Monday, May 2, 2016

Raising Awareness

Spring is a very busy time for me.  I have committed myself to do whatever I can to help raise awareness for the things my children, and all of us as a family, must face every day.  I hope to promote understanding and acceptance by educating others about these conditions, from a personal (not professional) point of view.


April is Autism Awareness Month.  This year, I was unable to write a post due to being SO busy, but I did attend several fundraising events hosted by local restaurants to benefit our autism support group, I wore my T-shirts and ribbons and actually generated some questions from people, and I shared on Facebook.

People who follow our family want to know how Carson is doing, especially in school.  Carson's school experience is a great one!  He is finishing up first grade, and next week is his IEP meeting for second grade!!! He is so smart, so we know he can do well academically.  He makes A's and B's.  He does struggle with doing the work, though.  It may appear that people with autism can be lazy.  Sometimes I feel like Carson is being LAZY.  But we MUST remind ourselves that Carson perceives work, and most everything else, differently than we do.  We should not call it laziness.  There are two very good reasons that school work is hard for Carson:  1. It requires him to sit still and concentrate, which is difficult for people with autism.  He likes to keep his body moving because it gives him sensory input he needs, plus all the other sensory factors in the environment can distract him from focusing on his tasks; and 2. It requires him to use his fine motor skills to write.  Carson naturally struggles with fine motor skills and must attend occupational therapy every week to help him work on those muscles.  He has a weak control of the muscles required to do things such as write, paint, color, or button or snap pants or shirts.  He can write well now, but the problem is he gets tired very quickly from performing these tasks, and with good reason.  Sometimes we need to be reminded that he cannot help it.  We are so blessed to have teachers, aides, and friends at school who know and understand Carson, and are so willing to help him in every way.  These people are special to my heart!  But I also wish more accommodations could be available to him at school.  If he could complete more of his work on an iPad or a computer, he would be able to show what he knows and learns so much better!
People also want to know how Carson is doing socially.  He has friends.  He is social; he LOVES people.  Everyone close to Carson knows he is a sweet and loving little boy.  At times he also can be bossy and controlling.  Some of these instincts are natural for people with autism.  The word "autism" actually originated from the Greek word "autos" which means "self".  It's "selfism".  People with autism aren't usually able to understand how others think, and only think of how things affect themselves.  They typically internalize everything and lack the ability to outwardly express themselves in a socially acceptable way.  There are exceptions, and Carson can sometimes be sympathetic to others, but truly only thinks at times that everyone thinks like he does.  Sometimes he probably thinks we can read his mind, which is part of the communication problem.  Like he thinks he already expressed himself, when in reality we have no clue what he meant!  There are communication gaps, but this little guy has made HUGE strides!!!  I am so proud of the little man he is becoming!  We work hard to keep him active and social and learning about the thoughts and feelings of others.  I never want anyone to perceive him as selfish, even though it will appear that way at times.  It can be frustrating.  But the way he can communicate and express himself under the circumstances is nothing short of amazing!  My little guy is growing up, doing awesome, and surprising us every day!  LOVE HIM!


And now it is May, which is PKU Awareness Month.  Two of my children have this rare genetic disorder.  Carson and Allison are my PKUers!  If you are new to my site and my family, and if you are curious to know what PKU is, please feel free to browse my site.  I even have a PKU tab, or you can search from the Topics list on the side.  PKU is an enzyme deficiency that causes their bodies to be unable to process phenylalanine (phe for short), one of the amino acids in protein.  It is diagnosed shortly after birth through the Newborn Screening Program (heel stick), and treated with a low protein diet and a medical protein formula without phe.  The diet means that they cannot eat things that are high in protein, like meat, dairy, and nuts, and even flour!  We have to calculate everything they eat to meet their needs.  So yes, I do math every day!  I have to weigh and measure and add and figure how much protein they get, based on a prescription from the doctor and nutritionist from UAB.  It can be lots of work, but after almost 7 years, I am used to it!

