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.
Saturday, October 30, 2010
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.
Saturday, October 16, 2010
October 16, 2010
Goodmorning.
The visit to the opthamologist was long. We showed up 15 min early for our appointment and then sat in the hall waiting for an hour an a half.
Dr.Lyons took us into his office and asked what our problem was. I told him of Anaya's condition and that we were wondering if she can see anything. I explained that she stopped making eye contact long ago.
He checked her pupillary response - nothing. Then he looked at her optic nerve. He looked into my eyes and said "I'm sorry, the degree of atrophy is very bad. It is unlikely that she can see anything."
I was expecting this but I was hoping for something more. My eyes teared up. I thanked him and left with Anaya. Walking through the hospital I cried. I was talking to myself - it's silly to cry now Camara - you already knew this! Why are you crying?
And we went home.
No word yet from Fed Ex. But two wonderful mamas from Langly BC sent milk on a greyhound bus yesterday. Thank you so much!!!
The visit to the opthamologist was long. We showed up 15 min early for our appointment and then sat in the hall waiting for an hour an a half.
Dr.Lyons took us into his office and asked what our problem was. I told him of Anaya's condition and that we were wondering if she can see anything. I explained that she stopped making eye contact long ago.
He checked her pupillary response - nothing. Then he looked at her optic nerve. He looked into my eyes and said "I'm sorry, the degree of atrophy is very bad. It is unlikely that she can see anything."
I was expecting this but I was hoping for something more. My eyes teared up. I thanked him and left with Anaya. Walking through the hospital I cried. I was talking to myself - it's silly to cry now Camara - you already knew this! Why are you crying?
And we went home.
No word yet from Fed Ex. But two wonderful mamas from Langly BC sent milk on a greyhound bus yesterday. Thank you so much!!!
Thursday, October 14, 2010
Fed Ex Shipping Sponsorship continued
I am so happy that so many of our blog readers have commented on the Fed-Ex post. I have just heard that there are people within Fed-Ex reading the blog! Our voices are being heard!
One question I've recently been asked is "Why does Anaya need the breastmilk?" The answer has two parts.
Anaya has infantile Krabbe Leukodystrophy, her symptoms onset at age 4 months. It is a demyelinating condition that has taken away the motor skills section of her brain. At 5 months she could no longer suck and swallow at the breast without choking. She was given a feeding tube to ensure her nutritional requirements were met. I got a very good breast pump and pumped my milk for her- but the stress of having found out my baby is expected to die, coupled with no longer having my babe nursing at the breast drasticly reduced my milk supply. We tried to supplement with formula. Her reaction was immediate. She would vomit, have diarrhea and was losing weight. We tried all types. She showed intolerance to all of them.
At this point a couple of friends of mine with babies offered to give some of their milk to Anaya. Then I wrote about it on the blog, then the newspaper wrote about it, then we had a strong response from the Nelson and area community. We were able to switch her back to a breast milk only diet. The response was amazing. Anaya's health stabilized and she started gaining weight.
I later spoke on the phone with an expert on Krabbe, Dr. Escolar in North Carolina. She told me that if Anaya was taking formula it would have a negative impact due to a conflict with her secretion management medicine, scopalimine. I was told that the combination of the two would result in constipation and possible impaction of the bowel. She said the reason Anaya is doing so well on the scopalimine is because of the properties of breastmilk that give it a laxative effect, while maintaining high nutrient absorbtion.
Since then we have struggled to find a consistant supply. I still pump every day - which I have been doing for 9 months, but my supply has never increased. It gradually fades away. Now I get only enough for 1 feeding per day. She needs 8.
Frozen milk donations of large quantity have been our saving grace. When our fresh donations supply falls short, we have a back up. But we use it everyday and when we get low the panic sinks in. Will we have enough? So far we have squeeked by - but with Moms from all over wanting to send us their frozen milk we would definately have enough - if only we could get it here.
Anaya is a special gift. Her presence has touched so many people. Her struggles and successess are lessons to us all. I'd like her to stay healthy, keep growing, and stay alive as long as she's able.
Please help us Fed Ex. It's a matter of life and health.
One question I've recently been asked is "Why does Anaya need the breastmilk?" The answer has two parts.
Anaya has infantile Krabbe Leukodystrophy, her symptoms onset at age 4 months. It is a demyelinating condition that has taken away the motor skills section of her brain. At 5 months she could no longer suck and swallow at the breast without choking. She was given a feeding tube to ensure her nutritional requirements were met. I got a very good breast pump and pumped my milk for her- but the stress of having found out my baby is expected to die, coupled with no longer having my babe nursing at the breast drasticly reduced my milk supply. We tried to supplement with formula. Her reaction was immediate. She would vomit, have diarrhea and was losing weight. We tried all types. She showed intolerance to all of them.
At this point a couple of friends of mine with babies offered to give some of their milk to Anaya. Then I wrote about it on the blog, then the newspaper wrote about it, then we had a strong response from the Nelson and area community. We were able to switch her back to a breast milk only diet. The response was amazing. Anaya's health stabilized and she started gaining weight.
