Team Spirit!

Feeling disconnected with the people working with your daughter? Want them to feel more comfortable around you? Need something besides cookies to bring to an IEP meeting to get things off to a good start? Looking for something to give out for Rett Syndrome Awareness Month this October?

BUTTONS!

Yes. Buttons. We've see it work first-hand. We've got them in our store and will customize them for you!

Give a team button to everyone who attends your daughter's IEP meeting - and then give out more. The therapists, the special ed teacher, the aides, the school nurse, the bus driver, the principal, the school guidance counselor.

Bringing on that team spirit will give you a better chance at team work. The buttons will remind them they are all part of a team that should be looking for wins, looking to grow, looking to be strong, and looking to have good sportsmanship.

It takes just one to pin the button to their purse, lanyard or bulletin board - then you have the beginnings of pride and a sense of belonging.

Try it and let us know what you find out. Give us your ideas. We are rooting for YOUR TEAM!!!

CLICK HERE TO ORDER. Then send your custom text request to kelly@gp2c.org.

Intro to Blended Food for Rett Girls

Are you relying on formula to feed your daughter through her G-Tube? Have you heard about a healthy alternative called a "blended" or "blenderized" diet? Here's the scoop:

A blended diet is simply taking everyday foods and blending them so they can be given through a feeding tube.  A blended diet can be very intimidating at first (it's much easier to open a can and have peace of mind that "everything is in there") but don't over think this one.  Think about how you eat, how your other children eat and how your Rett Girl ate before getting a g-tube.  A blended diet is as easy as preparing a meal - then blending it into a soup-like texture! (note: you will need a blender with a soup setting to get it to the best consistency - see below for recommendations).

We're here to give you a starting point and the resources you need to make an informed decision about blending.

The Benefits:

A blended diet is perfect for those who have food allergies or intolerances and those who are looking to add more fat, calories or proteins.  Your Rett Girl will essentially be able to eat the same nutritious foods you serve your whole family.

Bonus: Since you are in control of the ingredients you will be able to stay gluten-free, dairy-free, soy-free, etc.  You can add more fats if your Rett Girl needs to increase her weight, you can blend raw foods or cooked foods.  You will also have control over whether the ingredients are organic, the proteins are free-range, the dairy's are grass fed and the grains are GMO free. 

Many families have switched from formula to blended foods and have experienced wonderful health benefits. It's hard to say exactly if or how exactly your Rett Girl might benefit from a blended diet since each child is different and each family will blend different food and in a different way.  But what is clear is that fresh, whole foods are always everyone's best source of vitamins, minerals and nutrients.

Fresh whole foods are far superior in nutrients to anything that is processed and put in a can.  One of the most noted benefits of starting a blended diet is that the tube-fed person digests food better.  Of course! That's because food was designed for our bodies to break it down and use its nutrients. We weren't designed to break down chemicals.  With better digestion comes a list of positive outcomes to include: healthier looking hair, nails and skin; improved weight gain or weight loss as the case may be; less gas/bloating, constipation, reflux, and vomiting after feeds; and more energy - to name a few.

The nutrients that come from foods are just not the same as the nutrients that come in a can.  Science cannot replicate fresh whole foods.  Fruits and veggies are packed with antioxidant phytochemicals, which are basically just the natural compounds of the plant. There is also a natural combination and interaction of phytochemicals and macro nutrients (proteins, fats and carbohydrates) that occurs with whole foods that can't be duplicated by mixing different vitamins together. 

Where to Start:

This is the hardest part, starting.  Don't feel as though you have to jump right in, don't get overwhelmed.  Starting a blended diet is a process -- a very slow, gradual process. You will learn as you go.  

The very first thing you need to think about is what exactly your Rett Girl needs.  Make a list of any intolerances or allergies.  Next, decide whether your Rett Girl needs to maintain or increase her weight.

Finally do a little research into a simple, balanced diet and an approximate calorie amount.  This is the step that scares a lot of people, but think of it this way: it's not so scary to prepare a balanced meal for an oral eater and you typically don't spend too much time counting the calories on the plates of your other family members, so relax and don't overthink this part, either.  Ask your daughter's GI specialist or pediatrician for a referral to a registered dietitian or a nutritionist who may be able to start you out on the right foot if you want some support.

Transitioning:  

This is the part where you need to go slow.  A few things that will determine how slow your transition will be: how long your Rett Girl has been on formula and if she is still able to tolerate some oral feeds or not, and her overall tolerance.  

If your Rett Girl has not had oral foods in a number of years and you are not yet sure if she has any intolerance to certain foods you may want to start with introducing one ingredient at a time just as you did when she was a baby first starting out on solids.  You can either introduce them on their own in between feeds, or blend them in with her formula.  As you add foods you can start to combine them to give her more of a complete meal, decreasing the formula as you go.  