Carson, 6, and Allison, almost 2
Having two kids with PKU is becoming very interesting!
Carson does very well with the diet.  I know he has a hard time expressing himself, but he has expressed sadness over having PKU, and wanting to understand why he has it.  Having Allison, as well as his friend Noah, has helped him feel better about it, and he knows he is not alone.  I have never had a problem with Carson sneaking off-diet foods or even really wanting it.  I have told him that anything he wants to try, I can make him a low protein version of it.  He is not an adventurous eater, of course, but he will try things sometimes, which is wonderful!
Carson and his friend, Noah
Allison, on the other hand, is entering the terrible twos.  And as far as I know, she doesn't have autism like Carson, so she may be a very different case when it comes to her PKU diet.  So far she is a great eater, as she likes many of the things she is allowed on her diet, like fruits and vegetables.  But she is different than him in that she wants food that we have, and whenever someone eats anything, she thinks she must have something too!  Thankfully, as long as I can offer her a low protein alternative, she is satisfied with that.  She will probably be more difficult to teach about the diet as she comes into understanding, but she has the potential to handle it very well.  She will not be alone.  She will learn she can eat like Carson, but not all the same things as Maggie or the rest of us.  And I am sure in the future she will experience emotions that we have not had to deal with yet.  But I am ready.  I have dealt with adversity my whole life.  I am as prepared to deal with this as one can possibly be.  After all, God made each one of us special in our own way.

Thank you for visiting my site and reading about my family.  My goal is to educate everyone, which is part of spreading awareness. and to advocate acceptance and understanding.  People can be so quick to judge others, but we only see what's on the surface sometimes.  I want to encourage everybody to remember that everyone we meet is facing a battle we know nothing about.  Sometimes you don't realize it until you have faced certain battles yourself.  I know I have.

The best thing that keeps me positive is telling myself this:
Life is one amazing adventure; enjoy the ride!!!!

Monday, February 29, 2016

PKU Awareness for Rare Disease Day: How We Survive the Holidays...and Every Day

Today is a rare is Leap Day!  It is also Rare Disease Day.  While PKU is not really a "disease", but rather a genetic "disorder",  I like to try to take every opportunity to raise awareness and remind everyone in our lives, and share with those abroad, what it is like to live with PKU.  Today I want to share another glimpse into daily life at our house and how it impacts our holidays.

PKU (phenylketonuria) is NOT a disease, but a genetic malfunction of a liver enzyme that breaks down the protein amino acid phenylalanine ("phe" for short).  It requires a medically prescribed and regulated low protein diet (not just a "special" diet) for LIFE, to ensure no damage is done to the brain and body by toxic phe levels.  A person with treated and well-managed PKU displays virtually NO symptoms.  There is no visible evidence of PKU by just looking at a person.  It is only discovered shortly after birth by the Newborn Screening process, which is the heel prick done to all children born in the U.S.  The most widely used treatment is the low protein diet coupled with a medical formula that is specially manufactured to provide all necessary protein without the phe.  For more information about PKU, follow links on this blog and feel free to browse past posts.

In the Rice household, we have 2 pretty special PKUers, Carson, who is now 6, and Allison, who will

be 2 in June.  Almost-4-year-old sister Maggie is our only non-PKUer.  Every day is an adventure! People ask me questions all the time like, "How do you do it?", "What do they eat?"  "Where do you buy their food?" or "Will they outgrow it?"  We especially get the most questions around the holidays, when we see family and friends we aren't around as much throughout the year.  Those who are part of our everyday lives are already versed in PKU lingo and the diet requirements, and are almost as adept as we are at knowing the ins and outs of dietary management.  But those who aren't around or in contact on a daily basis perceive it more as a mystery, and are either mildly curious or view it as too complicated to get involved.   And to be honest, I do get tired of explaining it to people sometimes, which is one reason I refer to my blog!

