Friday, March 18, 2011
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.
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.
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.
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 :)
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 :)
Saturday, February 26, 2011
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.
Stay strong baby girl.
Tuesday, February 22, 2011
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 :)
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 :)
Friday, February 18, 2011
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 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.
Thursday, February 17, 2011
Sunday, February 13, 2011
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
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
Thursday, February 10, 2011
Wednesday, February 9, 2011
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.
Tuesday, February 8, 2011
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!
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!
Saturday, February 5, 2011
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 :)
Wednesday, February 2, 2011
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.
Tuesday, February 1, 2011
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.
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.
Monday, January 31, 2011
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.
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.
Friday, January 28, 2011
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.
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.
Wednesday, January 26, 2011
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 :)
Monday, January 24, 2011
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.
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.
Sunday, January 23, 2011
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.
Thank you Penny for driving us to the hospital. XO.
I'll keep you all posted. Lots of love.
Friday, January 21, 2011
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.
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.
Thursday, January 20, 2011
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.
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.
Sunday, January 16, 2011
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.
Thursday, January 13, 2011
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!
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!
Sunday, January 9, 2011
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 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.
Friday, January 7, 2011
Saturday, January 1, 2011
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!
Monday, December 27, 2010
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.
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.
Sunday, December 26, 2010
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.
Saturday, December 25, 2010
Thursday, December 23, 2010
Wednesday, December 22, 2010
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
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
Thursday, December 16, 2010
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.
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.
Sunday, December 12, 2010
December 12, 2010
Anaya is sick. She came down with a cold over the past two days. She's needed increased suctioning all the time and especially at night. Last night there was a snowstorm and the power went out. At 4 am my suction machines low battery light came on. I decided we needed to go to the hospital. We all got up and left the house and drove to Nelson through the darkness and blowing snow. It was slow going but when we arrived we were given an emergency bed right away.
Now we have been admitted and given a room. Anaya is on antibiotics to hopefully prevent this cold from becoming pnemonia. I'm hoping being here will be good tonight. I could really use some sleep- it would be great if the nurses can care for her and let me sleep through the night. My little love is sleeping a lot today. Poor thing is so sick. Her breathing is so wet. It just makes me want to clear my throat and cough - as if I could will her to copy me. She only coughs when she's choking. It's a reflex. She can't make herself cough on purpose. It sucks to watch. I just feel so helpless.
Now we have been admitted and given a room. Anaya is on antibiotics to hopefully prevent this cold from becoming pnemonia. I'm hoping being here will be good tonight. I could really use some sleep- it would be great if the nurses can care for her and let me sleep through the night. My little love is sleeping a lot today. Poor thing is so sick. Her breathing is so wet. It just makes me want to clear my throat and cough - as if I could will her to copy me. She only coughs when she's choking. It's a reflex. She can't make herself cough on purpose. It sucks to watch. I just feel so helpless.
Wednesday, December 8, 2010
December 8, 2010
Where we live outside of Nelson BC is quite dark in the winter. The sun comes over the mountain for only a couple hours. It starts getting darker at 3 in the afternoon. I took this picture of Anaya sitting in her special chair in the dining room just a few minutes ago. The lighting isn't the best because it's already getting dark. I wanted to show off her beautiful cheeks, unmarred by tube and tape. It's so lovely to no longer have the NG tube up her nose. She seems to be breathing a bit easier and does not seem discomforted by the new feeding system.
For the past few weeks I have existed inside a flurry of activity. My Community Futures business plan project and Anaya's Surgery have been at the forefront of my mind all the time. Due to having to go to Calgary and stay there for the G-tube surgery I missed my business plan due date. I've applied for an extension and I'm waiting to hear if it is approved. I'm praying and hoping it goes ahead - because if it doesn't I'll be desperately looking for work and having to work away from home. I wish with all my heart that I get to stay here, working from home in Anaya's presence.
Now that the G tube surgery is done I'm so relieved. I believe that Anaya is capable of living for quite some time as long as we keep her healthy and comfortable. The biggest part of keeping her healthy and comfortable is her diet. The human breastmilk donations that we have gotten from many wonderful milky mama's is keeping my baby alive and well. Lately there has been lots of discussion about the safety of informal breastmilk sharing. There has been news stories in the paper, on the TV, on the radio - all regarding breast milk sharing. This has been in response to a new group created by my friend Emma Kwasnica in Montreal called Eats on Feets it is a facebook group with global reach. It's purpose is to connect lactating moms willing to donate milk to mamas seeking human milk for their babies. You can also check out www.eatsonfeets.org
My position on the safety of breastmilk sharing is quite simple. Without this my baby would be dead already. I'm for sharing 100%.
