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Holly's Blog
Mar 11

Written by: Holly
3/11/2009 6:48 PM 

Daylight savings time sure has me messed up. Owen is over here whining that his computer still has not gone the one hour ahead. His levels are back down to a 7 but now his tyrasine levels are low. We are going to report that to Biomarin, just in case. Owen continues to repsond cognitively to Kuvan and we have high hopes.

 

We are also adjusting to my own new special diet because of my auti-immune condition. I miss tomaotes! There have been many successes with compromise and a few failures. Mashed parsnips being of the failures. We both like rice chips and think they are so much better than doritoes. We have also continued to love brown rice pasta. He has his serving with sauce and mine is with breadcrumbs, walnuts and raisins (a Sicilian tradition).

 

We are disappointed that things are not going well for the walk-a-thon and will be putting more effort into trying to find sponsors and donors. We are in the midst of house hunting and it looks like I'll be job hunting as well. Even the public schools cannot survive this economy.

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2 comment(s) so far...

Re: Back at 7

ih there miss holly my name is firecat prime, and i am a fullgrown femaile with pku, my age is that of 49. iam very new to this, and kind of nerves about talking about pku. so please bear with me. ever sence i was 15 i felt alown. i came from an abusiv home. and ended up in a fosterhome and then a grouphome needless to say they had on idiea of how to take care of some one with pku. so all that time i spent in the fosterhome and grouphome, that i'm sure the damage has been done. but times have changed now, i'm trying to get back on trek, and i have resently found other's like my self. i have been seeing dr. rees at the sdo regnal center locaed in sd california. ps. i hope that we can be friend's.

By firecat prime on   4/19/2009 2:01 PM

Re: Back at 7

Thank you for your post firecat. I hope that through this blog, you will learn some things that can help you get back on track. It had to have been hard on you, growing up in that environment, but you seem to be a strong person. You will be able to overcome what has happened and learn to live with your condition and its ups and downs. Please, let me know if you need recipes or other ideas.

By Holly on   3/25/2009 5:40 PM

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