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!

Pool time!

Sola's Spring green :)

Feb 22, 2011

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

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

That's right! NEW FOODS!

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

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

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

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

Feb 18, 2011

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

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

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

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

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

Anaya's Care Corner

Feb 13, 2011

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

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

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

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


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

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

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

Feb 10, 2011

Anaya is still sick...going to bed. So tired.

Feb 9, 2011

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

Feb 8, 2011

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

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

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

Love to all!

Feb 5, 2011

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

Feb 2, 2011

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

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

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

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

Feb 1 2011

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

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

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

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

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

Gentian violet lips

Big eyes

For Felipe...

Thank you for being such a strong support for Anaya. Can you send me an email to maraglow@gmail.com ? I'd like to email you back :)

Jan 31, 2010

The heavens opened today and the sun shone down from a crisp blue sky, catching diamond glitter flecks in the air. It's days like today we find so much joy in being alive, sharing this beautiful day together. Anaya has had a good day today, with less seizure activity than before. I've been asked to bring Anaya to see the world expert in Krabbe Leukodystrophy in North Carolina. Dr Escolar may be able to suggest treatments, meds, and therapies that will help keep Anaya comfortable as she progresses on this journey.

I got our passports in order but finances are an issue. It will be a week long trip across the continent. 2 days of travel each way, driving and then flying from Spokane. I'm going to ask family and friends to help us pay for the trip to take Anaya to see this specialist. I think it is very important that we take her as soon as possible. Anyone want to help me organize a fundraiser?

On another note, My older daughter has gone into an emotional slump. Being 8 is the new 13?I can't help but wonder if my sadness has affected her. She's been feeling bad about every little thing and I'm distressed about how to help her and make her feel better. She says she feels "guilty". Guilty for her thoughts. I'm taking her to the doctor. I think she needs a councellor or a child therapist. We can all use a little help to get through these times.

I think we found a home in Nelson that is pretty perfect for us. It has 3 bedrooms and is cute and clean. It's on a direct hospital route. It's yellow and green with big windows. I'm stoked about it. We just need to make sure we can fit our bed up the stairway to the bedroom before we sign a lease.

The community futures business project I'm working on is coming along. It is "Nelson staffing" and basicly I find temp jobs for Brent and I to do for now, until we can hire a few employees. I'm finishing up some marketing materials and will be pounding the pavement distibuting them this week. Hopefully everything will stay sane. Sometimes I feel like there is no way I can keep going with all these things- but I have to trudge on. We need to pay the bills. I'm glad to have the flexibility to be with Anaya when she needs me. I wish I could be with her all the time. Our moments are so precious.

Jan 28, 2010

I have bad news. Anaya started having seizures last night. I was up with her all night and I've made the decision that we must move closer to Nelson. We have to give up our beautiful home here in Procter. Anaya is very fragile right now and we need to maintain her comfort as best we can. She is our highest priority. Please help us find a place to live. I have to break the news to my landlords, I know they'll be sad to see us go. I wish with all my heart we could stay.

Home Needed in or very near Nelson for family of 4. One of our children, our youngest daughter, Anaya, has a very serious medical condition and we need to move to be closer to medical services (Dr's, Hospital, Hospice). Currently we live 45 minutes from town and it's too far in emergencies. Optimally we need a two or three bedroom house/ unit/duplex /townhouse/ suite that is accesible without too many stairs. We need to reduce our expenses so that we can spend time with her as she completes her life journey. We'd love to spend less than $1000 but can afford up to $1300.

We are outdoor enthusiasts and take pride in keeping our yard beautiful. For the past 1.5 years we've been responsible for an acreage with fruit trees, perennial gardens and way too much lawn - and we took good care of it. We love it here but we must move. Please help us find an awesome new home!

We are responsible respectful tennents with excellent landlord references. We have a medium well behaved dog but are willing to give him up if need be. Please if you have a place call us. If you know of someone else - please have them call us. 250.509.0593

If you wish you could help but don't know how please contribute to Anaya's moving Fund by clicking the donate now button on the right of the blog.

Jan 26, 2010

We've been sent home to continue recovering. Unfortunately I now seem to have the flu and have been very sick for the past 24 hours. Anaya is still gurgly, but it's mostly in her throat instead of her lungs, which is good. Brent and nurse Joanne are taking care of her. I've been sleeping. Our little warrior is still strong :)

Jan 24, 2010

I've always been an emotional person. Throughout my life I've made most of my choices based on what my heart felt. I've always walked a path of difficulty. My heart doesn't always lead me through what my dad would call "the smart path through life". Apparently I like the hard way. I have loved others, and been loved in return.

