We have returned home from the hospital. Anaya is still recovering from her cold. She lost her voice a few days ago. When she opens her mouth to cry and scream - no sound comes out. It's is kind of nice. I can hand her to someone to hold her and not have to listen to her complaining about it! I do hope she recovers soon. Her coughing is not fun to watch.
A big thank you to the nurses at Nelson Hospital for treating us so well and making fresh OSO coffee! Huge thank yous to the moms who brought milk and food. Love!
Nurse Veronica is supposed to be coming today to help with Anaya. I also put an ad on I love nelson.com looking for another nurse. I hope to de-clutter some of my house today as things have been accumulating for more than a month. I will also start calling people to give them a personal thank you for contributing to Anaya's Procter fundraiser. (At least this is the plan)
I have found a foundation that provides information for families of children with Krabbe Leukodystrophy. It is called the Hunters Hope Foundation. They are searching for a cure and helping families with emotional/social support. It is based in new york state. http://www.huntershope.org
When we have our next fundraiser we will be sharing the proceeds with the foundation to help other families and to help find a cure. We need the funds so that I can continue to stay home with Anaya when my maternity benefits end. I'm the only person she settles for currently and she needs me by her side. The Prestige Inn has offered their ballroom on June 11. That's not a lot of time to prepare but I have faith that it will work out. The event will be more formal, with a gourmet dinner, guest speakers and silent auction. Anyone who'd like to help out with the event in anyway please e-mail healinganaya@gmail.com or call Tom at 250-505-0275.
On a completely different note:
Master Ming continues to do high level medical qigong with Anaya and he asks that all other energy workers hold off during the next 2 weeks. Thank you for your help. He is very specifically working on a genetic level to get her body to produce galactocerebrisidase. He has previously facilitated the miraculous healings of several other people - some of whom I have met. I pray that the higher power in the universe will help him and make it so.
Anaya nursed twice yesterday and also brought her hands to her mouth. These are great signs! Let's keep the hope alive and enjoy every moment.
Keep up the great work you sweet baby!! We are routing for you!! All my love to you Camara, you look so tired. You hardly look like the woman I used to know. Much love an light to you both! Good sleeps and good eats too ;)
ReplyDeleteJessie, Calgary A.B.
Glad to hear Anaya is feeling better. I was looking at the Mayo clinic site and there is a support number on the site. I searched Mayo clinic and Krabbe disease. Thinking of you and hope Easter weekend was tolerable in the hospital. Love Carrie
ReplyDeleteThe Higher Power of the Universe, God, is waiting for you to ask Him directly for healing of Anaya. He is capable, willing and so full of love for you.
ReplyDeleteI ask God to heal her everyday. I realize that her destiny is her own. It will turn out how it is meant to.
ReplyDelete