Thursday, September 30, 2010

Thursday Sept 30, 2010

This past week has been a flurry of activity. From coming home from the hospital, resting for a couple rainy days, attending a wedding and then attending a two day seating clinic in Castlegar.

The seating clinic was fantastic and amazing. There is a team of professionals that come from the BC childrens hospital sunnyhill seating division to help handicapped children in the koots with things like wheelchairs, chairs that support their bodies properly, special beds, walkers, standers etc. Russ is the custom builder and he has a van outside the hospital and they take custom measurements and then customize your unit while you wait! It is just outstanding. Russ is the man of the hour. He designed and custom built both a chair and a stander for Anaya.

Anaya seems to really like the chair and the stander will take some getting used to and a lot of practice. It is hard on her body to stand erect, even strapped in as it is, because her little joints and muscles are so soft from never being used. Our physio therapist recommended that we start with a few minutes once or twice a week, after we get some special orthotics to help keep her feet aligned.

You can see in the pictures just how grown up she is now 13 months old! She has surpassed the average life expectancy for kids with Krabbe and we hope she stays strong and stays as long as she feels inclined.

I also got excellent news yesterday. I got accepted to the smart start program so I will be working on developing a business plan for the next couple months. I will need to spend a couple days a week in Nelson but the rest of the time I can work from home and be close to Anaya and HAVE AN INCOME!!! I'm really excited about the prospect of having a challenge that stimulates my mind, makes money, and allows me to be at home with my little love in case she needs me.

Anaya is doing very well health-wise this week and although the trips to Castlegar were strenuous I think some mellow time and rest today will do her good.

Saturday, September 25, 2010

Saturday September 25, 2010

Good morning world!
Anaya and I are back home. She responded really well to the antibiotics and all the love she received in the hospital. She is still dealing with a stuffy nose but her lungs are clear. Thank you to everyone who helped with her recovery - by pumping milk, bringing food, visiting, praying and sending your well-wishes.

The day we went into the hospital our dog Alexander died in a tragic accident. As a family we've been grieving his loss. Pets come so close to the heart. I believe he thought of himself as Anaya's protector. He used to keep other dogs away from her - and strange people too. Now I'm certain his spirit will be there to guide and protect her as she continues on her journey. She was the only one he kissed every morning. A little delicate lick on the cheek. It was always the sweetest thing to witness.

He had his faults but we loved him anyway and he will be and is sorely missed.

Rest Peacefully Alexander. I hope to see you in my dreams and I'm counting on you to be there for your baby girl when she needs you.

Saturday, September 18, 2010

Saturday September 18, 2010

Anaya started having breathing difficulties yesterday. I brought her to the hospital. She has pneumonia and is now on antibiotics. She slept all day. She is now awake and distressed. I must go.

Tuesday, September 14, 2010

Tuesday September 14, 2010

Fall is definately here with a vengence. The hot winds of August have been replaced by the cool grey shroud of fall. The leaves are turning yellow, orange and red. It reminds me of last year, freshly home with my newborn baby Anaya. She was so precious and such a voracious little feeder. She pretty much nursed all the time. My memories of the time after her birth are clouded. What is there to remember? She nursed and slept. Time is stealing away the precious moments I didn't catch on film. Which day did she first smile on? I don't remember, I didn't write it down - what day did she lose her smile? I dont know it happened gradually.

In general I try NOT to remember what she used to be like before she got sick. Because then I grieve for what's been lost. I try to stay in the here and now. I breathe in her clean baby scent. Kiss her sweet soft cheek and revel in her simple presence. I have no idea how long we will go on like this but that's okay. As a whole I think she's still aware of things that are going on around her. Her mama still brings her comfort and she's not suffering every moment. The apnea seems to have lessened in it's intensity. She no longer turns blue several times a day. The choking has gotten less, the mucous is much more manageable, she only needs suctioning a few times a week lately. Would it be wrong for me to pray that things stay like this until the end? I don't want her to get worse. I don't want her to suffer. I would rather be suprised and wake up to find she's left us. But I don't get a choice. I just get to go along with her on her journey. The rest is up to her and, for lack of a better term, God.

My maternity leave has ended and I'm seeking to make work for myself. I've gone to the community futures program with an idea for a home-based business. So that I can be close to Anaya and still make money. I can't imagine missing that many hours of her life. At least when I work at home I can take a five minute break and hold her, kiss her, sing her a song and let her know that I'm still here. If I spend too much time away would she forget me? Am I attached to the idea that she knows me? Yes. I want her to know me.

Financially things are tight. A lot of money got spent in the early days of Anaya's illness. Back when I still thought that there must be a treatment that could stop the progression of the disease and heal her. We tried everything - and so many things made her worse- or helped a wee bit - or did nothing. A word of advice to moms of young babies. If a naturopath or TCM tells you to radicly alter a baby's diet with the addition of herbs and supplemnts DONT. God it made her so sick. She was puking and pooping and losing weight for weeks. Then we tried more energy-related healing methods. It didn't hurt her but it didn't seem to heal her either. We did meet a lot of very helpful healers who had their hearts in the right places. Some days we spent more than $500 a day...I don't know why I'm rambling on about this. I do not regret trying everything we could. I just wish it had worked. I wish my baby was cooing and smiling and nursing. By now she'd be walking. She might even say things like "mama" or "dada". Instead I'm trying to figure out how we're going to move her when she gets bigger so that we don't dislocate her shoulders.

