PKU Awareness Day 2014

This is my first PKU Awareness Day as a mother with 2 children with PKU.  Now it is doubly important for me to raise awareness, share, and remind the people in our lives and the people we will encounter on our paths in the future, what PKU is and how we live with it.  I want everyone who will be involved in the lives of my children to understand this condition, what it means, how it affects their lives, and how they can always rise above it.

PKU is not a disease, it is a condition, a rare genetic metabolic condition, which means it is inherited from parents, who usually don't even know they carry the gene, and metabolic means that it affects how the body breaks down foods.  People with PKU have a missing or malfunctioning enzyme in their livers that is supposed to digest phenylalanine (which we call "phe" for short), which is one of the 20 amino acids in protein.  If a PKU person eats high protein, like a hamburger, their digestive system breaks down all the protein except that one part, the phe.  Since the phe isn't digested, it gets into the blood, and too much of it builds up in the bloodstream.  When it gets into the brain, it is toxic and causes damage.  If this happens for a long period of time in a baby or a young child, whose brain is still growing and developing, it can cause serious mental disability and delays.  If it gets too high in an adult, whose brain has already grown, it can cause them to feel depressed, very sleepy, irritable, and have trouble concentrating, even have headaches.  The way to keep from having too many phes is to always eat a diet that is low protein.  Since nearly all foods have at least a little protein and phe, everything needs to be measured or weighed to count the phe.  The doctor and dietician look at blood tests and weight and figure out how much phe the body needs and give a phe prescription, or a limit to how much phe can be eaten each day.  People with PKU use a book or a website to find out how much phe is in foods.  They keep a journal of what and how much they eat to make sure they don't go over their phe limit each day.  Weekly or monthly they have to send in a blood sample, by sticking their finger, so the doctor can see how much phe is in their blood and that they are getting the right amount.  Because high protein foods, like meat, dairy, and soy, are too high for people with PKU to eat, they have to drink a special formula, or special milk, that is made with all the protein they need without the phe in it.  They have to drink this formula every day in order to grow and stay healthy.  People are diagnosed with PKU just a few days after they are born.  The hospital does a heel stick, called Newborn Screening, that checks babies' blood for all kinds of different diseases and conditions, one of which is PKU.  Since everyone in the U.S. is tested at birth, treatment is started right away, and as long as the diet and treatment are followed, PKU causes no problems at all.  The "only" thing a person with PKU has to worry about is what they eat and drink each day. 

It sounds easy, and probably is compared to some things, but in reality it does take a lot of work, planning and preparing.  And explaining.  And I am sure when the kids are older, it will be emotional for them to deal with at times in their lives.  As a parent of small children with PKU, I do a lot of work right now.  I read all the time, whether it is PKU information and research, cookbooks and recipes, or stories of other PKU families.  I do a lot of cooking and preparing.  I mix two different formulas every day, one for Carson, who is 5, and one for Allison, who is only 5 months old.  They use different formulas right now since they are so different in size and their needs are different.  I make a loaf of homemade bread every week or two for Carson to take sandwiches to school.  I sometimes make him a homemade snack to take to school, like chocolate chip cookies or brownies (low protein, of course).  I keep emergency foods made up in the freezer, like low protein cupcakes to take to parties.  I make Carson a separate supper every night, sometimes just one part of the meal, like I have to make him separate pasta noodles, but we can eat the same sauces (we like pesto or spaghetti sauce).  I like to keep little notebooks to calculate their intake, and it is about to get interesting because Allison is just now starting to eat baby food (eek!).  I do a lot of math, weighing and measuring food, and calculating phe intake.  I do a lot of planning, like deciding what Carson will eat when we go to a family dinner, or church, or a friend's house, or a restaurant.

It sounds like a lot, but I am not complaining at all.  I have been doing this for 5 years now so I am already used to it.  It is like second nature to me.  The only time I freak out is if I forget about something and Carson gets upset, but even then we have emergency plans, like go get some tater tots from Sonic, or a banana, or a Rice Krispie treat, or some kind of cereal he likes.  There are regular foods he can eat too, and he eats those quite a bit.  He eats Cap'n Crunch or Chocolate Cheerios for breakfast.  And yes my work is about to be doubled, but it will happen slowly and I will be able to ease into it, so it should be no big deal.  I only share all this so maybe those of you reading it will come to an understanding.  If I ever seem spacey or in another world, I may just be thinking about what needs to be done.  Maybe I am planning some recipe to look up or try for Carson because I saw something that gave me an idea.  Like the other day he wanted cheese dip, and he has never had cheese dip before, so I was thinking why he suddenly asked that and how I can make him some.  I may be thinking in my head what I need to buy for this recipe and how much phe will it have and I need to add to my grocery list and I need to look that up in the book and see how much phe is in that...