My poor breasts have not felt the touch of the baby they lactate for in 11 months. I've been pumping the whole time. I'm immune to the mechanical tug on my mammaries but I miss the connection time. Looking into your baby's eyes while they nurse is known to be one of the closest bonding connections a mom and baby share. Anaya and I share something different. We share my heartbeat and my voice, my touch and my kisses. I lay her head on my chest above my heart and the rhythmic thumping soothes her. This is our bonding time, our hearts beating together, snuggled in love. A friend of mine suggested that I nurse her baby to help improve my milk supply. I was not opposed to the idea. I tried it.
Initially I was scared. I was frightened that it was in some way a betrayal of my love for Anaya, I was frightened that I might enjoy it, I was frightened that in some way it would break my heart, I was frightened that it would show me how much I'm missing and I would drown in my tears forever. Fortunately the baby tried suckling and decided she didn't feel hungry and went to her mama. I only nursed her for like 10 seconds. Nothing happened emotionally except some fear that dissapated rather quickly. I think I'm still scared of the emotions I would feel while nursing another baby.
I love hearing stories from our milky mama's about how when they think of Anaya their milk lets down! How wonderful is that? I cannot give my thanks enough to the wonderful women who have shared their milk with Anaya. Words really cannot express my love and gratitude. Women from all ethnic backgrounds and classes have contributed. Love knows no boundaries. We love you all.
Our Calgary milk organizer - Lucy Lovelock, gave Anaya a present while we were in the hospital that is really very awesome and I have to tell you about it. It's a lamb-stuffy that has a gel hotpack inside that you warm up. I warm it up and use it to warm the milk up on the way through the tube into Anaya's tummy. It works like a charm and I think that every mom should have a gel pack stuffy for their baby. Here's a picture.
At the end of our Calgary trip we stayed for a few days at the Calgary Flames Rotary House. It is next to the Childrens Hospital and is a Hospice and respite centre for palliative children. I can't tell you how amazing it is. We had our own room for sleeping with all the creature comforts of home. There were nursing staff 24 hours a day to help take care of Anaya. They have tons of special gear for handicapped children and even a "Sensory Stimulation Room" where kids with disabilities can explore their environment in a fun way. In the Sensory room we were able to lay Anaya on a special bed that vibrates and moves to music. In this way she can really experience the music with more than just her hearing. If she ever goes deaf she'll still be able to FEEL the music while laying on this bed. Huge thanks are due to the Flames Rotary House and every donor that ever donated money to this great place. Check it out online! Flames Rotary House.
As always I feel like I have so much more to tell you about...but it will have to wait for another time.
Sunday, December 5, 2010
December 5, 2010
We are settling in at home. Anaya's G-tube is healing nicely and she appears healthy and comfortable. We now have more freezer space and are once again looking for milk donations.
This post is short and sweet because I'm so tired - getting over a cold myself.
This post is short and sweet because I'm so tired - getting over a cold myself.
Tuesday, November 30, 2010
November 30, 2010
Today was a good day. We were on the CTV news Calgary talking about how Anaya is fed donated breast milk. It was a good interview I think. Here is the link.
Anaya's Milky NEWS Story
We are able to fly home on Thursday if the weather is good and we are so excited to go home. Nelson has become a winter wonderland of fresh powder. Good thing I got some snowpants at the ski swap. Anaya has a little down snowsuit too. I wonder what she will think of the snow.
I can imagine flakes falling gently on her face, and her wondering what the hell that small cold feeling is. (smile)
Anaya's Milky NEWS Story
We are able to fly home on Thursday if the weather is good and we are so excited to go home. Nelson has become a winter wonderland of fresh powder. Good thing I got some snowpants at the ski swap. Anaya has a little down snowsuit too. I wonder what she will think of the snow.
I can imagine flakes falling gently on her face, and her wondering what the hell that small cold feeling is. (smile)
Saturday, November 27, 2010
November 27, 2010
Yesterday the porter came to get us to go to surgery two hours before we expected them. It was a bit of a shock to my system. My throat tightened and my heart leaped up somewhere near my tonsils. We put her in a gown and proceeded to the Surgery unit.
It's like taxi parking for babies that need surgery. They line them up in cribs along one wall. Each crib has a team of nurses, surgeons and anestisiologists. Then after the parents have said goodbye they wheel them down the hall into their relative operating rooms.
