A Day in the Life with PKU: Food Preparation

For this post series, I am going to discuss in each post a different task or activity involved in PKU management/treatment in daily life.

Saturdays are usually good days for baking.  We typically stay at home, and since Daddy is nearby, Mommy has more of an opportunity to cook.  Our most intensive baking projects at this time include loaf bread, rolls, and chocolate chip cookies.  This past weekend, I made a new loaf of bread.  The recipe I use is from the cookbook Apples to Zucchini, which is Virginia Schuett's newer low protein cookbook you can purchase directly through www.pkunews.org, or I am sure you can find it on Amazon or maybe other places as well.  The recipe is called Trish's Best White Bread, and it is an updated version of the recipe from the older cookbook (the red checkered one).  This recipe adds a few variations from the former, such as a combination of Welplan Baking Mix and wheat starch, Coffeemate creamer powder, and molasses for color.  The "magic" ingredient in any lopro bread recipe is Metamucil, which gives the bread fiber and shape.  And no, you cannot tell it is there!  This bread is delicious!

A few of the bread ingredients





The dough mixing in the bread machine

Yummy! Carson loves eating the dough while
we are baking.

Finished product! Soft, fluffy, and yummy on the inside.

I also use this same recipe to make rolls.  I put the same ingredients in the bread machine on the dough cycle.  When it is finished, I follow the instructions in the "older" red checkered cookbook to make and bake cloverleaf rolls (we like these best).  I make a batch and keep them in the freezer.  Whenever we plan or think there is a possibility we may be eating at a "sit-down" restaurant, I take a couple of Carson's rolls along so that he can have rolls (and butter!) while we do. 








For lunch that same day I made the last bread, I also made Carson a low protein hot dog.  It is made from a powdered mix, and they are the most amazing things I have seen!  We use the Country Sunrise Hot Dog Mix, which you can purchase from www.pkuperspectives.com.  Preparation time is nothing, just measure the ingredients, dump them in a bowl, mix well.  I learned the hard way that handling it bare handed is not a great idea.  I put my hand in that pink stuff the first time and it stuck all over me!  I could not get it off!  Plastic gloves might work well, but since I don't keep those in my house, I just rake the mixture onto a sheet of plastic wrap, wrap it up, and roll and shape it into a hot dog shape.  Then I unroll it onto a plate and microwave for 30 seconds...voila!  Instant hot dog!  Carson must also eat with ketchup (we are still not to bun stage yet, but then again, I never eat my hot dogs on a bun either! lol).

The powder

Add vegetable oil and water...it turns pink!

After mixing, roll into hot dog shape



Microwave just 30 seconds and this is the finished product!

 

Besides the occasional hot dog, lunch at the Rice household usually consists of some kind of sandwich.  For Carson, there are only two choices that he enjoys so far:  it is either a sandwich with Biscoff spread (which we buy at Walmart on the peanut butter and jelly aisle) or a grilled cheese (made with imitation cheese slices which we buy at our local grocery stores, which are great since they include calcium, unlike Cambrooke's very expensive cheese slices!).  We of course use the loaf bread we made (above).  These sandwiches are great options to take out when we are not sure if there is anything Carson can eat in a restaurant (especially if we go fast food), or if we are having a picnic lunch.

 

 

 

 



For breakfast, Carson typically eats Cap'n Crunch.  2/3 cup has about 50mg phe, which is not too bad for a meal by itself.  He drinks his formula, which I now mix with a bit of rice milk for added calcium (separate post later).  Some days he might eat a banana, or if we are at home he might ask for pancakes and eggs (or for brunch or even lunch!).  I use the Country Sunrise Scrambled Egg Mix, which is a powder to which you add oil and water just like the hot dog mix.  Scramble in a skillet and you have low protein scrambled eggs!  They are delicious!

Here he had toast, but now he usually prefers pancakes,
which I make using Cambrooke's MixQuick.

