Monday, July 31, 2006

No Disney for us :-(

Hi Everyone,

Well we did not take the train and stay at the Delta. We decided to go to Great Wolf lodge instead (indoor water park). It was good (Grace loved story time in her jammies in the lobby at 8pm with all the other kids staying at the resort) however the waterpark was too large for Grace to enjoy. The Americana resort is much more her speed. Hopefully we will make it back there. Daddy did however do a great job teaching her how to roll down the hill outside our hotel's sliding door. A couple of times she tumbled head over heals but always recovered and definitely has the grass stained jammies to prove her efforts. Unfortunately, Grace was not doing very well this morning, complaining of head pain as well being very lethargic. We decided to head to Sick Kids for a check up before our trip tomorrow and were now advised that we should not go. Dr. Buffett said Grace may just be having a bad day or she may be deteriorating quicker than anticipated. So instead we came home, left Grace with my parents and Ian and I went to the hospice where we could have Grace spend her final days. After a brief visit we feel strongly that we will keep Grace at home until the end if at all possible. She will be most comfortable here and that is what is most important to us. We are still hoping to have Christmas next week and David (our social worker from the hospital) is trying to set up a private meeting with Dora since Grace's endurance is so unpredictable right now. We may go to Carly's cottage for some quiet time (Nana, Papa included) but other than that we just need to slow things down a bit and see how she responds to the increases in meds that she received today. Please continue to pray that our baby still has some good quality days in front of her and that we are able to manage this possess from home where she is most content. Please also extend your prayer s to the other unwell babies at Sick Kids.

I'll keep in touch,


Blogger Tricia said...


My brother-in-law Lindsey Oss shared your story with me last week during a trip to Halifax. I have thought about you often since.

I just discovered your website this evening and read with amazement (and tears) your incredible story. Grace is very lucky to have you as her Mom.

Your story has made me reminded me what I take for granted every day and how truly precious each and every day really is.

By posting this message I wanted you to know that so many people out there are praying for Grace including many, like myself, that you have never met.

Coincidentially, two months ago I became involved in the Make A Wish Foundation, one of the two "wish" foundations in Canada. Through your story I have realized that there needs to be funding in these programs for 2 year olds like Grace. Please know that I will do everything I can to lobby for inclusion of a 2-3yr old program within Make A Wish as it obviously desperately needs to be there for Grace and others her age.

What you are doing for your daughter is incredible. She is a blessed little girl.

Take good care,
Tricia Avery - Nova Scotia

10:49 p.m.  

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