I sat and held Anaya near her crib. Wondering if this was going to be the last time I held her warm little body in my arms and kissed her sweet cheeks. Tears dripped from my eyes onto her blankie and I felt as awful as I did the day we had to put our kitten down. They came to take her from me and I told her how much I loved her and that everything was going to be ok and that I would be okay and that she shouldn't worry about me - just do what was right for her.
Brent kissed her and we walked away together. We found some coffee and went to the waiting room. In the waiting room they have a screen that shows what part of surgery unit your child is in. Anaya is A.C her dr. was BeaudrP. She was in "OR" green for twice as long as she should have been and I started panicking. There was also this nurse who was trying to educated me about how to use the G Tube. I had a real hard time listening to her talk while I was worried about my baby being in her surgery twice as long as she's supposed to be. Then my parents and my brother showed up. We sat for a few minutes watching the screen and then the surgeon Finally came out and said she was doing great and breathing on her own!
I felt like jumping up and down. About half an hour later I got to see her in the recovery room and walk with her to the ICU. My little angel came through! I'm so glad she is able to stay with us longer. I would have missed her soooo much if she had to go already. The G tube site bled a bit but looked tidy. I took a picture of her in recovery directly after the surgery to show you.
Last night's sleep was pretty bad as the ICU has horrible cots for parents that feel like sleeping on a wire hammock. I would waken each time a bell or buzzer would go off because her oxygen level dropped or she stopped breathing for a few seconds. It was stressful.
We are being moved out of the ICU - Anaya is tolerating being fed through her new tube. I think we should be able to go home early this week. I will blog again as soon as I can.
Friday, November 26, 2010
G Tube Surgery
Just a quick update:
Anaya went in at 10 am. The surgeon came out at 11:30 and told us that it went well. She's doing great and breathing on her own. No extubation problems!
We are currently in the ICU and she's a bit grumpy. I'd best snuggle her up.
Anaya went in at 10 am. The surgeon came out at 11:30 and told us that it went well. She's doing great and breathing on her own. No extubation problems!
We are currently in the ICU and she's a bit grumpy. I'd best snuggle her up.
Wednesday, November 24, 2010
November 24, 2010
These past few days we have pretty much been bunkered down inside as it is so cold out. Anaya doesn't do well with cold. Her little body gets chilly and it takes a long time to warm her up again. Before we left Nelson we got her the warmest snowsuit we could find. It's down and we got it at Mountain Baby in Nelson. (They have great stuff). But even in her down suit she still gets cold when we go outside in this -20 celcius weather.
On Saturday we had two lovely ladies come to visit us to give us the gift of their profession. Dana Pugh, from Short and Sweet photography in Calgary and Heather Glenn, who takes baby hand/ foot/ finger imprints to make "Silver Soul" baby jewellery. Dana spent more than an hour with Anaya and I taking pictures. I took Anaya's feeding tube out to show her perfect little nose a bit better. I've only seen a couple of the resulting shots but the one above is so beautiful. I can't get over how lovely it is. You can see more of them on Dana's blog by clicking http://shortandsweetphotography.ca/my-blog/2010/11/anaya/ A good photographer is a true artist. To focus in on an emotion and show it through the lens of the camera takes skill, and training. I can see the love between Anaya and I in the picture above and I will be forever grateful to have it to look at.
While Dana was taking pictures, Heather was trying to get Anaya to press her hand and foot flat onto a piece of special paper that takes an imprint. It was a challenge but eventually we got a passable handprint and fingerprint. I'm excited to see what comes of it.
On Sunday evening Joanne and I moved into a hotel. Initially we were both staying with family on opposite ends of town. It ended up being a real challenge to get together because the roads were so bad and crowded. Traffic..Ugh. So we made the move to be closer to each other and take better care of the baby. It's kinda nice to have my own space to be in. I feel a lot of anxiety and stress leading up to the surgery and it's nice to have a place where I can be alone and lose myself in working on my business plan.
Monday night we were invited over to a milky mom and dad's place for dinner. It was lovely, warm and inviting. Thank you Sarah, Richard and Nathaniel.
A couple times we have ventured out to walk in the plus 15 system (as our hotel is downtown). Both times I ended up having anxiety. There are soooo many people walking through there. It just kinda gets to me. I like my small mountain town of Nelson. I love our even smaller village of Procter/Harrop.