Now I am wondering what Allison will be like when she gets older.  Will she be as easy to please with the diet as Carson is?  He is partial to certain foods and I know what he will eat, but he is usually willing to try new things too.  He is pretty easy to plan for because he is routine-driven and pretty predictable, and he doesn't ever try to eat off anyone's plate.  But will she?  Will Allison be like Maggie and only want what is on my plate?  Will I have to put her food on my plate just so she will eat it?  Will she cry for something someone else has?  Will I have to make more of a variety of foods that match regular foods for her?  Or will Carson have an influence on her?  Will she be easy-going or dramatic?  While it seems stressful to wonder and worry, it is fun to think about too.  I look forward to trying new recipes and make it an adventure!

The best thing to do for my children right now is to have a positive attitude.  Not just myself, but everyone around us.  Carson and Allison are rare and pretty special, if I must say so.  I want them to always know that and to have a positive attitude about their diet.  We try to keep it low and not make a big fuss about it.  It is what it is.  They eat something different than we do.  Period.  We get our protein from high protein foods, they get it from their special milk.  I want to teach them all about it, how to make and measure and calculate and order all these foods for themselves, so when they grow up they will have all the knowledge they need to stay on their diet.  I want to motivate them and help them to remember how important it is to stay on their diet.  That is why I want to always stay positive, even saying they "don't" eat that instead of they "can't".  If I continue to do everything in my power, then I have done my job as a mother to equip them and just hope and pray they can handle it when the time comes for them to!

This year, I am thankful for so many things when it comes to PKU.  I am always thankful for the Newborn Screening diagnosing them early and for the nutritionists who are our lifeline at the clinic.  Even though it is devastating to find out that Allison has PKU too, I am thankful that I know how to handle it, and that Carson is not alone, nor is Allison.  They have each other for an inner support system now and hopefully for life.  I am so grateful for the wide and growing support system of other families who live with PKU, especially moms like myself.  I love to read and interact with others who understand and "get it".  We have a few facebook pages and websites where we can converse.  I am most thankful for the wonderful family and friends that I have who are so positive and supportive of us and the diet.  They help, they learn, they teach, they support, they ask questions, they make all the difference in the world.  I love them all!  We are so blessed!

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!

PKU Awareness

Since today is the last day of PKU Awareness Month, I wanted to do a blog post and share it on facebook to remind everyone I know and just get the word out about this rare occurence and how it affects real people...people you know. If you have time please be sure to read as many of my posts about PKU as you can, as well as the description on the right side of the page. Even if you've already read it, read it again. Everyone who cares for my Carson or anyone else with PKU needs a reminder once in a while.

I want to reflect for just a moment on the purpose of this blog. When I first started writing on this blog a few years ago, I was desperate for a connection, to find anyone out there with whom I could relate because I felt like we were so alone. That was a successful endeavor. I have happened upon several blogs of people and families who also deal with PKU. One of the first people to send me a message was Shane Austerman. He and his wife and son live in Iowa, many miles from my home here in Alabama, and their son, only 4 months younger than Carson, also has PKU. I have connected with this family, with Jackee, I follow their blog, we have communicated by email and send Christmas cards each year. For that, I am so thankful. To have other people's experiences to read and to share means so much to me.

Things That Bug Me

Right now, being 9 months pregnant, I am very certain I am suffering from a temporary form of ADD. I cannot sit down and take the time to finish all these LONG blog posts about Thanksgiving and Christmas and Valentine's that I'm so behind on. It just takes too much effort and thought and energy. So instead, today I want to share a typical mommy rant. It seems to be the thing to do lately.