Since my kiddos are still very young, we have absolute control over what they eat.  I do try to match low protein foods to what the rest of us are eating, just to make an effort to show inclusion for my PKUers.  Carson does, on rare occasion, ask about our regular foods, mostly out of curiosity.  I always make sure he knows that if there is ever a food he is curious to try (that he otherwise could not have), I will do my best to find a low protein version to make or buy for him to try.  The same will go for Allison, who I presume will show more curiosity and desire to try other foods compared to the routine-driven Carson, who, partly due to autism, would be content eating the same thing every day for long periods of time.  For example, when I make pasta dishes, I always use sauces that are low enough in protein per serving to fit their diet prescriptions.  I use Ragu traditional spaghetti sauce, pesto, a homemade stir-fry sauce, and homemade stroganoff, all without meat, of course.  We have lopro pastas that I boil separately for them and just add the same sauce to their own pastas.  I order these pastas online from a lopro food manufacturer.  At this time, we prefer Nutricia's Loprofin noodles.  Carson likes spaghetti noodles and spirals, while Allison likes animal shaped pasta and macaroni.  Paired with a veggie or two, this is a very common supper at our house.  If I make a sauce that is too high, like mac and cheese, they do have their own powder I can mix with non-dairy milk or creamer to make a lopro mac and cheese.  Right now, Carson doesn't like it anymore, but Allison will eat it.  Most of the time, if we have something too high in protein for the PKUers, and it is something they don't like the lopro version of, they are happy just eating one of their favorites, usually pesto!

We also have a few "convenience" foods.  I can purchase ready-made foods from private companies also, such as Cambrooke Foods.  They have mini pizza pockets and toasted pierogies (like potato and cheese filled ravioli) that the kids like.  These things are specially made low protein and we just pop them in the oven.  Other quick lopro foods we use are sandwiches, although I make the bread myself in a bread machine using special lopro ingredients, and powdered mixes to make things such as pancakes, eggs, and hot dogs.  The rest of the food in their diet consists of things we can buy locally.  They eat certain dry cereals for breakfast, fruits, veggies, potato chips, tater tots, and a small selection of gluten-free foods that are appropriately low enough in protein, such as pretzels and some cookies.

I suppose most people want to know how we handle meal time when we are outside of the home.  We are a very on-the-go bunch, usually eating out 3-4 times a week.  I find it much easier and refreshing that I don't have to cook them something!  However, some of the leg work I have done ahead of time.  At most sit-down restaurants, I bring them their own lopro rolls that I bake ahead and keep in the freezer.  I just pop one in a baggie and take it in one of their cooler bags we bring everywhere with their medical formula and other snack foods.  I also bring them applesauce as a filler.  Usually, they will eat items from the menu such as broccoli and French fries.  Allison will eat more of a variety of vegetables, such as green beans, carrots, and sometimes zucchini.  Carson loves spaghetti squash, which we find at Ruby Tuesday.   And don't forget the salad!  Carson loves to get the salad bar and make his own salad with lettuce, cucumbers, and carrots.  They can have oil or vinegar-based dressings, Italian being his favorite. They also eat rice and tortilla chips at Mexican restaurants, but these are higher in phe and we try to do less often.  Everything they eat is in measured amounts, which I have to portion out for them, and I have done it long enough I can just estimate without having to measure or weigh on a gram scale.  As you can see, there are options, though not a wide variety, it is still enough to fill them up with the few extras we bring along.

When we visit someone's house, I always just bring their food with us.  I try to ask ahead of time what food will be available, and determine if there is anything there they can and will eat, and then just fix our own to take with us.  Most friends and family we visit are used to this by now.  Grandparents keep food on hand that they can use to prepare meals for them if needed during a visit.  Holidays, we usually have the same foods and I can cook something ahead of time to bring, or do it when I get there.  Needless to say, we carry a ton of baggage around when we travel!

