Thursday, March 31, 2011

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 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!

Friday, March 25, 2011

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 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.

Thursday, March 24, 2011

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.

Monday, March 21, 2011

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.

Friday, March 18, 2011

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.

Thursday, March 17, 2011

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.

Thursday, March 10, 2011

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.


Sunday, March 6, 2011

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 :)