Tomorrow Anaya is admitted to Hospital and Brent is flying in to be here for the surgery. Please pray with us that all will go well and that this is the right thing to do.
Friday, November 19, 2010
November 19, 2010
We made it to Calgary. We had our consultation with the surgeon (Dr.Beaudry) and he will be giving Anaya a G-tube on November 26. We are going to wait out the week here in Calgary and hope the weather warms up a bit. This photo was taken yesterday of my grandfather Al and his great-granddaughter. He recently had his leg amputated and spends lots of time laying down. Perfect spot to put Anaya for a snuggle.
We arrived to find lots of donated milk waiting for us. It was so wonderful. Some of the donors included sweet little gifts for Anaya and I. We are so incredibly grateful - Thank You!
I have mixed feelings about the surgery I'm glad that it's going to be done but I'm scared. I really need Brent to be here for that. We are working on getting him here for Friday morning - and I have to find someone to watch Solara for a few days.
We are trying to remember the peace we felt on tuesday during the Medicine Buddha meditation. Here is Rinpoche with Anaya.
Thursday, November 18, 2010
November 18, 2010
The last few days have passed like a whirlwind. On Tuesday Anaya had a personal healing blessing done by Tibetan Zasup Rinpoche. It was beautiful and Anaya really seemed to enjoy listening to the chanting.
On wednesday we went to the airport to fly to Calgary but our flight was cancelled due to visibility problems in Castlegar.
This morning I'm trying to re-book our tickets so that we can get to the appt in Calgary this afternoon. I'm trying not to be stressed...
Through all the things swirling around us, Anaya is doing well. She seems stable and comfortable. Hopefully we will get to Calgary today.
On wednesday we went to the airport to fly to Calgary but our flight was cancelled due to visibility problems in Castlegar.
This morning I'm trying to re-book our tickets so that we can get to the appt in Calgary this afternoon. I'm trying not to be stressed...
Through all the things swirling around us, Anaya is doing well. She seems stable and comfortable. Hopefully we will get to Calgary today.
Saturday, November 13, 2010
November 13, 2010
We have had an incredible response. I've had more offers for milk then I know what to do with! Unfortunately I cannot accept any more milk donations at this time. Once we come home from Calgary with all this milk our deepfreeze will be full and we should be able to feed Anaya very well for the next few months.
Please know that we love everyone who has offered to help and we hope you will continue on our journey with us by reading the blog and sending us your good energy. I have not had time to write back personally to each offer and I apologize. I'm still working on it.
Anyone who has breastmilk that they would have donated to Anaya should contact their local Eats on Feets group (facebook). There are many sick children who could use your milk! We are advocating to start a milk bank and we have an interview with CTV on Thursday next week.
Anaya had a bit of a hard morning. She was phlemmy and congested. Solara just recovered from a cold. I sure hope Anaya is well by Wednesday. I can't imagine travelling with her if she's not doing well. Today I gave her vitamin C, colloidal silver, and rubbed oregano oil on her feet. I want to nip this thing in the bud.
We feel your support holding Anaya and our family up. :)
Please know that we love everyone who has offered to help and we hope you will continue on our journey with us by reading the blog and sending us your good energy. I have not had time to write back personally to each offer and I apologize. I'm still working on it.
Anyone who has breastmilk that they would have donated to Anaya should contact their local Eats on Feets group (facebook). There are many sick children who could use your milk! We are advocating to start a milk bank and we have an interview with CTV on Thursday next week.
Anaya had a bit of a hard morning. She was phlemmy and congested. Solara just recovered from a cold. I sure hope Anaya is well by Wednesday. I can't imagine travelling with her if she's not doing well. Today I gave her vitamin C, colloidal silver, and rubbed oregano oil on her feet. I want to nip this thing in the bud.
We feel your support holding Anaya and our family up. :)
Friday, November 12, 2010
November 12, 2010
Anaya and I had an article about breastmilk in the paper today. I've gotten quite a few e-mails and comments. I'm working on answering them every time I have a second. Please have patience with me and I will get back to you as soon as possible.
Thank you so much for reading and caring!
Thank you so much for reading and caring!
Tuesday, November 9, 2010
November 9, 2010
I sometimes wonder what Anaya would be doing right now if she were a normal baby. Other babies her age are walking, dancing, eating solid foods and speaking their first words. While everyone else grows up - Anaya stays the same. Right now she is snuggled up in my left arm while I type with my right hand. She breathes, she mews, once in a while her little legs tense up. This is the same behaviour as 6 months ago.