Currently, we check Carson's blood phe level every 2 weeks. We prick his finger with a little lancet and put blood in these 5 little circles on a lab slip; the same lab slip they use on every newborn at the hospital. Our clinic supplies us with these slips. We do this at night before bedtime, usually on a Tuesday night. Carson likes it now because he likes "finger painting" in the cirlces. He's such a big boy! He sticks out his finger just like it's nothing. It must not hurt him as much as it does me when I get my finger pricked! lol Anyway, we have to let the paper sit overnight to dry, then the next morning one of us drops it off at the Post Office to be mailed to the State Health Department Lab in Montgomery for processing. Once they process it, they call our clinic at UAB with the results. When I mail it on Wednesday morning, I almost always hear from the clinic on Friday. Well, this past Friday, I never got a call. Monday I was at home with Carson for his speech therapy. Later in the day I realized I still had not received a call, so I called Lauren, our nutritionist. This was after I had talked with Julie and found out she had to call for Noah's results too, and that his didn't have enough blood on it. I was worried about this too because we only did 3 circles and he wasn't bleeding very well so they weren't full. Anyway, Lauren said apparently the lab was behind because they were just getting results from the days before I mailed his. So we kept waiting. She finally called me on Tuesday, yesterday, a full week after we had taken the blood from his little finger, and his level was over 8, which is higher than normal. The normal range is 2-6. Since we only do it every 2 weeks, and then it was late, Carson's level could have been high for the last 3 weeks! I am not happy about that. Carson and I had a cold the week before we took his level, so I imagine that's what pushed it up, so it could have been high for about 2 weeks. His blood phe tends to only go up when he is sick or teething (which he is done with now, I guess).

Now we have to do what is called a washout for 2 days. This means Carson can only have as little protein from food as possible. Most foods Carson eats are higher in protein because he has a good phe tolerance right now. He can have up to 325mg of phe per day. His diet usually consists of dry cereal for breakfast (his fave being Chocolate Cheerios), bananas, sweet potatoes, tater tots, potato chips,applesauce, broccoli, and cauliflower. His special eating out treats are tater tots, Mexican food (rice and chips and salsa), spaghetti squash with marinara sauce at Ruby Tuesday, and homestyle potato chips at Logan's, with broccoli as a regular staple anywhere we go. The low protein foods he has been eating include pancakes, homemade lopro chocolate chip cookies, homemade bread, grilled cheese sandwich, pizza pockets, and pasta. For today and tomorrow, this child can only eat the low protein foods. This is getting more difficult than ever. He is getting so picky now. He is no longer eating the pizza pocket, but just picking out the inside of it and leaving the bread. The same thing with grilled cheese. He's just picking out the lopro cheese. He won't eat green beans or carrots anymore, which are lower in protein than broccoli, cauliflower, or potatoes. He won't eat any fruit other than bananas and applesauce. One banana has 47mg of phe in it, so applesauce is his low protein choice. If he has a fit for a banana we will give him one, because it's his fave right now, but that will be the highest thing he will eat. He will have lopro pancakes for breakfast, and no cereal. Lunch will be the most trying time, because it is always a higher phe meal. Supper is easy because he usually will eat lopro pasta or rice and a veggie. It may have to be some cauliflower, which is lower than broccoli. It's his favorite anyway.

It would just be SO much easier if he would eat like he used to! He used to eat green beans and carrots and squash and mixed fruit and all that good stuff. I am SO frustrated! Why do kids have to turn SO picky?! Especially those who can't afford to be so picky. The most important thing is that he drinks his formula, which provides him with all the protein he needs without phe. At least, thank God, he still likes that. Hopefully, he will use that to fill him up, since I know he's not going to eat much. It just makes me feel so bad for him. I used to think it was not such a big deal, because he liked so many lopro foods. But it's just getting worse. I guess it's just bugging me today. But I will never let him see that. He should and will always be made to feel like everything is perfectly normal and no big deal.

Just like now how I am feeling sorry for him when his baby sister arrives. In just a few weeks, our family gets another plus one. I feel like poor Carson has no clue how his life is about to change. He is totally the center of attention right now, and I'm afraid this may be difficult. But he is such a loving little boy, I think he will enjoy having a little baby around to love on and help take care of. Carson is having trouble with language right now, so it can be difficult to discern how much he actually understands. We started him with speech therapy through Early Intervention a couple of weeks ago. A lady comes to our house twice a month and tries to help us learn what he needs to do to learn to speak and understand better. He can say alot of words, mostly names for things. He is learning a few more verbs now, but still no real phrases or sentences. He can follow most directions we give him, and he seems to understand quite a bit. But it is hard to know just what he understands because he can't communicate very well. I worry about him being able to express his needs and feelings to us with words we can understand. And I think it gets worse, like it has seemed the last 2 weeks, when his phe level is high.