I find myself walking another difficult road filled with emotion. My baby lays helpless in my arms, while a disease eats away at the myelin on her brain cells. My little love is a little closer to getting her wings every day. Being with her, comforting her, snuggling her, kissing her delicate skin, I come close to my own mortality. I am watching a part of myself die.

I close my eyes and imagine myself as her. What can I do right now, in this moment, to bring love and wonder to her life? I unfasten her sleeper, lifting her chubby baby legs out one at a time. Gently and firmly I massage her feet, her ankles, her knees. Her little feet, having never known weight bearing, have turned inward. Each ankle is rotated and flexed forward and back as I help her with range of motion exercises. I feel her joy at having her body moved and I coo at her and babble out the thoughts in my mind.

Is love the reason for human existance? I don't know. But it's the reason for mine. I didn't know how much love could hurt - and yet it is a pain I want prolonged. I do not want my daughter's life to end, I do not want this love cast out into the unknown. I am frightened for her. I try not to be. I attempt to live in the moment and embrace the cycle of mortality. I believe death is a doorway.

I simply can only give her my love. I can give her comfort, small joys. This is what I myself would want.
"Mother is the word for God on the lips and in the hearts of children". I will hold my angel's broken body gently to not cause her pain - seeking to bring her moments of wonder and joy. When the time comes, and Anaya gets her wings, she will be free of it's cumbersome limpness to explore the fundamental nature of existance as pure energy.

I can see that in her now, in my minds eye, laying here in the hospital bed. I imagine all sorts of wonders out there for her to explore. I can envision her smile, I can hear her voice calling out "I love you Mommy!"

And I know it's true.

So while I'm sheparding her body through this life, I am blessed to see the beauty of my soul reflected in hers. I am able to give her the love that I myself have always needed, and it heals hurts buried deep inside me. I may follow my heart around more than my head, but for the moment I'm okay with that.

Anaya brings me insight. Her day has been mixed. Moments of clear breathing followed by moments of intense wetness. We have her on antibiotics now. I hope she gets better soon, so that we can snuggle up with the rest of the family at home.

We really need some fresh milk donations. So if you know any loving lactating women in Nelson please tell them - there is an angel nearby that needs their help - even a little bit adds up.

Hospital

Jan 23, 2010

I have brought Anaya to the Nelson hospital. She has very wet sounding lungs and a fever. We've been admitted and are cuddled up in bed. I just finished doing some "chest Physio" with her (special percussions over her lungs) and she actually sounds a hell of a lot clearer now. They poked her toe and dripped some blood into a vial to run tests on. I've got her on slow continuous feeds to help her keep the milk down. She's having myclonic seizures in her sleep. (common- even in normal people)

Thank you Penny for driving us to the hospital. XO.

I'll keep you all posted. Lots of love.

Jan 21, 2010

So far it seems to be a better day for Anaya. She slept well last night and is keeping her feeds down :)
Katie donated a bag of fresh milk and I'm interested to see if Anaya takes to it easier than the frozen milk that has been her diet for the past month.

Jan 20, 2011

I can hear Brent throwing up in the bathroom. Looks like the flu has hit our house. I think I've figured out a way to get food into Anaya. She seems to have excessive gas in her tummy that leads to the vomiting. I have found that if I vent that gas every few minutes during this last feed that I can prevent the vomiting. There hasn't been any blood in her vomit since yesterday morning. I've been on the phone with our doctor several times each day. If need be we will go to the childrens hospital - as there is really nothing they can do for her in nelson. No one there can find her veins. She's keeping this feed down so far, and has kept pedialyte down- so she's hydrated.

I hope I don't get this bug. I need to take care of my sweet pea.

Jan 19?

Anaya has been sick. Really sick. Vomiting and diarrhea and apnea. I'm not sure what's causing it - but i tried giving her one ounce of Neocote (hypoallergenic liquid food) the day before.  She threw up immediately and then threw up blood 12 hours later  I'm staying right here with her. I've been giving her pedialyte to help keep her hydrated. Yesterday she didn't tolerate her feeds at all. She just threw up again. I have to go.

Jan 16, 2010

There is a stillness in these wintery days. Time slows and each moment becomes lengthened. Anaya sleeps often, her baby lips trembling while dreaming. I run my fingers through her hair, around her ear, beneathe her chin. Her skin is so soft. The only comparison I can find is like fresh silky rose petals. Her flesh yields to the softest touch like softened butter. The beauty of this little butterball astounds me.