I had the privilege of holding a newborn the other day. She put her hand in her mouth and sucked on her fingers. Anaya cannot move her hand to her mouth - nor suck. I wonder if she remembers any different. Sometimes in her sleep her little tongue moves like a baby nursing. I wonder if she dreams of nursing. I wonder if her dreams are sighted. When someone goes blind do they still dream in images? I would think so.
Anaya slept well last night - she was able to communicate to me that she was uncomfortable by letting out a little cry every minute or so. I changed her position and the little cries stopped and she slept soundly all night. Around 3 am I awoke to the sound of laboured breathing - so I turned on the vapour nebulizer and held the mist to her face. She breathed it in her sleep and her breathing became easier after about 10 minutes. Then I tried to go back to sleep.
It can be difficult to fall asleep once you are fully awake. My mind filled with to-do lists in preparation for the coming day and I started to feel anxiety. I remembered from previous experience that this can spiral into a panic attack. So I stopped thinking about stuff and sang kids songs in my head. I fell asleep sing-song counting in french. Now that I'm awake I dont even remember the song. Funny that.
Now we are up and my thoughts swirl again. When a mama looks at her baby does she ever see the flaws? I suppose we see them - but with unconditional love. Staring gently at her angelic face I wonder if there is a more beautiful baby anywhere on earth. Her eyebrows sit like golden arches over her mossy hazel eyes. Each eyelash curls in lengthy beauty up and to the side. Her delicate little button nose is the perfect spot to kiss, sitting just above her plump little lips.
Today is a perfect day for a snuggle and a cup of tea. In a week and a day we leave for the hospital. I'm striving to make each moment a perfect memory. Giving to my little love all the gentle stimulating experiences I can imagine. I gave her a drop of fresh pressed apple juice on her tongue the other day. Oh how she loved it! Her eyes widened and her little tongue licked her lips. Perhaps I shall find another drop of something interesting today.
I had the privilege of holding a newborn the other day. She put her hand in her mouth and sucked on her fingers. Anaya cannot move her hand to her mouth - nor suck. I wonder if she remembers any different. Sometimes in her sleep her little tongue moves like a baby nursing. I wonder if she dreams of nursing. I wonder if her dreams are sighted. When someone goes blind do they still dream in images? I would think so.
Anaya slept well last night - she was able to communicate to me that she was uncomfortable by letting out a little cry every minute or so. I changed her position and the little cries stopped and she slept soundly all night. Around 3 am I awoke to the sound of laboured breathing - so I turned on the vapour nebulizer and held the mist to her face. She breathed it in her sleep and her breathing became easier after about 10 minutes. Then I tried to go back to sleep.
It can be difficult to fall asleep once you are fully awake. My mind filled with to-do lists in preparation for the coming day and I started to feel anxiety. I remembered from previous experience that this can spiral into a panic attack. So I stopped thinking about stuff and sang kids songs in my head. I fell asleep sing-song counting in french. Now that I'm awake I dont even remember the song. Funny that.
Now we are up and my thoughts swirl again. When a mama looks at her baby does she ever see the flaws? I suppose we see them - but with unconditional love. Staring gently at her angelic face I wonder if there is a more beautiful baby anywhere on earth. Her eyebrows sit like golden arches over her mossy hazel eyes. Each eyelash curls in lengthy beauty up and to the side. Her delicate little button nose is the perfect spot to kiss, sitting just above her plump little lips.
Today is a perfect day for a snuggle and a cup of tea. In a week and a day we leave for the hospital. I'm striving to make each moment a perfect memory. Giving to my little love all the gentle stimulating experiences I can imagine. I gave her a drop of fresh pressed apple juice on her tongue the other day. Oh how she loved it! Her eyes widened and her little tongue licked her lips. Perhaps I shall find another drop of something interesting today.
Sunday, November 7, 2010
Milk News!
News on the milk front!
- 300 donated ounces are arriving today from the lower mainland!!
- a milk donor in Toronto and some of her wonderful friends are donating milk and the shipping fee and will be sending milk this week!
- paypal donations now total $350 and we are having the milk shipped from new York.
Thank you to the midwife who offered to help get the milk from New York - but I think we need to do a direct shipping on that because the dry ice is considered hazardous goods and there would be a fee anyways.
- 300 donated ounces are arriving today from the lower mainland!!
- a milk donor in Toronto and some of her wonderful friends are donating milk and the shipping fee and will be sending milk this week!
- paypal donations now total $350 and we are having the milk shipped from new York.