At suppertime, I find preparing things a bit more difficult.  We do have plenty of options and things that Carson likes to eat, but I generally prepare his food fresh instead of fixing up large batches of things ahead of time.  If I am cooking a big meal for the rest of the family, then I have lots of cooking to do to keep me busy!  I usually try to make things similar to what the rest of us are eating, but if I do not have anything, I will just ask Carson what he wants and he usually has a preference!  I almost always fix him some type of low protein pasta (we use Loprofin Fusilli) with a variety of sauces and some vegetables.  Right now I think Carson's favorite is pesto, so I use the Knorr packet of Pesto Mix and prepare a whole supply.  I can use this for him for several days, and Maggie and I will eat it as well (picky Marty doesn't like it!).  I cook a pot of noodles for us, a small pot for Carson, then the sauce.  We almost always have garlic seasoned cauliflower or broccoli in microwave steamable bags.  Makes for an easy and delicious meal!  I do the same with spaghetti and stroganoff (without meat in either one).

One of Carson's go-to meals right now is low protein macaroni and cheese.  This I have to prepare completely separate from our meal.  I use Loprofin Macaroni Elbows, boil 1/2 cup (dry measured), drain and set aside, then prepare the cheese sauce using the same pot.  I use Cambrooke's Shake n' Cheese powder and follow the directions on the container, but I only make 1/3 the recipe.  It calls for butter, which I melt in the pot first, then I use coconut milk creamer, because it is virtually phe-free, then add 1 Tbsp Shake n' Cheese and mix it with a whisk, heating it until it bubbles and thickens.  Stir in the noodles and we are done!  The phe for this portion Carson eats is estimated at only 15mg!

And now, for the best part, Carson likes to start off supper almost every night (when possible) with....

SALAD!!!!!!!!!!

I cannot believe he actually likes salad now!  I am one happy momma!  It makes for yet another great option, especially when we are out, to get that tummy full with something healthy.  I just weigh out salad pieces on the gram scale and pour a bit of Italian dressing (which is phe-free) and he likes to pick it up with his fingers and dip it.  Nothing fancy, but it is awesome!  Got me eating more salad too.

We do also have several convenience foods we can use on days when cooking is just too much, and we can just heat these up in the oven or microwave.  We keep Cambrooke's Mini Pizza Pockets, Go Pockets Broccoli and Cheese, and Toasted Pierogi (which is kind of like breaded/fried ravioli filled with lopro cheese and potatoes).

For dessert, there are only a few things I have to bake that Carson will eat.  He loves chocolate (like his momma!), so his favorites are chocolate chip cookies and brownies.  For the chocolate chip cookies, I use the Butterscotch Chip Cookie recipe off Cambrooke's website (which uses MixQuick), but I substitute butterscotch chips for 1/2 cup Chocolate Dream dairy-free chocolate chips (awesome!).  For brownies I use Maddy's Fudge Brownie Mix (from a can).  It is super-duper easy, much like our regular boxed brownie mixes.  We just add oil and water, mix, pour in the pan, and bake.  I also like to add 1/4 cup of the dairy-free chocolate chips to these, which I started just because the chocolate in the brownie mix tasted too "fake" to me.  Carson loves it!

Carson's famous chocolate chip cookies!  Yummy!

These were made fresh today by Carson's request!

On the occasion we attend a party of some sort, including birthday parties, or anywhere there might be cake or cupcakes, I try to always come prepared with a cupcake for Carson.  I make batches of cupcakes and keep them in the freezer, so that when we are going I can get one out, put it in a plastic individual cupcake holder I bought for this purpose, and decorate it with icing and sprinkles.  I like to use Pilsbury's (since it's phe-free) icing in a spray can because it is super easy...just squirt it and go!  I have two different kinds of cupcakes so far:  both Maddy's Yellow Cake Mix, one made chocolate from the recipe on their website by adding a bit of cocoa powder and instant coffee!  He likes these okay, but usually only eats a few bites and mostly just eats the icing.  I am going to try some different homemade recipes in the near future.

