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.
Camara hello. I have the same problem with Segev but found a method that works to keep him from literally fighting for air: please read the article i wrote on the facebook page, lung problems. In short, inhalation with bronchodilaters before bedtime, if she wakes at night, physio: tapotement, chest compressions and humidification. Give it a go.
ReplyDeleteAll the best
You have a beautiful way with words.
ReplyDeleteAnd there's so many of us who support you. :heart:
Hrmmmm, I noticed FedEx has a facebook page...I wonder if linking there may help?
ReplyDeleteCamara, Our thoughts and best wishes are always with you, Anaya and Brent and Solara. I know we don't talk a lot but we are always thinking of all of you and care about all of you. Hugs for everyone, x0x0x0x0, Love, Alan& Eliesha.
ReplyDeleteHello Camara,
ReplyDeleteThank you for sharing your experiences on the internet - I can imagine that this blog will be so helpful for parents going through the same nightmare.
Praying for you and Anaya. Hope today is a good day for you both.
With love,
Hayley (friend of Danielle H.'s)
You have so many people thinking about you and your family. xoxoxoxoxoxoxoxo
ReplyDelete