Thank you to the midwife who offered to help get the milk from New York - but I think we need to do a direct shipping on that because the dry ice is considered hazardous goods and there would be a fee anyways.
Friday, November 5, 2010
November 5, 2010
We are having a busy day today. Just thought I'd share a photo of Anaya and her little baby doll. It's so sweet. When Anaya sleeps they look alike.
Wednesday, November 3, 2010
Milk Donors Needed!
If you are interested in donating your frozen milk we would love to pursue it. We have found that frozen breast milk will stay frozen solid for days as long as it is in a styrofoam cooler with an appropriate amount of dry ice. 5lbs of dry ice per 24 hours is the amount required. The styrofoam cooler is lightweight and cheap - reducing shipping costs. It can be packed inside a cardboard box to reduce shipping wear and tear. We've been using the greyhound bus as it seems to be the quickest, most reliable and affordable transport within BC, Alberta and sask. I'm not sure about the other provinces - I think we'd have to air-courier it with Purolator, but I'm not sure.
I've approached both Fed-ex and Purolator about shipping sponsorship but neither of them have responded to my emails.
Coolers of breast milk can be sent collect on a greyhound bus to
Anaya Cassin-Potts
C/O Camara Cassin
Nelson, BC
250-509-0593 cell
250-229-4034 Home
Be sure to include the phone numbers on the parcel.
I am also trying to get our readers to donate a few dollars by the paypal button on the right to help pay for these shipping costs! If you have other nursing friends in your area why not all get together and fill a cooler with milk for Anaya?
If you are from farther away we are still trying to find a method to get the milk here. Any ideas or help would be appreciated.
There is a lady with 1000 oz of frozen milk in New York, New York who would like to donate but our shipping estimate with Fed-Ex is $448.00. Please help us find a more cost effective shipping solution that will get the milk here within 48 hours! Do you know ANYONE travelling to BC from New York who could take it with them???
I've approached both Fed-ex and Purolator about shipping sponsorship but neither of them have responded to my emails.
Coolers of breast milk can be sent collect on a greyhound bus to
Anaya Cassin-Potts
C/O Camara Cassin
Nelson, BC
250-509-0593 cell
250-229-4034 Home
Be sure to include the phone numbers on the parcel.
I am also trying to get our readers to donate a few dollars by the paypal button on the right to help pay for these shipping costs! If you have other nursing friends in your area why not all get together and fill a cooler with milk for Anaya?
If you are from farther away we are still trying to find a method to get the milk here. Any ideas or help would be appreciated.
There is a lady with 1000 oz of frozen milk in New York, New York who would like to donate but our shipping estimate with Fed-Ex is $448.00. Please help us find a more cost effective shipping solution that will get the milk here within 48 hours! Do you know ANYONE travelling to BC from New York who could take it with them???
Tuesday, November 2, 2010
November 2, 2010
This is our little pumpkin Anaya on Halloween out trick or treating in the local mall. Of course we know that she can't eat the candy - but hey I can :) I wanted her to have an authentic western Halloween experience. So we went trick or treating in costume just like the other toddlers. Oh and were there ever cute costumes everywhere!
Anaya has been much better secretion wise the last few days and we are getting better sleep. I'm so grateful for the good nights. I love waking up in the morning to her sweet little mews. It's like she's saying "Good Morning Mommy!" We snuggle for a time, warm in our blanket and plan out our day. Lately I've been working on researching for my business plan, writing my business plan, taking care of Anaya and my family's needs and having a night to myself on wednesdays. Whew! It's all very manageable when Anaya is doing well. I'm fortunate to have the flexibility that if she's not doing well I can be with her. I love working from home.
Lately I've been thinking about our trip to Calgary to see the surgeon about the G-tube. I really feel good about how she is doing all around. I think she is pretty stable with her breathing an apnea. She has not had repetitive apnea in a long time. I think that the part of her brain that controls her breathing is in pretty good shape. Last time they wouldn't do the surgery because they thought there was a good chance she wouldn't survive. They thought that the extubation (removal of the breathing apparatus) after the surgery would go badly, and as we are not wanting her on life support, she would die.
There is still a very real chance that she could die from the extubation now, but I do believe it is less than it was before. It's so hard to know what the right thing to do is. I want her to be comfortable and happy in her life. I know that the NG tube she has in her nose has caused incredible discomfort and irritation. Her whole nasal passage was swollen closed to the point we couldn't even get the tube in! Is it worth the risk of possibly dying to gain more comfort? These are hard questions. Her life expectancy is short...with the possibility of things becoming much much worse. Painful seizures, and loss of hearing are some of the expected symptoms.