I later spoke on the phone with an expert on Krabbe, Dr. Escolar in North Carolina. She told me that if Anaya was taking formula it would have a negative impact due to a conflict with her secretion management medicine, scopalimine. I was told that the combination of the two would result in constipation and possible impaction of the bowel. She said the reason Anaya is doing so well on the scopalimine is because of the properties of breastmilk that give it a laxative effect, while maintaining high nutrient absorbtion.
Since then we have struggled to find a consistant supply. I still pump every day - which I have been doing for 9 months, but my supply has never increased. It gradually fades away. Now I get only enough for 1 feeding per day. She needs 8.
Frozen milk donations of large quantity have been our saving grace. When our fresh donations supply falls short, we have a back up. But we use it everyday and when we get low the panic sinks in. Will we have enough? So far we have squeeked by - but with Moms from all over wanting to send us their frozen milk we would definately have enough - if only we could get it here.
Anaya is a special gift. Her presence has touched so many people. Her struggles and successess are lessons to us all. I'd like her to stay healthy, keep growing, and stay alive as long as she's able.
Please help us Fed Ex. It's a matter of life and health.
Wednesday, October 13, 2010
Fed-Ex Shipping Sponsorship
We have received a frozen breastmilk donation from a mother in Nanaimo. We are very blessed that the transport of the milk all worked out as we had a friend (Dave) who was actually going to the island and returning to Procter quickly. He picked up some dry ice, which kept the milk frozen solid during the long drive.
I am so thankful to Vanessa, Dave and his daughter Shona for their help.
This morning I contacted Fed Ex about a shipping sponsorship. We have been contacted by moms in Ontario and the United states that would like to send large amounts of frozen milk but the shipping costs are prohibitive. Lets all hope and pray that the Angels at Fed-Ex are going to approve our shipping sponsorship so that we can get milk from these helpful moms to Anaya.
Leave your comments for the Fed Ex Angels with this post!!!
Anaya has had a rough couple of days. She is really struggling with mucous secretions and is needing constant nebulization and suctioning. She isn't sleeping well and mornings seem to be the worst. At this point she is doing much better than yesterday. I was at a business course with Community Futures yesterday but her nurse took excellent care of her.
Today I'm at home with Anaya writing a market research plan and survey, as well as finding my competitors. My business idea is still under wraps until I get my city license. Tomorrow I will continue with my plan as well as take Anaya to see the childrens Opthamologist (eye doctor) who is coming to Nelson for a clinic from the BC Childrens Hospital. We were told she is likely now blind by our pediatrician but I am hoping that the opthamologist may be able to give us a more concrete assesment of her visual condition.
Please take a minute and send some clear breathing thoughts/prayers to Anaya today.
Friday, October 8, 2010
Friday October 8, 2010
There's only so much dwelling one can do on the same topic for any length of time. I have dwelled deep in the depths of my emotions, and have come out with new perspectives. I think that contemplating death is on some level good for the soul. It brings more appreciation to everyday life. More meaning to the moments.
The sadness that was so overwhelming initially has broken like a wave over rocks. The water still remains but the inertia is gone. Now grief sometimes grips me in moments of sweet tenderness. I have prepared myself for her death so much that I'm done with it for now. She's stable, she's healthy (for her), she's not in apparent pain and there is absolutely no way of knowing if she's going to live to tomorrow or 5 years from now. Hunter Kelly - a boy with Krabbe, lived to be 7.
So now instead of preparing for and dwelling on death I'm preparing for life and living.
The picture above is of Anaya in her sling wrap on our walk tuesday. I found a daisy to clip into her hair. Fall is a fantastic season. Life withdraws into itself - preparing for the cold months, some things bloom and then die. It's truly a beautiful amazing thing. The cycle of life and death "For life and death are one, even as the river and the sea are one".
The contemplation of such things brings a certain grace into your life and a certain wisdom into your heart. Nothing is lost. Spring will come again. But this has changed me. I look upon the world with the eyes of the crone. People my age, even older seem so young and vibrant and innocent. Sometimes I find it difficult to connect with them. I find comfort in my matronly friends who have loved and lost deeply and comprehend my grief and my small joys. I seek not to judge, each person is unique and is experiencing life for themselves. None has a more valid experience than the other. We are each here for our own lessons. I don't think we really know what they are until we look back on them.
I look back and know my little love has already taught me so much. "To the depth you feel pain, to the same extent you will feel your joy" - well I'm certain that this is true now.
Our days cycle on, constantly striving to live in the moment. Anaya is well. Sweet, innocent, warm and loved she carries on with her unique experience of life. I don't forsee an ending, I've let go of it for now.
This is Anaya yesterday holding one of her teething toys in her mouth. She is unable to hold things in her hands but has recently discovered how to hold things with her teeth. She is so focused and is concentrating really hard. It was so cute. I wanted to share it with you.
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