Now I am able to start actually noticing the signs when his blood phe level is high. I was not surprised by this last result. He gets sleepier, and actually started taking naps with me at home this weekend, which he hasn't done in months. And he's been sleeping through the night a little better, except when I leave him. He has become VERY clingy to me, especially at night. He wants me to sleep in his bed with him and he cries for me. It breaks my heart. I think it may have been worse this last couple of weeks because of his phe level being high. He seems to lose his focus sooner. He can name all the letters and numbers, but he is more hesitant with them lately. He also has been more obsessive with his tasks, while at the same time getting frustrated more quickly and wanting to give up on things like pushing things all the way closed or taking his clothes off by himself. He has also been screaming at bath time. Once he gets in the tub and starts playing he's fine and laughing, but he hates getting water in his eyes and face. He is more irritable, and I think it all has to do with his level being high. Once it comes down, I bet we will notice a marked difference in him again.

It is so frustrating because I wish we could have known to do something about it sooner. It makes me want to go back to checking every week. And I wish they would finally come out with a home test, like they have for diabetes, where we can get results immediately. It was announced in our PKU Newsletter last year that a test would be available in the spring, but it never happened. From what I have read, it is still in a trial phase, so something must have gone wrong to delay it. I cannot wait for the day when this part of life can be made just the slightest bit simpler. It will help Carson so much, and I know as we all grow into this more we will also learn better ways to handle it. I guess everything about raising a toddler/preschooler just gets more difficult than it was before. Sigh. The terrible twos.

Now to do a 180. While I felt like sharing all that is frustrating me, I want everyone to know that I am still thankful. I'm grateful we can even know what the problem is to do something about it. I'm thankful there are tests and low protein food alternatives. I'm thankful for our families that spend their time watching Carson while we are at work and make it much less worrisome on us that he is being properly cared for and happy. I'm amazed that Carson has learned so much already, from the alphabet and numbers to how to do household chores and follow directions (and how to press play on his DVD remote! lol). I'm also grateful that we have a program where people will come and give Carson the help he needs at no cost to us and little inconvenience because they come to our home. I'm thankful for the internet, which also allows convenience for me to order special foods for Carson and have them shipped right to our door. This world we live in, while very maddening at times, is just so amazing. We are so blessed to live in this time when we have so many things that make life a little easier for us. We have so much to be thankful for.

So next time you feel like you want to rant, feel free to do so. After you get something that's bugging you off your chest, it makes you feel better. Sharing these things might help somebody else who has been feeling the same way and you didn't even know it. And then after you read it yourself you will realize how blessed you are and thankful that even though you feel frustrated, you have a mode through which to vent your feelings freely, with the freedom to share them with others. And after you realize how many things you have to be thankful for, you will notice your frustration has kind of melted away a little.

That's what's bugging me. What's bugging you?

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!

Happy Trails!

Our Western Adventure began on Friday, May 28th. We (Marty and I, Carson, Nana and Paw-Paw[Marty's parents], Grandma Ravenna, and Nanny) boarded a plane with about 30 other people in our group, headed for Salt Lake City. This was the worst flight I had ever been on in my life! Add to the drama that I am more scared of flying than when I was younger. The first take-off was a little rough to me, but I was doubly enraged when I found out we were on one of those continuing flights. A couple of hours later we landed at Houston Hobby! We were just there 6 weeks ago. I said, "You mean I have to do this AGAIN?!" Meaning that we would take off and land a few more times. I told Marty I didn't think I could do this! We took off, much smoother this time, and landed again in Albuquerque, New Mexico. Then we finally made it to Salt Lake, after I thought we might land in Phoenix first! I was happy to be landing in our final destination, finally, but this was the worst part. There was a front coming through, coupled with the mountain range, which made for the worst turbulence many of us had ever experienced. That plane bounced and bumped and swayed, and we had to circle the airport again before we could land because of "traffic". That was horrible. I was ready to get that sucker on the ground! Thankfully, Nana was holding Carson, although if we were going to crash and die I would rather be holding him, but I was on the verge of having a panic attack and reaching for the barf bag! That's the first time I ever actually felt sick on an airplane. I may have shouted several hallelujah's and praise the Lord after we finally landed safely on the ground! I told Marty I was never going to fly again (for the fourth time, I'm sure!).