Last, but not least, for special occasions, holidays, birthdays, etc., I keep lopro cupcakes baked and stored in the freezer.  When called for, I just get them out, place in our little plastic cupcake carrier, and decorate accordingly.  They can use just about any kind of icing, so that makes decorating easy and makes it look the same as everyone else's.  If something is served other than cake, we have other baked goods we can bring as well, such as cookies or brownies.  I bake these items using special lopro mixes as well.  I try to keep cookies or brownies made all the time so they will always have a treat.

Here are some examples of foods we have eaten lately:

A low protein trail mix for Allison, made with Rice Chex, gluten-free pretzel sticks, raisins, and mini marshmallows.

It's a big hit with baby girl!

Which one is the low protein version pancakes and eggs?

Cambrooke's Instant Chicken Noodle Soup

Not bad!  He didn't finish it, but it will hopefully grow on them.  It was really good!

Lopro taco made with Ortega corn shell, salsa, lettuce, carrots, and imitation cheddar shreds.  Delicious!  And all store-bought items!

Thursday, April 30, 2015

Autism Awareness 2015: We Survived Kindergarten!

As this year's Autism Awareness Month comes to a close, I want to stress the most important things that I would like other people to know:

1.  If anyone out there reading this has a child or is close to a child who seems to be delayed in reaching milestones, lacks proper emotion, and displays any odd or repetitive behaviors or interests, PLEASE do not hesitate to mention your concerns to someone in a position to help.  Sometimes, even doctors can be dismissive of your observations.  Ask someone else.  Find another doctor.  Do not say "they will catch up" or "not MY child", because the number one most important thing you can do is help a child.  Even if there was no reason to be concerned, even if the child does not have autism, EVERY CHILD DESERVES A CHANCE.  The BEST chance.  Set aside your petty dignity, swallow your pride, stop worrying whether you are just imagining it, or if your doctor will think you are crazy, or if no one believes or is NOT ABOUT YOU.  It is about getting a child help as soon as possible to give them the best possible opportunities in life.  PERIOD.

2.  My definition of Autism Awareness is to make people aware that a family's struggles with autism are real.  We need help.  We need understanding, patience, compassion, love, and support, NOT pity.  NOT sympathy.  I do not feel sorry for myself or my son.  He is a beautiful, intelligent, loving, funny, blessed child with a happy home, tons of supportive family and friends, and a wonderful life.  There is nothing to feel "sorry" for.  What I do need is positive energy.  I need people who can help me teach my son everything he needs to know in life: at church, at school, at home, in public.  So far we have been fortunate to have the best therapists, teachers, aides, and family and friends, more than I could have dreamed!  Yes, it does make me sad sometimes to think about how different he may act, or to worry about what his future will be like, or worry how independent he will be.  But then he says something silly to make me laugh, or he looks at me and is just so adorable he melts my heart.  Then I remember that He is a beautiful creation with a purpose.  He is growing up and doing so awesome!

3.  Getting help (services like private therapy, school interventions) is the number one key to managing autism.  There are professionals trained to help your child, and most of all, they teach you how to help them too!  The services that we have received, combined with all that I have learned from therapists and my educational background, have led to our success story this past year.