For his own birthday with our family, on his actual birthday, I usually make him his own low protein cake and decorate it myself.  I am not very good at it, and someday will probably get someone more professional to decorate a really good-looking one (I will have to bake the cake part and take it to them), but I finally found an easy cake recipe that everyone liked.  I used a recipe from a free cookbook that uses Maddy's Yellow Cake Mix and Brownie Mix to make a marbled cake.  Carson ate every bite.  I hope this continues to be successful!  I plan to get a little more adventurous this year and make a character-shaped cake, maybe even a tractor!

I think that sums up most of the foods I actually prepare, cook, and bake for Carson that are separate from our own.  Other things that make it onto his menu are things we can get anywhere, like applesauce, bananas, potato chips, and dry cereal.  Eating out is a whole different story!

I also think that writing this very long post felt like more work than actually making all this food!  It seems like a large amount of work, making separate meals all the time, but we are used to it.  I have been doing it for almost five years now.  That does not mean that it is not tiring sometimes, because it is.  But I am so thankful to be able to be a low-protein chef for my son, and learn new things every day.

If you are reading this and live in Alabama, or know someone, who might need some support with PKU-related things, I want you to know that there has been an Alabama PKU Support Group started and growing on facebook.  It is a private group, but if you want to join the network I highly recommend checking it out!  I am loving it!  There are also great national support groups, like PKU Worldwide Support Group, and Cook for Love on facebook.

Breakfast...It's What's For Dinner

Carson has recently developed a love for breakfast foods.  After eating mostly Chocolate Cheerios, bananas, and the occasional lopro pancakes, we finally have a few more things he will eat.  I am seeing some growth here!  I love it when we can break the monotony and expand our horizons a bit.  What a breakthrough! 

Several months ago, or more, I ordered 2 sample kits from Country Sunrise.  I highly recommend anyone out there with a PKU'er to try these products!  They are the neatest thing I have ever seen!  Carson fell in love with the Universal Egg Mix.  It is just a white powder until you add oil, then water, and voila!  It turns yellow!  You mix it up and pour it in a skillet and scramble it, and it looks just like scrambled eggs.  It also has a great flavor.  The most important thing here...Carson loves it!  I admit I am as in love with making it for him.  I also tried the Hot Dog Mix, which is equally neat and pretty yummy, but sadly, he wouldn't eat it this time.  At first he did eat one I made.  I will have to keep trying.  I can't wait to try more of the samples!

With Carson's tendency to be extremely habitual and picky, I was having a hard time filling up his tummy and meeting his phe requirements.  He was hitting a growth spurt and eating everything he could and asking for more.  Because he limited his wants to only a few certain foods, I knew I had to do something and fast.  He needed to eat more lopro foods.  His current menu includes several, but he needs more variety to fill him up.  He would eat Cambrooke's Mini Pizza Pockets, lopro bread and cheese or Biscoff spread, and lopro rolls, pasta, and rice.  I also use Cambrooke's MixQuick to make pancakes and chocolate chip cookies.

The addition of the egg mix has been a lifesaver for us.  For example, today Carson needs to do a washout because his level got a tiny bit high (I assume because of that day we ate Mexican food and tater tots in the same day!  lol).  His menu is much easier to plan today for this, because I don't feel so bad about not giving him his Cheerios.  He doesn't eat them as much now anyway!  Today he will have pancakes, eggs, toast, a sandwich or pizza pockets, applesauce, cookies, pasta, and rolls.  That's a much better variety, don't you think?  I am so excited!  Now, if we could just work some more vegetables into that diet...

To order Country Sunrise samples, visit www.pkuperspectives.com.  Look for the Country Sunrise logo and find Samplers.  They have a couple of different ones; I would suggest getting both the meat alternatives and the one that includes the eggs mix.  They are very affordable and it gives you a chance to try them before you spend a lot of money.  Good luck and happy cooking!

Friday Fun: Lazy Summer Days

Cats:  The epitome of laziness!

Today is the first official day of summer, the longest day of the year.  However, most people celebrate the beginning of summer as the end of school, which happened a few short weeks ago.  And here in the Deep South, it almost always feels like summer already anyway!

