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Wednesday, November 26, 2008

PKU Breakfast 11/15/08

This was the annual PKU breakfast. Primary Childrens Hospital does this every year for the people that have metabolic disorders like PKU and others. They have free samples of food to try and lots of other information. It was @ Discovery Museum in the Gateway. This was the first year that Mabry really understood why we were there. You could just see the wheels in her head turning when we explained to her that all the other kids and grown-ups that were there had PKU just like her. I felt like crying and laughing at the same time. She was so excited to tell our families that she went to a breakfast where they had PKU food and that everyone else had PKU jut like her. For me it was a very sureal moment...so sad and happy for Mabry & Ruby. So thankful they will have each other to lean on if this PKU stuff gets too hard. So Sad that they have to deal w/ this for the rest of their lives. So thankful this is all they are dealing w/ right now - it could be much worse - So proud that Mabry and Ruby are doing so well on their diet and that Mabry is smart enough to know what she can and can't have. So thankful to have Dr's and dieticians to teach me how to take care of them. So thankful to have 2 beautiful daughters. Well...I have blabbed enough gripes! here are some fun pictures of the museum. I think Chuckles had just as much fun as Mabry did!!





3 comments:

Silver Story Photography said...

Such a good post.

Looks like the kids (including chuckles) had a great time.

You're right, the girls will always be there for each other as the get older and will help support each other in dealing with PKU. They also have two AMAZING parents who'll do the same.

Love you guys!

Ashley said...

She is so cute! and getting so big! It has to be hard to have to go thru all of this, but it is good that she is aware and knows what she should and shouldn't have. It is probably a blessing in disguise to have them both with PKU, they will help each other thru it.
BTW I love the family pic! So cute!

michelle hays said...

I want to be in something like that so bad. Ive never met any other PKU people. I am a PKU mom of a late diagnosed little girl (born outside USA- diagnosed at 13 months- only after much research to find a cause for her multiple neurological symptoms).

My sweet Katy is 3 years old and healing nicely.