Birthday party and then some respite!

Many of you know that Anaya is turning two next week!  This is an incredible and miraculous event.  Baby Anaya's Birthday Bash is happening on Friday the 26th here in Nelson BC at Lakeside park.  The whole city is invited.

It's a big deal.  We were told not to expect her to live that long.  She has outlived the average age of death of a Krabbe baby by almost a year.  For the last three weeks she has been battling pneumonia and today I can say with confidence that I believe she has overcome it!!  She still has a bit of a runny nose but is getting stronger every day.  Her lungs are stronger, her breath is coming easier.  She hasn't had any prolonged apnea episodes.  She is struggling still with increased seizure activity.  Her little arms and legs twitch and she's having muscle spasms.  She needs to go to see the Palliative Care team and the metabolic specialists for help with these developments.

After the big event next Friday we are going to take her down to Canuck Place Hospice in Vancouver for some respite *not end of life care** and to get the medical help she requires.  No longer having nursing in our home has been an interesting and draining experience at the same time. In order to facilitate our whole family being able to be with Anaya near the hospice, my grandparents have arranged to let us use their motor home for an extended period.  The temperate climate of the coast will be easier on Anaya. Travelling with her in a vehicle is so difficult.  She has so many items and machines that she has need of on a moment to moment basis.  Having the motor home for a transfer vehicle and as a place to stay while we are down there is essential. My uncle brought it to our house the day before yesterday and dropped it off.  I'm quite excited about it.  It's an old 1987 Ford Vanguard.  The interior is so 80's that it can't help but make me smile.  Pink Carpet, floral wallpaper, baby blue seating.  The main part is that it runs and everything works.  It has a generator to provide electricity for the oxygen and suction machines.   We don't know how long we will need to be there for, and so we are bringing "Home" with us!

 I am so incredibly grateful to Albert and Vivian Medland for their motor home!  We love you grandpa and grandma!

With the help of Anaya's supporters and The Anaya Initiative, we hope to stop in and talk to a few groups about Newborn screening for treatable diseases like Krabbe and also speak to children in schools about Children with disabilities.  I had a dream that I was going from school to school with Anaya and speaking to assemblies about how people with disabilities have their own purpose too!  That it is OK to stop and talk and communicate with the disabled and to be inclusive of them.

I feel as though this dream was a message from God and the Universe telling me what path we are meant to take from this point forward.  As Anaya continues to get better I am going to start working on finding people / groups / schools who would be interested in having us speak.  We want to raise awareness about this disease so that one day every baby born with Krabbe will get the opportunity for a longer, higher quality life!

I want all of you to know how much your help is appreciated.  We now have 85 subscribers to the blog raising $842. a month for us to take care of Anaya.  All other donations are going into Anaya's account for her care and medical needs.  I will continue to write as often as possible about Anaya, giving the best I can to you, our readers. You are our Angels.  I am also planning on writing a half truth/part fiction story with Anaya as a central character.  You'll be the first to read the first chapter :)