Tuesday, March 16, 2010
Tuesday March 16, 2010
Anaya Xanthe Delia Cassin-Potts (6 months old) was diagnosed as having a demylinating nueropathy of the brain last month at the Calgary Childrens Hospital. Her symptoms have included delayed development, choking while eating, sleep apnea and a sarcastic looking eye roll. After being told that her condition was degenerative and palliative we brought her back to our home in the Kootenays. We were told that there are no conventional treatments for this disease. We were given books on how to prepare for the death of our baby. We've been given lots of medical type supports for Anaya including home oxygen and nursing support. Our doctors here include Dr. Fitzimmons and Dr. Kalia, both of whom are on our side and have gone above and beyond their duties to help our family.
We've decided to believe that our daughter can heal from this disorder. We are trying numerous alternative therapies. She is seeing a naturalpath, a craniosacral therapist/reiki master, a medical qigong master and a Dr. of Chinese medicine. She has been prescribed herbs, supplements, vitamins, probiotics, omega oils and massage. We want to give our baby the best opportunity possible to heal herself.
During the course of our journey I (Camara Cassin, Anaya's Mom) began producing less breastmilk and Anaya began to be supplemented with formula. She developed severe reactions to all the formulas we tried including gas, vomiting and mucous. Eventually in desperation I reached out to other mothers to help feed my baby and the community has responded. Lactating mothers are contacting me in droves wanting to donate their breast milk to help feed Anaya. Local baby business Mountain baby has donated pumps to moms and put out a donation envelope. Our family members have shown their support. It has been a week of healing and small miracles.
Anaya has responded very well to our initial treatments, this is especially obvious now that she is on a breast-milk only diet again. She has been wide eyed and alert (we were told she couldn't open her eyes due to muscle weakness), she has been moving her arms and legs more and watching her hands (we were told to expect mostly paralysis), She knows who I am and plays favorites - indicating her cognitive abilities (we were told she'd be limited). It goes to show you that we do not have to believe everything western medicine says. Healing and miracles do happen with the right attitude and the ability to try.
Anaya is very particular lately and needs constant care every day. I spend most days holding her in my arms, pumping milk and occasionally writing on her blog. Her father Brent prepares all our meals, cleans, does errands and grocery shops, prepares our older daughter for school and takes the dogs out. It is very busy around here - like a little earthquake with a small radius, our lives revolve around our baby. Around healing Anaya.
Our beautiful baby girl teaches us incredible lessons in patience and in how to allow others to help us in our time of need. I cannot convey enough gratitiude to those who have contributed thus far in any way to Anaya's health and the well being of our family. We are so blessed to be living here among people who truly care for one another. Today my neighbor brought over some food she made for us and some milk that she pumped for Anaya. Where else would this happen? Bless your heart. Our extended family have been very supportive. Without them we wouldn't have made our rent this month. It has been a very expensive month.
Our room mate Tom Best, along with other friends and community members, have put together a fundraiser for our family to happen on March 27th at the Procter Hall starting at 4 pm with food and acoustic music. There will be a silent and live auction of donated items followed by live local bands, followed by DJ's for the people who like to stay out late and dance. We are still looking for Auction items and kitchen/food volunteers. Please contact Shelann for Auction item donation /Food Volunteering ONLY at 250-229-2341. For all other Fundraiser inquiries please contact Tom Best at 250-505-0275.
In our hearts we know that each of us is only here on this earth a short time. But each of us has a purpose and each of us is given the time to accomplish that purpose. Perhaps our baby Anaya has come to teach us all lessons in appreciation and love for family and children. I can't say for others, but for me she teaches me more and more each day. This is also a lesson in faith. I believe we will find a way to help our baby, and I believe that we can find ways to afford whatever it may cost.
We hope to see you on March 27th at the Procter Hall. If you would like to contribute in some way please contact the people mentioned above. Can't make it to the fundraiser? Keep tabs on the blog for the next event or click the "Donate" button.
Many blessings to you.