few minutes adding some pics to the photo album.

Mommy's night shift <3

O2 Color

March 18, 2011

Anaya has been having a rough day. She has needed oxygen blowing in her face to keep her color. She's sleepy and seems out of sorts.

I remember I said I'd tell you a secret today. No I'm not Pregnant! The secret is that I'm mrs. Fixit. Lol. Brent's never around, he's working so much. I've taken matters into my own hands. I fixed my van door, put up curtain rods, fixed the leaky tap (well- I called the plumber), and I even used the power tools! I can find my way around the tool box thanks to Brent for giving me the tour.

I'm sorry, I feel i'm rambling. I'm exhausted. Must sleep.

VIP Delivery to Nelson!

Today Purolator delivered milk from some wonderful Calgary Milky Mamas right to our house in Nelson. I am so grateful to Purolator for providing this service to Anaya. Thanks to them we are now able to ship milk fast from most places in Canada :). Breastmilk is still the most important of Anaya's needs. Without it, she probably wouldn't be with us.

Special thanks to Chrissy, Sarah and Lucy and all the wonderful people at Purolator!!

Things are good, busy but good. Anaya hasn't had much seizure activity lately- which we are very grateful for. It seems as though she has been granted a reprieve. Solara has just left to visit family in Calgary for spring break. I miss her, but I'm glad for a break. Brent's mom, Marlene has come out to stay with us for a while to offer her help and keep me company. Brent's been working long hours- but it's very good :)

I've had a lot of work and organizing to do here at home, I won't go into the dull details. Things are pretty good right now. I'm glad we moved. It feels much better knowing we are 5 minutes from the hospital. I actually got there in 3 minutes the other day- and I wasn't speeding.

I promise to let you in on a little secret in my next post.

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.

Teething

March 6, 2011

I'm sorry that it has been so long since I last updated you on the status of little Anaya. So many things are happening for us right now. Moving is a huge thing. It takes forever to unpack and find everything. Setting up Anaya's stuff and her medical supplies was our first priority. Everything else has come after. I have a roomful of boxes and bags that haven't even been touched yet. You can't unpack books if you have no bookshelves to put them on.

We got our old house all clean for the new tennants - that took a few days too. Now Brent has started work as a Welders Helper and is gone 14 hours a day. I'm happy he has a good job, but the long days are a bit lonely without him. I don't know too many people in Nelson. Sometimes it seems like people think I must be too busy with Anaya to want a social life. Well it definately is busy with Anaya - but it would be nice to have tea with a friend too.

We got an appointment date for Anaya to see Dr. Escolar in North Carolina. We would have to be there from March 17th to the 25th. The thing that is in our way now is that Anaya's nursing agency has just informed me that they cannot send a nurse with us. I was counting on having a nurse to help, so now I'm stuck. I've asked my close family members and friends if any of them would come with me and Anaya to North Carolina for 10 days. As of yet no one has said yes. But I do have a couple of "maybes" and "it depends". Please pray that we find a helper to join us on our trip - or I'll have to re-book it for next month.

Anaya's health has been great the past week. We've been continuing to introduce blended foods and are having great success with it. Her secretions have been manageable, she's been sleeping alright at night, and she hasn't become constipated. I think shes growing faster and she's getting 4 teeth at once which must be painful. I rub her gums and give her pain medicine to help her.

We are going to listen to the live music at the Kootenay Christian Fellowship this morning. I've never really been one for Church- but I like this one so far. The people are kind and lively. They make it awesome.

I'm going to give Anaya a bath now and get her ready to go. Have a great Sunday :)

18 months Feb 26

Happy 18 month birthday Anaya! We love you sweetie. We're so glad you grace us with your presence. Stay as long as you need to. We will take care of you and help you in every way we can. We all had so much fun with you at the pool today.

Stay strong baby girl.

Water Baby

Swimming!

Pool edge textures are neat!