She calls out with a mewling cry when I lay her down to change her. Her arms sometimes rise from the counter and twitch rhythmicly in muscle spasm. I lift her feet, bending her at the knees and hips to clean her bottom before putting her in a clean dry diaper. The muscles in her legs tense up and she cries out in pain, cringing her whole being. I hold her tight and soothe her, helping her to relax. The pain abates, she settles.

Picking her up and holding her to my chest my lips smack a kiss on her crown of blonde. I sing to her and we shuffle over to the stereo. "What do you want to listen to?" I ask her. She breathes and sighs eyes darting left to right. I select a CD from the drawer,we listen to harmonious melodies and dance.

Live in the moment - I tell myself this. Feel deeply these sweet joys. Her baby heart flutters against mine and we spiral towards mama-baby love infinity. A creator would surely love all of creation thusly.

I find myself at a loss sometimes. I simply don't know how else to behave. I continue putting one foot in front of the other, sometimes feeling like life's sleepwalker. Anaya pulls me out of my reverie, smacking her lips, reminding me of a baby kiss never known. I press my cheek to her lips, she smacks again. I tell her how sweet her kisses are.

It's time to pick her up again. Our night time cuddle begins. Soon we'll be headed for bed. I'll kiss her cheek for you, our readers, who love this fragile princess. Goodnight.

Jan 13, 2010

Anaya has been sick with a cold the past few days. I've had to remove her scopalimine patch, that dries up her extra mucous, to allow her the ability to clear the phlem from her lungs. Her little cheeks are flushed pink
and she is constantly trying to clear her throat. It's been a rough couple of days. Our nights and days find us best buddies with the suction machine. In her sleep she sometimes wakes up choking and I help her the best I can.

Today we went to see Dr. Fitzsimmons for Anaya's first G-tube replacement, and so she could have a listen to Anaya's chest. Replacing the Mic-key GTube was simple. It was just a matter of removing the old one, lubing up the new one and sliding it through the stoma (hole) into her stomach. Easy peasy. Much nicer than the NG tube was. The doc thinks Anaya's lungs sound okay. I'm glad this cold didn't turn into pneumonia.

The snow here has been huge and beautiful. More than a foot has fallen here in the past two days. We borrowed my friends truck to go to the Dr. today. It's much better in deep snow than my van is. It's a shame that rain is predicted in the coming days. It's gonna be a slush fest.

Here's hoping Anaya gets better soon!

January 9, 2010

I know it's been a while since I wrote. It's been a busy week. Anaya was getting over her cold, Solara went back to school, I did lots of computer work and filing at the firehall, we went skiing and the nurse called in sick for three days.

Anaya is having a great day today. I gave her a warm bath, supporting her while she floated in the water. Bath time is her favorite. Then we did her exercises and I gave her a nice massage. I dressed her up warm and we went for a long walk down to the general store and back. I saw many of our neighbours and they all stopped to ask how the baby was and exchange pleasantries. I love knowing the people who live near us. There are lots of supportive folks.

Brent went out with a friend today and I got to take care of the girls. Solara had a friend over and they built a snow castle.

Gotta go take dinner out of the oven.

Anaya and Snuffles the bear

Jan 1, 2011

Happy New Year!

I've been thinking about the past year today. I remember a year ago Anaya was well still. It was in January that she became extremely irritable and February when she started choking at the breast. We were in the children's hospital for the first two weeks of February. We drove home on Valentines day. We thought we were taking our daughter home to die - because that's what we were told to expect.

Quickly she lost her smile, the movement of her body, her cooing, her sight. How I miss those eyes - her soul looking into mine. We tried everything and stopped at nothing to help her. Perhaps that is why she is still alive today - perhaps not. We cannot know what mysterious goings-on happen in her little body. We can only note the changes we see and feel.


There is so much dynamic in our household. Solara is an energetic 8 year old vying for time and attention, but never has displayed insane amounts of jelousy over the attention Anaya gets. Brent is quiet and maintains some kind of inner calmness I could never duplicate - except for when he becomes impatient. Our dog Buddha is timid and hides away much of the day on his special chair. Anaya is like the hub of our existance. Every move we all make depends on her and how she is doing that day. We all love her to bits and cannot imagine our lives without her...and there are our nurses too, carrying on quietly around the household, reading to Anaya, feeding her, giving her the medicines and vitamins that help her. The day to day here is a routine that feels somehow in between worlds. The world before Anaya and the world After Anaya. How can I imagine our home without her?