So far this month, we have had lots of outdoor playtime, celebrated Father's Day, and had our first swim of the summer (pictures I don't have yet).  All this boils down to is some hot sunshine, tired kids (and tired mommies and daddies and grandparents!), some yummy summer refreshments, and a lot of fun, with more to come!

Carson being lazy...poor Maggie, he is twice her size!  My hard-working little girl!
 

Then Carson returns the favor by giving Maggie a ride in the covered wagon.

My sweet sunshine!

After a long, hot day in the sun, I tried a new recipe for a refreshing low protein (for Carson's sake) treat:  Strawberry Banana Smoothie!

Of course, Carson wouldn't even try it, but Maggie and I thought it was good!



Don't forget your shades!



It's hard to see what is going on here, but Carson and his Dada are enjoying time climbing on the hay bales!

A friendly Father's Day race between Carson and Papa Steve after feeding the horses.





Peaceful sleeping angel...summertime play is hard work!  lol

The Cost of PKU

I would like to share a little more information in honor of PKU Awareness Month.  I sometimes discuss other costs of PKU, but just realized I have not really explained the financial cost in detail.  I got my inspiration from recent posts by Kelly over at Littlest Sweet Pea .

If I had to insert a disclaimer here, it would be that all PKU families are not created equal.  Everyone has different needs, different insurances, and lives in different states where coverage and programs are not all the same.  And although most children Carson's age are picky eaters, not all of them are, and not all are as picky as Carson!  Also, there are thankfully several options available for formula and low protein foods.

Currently, Carson is covered under my insurance plan at work, which is pretty fabulous.  However, it is far from perfect for the coverage he needs. It does not cover his nutritionist visits (and they are the most important people in our lives!), which so far have been $46 per visit (we go twice a year).  And because Alabama does not have a policy to provide medical foods, unless you qualify for Medicaid or WIC (which we don't right now), we have to pay for Carson's formula.  The most important part of Carson's diet is his formula.  The formula gives him all the protein he needs minus the part his body can't process, therefore it is specially made.  He drinks the brand Phenex-2.  Presently we get one case a month of 6- 400g cans, which is about the size of a small can of powdered baby formula, in comparison.  My insurance pays 70% after a $50 deductible, leaving 30% for us to pay, which amounts to just over $130 per month!  This is our biggest expense.
   

I make him a loaf of bread about every 2 weeks, and it has several ingredients:

1 cup Wel-plan Baking Mix (made of cornstarch and wheat starch):  400g box for $9

1 3/4 cup wheat starch: CamBrooke Foods Wheat Starch is a 6lb box for $17.99 (I think one of these lasts me about 3 months)

3 tbsp Metamucil (I buy the largest container I can find, Original flavor and always brand name): 29oz container at CVS (which is where I had to buy it last) was $16.29

2 tbsp Coffeemate powder:  22oz for $4 at Walmart

2 tbsp sugar

1 1/2 tsp yeast:  Fleischmann's Active Dry Yeast 4oz jar for about $4.50

3/4 tsp salt

1/2 tsp molasses

Most of these ingredients last 3 months, 6 months, some maybe a little longer, so it's hard to calculate a total cost.  That comes to about $50 for everything, so if I bought everything 4 times a year, that's $200 (but it's likely closer to $100).  That's probably only a little more than most people who buy a loaf of bread at the store every week.  If I wanted to buy a low protein loaf already made it would cost $11.99 for ONE loaf from CamBrooke, plus since it is a cold ship item you are required to spend at least $50 minimum, then pay over $20 shipping on top of that.  See why I make the bread myself?  Plus it tastes a whole lot better!

The most used items in my house are CamBrooke's MixQuick, which I use to make Carson's chocolate chip cookies each week, and sometimes for pancakes.  A 6lb box is $34.49!  That is by far the most expensive food item I buy.  I use Chocolate Dream Dairy-Free Chocolate Chips, which I buy at Whole Foods in Birmingham, and they are about $5 for a 12oz bag (maybe twice as much as regular Nestle chips).  The other big food item I buy is low protein pasta.  He eats it almost every day.  I buy the Loprofin Fusilli from Nutricia North America, which is $11 for a 500g box.  A box of Great Value at Walmart, about the same size, might be less than $2, I don't remember exactly.  Carson eats a whole cup of pasta each time now, so one box does not last very long anymore.  These are his main staples.


