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