My Carson has made more awesome strides this past year.  And it has been another WILD year!  We survived introducing a new baby to the family, changing the family dynamics, just months before Carson started his educational career in kindergarten!  He went from one sister to two, from preschool at the Child Development Center to kindergarten in regular local public school.  That was a lot to take in!  It was a very difficult first semester, with lots of meltdowns, learning curves, interventions, and tears.  I shed lots of tears.  We started a communication notebook so we could write back and forth, the teachers, therapists, aide and myself.  I was completely in the dark as to what had been happening in the first couple of weeks.  After this started, I was able to find out how he was behaving in school.  It was scary.  He was hitting, kicking, throwing things, and spitting when he got angry, things he had never really done before or had stopped doing since he had gotten older and been in therapy.  Everyone tried different interventions to help him cope with his surroundings, feeling that the Sensory Processing Disorder part of his autism was causing most of the problems.  I started thinking, racking my brain to try to help find a solution.  This did not sound like my child who had done so well in preschool and at home.  I went to work with a couple of theories I had.  Two things in Carson's usual routine had changed:  He was no longer in any private therapy, and we had stopped going out.  We went to school, sometimes church, and we went home.  I did all my errands while he was at school.  By not taking him out in our usual routine, which included eating out at restaurants and grocery shopping in Walmart, he was not being exposed to all that sensory input.  Those are loud places that he never had a problem with.  And now he had a problem with the lunchroom or the bathroom being too loud.  He need to be desensitized again.  Going out with him to all those places is sensory therapy.  I also reenrolled him in private speech and occupational therapies.  All of the awesome professionals working with him at school worked hard to test, develop, and implement a plan to help him self-regulate and focus.  I don't know which of these things, or if the combination of them, is what worked, but it did.  Eventually, his behavior improved, and then upon return to school after Christmas break, he was a different child at school.  Like a switch was flipped.  Not a single meltdown for weeks, and any fits he has had since have been few and short-lived, and also the reason has usually been understood.  Someone ran in front of him, or stole the ball from him, or it came a thunderstorm.  I think just him growing some (he had a spurt) and maturing helped as well.  His communication skills vastly improved, and continue to do so.  He even asks and answers questions like never before!  My child never ceases to amaze me!  He is a wonder to behold!  Another part of his life in school I have worried about is social relationships.  I know this will probably always be difficult, and I know they are still so young right now, but he has had some wonderful classmates.  He has a few that have shown him friendship and affection and have touched my heart in doing so.  It just gives me hope and reassurance that in the future there will be people who love and care for Carson.  He will have friends and he will be loved.

As amazing as his kindergarten experience has been and has evolved from its rough beginnings, that much more now do I worry about next year!  The end of this year is upon us already, and I feel like I haven't even caught up yet!  I didn't do nearly as much with him at school as I imagined I would.  Partly, I felt like he did better when I wasn't there, and the other part is, I have two smaller children at home I have to care for myself during the day!  One who had surgery and the other who has PKU like Carson and has been challenging as well (with her special diet).  But as I said, we survived...and thrived!  I am hoping next year will be easier since he will be at the same school with the same people, so maybe he won't have such a problem adapting to the new routine.  He is excited about becoming a first-grader!
He was sick the first picture day, so his actual
portraits haven't arrived yet.  I will edit this
as soon as they do!

Anyone out there who wants to know more about how we handled this past year, feel free to email me.  I am always willing to listen or give any advice I can.  I know what it is like to feel such fear and dread before sending a child with special needs to school for the first time.  I am so proud and thankful to be able to say that our story concluded in success!  I am actually ready for the upcoming IEP meeting (but still dreading it a little).  Good luck to all you new school mamas!

Monday, February 23, 2015

The Forgotten One

Maggie Amelia, now my middle child, is not necessarily your typical "middle child".  Oh, she is dramatic, and loud at times, and loves attention, as most kids do, but she is a middle child under extraordinary circumstances.  Maggie is unique in many ways, but most notably under genetic conditions in our family.  Her story does seem to get lost in Our PKU Life and our Autism Awareness business, since she is the only one of the three who is fortunate not to bear one of those burdens.  However, Maggie has her own cross to bear, which is that she was born with a clubfoot.  While this blog is so busy being dedicated to posts about PKU and autism, clubfoot gets mentioned so much less.  My best explanation for this is that, while it is a huge issue, it is not always a daily issue. I talk about it less.  I probably think about it less.  I don't have to plan a whole day around Maggie's foot every day, nor do I have to plan every meal around her foot, three times a day.  So yes, it does receive less attention on a daily basis.  But don't let that sway you to believe that Maggie's foot problem is a non-issue, or that I don't think about it, pray about it, and still worry about it some every day.  It is a huge issue.  Maggie's foot has to be monitored as she grows, while she is a child, and actions need to be taken from time to time to make sure it does not turn back, or relapse, to try and prevent it from causing her problems the rest of her life.  Sometimes this involves doctor appointments, wearing a boot or cast, having surgery, or doing therapy.  Her right foot will never be the same as her left foot.  Her right leg will never be the same as her left.  One day it may cause her pain, but for now it does not.  It is our job as her parents to make the right decisions regarding the treatment of her foot and to take care of her the best way we know how to ensure she has the best quality of life possible.  So yeah, it's a big deal.