We boarded the bus, our home for the next 10 days, with our driver and soon-to-be pal, Randy. Carson instantly loved riding the bus because of the big windows through which he could see all the cars passing by.

It was rainy and cold outside, so our tour of Salt Lake was very wet. We drove on to Park City, Utah, where the weather had cleared up, and spent the evening shopping and eating (first stop: Wal-Mart!). Our hotel there was very nice and we welcomed some sleep.

The negative about the long bus trip is packing up and moving to another place so many times. Having to get up early to do this doesn't leave time for enough sleep, and packing is alot of work! Hence, I am still very exhausted. The next day we headed for Jackson Hole, Wyoming.




While in Jackson Hole, we stayed at the wonderful Wort Hotel. We laughed at Marty's parents because they stayed in a Cowgirl Suite! Diane and Tommy, our travel agent and her husband, stayed in the Silver Dollar Suite, which was REALLY nice. We had good breakfast there, and everything was wonderful.




Our first night in Jackson Hole we experienced a chuckwagon dinner, show and ride at the Bar T 5. It was fabulous! Carson, however, did not agree. The man with the mustache talking into the microphone scared him at first and he screamed. He also screamed every time the crowd cheered or said "Yee-haw!" He seemed terrified! It was so pitiful! He was just really sleepy. By the end of the night he was accustomed and having a good time. We ate outside and had great entertainment. Indians chased us on their horses. They put on a good show and the music was wonderful. The band played and sang very well and had great harmony. We were really impressed. It was also VERY cold that night, so we had to snuggle up!



My favorite activity of the trip was our horseback riding adventure in Jackson Hole. Marty and I rode horses with about 5 others from our group while the rest of the family kept Carson for us. It was rough riding up the mountain, and harder coming down, but it was well worth it. We saw some gorgeous views and had alot of fun together. Marty's horse, George, was a real character. Of all the people riding, he may have been the least experienced and got the craziest horse! George would just wander off to eat grass whenever he felt like it. Marty asked our guide, Colby, "Did you not feed this horse before we left?!" It was hilarious! My horse, Ringo, would always follow George if we were ever behind him on the trail. Sometimes George marched to his own beat. One time we crossed a mud hole, well all the other horses did. But George decided he would go around it, and of course Ringo followed! I decided since they were named after Beatles, they thought they were rock stars and were too good to walk in the mud! LOL!

We left Jackson early the next morning to make our way toward Yellowstone National Park. Along the way we made a tour of Grand Teton National Park.
The Teton mountains were spectacular, as we could see from our horseback ride. We saw many beautiful views of the snow-capped mountains and reflective pools along the Snake River


While in Yellowstone, we saw many amazing sights of God's creation. It is one of the most unique places we have ever been. I must admit I have never experienced feet of snow, frozen lakes, and steaming vents all in one place! We saw alot of snow on the side of the road. The funniest thing that happened was when we stopped beside a frozen, snow-covered lake for a photo op. Some brave souls climbed on top of the snow to get their picutures made.


Some should not have been so brave!

When we got to the Lake Yellowstone Hotel, the lake was still frozen over!
It was SOOOOOOO cold down there at the lake that I could barely stand it! We saw many hot springs steaming and beautiful colors of water and rock. We saw waterfalls and buffalo and elk and even one moose! We took the Grand Loop Tour and saw Old Faithful and other geysers. Our tour guide that day talked nonstop and we were all about to pull our hair out by the end of the tour! One little break so Carson could take a nap would have been nice! He was a nice man, though, I just wish he would have given us a little break. The dinner in the restaurant at the hotel was very good, and I loved the atmosphere. The public area was very classic and spacious with plenty of sitting room to visit (or play cards!). It was just the rooms that were too small for my comfort. After 2 nights in that old hotel with no TV, having nightmares, and sharing a rather small bed between the 3 of us, I was ready to get out of there.





