Archive for January, 2010

Happy New Year 2010!!!

Vinny, Melissa and Ally

We had a GREAT time ringing in the New Year yesterday with my sister Sandi’s family and Grandma Carol. We first had our traditional crab legs dinner and then a little pizza. Then we played Wii games which included Dance Party 3. Pretty funny site, but Ally enjoyed watching us make fools out of ourselves. She loves music too, so was vocal. We ALL stayed up for the countdown and went to bed soon after. Kristyn was with my sister Tammy, her family, and a friend at a hotel waterpark. We watched Tammy’s tiny dog, Milo, who did very well with Ally and all the excitement. I’m debating if we should try to get a small dog or apply for Ally to get a service dog (which can take 1-3 years, I believe). Any thoughts from other sma families who may have one and/or the other?

My New Year’s Resolutions — 1) Take better care of myself – this includes eating healthier to lose weight and have more energy (probably starting Weight Watchers to help), working out (not sure if I am going to join a club or not due to costs and not having regular nursing again), and doing some fun things with Billy and my friends. 2) For Ally – getting her in her stander and loaner powerchair more often and using her computer and switches as often as possible so that she can communicate better. 3) For Billy and I – trying to have some occasional dates. 4) For the other girls and our family – cook family meals more often and spend quality family time together with games, movies, small outings….

Now I know that sounds like a lot. All of these are goals of mine, but the main resolution I know I need to work on is #1 Taking Better Care of Myself, so that all the others can be possible.

I’d love for a Cure for SMA in 2010! I’m not really sure that could happen this year, but it IS a possibility in Ally’s lifetime. They are VERY close to beginning stem cell in SMA babies and there are lots of things going on with different drug trials. I will just keep doing my best with Ally to keep her healthy and happy and maybe this dream can come true for her and so many other children and adults affected by SMA.

In one month and one day, on February 2nd, Ally will be 4 years old!!! This is over double the life expectancy for a type 1 sma child, but those are old statistics that need to be changed to give new families hope. We are so fortunate to have had so much help from other families, Dr. Schroth, Dr. Wang, Dr. Kristi Lundblad, our home nurses, and Childrens Memorial to get her this far and we have high hopes for the future. I also need to mention how grateful I am to God and all of Ally’s guardian angels. The power of prayer and faith is amazing. God is good. Family and friends are also amazing in their support to have helped us get this far.

If you haven’t read my last post, be sure to see the information about Ally’s scheduled hospital stay this coming Wednesday through Saturday 1/6-1/9 and enjoy all of our winter pics in the last blog.

Here’s an album with all the pics from New Year’s Eve (click on the cover pic to see them)….

2010-01-01 New Years celebration

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Thanks again for checking on us and all your support.
Tina, Ally and Family

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