Another comparison item, one I can buy at Walmart, is Biscoff spread.  This is his peanut butter alternative (which is much tastier than peanut butter!) and he uses it most days on bread to make a sandwich.  A 14oz jar is almost $4; in comparison, a bigger 18oz jar of Jif is less than $3.

Carson's only other sandwich of choice is a grilled cheese.  CamBrooke's American Cheese Slices are about $11.99 for a bag of 32 slices, versus the brand I buy for the rest of us, Velveeta, which would cost maybe $6 for the same number of slices.

The only precooked food I buy Carson is CamBrooke's Mini Pizza Pockets.  That should have been listed under his main staples as well!  The best comparison I could find is Totino's Pizza Rolls.  A bag of them, twice the size of one box of Carson's pizza pockets, was $3.29 at Target.  That contains 40 rolls.  A box from CamBrooke contains only 6 (obviously larger) rolls, for $9.99 per box.  One box lasts Carson 3 days (meals).  He eats them twice a week, so that amounts to $29.97 a month (3 boxes).

Most everything else he eats is typical stuff like we eat that we can buy anywhere, like cereal and fruit and vegetables.  But make no mistake...this is an expensive diet!

As I mentioned before, there is no assistance from the Alabama government on medical foods (which are provided to everyone, regardless of income, in many other states), nor is there any help for the special low protein foods he has to eat to fill his tummy without getting too much protein.  Insurance does not pay for those, much like a diabetic having to buy special foods (except much more expensive and much more volume!).

There is a bill that has been through Congress a few times but has yet to be passed or approved.  Every year since its inception the bill has been lobbied by various organizations supporting PKU and other inborn errors of metabolism who require such diets.  I believe the opportunity for the current session has already ended, but please click here to learn about the Medical Foods Equity Act .  Contact your local members of Congress and help support this cause in the future!

PKU Awareness Month

Educate.  Advocate.  Inspire.

May is PKU Awareness Month!  I want to take a few minutes to shine some light on this subject that
most people know nothing about.  I have found some great bloggers recently who have really given me some great inspiration, about both PKU and life in general.  Check out my Favorite Blogs list and pay some of these folks a visit!

Feel free to check out my PKU tab at the top of the page to read some detailed info about PKU and our personal experience with it (I have updated it just a bit today).  We have such a whirlwind of things going on in our life right now, just finishing up our first Autism Awareness Month, and then running right into the same for PKU!  I hope everyone will take a little time to read about this rare disorder and tell other people about it.  Education is the first step!

I hope to devote more time to working on this blog in the near future, to make it more helpful, supportive, and useful.  I plan to add more info about traveling with PKU, which seems to be a highly searched topic, as well as eating out.  I don't have much of a need for recipes right now, so I probably won't be very helpful on that subject, though I love to read them anyway!  I also have a dream to start some kind of local PKU group.  Alabama has only a small number of people who have PKU, so I know it has not been easily done.  I mainly just want to create a place where everyone in Alabama can go to find resources, information, and support.  Any advice or wisdom would be appreciated, if you would like to chime in.

Carson and his PKU Diet

I like to give an update from time to time about Carson and his diet.  (note:  Some of this info is also included on the PKU tabbed page, in case you don't want to read double!)  Lately there hasn't been much to update.  He is still picky as ever and not much has changed about his diet.  He has finally had a little growth spurt, after remaining the same size for about a year, so I think his diet needs might change a bit soon.  He transitioned well from his PKU formula for infants and toddlers, Phenex-1, to the adult formula, Phenex-2.  He did not give me any problem about drinking it, and right now he still wants it and asks for it all the time.    I also know that if his taste for it ever changes, there are so many options out there now for him to choose.