Where do I place my faith? Do I trust in "God" to take her when the time is right?, do I trust my instinct, go forward with the surgery and just know that her time is her time? How will I assuage the guilt I'll feel if she does die on the table? Since the moment I found out my baby was sick I've been willing her to push forth, hoping for a miracle. Wanting her presence in my life to continue.
In order to proceed with the surgery, I will have to let go of the expectation that she will survive it. I will have to accept the very real possibility that the time before the surgery might be the last kiss, the last snuggle, the last mew. During the extubation I might have to hold her in my arms and watch her fade away, turning all shades of blue and grey. Returning home with empty arms to a life without a centre and a home full of her belongings. Having to pack up the momentos of her life, knowing I chose the surgery.
On the other side she might come through with flying colors. Things go just as they should and there are no complications. We get the surgery done immediately and extubation is a snap. She has no infection problems and the pain from the button is manageable with pain relievers. We come home a week later.
Those are the thoughts I've been having. Weighing the risk against the benefit. For now I'm just going to put on some nice piano music for my little love and watch the sound caress her being. I can tell she loves it.
Saturday, October 30, 2010
October 30, 2010
Last night my older daughter had a Halloween slumber party. Anaya seemed to enjoy listening to the ruckus of little girls screaming and running through the house. I had fun playing games with them and freaking them out by putting severed plastic fingers in the pasta dinner. I should have made less, because after that they wouldn't eat it. I had to bribe them with cookies.
Anaya has had a good couple of days since our last trip to the hospital on Tuesday. Tuesday was awful. We couldn't get her feeding tube through her nasal passage. She ended up with a bleeding nose. This has never happened before. I've been doing her tube insertion every week for a year, and this is the first time we could not get it in either side. Both the nurse and I tried. So we took her in to see the pediatrician, who said her nasal passages are swollen and blocked.
I started having nightmare imagery of an emergency trip to the childrens hospital, but my fears were quickly put away when the Dr said we could put the feeding tube in her mouth. She placed it with ease and we were able to feed the baby. Phew!!
On November 18 we have a surgery consultation with Alberta childrens for a G-tube again. Maybe this time they will deem her stable enough to proceed with it.
Anaya has had a good couple of days since our last trip to the hospital on Tuesday. Tuesday was awful. We couldn't get her feeding tube through her nasal passage. She ended up with a bleeding nose. This has never happened before. I've been doing her tube insertion every week for a year, and this is the first time we could not get it in either side. Both the nurse and I tried. So we took her in to see the pediatrician, who said her nasal passages are swollen and blocked.
I started having nightmare imagery of an emergency trip to the childrens hospital, but my fears were quickly put away when the Dr said we could put the feeding tube in her mouth. She placed it with ease and we were able to feed the baby. Phew!!
On November 18 we have a surgery consultation with Alberta childrens for a G-tube again. Maybe this time they will deem her stable enough to proceed with it.
Monday, October 25, 2010
October 25, 2010
Our nights have been long and sleep deprived lately. Our battle to manage Anaya's secretions and keep her comfortable is a long and tedious one. Sometimes her breath rattles so deeply there is no way I can sleep. You can hear it, the thick bubbly mucous, as she struggles to draw air through her windpipe. If she breathes deeply she inhales some of it and awakens choking. I sit up quickly with her in my arms, position her head in the crook of my left arm, reach over and grab the suction tube with my right hand and flip the switch.
The suction machine comes alive with the roar of a small generator. Her eyes widen and she gives a mighty cough (which is a heaving yell), managing to bring the phlem up into her mouth. I place with vacuum tube gently in her mouth and it grabs the gob of yuck and pulls it through the tube into the cannister.
She is granted a few moments respite and a few deep breaths. We lay back down. I on my back with her draped over my chest. I can feel her- each breath and sigh. In a few moments a new layer of phlem will form and the rattle will start again. I lay there and wish I had the ability to will away her discomfort. We fall asleep together for a time. Knowing we will awaken again all too soon.
Morning comes and I awaken exhausted. Downing a cup of coffee I turn to the tasks of the day, knowing I must press on. There are calls to be made, places to go, people to see. Only to come home to my nest and cradle my love upon my chest.
My little love rests easier now.
