Saturday, May 31, 2014

Wednesday, May 21, 2014

Maja 9 month pictures












Maja turned temporarily deaf during this part of the pictures. We were screaming her name, making loud noises, whistling, hooting... she would NOT look up, and definitely would not smile. He got some cute ones anyway, but she was being a stinker!!




Molli's Word

Monday, May 19, 2014

PKU petition

Sorry to get political on here... but of course this is something that is personal to our family. Even though Maja does not require the lifelong diet required for patients with more severe cases of PKU, I had the unfortunate experience of finding out first hand how tragic it is to be diagnosed with a disease, for which there is a known treatment, and finding our insurance company denying coverage for that treatment simply because the treatment happens to be a special diet; not a pill. Luckily, Maja ended up not needing to be on diet, but if she was, she could have been in for a lifetime of struggles... either with the financial burden of covering the formula and low protein foods herself, or constant battles with insurance companies to get them to pay for the treatment. 

There is currently an initiative called 21st Century Cures Initiative that is trying to ensure that healthcare laws keep pace with research for treatments of certain diseases. PKU is not currently included in this initiative, but it would be great if PKU was added so that patients with this disease would be assured coverage for the treatment. More information on the initiative can be found at http://energycommerce.house.gov/cures  If you would take a minute to sign the petition below, that would be great! The deadline is June 13th!




Saturday, May 17, 2014

Mary's Third Grade Concert

Mary's concert was last week and she had a speaking part.


I blew it, though, and stopped recording before the song was over. :( Next they sang "Goodnight, Sweetheart" and then there was a round of "Pick a Little" and "Goodnight" together.

This was the finale.

Thursday, May 15, 2014

Saturday, May 10, 2014

Vittoria scores a goal




Video courtesy Vittoria
Coaching courtesy Mary Kay
UPDATE:  video should be accessible now

Saturday, May 03, 2014

Vittoria's favorite pastime

Waiting. 
In this case, for Katie's birthday guests to arrive.