He still only eats bananas and applesauce for fruits, and broccoli and cauliflower are his only veggies.  He likes tomato sauce, so he eats lots of pasta with sauce and I even made alphabet soup.  Pasta serves as a great facilitator for new food tries (as does lopro rice).  I made pesto sauce and he loved that; I also make stroganoff from time to time, mushroom soup by itself on the pasta or rice, lopro mac and cheese, or veggie broth (I don't think he was crazy about that last time).  He loves his bread now, thank goodness, and will eat a sandwich any time (lopro grilled cheese or Biscoff spread), plus I make rolls and breadsticks out of it for him to have with meals, especially when we eat rolls too.  He eats homemade lopro chocolate chip cookies every day.  It's a struggle to keep those baked!  That's his favorite!  And for breakfast, his no-fail Chocolate Cheerios!  Or sometimes lopro pancakes...

For a while he would eat blueberry muffins, but this last batch has been allowed to ferment.  He refused to eat them after just one bite.  And so we continue with the normal frustrations of a young child and his picky eating habits...just with a special diet.

His current weaknesses, or higher phe foods that could cause him trouble in the future, are Mexican food and potato chips.  We have a fave Mexican restaurant in our town, Buena Vista (shout out!), where he loves to eat tortilla chips with salsa, and a side of Mexican rice.  He also loves potato chips, and occasionally is allowed to eat tater tots or hash browns.  These are the only forms of potato he likes!  I guess we should be thankful!  On those days, we just have to figure something low in phe he can eat to make sure he doesn't get too much.

We are very blessed, though, that he does not seem to mind right now if we are eating something different from him.  I try to downplay the fact that Maggie eats the same things we do by being very discrete.  I have noticed that Carson watches on occasion, but he has yet to react or say anything about it.  We have tried to never make a big deal out of it, and our rule has always been "no eating off each others' plates".  If I have something Carson can eat, I put it on his plate myself, I do not let him reach onto my plate, so I do the same thing with Maggie.  It still works...so far.  Maggie has come along to shake things up now! 

To see what products we currently like to use, as well as an embedded link to find low protein foods, click on my PKU tab above. 

Happy PKU Awareness Month!  Don't forget to Share the Love!

Carson's Third Birthday...with Friends

Wow! I can't believe Carson is already 3!!! Carson's third year of life was yet another year of ups and downs. During this year, Carson presented with a delay in his speech and had to go through much testing. He had his hearing tested, his speech, language, and cognition tested, and even a blood test on some of his genes. The only action being taken at this time is that he was enrolled in the Early Intervention program to receive speech therapy. A therapist came to our home and worked with Carson every 2 weeks until his recent birthday. Now we are waiting for the school system to take over his therapy on a weekly basis.

Cooking Crazy!

I interrupt Life Changed Forever to bring you my crazy cooking spree! I went nuts last week/weekend and cooked about a million things for Carson. I also wanted to include some pix of things I cooked previously.

First of all, in April I started baking Carson's low protein bread in the bread machine so graciously donated to us by Marty's cousin Shaun and his wife, Stacey. Thank you SO much guys, you have NO idea what a lifesaver this is!!! We owe you BIG. So far, I have tried 3 different recipes from my 2 low pro cookbooks, Low Protein Cookery for PKU and Apples to Zuccini. My favorite so far is Trish's Best White Bread from the latter book. It has an awesome natural color thanks to the secret ingredient molasses. It also has a nice flavor. The one I tried before it was Light Homestyle Bread, which includes applesauce. Great flavor and texture in that one! This picture is of the very first one I made.
The crust sank a little because it needed more water. Now I bake a loaf almost every week. I am finding new ideas and recipes all the time to use with the leftover, stale bread so I don't have to waste those expensive ingredients! I made Toasted Cinnamon Honey Sticks, then last weekend I made some Chex Mix with Rice Chex, gluten free pretzel sticks, and dried lo pro bread cubes. It was awesome!

Adventures in Cooking

Ok, so it has been several months since my last post, I know. Things have been really crazy! I just happen to have a few spare moments that I decided to use to write. As most of you know, I am doing my student teaching right now, and also taking a class, so I am still a very busy girl, as usual!