I'm going to stop torturing myself now. Stay in the PRESENT Camara!

Anaya is still sleeping. In another hour our nurse will be here to help with her. I'm working on my community futures application and I have the will to succeed. Everything is going to be ok.

Thursday, September 9, 2010

Thursday September 9, 2010

Anaya slept well last night. It's amazing how much a change of position helps her. Her favorite way to sleep is with her head over my heart. Her breathing clears right up and she drifts off into her dreams. I wonder if she "sees" in her dreams. She did have vision for 5 months.

Today is the day I was born. My mother is deceased and today is one of the days I miss her. Thank you for birthing me, mom!

Solara sang to me in bed this morning. It was sweet. :)

Wednesday, September 8, 2010

Anaya's viewpoint

I am warm
my tummy is full
Mama holds me
My toes tickle
my feet twitch
I see colors flying - my angels dancing
breathing in breathing out
I hum a sound and yawn
Mama runs her fingers through my hair, over my brow
Oh - the sweetness of touch.
Tingling awareness of light feathered moments
Needing to move I arch and bend
My mommy helps me
She is my support
I feel her kisses gently on my face
I open my mouth and smack it closed
I want to smile - Good morning Mommy!

Tuesday, September 7, 2010

Tuesday September 7, 2010

The cool air of the morning caressed our faces, the scent of lingering woodsmoke alighted gently on the tip of my nose. Anaya and I snuggled deeper into the blankets - surrounded by warmth. Knowing that tuesday mornings is Bryna Martin's morning at the Procter Bakery I felt inspired to get up and take Anaya for a cup of coffee in the warmth of the oven-heated bakery. Joanne is taking today off in lieu of thursday and so it is a nurseless day. Nurseless days are generally quiet days for me. I spend time with Anaya and reflect on life.

After dressing us both up nice and toasty- we zipped down to the bakery. Bryna is so on top of her baking days. At 8 am there were already cinnamon buns, muffins, scones and she was working on apple tarts. It has taken me a while to get to know Bryna, we were pregnant at the same time and her daughter Ella is only a few months older than Anaya. Bryna is a sweet and kind woman with a good sense of humour. We spoke of children, we spoke of times before children and how life changes after you welcome a child into it.

I held Anaya in my lap and sipped my coffee, turning the feeding pump on and listening to the little sounds it makes as it gently pushes the warmed mama-milk into her tummy. She makes contented little sounds - although she was a bit wet in the throat this morning. I took in the sweetness of her face, her blond hair has gotten longer - creating a golden halo. I had clipped a small white flower clip into her hair on my way out the door and it looks so cute there.

Returning home to the breast pump I sit here now and write. The day feels like one of creation and kitchen warmth. Perhaps some baking could be done if Anaya will cooperate. I plan on doing some of her favorite things with her today. Singing to her, walking with her, bathing her. Onward with love we go!

Sunday, September 5, 2010

Sunday September 5, 2010

This picture of Solara and Anaya was taken a week ago, the day of Catherine and Charlies wedding reception. Anaya looked so sweet in the outfit - and her adoring sister was sweet too!

We had a small birthday dinner for Anaya last week. A few close friends came over and we even had a cake. I put a little bit in Anaya's mouth do that she could taste it. She seemed to enjoy it. I also put a sucker in her mouth for a few moments and she liked that too. Her birthday WAS a big deal. I just haven't been inspired to write about it. It was a deeply personal experience for me. I am very happy my little girl has been doing so well and is still here with us. She beings more joy than sadness to my life. I think sometimes I write too many sad blog posts and not enough happy ones. I guess it's because when I get down I feel like writing to get the feelings out. This week I will strive to share more of the fantastic moments with you.

Today is a stay at home Sunday. This morning Anaya has been hanging out with Brent while Solara and I puttered in the kitchen making blackberry peach jam. Our neighbours (Raeanne and Lloyd) let us pick some of their blackberries. Solara, Anaya and I walked over there yesterday. Let me tell you what blackberry picking sounds like. OUCH!!! I got pricked a few times. Before we went picking we canned diced tomatoes. I had initially given up on the idea but Solara was persistant because she loves dicing tomatoes.

This week Anaya has been more phlemmy than previously. The start of August was so great for her. I'm not certain exactly what has changed for her but I think it could be teething. She now has two teeth on the bottom and two coming in up top. Poor little darling. Sometimes,even in her sleep, she mews in pain. I've been giving her ibuprophen and rubbing her gums. Little dear can't even chew on anything to relieve the pain. The painkillers seem to help. She's out cold right now - we gave her some medicine a little while ago.

Now it's time to pump again. I can't believe I've been pumping now for 8 months. I miss the feeling of nursing a baby. I miss her looking up at me with her big eyes. I should have taken more pictures of her when she was first born.