Maggie's clubfoot is front-and-center again right now because she recently had surgery to stretch her tendons.  I don't feel like we were prepared enough for the event, considering the last time she had this procedure done, she was 9 months old, and we went home the same day with her crawling on the floor trying to play, despite her leg cast.  This time was different.  I was expecting to go home, while knowing the doctor was exploring all the tendons in her foot to see if more needed stretching (last time he only stretched the Achilles tendon).  As it turned out, he did stretch all of those major tendons, which put her in a long-leg cast, bigger than we were prepared for.  And we had to spend the night, for which we also were not prepared.  Marty and I brought no clothes, no toiletries, nothing.  Thankfully, we did pack things we needed for Maggie.  I at least always try to have the kids prepared for anything!  None of us were happy about spending the night in the hospital, but Children's Hospital was wonderful.  At least we were in an awesome place with awesome people caring for us.  Everything went smoothly, and Maggie handled it all like a boss, like the princess she is. 
So sweet, mostly easy-going, even minimal whining!  She seemed to only experience pain when she wiggled her toes, and then it was not even enough to bother her.  I am beyond thankful for how well she did and is doing.  I hope that the end result of this procedure is as it should be.  We want a wider range of motion and flexibility in that foot that will allow her to bend it further and to walk with her heel on the floor instead of on her toes.  I can't wait to see how it turns out when this part is over.  She is in her second cast, and the doctor stated at her last appointment that her foot movement and flexibility looked good.  She has a shoe to put over it so she can walk in it, and she is of course doing almost everything she normally does: dancing, climbing the stairs, etc.  Next week she gets this last cast removed and she will be free, finally, after six weeks!  After that she may wear a boot but should be free-roaming most of the time.  She may need some physical therapy as well.

Maggie's current cast
Maggie's second cast after first tenotomy procedure
at 9 months old

A Look Back

Just look at how long it has been since this has been an "issue". TWO YEARS.  That should tell you
why it sometimes seems "forgotten".  When Maggie was born, it was a lot to take in.  We were in the midst of having Carson tested for autism, and we already knew about the possibility of clubfoot thanks to ultrasound, so we were trying to prepare ourselves for that, too. Those were very trying times for our family.  After she was born, Maggie wore a cast on her leg that was changed every 2 weeks, up until she was 5 months old. 
Baby Maggie's clubfoot before treatment
After that she had to sleep in a brace, but during the day, she was free!  At her 9 month orthopedic checkup, we were referred to a specialist because her foot was relapsing, beginning to turn back inward.  She had her first tenotomy, a surgical stretching of the Achilles tendon, and was in a leg cast again for a month, just when she had been learning to walk.  After the cast was removed, she had to wear the Ponsetti shoes (with a bar in between) for a while, then eventually just at night.  Soon she outgrew those and just slept in shoes.  Then she was free again... Until last fall.  At her checkup, after having a big growth spurt, her foot was relapsing again.  Her tendons just won't stretch out as she gets taller.  The doctor recommended another tenotomy and to also examine the other tendons in her foot.  So, again, here we are 2 years later in another leg cast.  I really hope this is the last time, but I know it is always possible we could have to do it again.  Maybe even a few times.  I am thankful she has a very credible, experienced, and brilliant doctor who is a perfectionist (so I've heard).  I am also grateful for our amazing family who helps us out with all our children and everything we need, and for our wonderful friends and family who offer support and prayers.  We are so blessed to be surrounded by so many great people in our lives.