Carson just keeps getting bigger and bigger. He is starting to outgrow alot of his clothes, so we just had to start shopping for an all new wardrobe. Plus, with it being so unusually warm for most of this February, he needed new seasonal clothes too! It is unreal how the weather was, mostly in the 70s. Very strange.

Anyway, the newest thing that is happening is food. Carson lost his appetite for a couple of weeks following an ear infection, but he has finally gotten back to eating just about anything we give him. On February 19, Marty, Carson and I attended our first PKU cooking class. We met up with Jimmy, Julie and Noah at Jeff State south of Birmingham. Chef Jason was our instructor, and I thought he did an amazing job and had some great recipes for us! We worked together at stations to prepare these recipes, then went to another room where we all sat down and tasted them. I was most disappointed with the egg plant burgers. They smelled and looked SO good while cooking, but ended up tasting VERY bitter! Yuck! Carson agreed, and so did Jimmy and Marty. The best thing to me was the pasta with pesto and the veggie fajitas. The zuccini tasted delicious in the fajitas, and Carson liked it too! After the class, the six of us stopped at Logan's and ate together. We had a great time! It was a beautiful day as well.

This experience inspired me to start cooking more low protein foods and try some new recipes. I have started getting adventurous, and I love it!

First, I made some really quick and easy biscuits with Cambrooke's MixQuick. The recipe came from their website, www.cambrookefoods.com. Unfortunately, I have yet to get them to keep well, as they get kind of gooey after a while. Definitely best when fresh. Carson loves them, and they are super low in phe. He loves any kind of bread! I thought I took a picture of these, but I guess not because I can't find it!

Next, for Valentine's Day, I made Carson his first cookies. I made the Butterscotch Chip Cookies, from Cambrooke's site also. Very easy to make, and delicious too! Carson enjoyed them, and I also brought some to church to share with friends. Everyone said they tasted just like a normal cookie...yummy!




Very satisfying!

The most adventurous thing I tried to bake so far was homemade graham crackers. I got this recipe from the Low Protein Cookery for PKU cookbook, which is the older PKU cookbook. I just recently ordered it through Amazon.com and had it shipped to my house. I actually bought the newer cookbook first, a long time ago! I did make a fudge recipe out of the new cookbook at Christmas. I have not yet perfected my fudge, so I ate it all myself. It sure did taste wonderful though...chocolate and butterscotch! Yum! If you wonder why so much butterscotch, it is because it is much lower in phe than chocolate, so a better option for Carson. Anyway, I digress. For the graham crackers, I used Wel-Plan Baking Mix, honey, molasses, corn syrup, cinnamon, sugar, and I do not remember what else. The problem I had was that I did not have a flat cookie sheet, only one with sides, so I could not roll them out perfectly flat. They did not get crispy. Instead, the texture was more like a cookie. I will also use half the cinnamon it calls for next time, because I prefer less and felt it was too strong. However, they were still delicious, tasted much like a regular graham, and most importantly, Carson loved them too! I look forward to trying them again with the proper modifications. Graham crackers are Carson's favorite snack, which he picked up from Noah a long time ago. Unfortunately, one Honey Maid graham square has 19mg of phe, which is high for such a small portion. The homemade grahams are significantly lower, so I will be making them again very soon!


As for Carson's eating habits, he is being pretty selective right now. Ever since we suffered from the horrible stomach virus last month, which took Carson over a week to recover from, he has not been eating the same. He went back to eating canned sweet potatoes, Bruce's Yams, and refuses to eat them in any other form. He will still eat green beans as long as they are with something else. He will also eat carrots sometimes, and he still loves broccoli and cauliflower, thankfully. He probably eats spaghetti five out of the seven days a week, only because I refuse to make it every single night. I use low protein spiral noodles and 2 tablespoons of Ragu Traditional Old World Style. Apparently, this is Carson's most favorite food in the whole wide world! He must have spaghetti! With 1/2 cup of the noodles, this portion totals only 23mg phe, which is wonderful. But the noodles are mostly starch! Sometime in the near future I plan to try a low protein mac & cheese. I also bought some lopro rice to try. The major problem we are having right now is Carson's reluctance to try new foods, as well as his rejection of fruit. He used to eat all kinds of fruit, but since the virus has completely refused it and spit it out. What to do? Any tips are appreciated. I plan to try to make a nice dessert for him with fruit in it to try. We will see!