After leaving Yellowstone, making our way toward South Dakota, we stopped in Cody, Wyoming to take a trolley tour, then some toured the museum while others went shopping. We went to hunt down a tyrosine supplement for Carson that was prescribed the day before we left! Carson's tyrosine, one of his other amino acids, was low and the doctor wanted to boost it. It took forever before we reached civilization to have a chance to look for this, and thankfully we tracked it down at a health food store. Randy was so awesome to drive us around looking for this. Anyway, I felt alot better after that. Once we left the beautiful little town of Cody and learned all about Buffalo Bill,
we made our way to The Ranch at Ucross to spend the night. That was the most beautiful place I have ever seen in my life!!! We felt like we were in heaven after being in that old Yellowstone hotel. The weather was warm, everything was so pretty, it was comfortable, spacious, and even though we still didn't have a TV in our room, it was WONDERFUL!!!
The food there was the best we had so far, and they had a room where you could go watch TV and even get on the internet! I went there and got on Facebook, of course, and showed some people this blog who had never seen it before. We had so much fun!


After our lone, glorious night at the ranch, sadly, we had to move on. We made our way to South Dakota. We spent 2 nights there at the Best Western Four Presidents, which was very uniquely decorated with log banisters and deer or elk head. However, I have no pictures of it! We visited Crazy Horse (in the rain!), and Marty said it looked the same to him as it did when he saw it 16 years ago. We also saw Mt. Rushmore and witnessed the lighting ceremony one night. We took an 1880 train ride in the Black Hills, then we went through the Badlands, Custer State Park, and we ate at Wall Drug Store.






The funny thing that happened on this leg of the journey was at Custer State Park. We took the Wildlife Loop Road and saw lots of antelope, elk, deer, and buffalo, but we also came to a place where there were burros. Yes, donkeys that walk up to cars and stick their heads in looking to get fed! Nanny called them "beggar donkeys"! I couldn't pass up the opportunity to get a picture of this field full of them, and because it was so beautiful as well. .
When I got out there, I realized there was also a prairie dog town out there, and I was so excited! You could hear the little guys barking all over the place, so I went back to the bus and got the video camera. While I was standing there filming this, Marty yelled for me to look to my right, and when I did I saw one of the donkeys had walked up right beside me and I screamed! It was hilarious! No pictures of that, just the funny video.

From South Dakota, we rode the bus all day to get to Estes Park, Colorado, our last home away from home for the trip. We stayed there 2 nights. The first night, we had another "chuckwagon" dinner, which was nothing like the first. It was at the Aspen Lodge. The food was grilled out and it was tastier, but the entertainment and atmosphere were lacking. It was so cold and Carson and I were both already so sick with stuffy ears and runny noses that we did not ride the "wagon". It wasn't a covered wagon anyway, and all they saw were a couple of elk. We stayed by the fire and listened to an old man sing and play the guitar.


The next day we toured Rocky Mountain National Park. We enjoyed the view of many snow-covered mountains and snow piled up above our heads. It was cold at the top, over 12,000 feet high. After coming down, it was warmer and we shopped and ate in Estes Park. It's a very nice town, but once again, we got rained on! It came a full-blown thunderstorm on us there! And once again, our awesome bus driver Randy showed us how awesome he really is. He took Marty to get some more diapers or whatever we needed. Later we were on a photo stop at the Stanley Hotel, and I realized I left my cell phone in one of the shops. It was only a few blocks, so Marty took off on foot. When Randy found out what had happened, he drove over there, stopped in the middle of the street, and honked for Marty to get on the bus. He was great!



Randy looking cool in his hat and boots, waiting for us to hurry and get on the bus!
On the last day, we rode to Denver to drop off at the airport for our flight home. I was very sad. It was a long trip and I was very tired and sick, but I was going to miss spending every waking minute with these 30 people for 11 straigt days. I especially knew I would miss the ones I might not see for a long time, or ever again. Randy pulled over and gave us a very touching farewell speech. Some of our group had witnessed to him and been an influence on his life in the short time we knew him. He had never met anyone like us before! I cried, but I tried to hide it. It was just so sweet! We took up a nice tip for him and signed a card thanking him for all he'd done. It was a bittersweet goodbye, because I am pretty sure I will never see him again. Anyone out there praying, remember Randy the bus driver from Colorado, because he is having some health issues too.

