So it's been a very BUSY time for our little family. On Friday we packed our bags and headed out to SLC to spend time with our PKU community. Once a year the metabolic clinic puts together a breakfast for all the PKU kids and their families. We were soooo excited to go. It was held at Discovery Gateway and boy was that a fun place. Discovery Gateway for those of you who don't know is a hands on play place for children at the Gateway mall. Jaxson loved the ball area (of coarse) and the water area was a big hit as well. Before we played we had breakfast and talked with companies that sale low protein items. We sampled lots of low protein breakfast foods our favorite was the Maddy Blueberry muffin. We talked and met new families and families we already knew. I loved being surrounded by PKUers and mom's who are "walking in my shoes" . It was a great time and we can't wait for next year's breakfast.
This is Jaxson's doctors: Dr. Longo (in the yellow) and Dr. Botto. We typically see Dr. Longo every time we go out to clinic. We LOVE Dr. Longo he's a really wonderful doctor. He always makes us feel like we are doing such a great job with Jaxson and he is so sweet with Jaxson.
This is the lady with the knowledge, Sharon. Sharon is our dietitian. I talk with her weekly. When I think of Sharon I think of the saying: To the world you just might be one person but to one person you might just be the world. She is FABULOUS! We appreciate all the work and effort she devotes to our son.
This is Sara with her son Jackson. Jackson was the first PKU baby (other then our own Jaxson) that we met in person. He is 5 months older then Jaxson. Sara is fun to visit with since she is just a little ways ahead of us. I hope Jackson and Jaxson will be great buddies someday.
Playing in the water area
4 comments:
I love the pictures. I am so glad you had fun at the breakfast. Jaxson is the sweetest baby.
What a wonderful thing. It looks like you have some fabulous people in your life.
Looks like you had so much fun. I wish I could have been there to share it, but I guess we will have to wait until next year. I love the children's museum and hopefully our little pku'ers will have a blast playing there together. Thanks for sharing the pictures. Jaxson looked like he was having a great time.!
I think I would CRY if I met another PKU child. I feel so isolated in this area of life. To give things more of a quirk, my daugter was born in mexico, where PKU tests are not standardized, so by the time she was diagnosed- it was because of all the onsets of PKU. She was 13 months old. Ive devoted my whole life to her recovery, cuz I am not willing to believe the prognosis. Her diagnosis is set in stone, her prognosis isnt. And she is living proof, as she surprises doctors and therapists with her swift recovery.
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