By Holly on 11/28/2008 9:58 AM

The holidays can be a difficult time for any adult., but especially so for one on a special diet. Thanksgiving dinner was at our house and here are a few things I did to help out:

 

Make the mashed potatoes with rice milk instead of real milk. No one knew the difference and were surprised when I told them at the end.

 

Use margarine instead of butter for potatoes or sweet potato recipes.

 

I make the stuffing with regular bread (no fake bag stuff here). When I made the...

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By Holly on 11/9/2008 8:19 PM

Yesterday we went to the DC Green Festival. Among all the free samples and information we found a vegan smoothie recipe. We modified it, changing the soy milk to rice milk. I made it for breakfast and it was a big success! Owen even wants one for breakfast tomorrow. Here it is: A handful of whole frozen strawberries, one sliced banana and 1/2 to 1 cup of rice milk (depending on how thick and how much you want). Blend until smooth. We both loved it.

 

Getting Owen to eat breakfast has been a constant...

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By Holly on 11/2/2008 5:17 PM

We had a fabulous trip to and from MN. Owen's sister got married on the 25th. We were blessed with a beautiful day.

 

Traveling with a PKU child is difficult. It is the same with a PKU adult. First,make sure there is enough formula for each day and that it is easily accessible. Up until recently Owen was on a formula that came in packets and had to be mixed with water and placed in a blender. To take it on the road meant handmixing, clumps in the drink and generally, Owen avoiding the stuff at all costs. If the finances were available, we would order a case of the Maximum X PHE "juice" boxes instead. That helped, but he would still not take the full amount each day. This trip was MUCH BETTER! Yes, the Vitaflo Coolers take up more space than packets, but the convenience cannot be beat. We put what we needed for the drive to MN in a small carry-on style bag with other drinks and snacks. All Owen had to do was reach behind the seat and grab one. We brought an entire case for the six hotel days and did the same bag method for the trip home.

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By Holly on 10/21/2008 8:23 PM

Owen continues to do well on Kuvan. His levels are back down to a 5 after a week at 7. After some discussion during the Summit and a couple of emails to his nutritionist, the decision was made to up his formula intake. We are doing this in hopes of breaking the awful cycle his body has been in for over 10 years. He is so thin and anytime he puts on just a little weight, his body goes into overdrive and attacks his muscles and such. It leaves him tired and achy and weighing less than before. I have seen him go...

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By Holly on 10/16/2008 7:11 PM

Ok, so this is not about the Summit, but it is big for us. Tonight Owen made a giant step with his food aversions. Because he is not on the strictest of phe levels for his diet (a generous 1000) it allows me to modify "normal" foods. Tonight, I wanted to make organic burger helper. I use ground turkey because of my IBS. Owen has an aversion to cheesy taste and creamy textures so I offered to make him something else.  He surprised me by saying he was going to have what I was making! So, instead of organic milk...

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By Holly on 10/14/2008 7:52 PM

So much happened at the Fall PKU Summit that I have no idea where to start. I should start with the food! The chefs at Disney World Resorts went above and beyond. They ordered all kinds of items from Cambrooke and those with PKU ate like kings and queens the entire weekend. Of course the rest of us did as well. We had a fabulous dinner at the Living Seas Salon (behind the scenes at Epcot) and had front row seats for the fireworks on Friday night. Saturdays meetings went well and Owen and I spent the afternoon...

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By Holly on 10/12/2008 6:32 AM

We are currently in Florida attending the Fall PKU Summit. Many good things are happening here and I can barely wait to have more than a few quick moments to sit down and update everyone on what is going on. Owen and I are very excited about all we are learning and all that is being done for PKU patients and their families. I will post a more detailed account on Monday or Tuesday.

By Holly on 10/6/2008 7:54 PM

The number one thing that any loved one needs to know, is how to be pro-active without being overbearing. It can be tough because that line tends to be blurry.  Other than my early attempts to cook for Owen, I did not know what to do or how to do it. Fortunately, a visit to his nutritionist and Dr. Wilson changed all that. They told me about the cookbook and the updated food list.

 

It was a lifesaver and led to Owen enjoying meal time and trying to eat more because it was so good. The recipes were easy to modify (we like to make a huge batch of the baked vegetable stew...just add cheese for non-pku people) and with the updated food list, we found new items for him to try. Rice milk was the biggest change. It is lower in phe than non-dairy creamer and much better for you than that chemically made stuff.

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By Holly on 10/3/2008 8:09 PM

It was February of 2006 when I met the man who would become my husband. I met him through an internet dating site and knew from his introduction page that he had a condition called PKU. I did some research and thought I understood it enough. ( How wrong that assumption ended up being, but that is for later.) All I could tell was that I getting to know a wonderful man who had an amazing mind, a big heart, was a whiz with computers, loved sci-fi but weighed only 98 pounds. I fell quickly and hard for him (and he for me) and decided early on that no matter what his condition was, that I was going to love him and support him. 

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By Holly on 10/3/2008 8:02 PM

I would like to offer you a warm welcome. I hope that you find my stories and insights helpful in your journey through the in's and out's of PKU. While this blog was created to help spouses and significant others of PKU adults, I hope it affects and assists all who read it. It has been such an amazing journey so far, and I know there is much more to come. Thank you for being part of it.