At night I lay beside her, her crib snuggled up next to my bed. She sleeps on a specially made mattress that angles upwards to prevent her from throwing up (refluxing) in her sleep. She sleeps on her stomach so that the saliva flows from her mouth onto a clean cloth so that she doesn't have to choke on it in her sleep. Sometimes nights are worst for me and Anaya. She breathes in and out in loud bubbley rasps when she's got a cold, as she has now. It puts me on edge and makes it difficult to fall asleep. I wonder to myself "What kind of life is this to be so comprimised? How awful must it be to struggle to breathe waking and sleeping. Would death be a welcome release from this imprisionment of her soul?" I cannot guess nor know. It is not my life it is hers. I am simply here to love her and keep her comfortable as possible on her journey. God how I wish I could cure her. How I miss her smile and her laugh.

One day, in the place beyond death, I shall see her smile again and we will dance and play together in the sunshine. She will laugh and run with her sister and sit on her daddy's shoulders. In the place where there is no time. Until then my love wraps around my wounded angel and I feel her love for me in my heart. We will continue on together - no matter what the struggle.

Anaya seems limited in her perception of the world. I know for sure that she is aware of her breathing, and of the voices of our family. She enjoys music and being read to. In times when I question her intelligence I am reminded of Helen Keller, who was blind, deaf and mute. She turned out to be able to communicate and function - so why can't Anaya? Although I don't think Helen Keller had a demyelinating condition of the brain.

We hope the new year will bring good things for humanity, for our family and for Anaya. We are eternally grateful to all of you who have helped us by reading, commenting, contributing time and money and for being there for us in your hearts.


A million thanks to Courtney and friends for buying Anaya this magnificent generator to keep her safe when the power goes out!

December 27, 2010

Christmas was a festive event this year. Brent's parents are here and Anaya and Solara were spoiled with love and gifts Christmas day. Brent and I cooked an amazing dinner of turkey, stuffing, potatoes, and veggies. Poor Anaya could only smell the delicious smells, and didn't get to taste it - but I'm hoping that next Christmas we will be able to blend her up some dinner in the blender and feed her some too. It's about ten days from now that we will be able to start her on her new diet.

We got a special blender that really pulverizes things and we are going to mix some real food in with the breast milk. I think we will start with some of baby's first foods including banana and avocado and try to include some fresh fruit and veggie juices. We will sprout some seeds and give her living greens as well as including coconut oil and maybe some raw goats milk. The last time we tried goats milk it ended badly - but she was quite young and I'm wondering if she will tolerate it better now that her digestive system is a bit more mature. We need to be careful about what we feed her. We have a nutritionist on our team to help us ensure she gets everything she needs.

Yesterday I ended up in the hospital for half the day because I had symptoms of meningitis. My neck and shoulders hurt really bad, I had a violent headache and my pupils were dilated really huge. The doc in emergency insisted on doing a bunch of tests including a lumbar puncture (spinal tap)and blood work. It was frightening and hurt. The great news is that I don't have any kind of infection in my spine, or elsewhere and that for some reason my pupils were big for an unknown reason. Today my pupils are normal, my neck doesn't hurt nearly as bad. Thank goodness.

When I was waiting in emergency for all the test results to come back I thought "Oh no - I can't be sick! Who will take care of the baby if I have to stay here for a week?" Brent assured me that he would be fine taking care of her, but I still had anxiety about not being able to be there for her if she needed me. Thank god I'm home now and there's nothing wrong with me.

My friend Lisa gave me a ride home last night from the hospital and we talked about Anaya and how my outlook has changed recently. I've become less positive, less accepting of what is. I don't know why or what changed. I only know that sometimes I get so sad and angry that Anaya doesn't get a chance to play and express herself. I get mad at whatever fate cast her this lot. Lisa reminded me that this is Anaya's life and that we can't place our expectations on her life. She's right - but still sometimes the feelings come up and perhaps just acknowledging them will be enough to help let them go. Thank you Lisa for the ride and the kind words.

December 26, 2010

Happy 16 month Birthday Anaya!! This picture I took a moment ago shows my sleepy little love. Look how long her hair is getting! We love you, princess.

Merry Christmas Anaya!!

December 22, 2010

I haven't been sleeping well lately. It's not Anaya's fault. I find I just wake up for no reason around 3 am, again at 4, again at 5. This is new to me. I've always been a person who finds comfort in sleep - and I can sleep deeply even when being ever vigilant for Anaya's well being. It could be related to the change of hormones I seem to be experiencing because I'm no longer able to pump milk for Anaya.

