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!

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.