The suction machine comes alive with the roar of a small generator. Her eyes widen and she gives a mighty cough (which is a heaving yell), managing to bring the phlem up into her mouth. I place with vacuum tube gently in her mouth and it grabs the gob of yuck and pulls it through the tube into the cannister.
She is granted a few moments respite and a few deep breaths. We lay back down. I on my back with her draped over my chest. I can feel her- each breath and sigh. In a few moments a new layer of phlem will form and the rattle will start again. I lay there and wish I had the ability to will away her discomfort. We fall asleep together for a time. Knowing we will awaken again all too soon.
Morning comes and I awaken exhausted. Downing a cup of coffee I turn to the tasks of the day, knowing I must press on. There are calls to be made, places to go, people to see. Only to come home to my nest and cradle my love upon my chest.
My little love rests easier now.
Friday, October 22, 2010
October 22, 2010
The week has flown by in a flurry of activity. I hesitate to embrace how fast time is flowing. It frightens me to think that as this river of experience flows, eventually it will reach the ocean. The biggest thing is that I don't know what the ocean will look like. Will it be of despair? Sadness? Grief? Acceptance? Joy? Freedom? Whatever it is, my river of experience is connected to it - and downward flowing we go.
Anaya has been having mixed experience days. The past few nights sleep has been very good, comparitively. The mornings seem to be the worst for her. She awakens with a frog in her throat and needs at least an hour of special intensive care to manage those secretions. She seems to be stable as far as the demyelination goes. Her motor skills haven't gotten any worse. She can still open her eyelids and cry, as well as numerous other Anaya skills. I'm glad that this period of stability has been so prolonged.
The past two weeks I have been working on my business plan, attempting to find breast milk donations, trying to organize shipping for milk and trying to find a shipper that will donate their services. On top of this I'm trying to get wood in for winter, give my older daughter attention, take Anaya to her Dr's appointments and do all the little things that moms have to do for their families. I'm feeling a bit bogged down.
What keeps me going? The love and support I get from you, my readers, the support from the moms, the Nelson community. Have I ever told you how much I love Remedies Pharmacy in Nelson? They have been donating Milk storage bags to moms that pump for Anaya for the past 8 months! They are a consistant loving presence in our lives. They support our lifeline- the breast milk we get from our beautiful milky mamas.
Even when I feel the weight of the world on my shoulders, I can feel your support. Thank you.
Anaya has been having mixed experience days. The past few nights sleep has been very good, comparitively. The mornings seem to be the worst for her. She awakens with a frog in her throat and needs at least an hour of special intensive care to manage those secretions. She seems to be stable as far as the demyelination goes. Her motor skills haven't gotten any worse. She can still open her eyelids and cry, as well as numerous other Anaya skills. I'm glad that this period of stability has been so prolonged.
The past two weeks I have been working on my business plan, attempting to find breast milk donations, trying to organize shipping for milk and trying to find a shipper that will donate their services. On top of this I'm trying to get wood in for winter, give my older daughter attention, take Anaya to her Dr's appointments and do all the little things that moms have to do for their families. I'm feeling a bit bogged down.
What keeps me going? The love and support I get from you, my readers, the support from the moms, the Nelson community. Have I ever told you how much I love Remedies Pharmacy in Nelson? They have been donating Milk storage bags to moms that pump for Anaya for the past 8 months! They are a consistant loving presence in our lives. They support our lifeline- the breast milk we get from our beautiful milky mamas.
Even when I feel the weight of the world on my shoulders, I can feel your support. Thank you.
Tuesday, October 19, 2010
October 19, 2010
Today was a much better day.
Anaya slept well last night and only needed to be suctioned once. It so happened that she threw up a little bit before bed and the residue made her throat gurgly and gross. It makes her uncomfortable. I put a bit of water in her mouth and sucked it out with the suction to help her get rid of the unpleasant taste. No one likes the taste of vomit.
Once we got that under control we slept great.
Today was both productive and beautiful. Anaya enjoyed a great day with Joanne while I worked away at my various projects both work and family related.
This picture is of Anaya before her walk all snuggled up in layers of blankies with her bear hat on.
She loves her walks.
Still no word from Fed-Ex. Although I did hear back from Greyhound. They have cancelled their charitable program all together. Rough. company must be having hard times.
Monday, October 18, 2010
October 18, 2010
Last night was awful. Anaya kept waking up every 10 minutes choking on her phlem. I had to suction her at least 10 times. I lost count. I should have put her new medicine patch on yesterday. It must have worn off last night.
Poor baby was so tired. I am so tired.
Poor baby was so tired. I am so tired.
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