When we came back from Calgary my milk decided to dwindle to almost nothing. Pumping was torturously slow and painful. I decided it was a good 10 months of pumping. I stopped taking my oodles of breast milk supplements and Motilium...and my milk simply dissappeered. Even though I haven't pumped now in days I have not experienced any engorgement or soreness. My body was ready to be done with the pump. I'm fortunate that Anaya has donors to help feed her, because she's still on a breast milk only diet.

Since I stopped taking the supplements and pumping I have experienced the worst depression I've ever felt. Every single emotional tear that I somehow kept at bay over the past 10 months has decided to leak out. I find it difficult to be positive, difficult to stay in the moment. I think too much about the future and imagine worst-case scenarios regarding Anaya's death. I've never been so sad or felt so hopeless. The thing is that I know it's illogical. Nothing has really changed. Anaya is doing well right now. I think this must be an emotional down-time caused by my body's abrupt hormonal change. I'm eating healthy and trying to get myself re-balanced. I'm hoping that the bright side is gonna shine through any day now.

The only other thing that has changed is that Anaya's father, Brent, got laid off from his job at Hellman Canoes. He's been building Canoes since May, out of wood and fibreglass. It was supposed to be a year round job - but right before Christmas they "ran out of work". Having more financial strain at Christmas time has not been pleasant. I'm trying to help Brent find work and currently I have him working for me doing odd jobs for my new temp agency. He has lots of skills. He's an educated welder, he knows gold and silver smithing, he's an amazing artist, he can cook an amazing meal and has experience as a line cook, and he can labor with the best of them. One of the things I love about Brent is that he is sparing with his words. He talks quietly and usually only after contemplation. His presence is calming. So if you know of any work in the Nelson Area that might be perfect for Brent, please let me know.

Anaya has been up and down this week with recovering from the cold that had her hospitallized last week. Sometimes her breathing sounds just awful...like wheez, snap, crackle, pop, bubble, and I worry about pneumonia. Other times she sounds clear and her lips and cheeks are a perfect pink. She's only had a couple of rough nights and otherwise has been sleeping well. Sometimes I worry about her sleeping so much. A few days this week she slept pretty much all day and all night. After the second day I started worrying about it. Wondering if her time was closer than I thought, wondering if she was going to slip into some kind of coma - but it didn't happen. She was awake and alert the next day. Perhaps she just needed rest to get over her cold.

Brent's parents, Marlene and Phil, are arriving today from Calgary to be here for Christmas. We have never had Christmas at our house before and it's something that I feel a bit uncertain about. I don't have any special traditions yet...I guess we'll have to come up with some. My mom passed away of a heart attack on Christmas eve when I was a teenager. Since then I've been struggling with enjoying Christmas, but the last couple of years have been better. Christmas is supposed to be a time of fun, cheer, laughter, good food and family. It's best for children - you should see what I got Anaya and Solara! I promise I'll post pictures after Christmas day.

Damn I forgot to mail the Christmas cards :(

Okay I must go finish that project and get them in the mail immediately. Three days till Christmas and..oh my... I feel like a flake for forgetting that. My friend Grant is coming to visit today. He's bringing milk from Calgary and he's also brining the power generator that has been generously donated to Anaya by some wonderful people. We will never be without power for Anaya's suction machine ever again. :) We are so thankful.

As a Christmas gift to those of you who love Anaya I am posting the link to our photo gallery from our recent photo shoot with Short and Sweet photography. I hope you enjoy it - it's a beautiful slideshow of Anaya and I, and my grandparents.

Link to Anaya's Photoshoot

Dec 16 photo

Nurse Carol holds Anaya and reads :)

I'm happy I just learned how to upload photos to my blog on the go!

December 16, 2010

We are back at home now. Anaya is recovering from her cold slowly but surely. She is really gurgley in her throat this morning- though she slept through the night without a problem.

I sometimes wonder to myself about how strong I really am. Today I feel like life is beating me with a stick. I woke up sad and angry. I wept silently while I showered. I feel muddied, unclear, overwhelmed and helpless to save my baby. Brent would say I'm feeling sorry for myself and I ought to quit. My puddle of self-defeating thoughts is really quite a sight in my minds eye. It's more like a cold dark lake with scary weeds that grasp, and violent waves. Sometimes I don't see a way out of it - I just keep swimming. Other times I find myself on a sunny shore admiring the beauty of it.

In any case I can't sit here thinking about my metaphorical mind lake anymore. Today I go in to Community Futures to sign my contract granting me my first extension on my business idea. (Happy Thoughts!) This means I'll still have the flexibility to be with Anaya when she needs me. I want to give her as much love and time as I can while she's here.