I know this is the longest post I've ever written, and probably the longest you've ever read, but I wanted to tell the story of our trip for those out there who have not been able to hear it or see our pictures yet. It was an amazing journey with amazing sights and amazing people, and there is no way I could have condensed 11 days' worth any shorter! That's why it is so long and has taken me 2 weeks to finish it! We made alot of great memories and funny stories that we can share and cherish for years to come. The only problem I have is that poor little Carson will never be able to remember what a great time he had, or how wonderful all the people were to him and how much he was loved and adored. He made 2 really close buddies, James and Cheyenne. At least Marty and I will never forget how wonderful they were to Carson and to us, and we will be able to tell him about it in the future. We are so thankful for all the people who helped us along the way, and boy did we need it! We are so blessed to have spent this time and shared this experience with 2 of our grandmothers, Grandma Ravenna and Nanny. It is something that we all will never forget, I'm sure.

Here are some of my favorite pix of Carson's favorite activities on the trip:

"Fixing" people's hair
"Sleeping" in his Pack n Play!
Walking Dada
Learning to climb from his new buddy, James
Examining fossils (my future archeologist!)
Eating...Nanny's arm, anyway!
Looking out windows, whether plane, train, or bus
Crawling on hotel floors
Playing with his shadow (a new discovery)
Helping his "girlfriend" Cheyenne and the ladies play Farkle

As for my travel tips, my advice is...good luck! Honestly, I packed basically the same as I did for our much shorter trip to San Antonio. The main difference was the food. To pack enough food and formula for 12 days was a very daunting task. All along I had planned to do the same as before with the formula, measure out the amount for each day in plastic baggies. The night before the trip, I realized this was not going to happen. I finally wised up and decided to just take the cans and the scale with me. I do not yet have a pocket gram scale, so I had to bring the regular one, which has a glass top on it. I had one of those bubble bags left from Carson's formula shipment, and it fit perfectly.

I also struggled with how to pack the baby food. Carson eats 3rd foods, which only come in the glass jars. I counted up how much of each thing he would need and had a box that held them all stacked 2-high. I put a thin magazine in between the 2 rows, and had each group of jars in a plastic bag with bubble wrap stuffed in between the jars. I taped up the box and laid it so it would sit upright when the suitcase was upright. I put the scale above this box, and fit some cans of formula and a pack of diapers. This was our smallest suitcase, which was small enough to carry on the plane. That way we could make sure nothing happened to it and be responsible for it ourselves. It was unbelievable how much better it worked than I had imagined. I got up every morning and measured and mixed Carson's formula, and Dada did it a few days too. When we first got off the plane, I did realize I forgot one important thing...a tablespoon! So when we made our first stop at Wal-Mart, that was on my list. We also bought dish detergent and a bottle brush and had to wash the bottles and dishes in the bathroom sink again.

Several places had a refrigerator in the room, but of course the old Yellowstone Hotel did not. So while we were there for 2 days, we put ice in our little ice bucket and packed the open jars of baby food in there at night. The hotel kitchen allowed us to keep our blue ice pack in their freezer at night. We would give it to them at dinner and pick it up at breakfast the next morning. I had been so worried about this before-hand, but in the end it all worked out just perfectly. I said we could have just put it outside in the snow! Ok, it wasn't hardly cold enough...only in the lower to mid 30's. The ranch did not have a fridge in the room, but when we asked them about it, they actually brought one to us! So don't be afraid to ever ask for what you need. You will be surprised!

We did end up buying diapers on the last leg of the trip, but of course we had the fabulous Randy to take us anywhere we needed to go! Another pack of diapers just would not have fit in all our luggage. Since we took the stroller to the airport gate, it counted as a checked bag. With Southwest you get 2 free per person, but Carson doesn't get any because he is not a ticketed passenger. So I had to limit our packing to 3 checked bags, and then we put the food and some formula and diapers in that carry-on suitcase. Luckily, they didn't count our carry-on bags. I think I read the diaper bag doesn't count as one, but if it did we would have had too many. I didn't carry a purse, I just used the diaper bag and camera bag. We only used the stroller a few times on the trip. We kept it under the bus, but I sure am glad we had it for those few times. Of course Carson got held and carried alot, considering there were 30 adoring adults (and one teenager!). It has been quite an adjustment with Mr. Spoiled Rotten being back at home. He spent 11 days sleeping with Mommy, being free from car seats, and being held and played with all the time. But we are coming along just fine.

It was alot of work all along the way, but it was well worth the effort. I felt the most stressed out when packing before we left. I let everything worry me about what to take and how it would all fit, but of course it turned out fine. I had extra space left at the end of the trip to store souvenirs. Would I do it again? Not anytime soon, but sure! Maybe one day...