All About Maggie Amelia

AKA: The Drama Queen or Princess Maggie (even though she proclaims "No, I am MAGGIE!")
Strangely enough, she is a very girly-girl!  This is somewhat foreign to me, because I have never been a very girly-girl or liked frilly things.  Maggie loves anything pink or purple, though I think purple is her favorite, like Mommy!  She loves Disney Princesses, of course.  She used to think Princess Sophia, of Disney Jr.'s Sophia the First, was really her.  She dressed like her for Halloween and has already requested a Sophia-themed birthday party next month.  They really do favor!  She LOVES shoes (already?!) and during winter she will not be seen without a pair of boots.  She developed a passion for lip gloss (I dread the makeup!), but had to be stopped due to eating it, smearing it on walls, etc.  Her best friend in the world right now is her big brother Carson.  She will go anywhere he goes and do anything he does.  They love to play games, video games, and watch movies together during these long winter months. During warmer weather, they love to play outside together, riding the Gator, riding their tricycles/bicycles, playing on the swingset, digging in the dirt, riding the tractor, or feeding the cows.  So she is not ALL girly!  Maggie is learning how to be a good big sister to Allison, and I am sure they will be best friends too, when Allison gets bigger. 

Maggie loves to help, no matter what it is, she wants to do it for us.  She loves to help me with laundry and is now showing an interest in cooking.  She is also in a funny language stage, where trying to make herself understood can be both frustrating and insanely hilarious!  For example, the remote is the "gamote", "Donald Duck food", as it turns out, is McDonald's, and the "Nurse Movie" is apparently The Smurfs!  She also has to narrate everything we do, and is starting to ask "Why?"  What a fun stage!  Carson is going through that now too, so we have a double dose!  She picks up so much from him, but I know that she is good for him too.  Maggie is a very sweet and sensitive child.  She cries very easily, like she just got her heart broken, no matter what it is.  She seems to be so tender-hearted and cares about other people.  She is so mature for her age, and she is not even three years old yet!  I love how gentle and kind she can be, and I hope she will always retain that part of her personality.  On the flip side of that, she also likes to aggravate.  She picks at Carson sometimes, just to get him riled up.  And she will just giggle and giggle about it!  She has the cutest, most infectious, most mischievous giggle!  This girl loves to have fun. 

I think Maggie might be my performer.  Even though she gets shy around other people at first, she eventually warms up.  She is constantly singing and acting out parts, not only of movies and TV shows, but also of games on the iPad!  And she is such a diva!  If she is trying to sing and someone tries to sing with her, she has a fit!  That girl is a soloist!  I have said as of late that she just might be an actress.  Combine her drama, her diva attitude, her love for music and dance, and her ability to mimic every motion, word, note, and expression, and we have ourselves a professional performing artist!  Not only is she girly, and beautiful, and fun-loving, but she is also very intelligent.  She is very similar to Carson.  She knew her alphabet very early, she talked very early (unlike Carson), she became mobile very early, and she just knows so much.  She loves books and is always wanting someone to read to her.  She has been able to play games on the computer and iPad (and my phone!) for a long time.  It amazes me how quickly kids can learn these things!  She may not have learned some things as soon as her brother did, but she did other things sooner, and is very close to where he was at her age.  I cannot wait to see what and how quickly she learns when she starts school.

After I first began writing this post, several months ago, I attended a Wednesday night Bible study by our brand new pastor in which he talked about David.  We were reading the passages about how David was chosen by God.  The preacher referred to David as "The Forgotten One" and I almost fell in the floor!  I had already begun this post with this title!  Just like David, Maggie is my small one, my runt, because she had trouble growing as a baby, and is still small, skinny for her age now.  Like David, Maggie does not have all the same pomp and circumstance as her siblings, and although loud at times, she can be meek and shy around others.  But this tiny child, like David, was born for great things.  God chose her to be here for a reason, with her own giant to face,
and I look forward to watching her grow up and find her path.  I hope I can help her and teach her well along the way.  I want her to know that facing adversity, like David did, can reveal great character, and build a servant of the Lord who can help others along the way.  God bless my sweet angel!

Wednesday, December 3, 2014

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!