It's been quite a while since our last post... I find it intimidating to write on here since so many people have been posting a link to our blog on their own sites... we have no idea who is reading this!

This evening a gentleman from our congregation asked if he could visit and give us a book called "One minute after you die". After reading a few pages together and praying, we found ourselves comforting him, as he broke down in sobs. He was holding Amryn and was overwhelmed with sadness. It is strange to feel so much pain ourselves, yet still have the ability to comfort others. I suppose that is another little miracle.

Last week we had a good pediatrician visit. The pediatrician was pleased with what he saw... her weight gain, her increased strength and her alertness. But since then she has been sleeping more, and when she is not sleeping she is often uncomfortable with gagging and vomiting. I have to keep an eye on her constantly, as she can easily aspirate (get what she vomits into her lungs) at any time... sometimes even when I think she is deeply sleeping she will start to choke. This seems to have started happening on a more regular basis just in the last two days. She is getting weaker and doesn't nurse for very long anymore, but through it all still manages to smile for us during her alert times. We are so thankful for this.

Today we had a visit from the respite care nurse and the public health nurse and discussed end-of-life care for Amryn. Over the past few days we have been riding that relentless emotional roller coaster of feeling hopeful and still praying for a miracle, and then being hit with reality and the harshness of what we may have to brace ourselves for. I experienced this particularly at the pharmacy the other day, when I picked up a prescription for anti-reflux medication and had to produce a form from the Nursing support services to cover the costs of the drug. On the top it read "palliative care medical benefit program" and reality hit me hard again.

But, after having a difficult Sunday with lots of tears, my brother in law reminded me to stop dwelling on death and focus on life... after all, Amryn is still here!! I was grateful for his bluntness. I need it sometimes! I keep struggling to not think about the future, but focus on the joys of life with Amryn.
And so, I will post a few photos of why we are thankful and blessed to be able to spend time at home with Amryn. Once we knew the doctors could do nothing more for her, we were determined to leave the hospital, and we are so glad that we did. At home, Amryn is able to experience a lot more and can enjoy many things she would not have enjoyed from her hospital bed. Such as:


Going for a brisk walk with her cousin Emma!


Floating in a soaker tub.



Warming up in the sun after a bath... notice the fluffy hair! Lydia thought Amryn looked and felt like a duckling, and she was quite right!!


Napping with her sister. (Lydia says over and over throughout the day, "I love my baby sister! She is my first baby sister!!" and always greets Amryn first thing in the morning with a ton of kisses.)



The feeling of snow on her face and eyelashes (ok, she didn't really enjoy this one...)


Enjoying her swing!


Being the star of a photo shoot!


Visiting Omi and Grandpa and getting treated like a princess with a special little bed.


Snuggling by a real crackling wood fire.

My sister Kyra also came up with a wonderful gift for Amryn... in a box she placed little bags of "scents of the seasons" with things that Amryn can smell, touch, taste, etc to let her experience things that she may otherwise never have a chance to experience. In one bag is sand, a seashell and the scent of suntan lotion. In another, some blades of grass and damp soil. In another, some cloves and the scent of apple pies baking... She also made a cd of "sounds of the seasons" such as a person walking through crunchy snow, a bubbling brook, a crow cawing, a thunderstorm, rain falling, etc.
I love this gift... and Amryn does too.