Most of all, I look forward to six weeks from now, May 14th, when I FINALLY graduate from college and can devote more time to cooking and trying new recipes for my little man. I CAN'T WAIT!!!!!!!

Carson's First Year

And what a year it has been! Full of ups and downs...mostly ups. It flew by but at the same time it feels like he's been here forever. Strange isn't it?

As I reflect on the first year of Carson's life, my thoughts of course immediately go to PKU. As much as you try to make life adapt to your new normal and not make it a big deal, it becomes that much more an important part of every day life. I spend alot of time planning and researching and shopping, even just thinking about things Carson can eat and things he will need in the future. I make it a priority in my life so hopefully it will be easier for him when he gets older. Even so, this is something I LOVE doing. I am enjoying every minute of it, and I do not view it as a burden at all. It is fun for me to shop for things and try new foods, and I am going to try to make it fun for him too. Just like every other part of life, I see it as an adventure. We have all come a long way from crying in that doctor's office; now our visits to the clinic are spent chasing Carson around the room!

Babies grow SO fast and make such tremendous leaps in development their first year. It has been a miracle for me to actually witness this for the first time. It seems like just yesterday I could lay Carson down for a nap on the couch and not even worry about him rolling off, and now he can get himself down and walk away! I suppose the main step he hasn't made so far is talking. No actual words yet, just babble. But like everything else we've been through, I know he will do it when he gets good and ready.

One of the neatest things about Carson's first year of life is how many places he has been. Marty made the comment one time that Carson has been to more states in his first 9 months than many people have ever been in their whole lifetime! That's true. I know that he will never remember it, but we have lots of pictures and videos to show him when he gets older, as proof! So far Carson has been to Texas, Utah, New Mexico, Wyoming, South Dakota, Colorado, and Florida. He has seen the Alamo, Yellowstone National Park, Mt. Rushmore, the Badlands, Crazy Horse, the Rocky Mountains, and a Gulf Coast Beach. That sure is alot of traveling for one little guy! I look forward to the future and hope that we will get to take him to many, many more places.


For Carson's first birthday party, I tried to keep it as small as I could and invite only immediate family. On his birthday, Monday, August 16th, 2010, I grilled a Carson-friendly meal and made a low-protein birthday cake.
We had grilled squash, zucchini, carrots, and pineapple; white rice with strawberry pineapple salsa, and jerk chicken (only thing not Carson-friendly). Carson still ate mostly baby food, so he tasted of some of the rice, but nothing else. He of course played in his cake, but did not eat any of it. Those in attendance were Nana and PawPaw, Granny and Pops, Nanny, and Uncle Jason.










The weekend just before Carson's birhtday, we had celebrations with other sides of the family too.
On Saturday, August 14, we had a get-together at Papa Steve and Glenda's with Grandmother, Uncle Eric (who was home visiting...yea!), Aunt Nissa and cousins Ellie and Parker (who just moved back from Texas...yea again!). We got to swim in the pool, which is Carson's favorite thing (water)
and Parker taught Carson how to climb a step.



On Sunday, August 15, 2010, we went to Papa Green and Nanny Judy's after church with Granny and Pops, Uncle Darwin, and cousin Caleb.




All in all, it was a very eventful birthday weekend...a fitting way to wrap up Carson's First Year.

To Carson, I want to say Mommy loves you very much. We are so blessed to have a little boy like you. You are the sunshine in our lives that lights up every day. God made you perfect no matter what anyone else may say. I'm so thankful for our first year together and thankful that I get to be your Mommy. I am having so much fun and I enjoy every minute I get to take care of you. I pray for God to always bless you, keep you safe, happy, and healthy. I love you! Happy First Birthday!