Some families start with baby foods.  Stage 1 baby food can be given straight through the tube and can sometimes be an easy and much less intimidating start when moving to a blended diet.  Stage 2 and up foods need to be blended and put through a strainer to make sure they will go through the tube.  Many families will start this way and just replace one meal or feeding for a certain amount of time and then replace another feeding and gradually work up that way.  

Other families jump right into blending and will choose to blend whatever the entire family is eating at a certain meal or create a "staple" meal that includes all the nutrients needed but can be customized by changing the fruit, veggie, or protein to give some variety.

You can find information on how to create your own recipe here or check here for some sample recipes.  Here is an example of one of the recipes:

1 C. dark chicken meat
1 C. amaranth
1 C. brown rice
2 C. sweet potatoes
1/2 C. walnut oil
handful of fennel seeds
4 C. water to blend

If you're not sure exactly how to move forward you can see how one Rett family moved through the stages of starting out here.

There are many different ideas of a "balanced" diet out there but a place to start is just by starting with the basic food groups and using appropriate portion sizes for your Rett Girl's age.  Or, you can get a little more technical and start with the "macro nutrients" or the proteins, fat and carbohydrates (carbs) in foods.

Every person has different needs but a starting point is to go for 40% of the total calories from carbs, 30% from protein and 30% from fat.  Carbs and protein have 4 calories per gram and fats have 9 calories per gram.  So, if you have a food that has 5 grams of fat then 45 calories of that food are from fat.  You can do this simple equation for each macro nutrient in each food that will be blended and get a total of what your Rett Girl will take in through her diet.  

Tips 

1.  Always check with your Rett Girl's doctor before changing her diet, but don't be intimidated.  You are your child's best advocate and if you see a benefit to transitioning her to a blended diet make sure you voice your position.

2.  Seek the advice of a registered dietitian or nutritionist.  If nothing else then for peace of mind that you are including all of the nutrients that your Rett Girl needs.

3.  Remember water!  You can find general guidelines of hydration needs here and can add the amount of water you need to each feed.  Some parents, however, find a huge benefit to giving water 30 minutes before each feed.  Even just an ounce or two can help "prep" her stomach for food and maybe help with gastric emptying.   

4.  Invest in a good quality blender like the blendtec or the vitamix.  These blenders have the ability to liquefy food so you don't need to strain your blend before you put it through the tube.  They can be pricey, but contact the company and they should give you a refurbished one that is discounted with a doctor's note.

5.  If you are planning on overnight pump feeds you will want to be very cautious about the food spoiling.  Try the Koala by Feeding Essentials to keep food cool throughout the night.  

Resources:

Blended Food Resource Group

Feeding Tube Awareness Foundation

Lucy's Real Food - a comprehensive site about blended food for people who are tube-fed

Vitamix Blender

Blendtec Blender

By Bridget MacDonald, RettGirl.org Coordinator
Bridget graduated from Western Michigan University in 1999 with a B.A. in Nutrition.  She worked as a clinical, registered dietitian at William Beaumont Hospital and was a program director at the American Diabetes Association prior to having her daughter, Annie, who is diagnosed with Rett Syndrome.

2013 Father's Day Blog Series

For the week leading up to Father's Day, some very special Rett Dads have shared their stories with us. Here is a complete list of our eight guest blogs for Father's Day 2013 plus our Tribute Video.

Matt Greenlaw, Teagan's dad - "A Really Real Hug"
Chris Langan, Ilah's dad - "My Little Sweet Pea"
David Bousson, Leah's dad - "Bear Hugs, Headphones, Dora... and more Dora"
Ed Samaro, Kaitlyn's dad - "Ed and Kaitlyn's Special Bond"
Wally Trester, Courtney's dad - "Looking at the Bright Side"
Mike Prask, Zoe's dad - "Zoe Knows Best"
Will Rabke, Anna Cate's dad - "Our New Family Values"
Tony Shober, Ysabel's dad - "Finding the Windows"

"Finding the Windows"

Happy Father's Day! All week we have had some very special guest bloggers: Rett Dads. Just because their daughters girls have Rett Syndrome does not mean they are still not "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

 

Happy Father's Day! The last post in our series is from Tony Shober, Ysa's dad

In 2008 our youngest daughter Ysabel was diagnosed with Rett Syndrome, after 18 months of knowing, despite being told to the contrary, that something was subtly yet very different with our little girl.  Our friends at GP2C asked if I could share some insights about being a Rett father for their June blog - some brief thoughts follow.

One of the most useful anecdotes I have heard regarding people with special needs came from a neighbor, whose children are now fully grown, but whose older brother contends with hard challenges on the autism spectrum.  We had only just received Ysa's diagnosis, and were going from group to group at a neighborhood block party, still feeling pretty raw, relating what was new with all our kids, with some emphasis on Ysa.

He heard us talking from across a group and walked over and asked if he could sit with Ysabel for a bit.  He is a bear of a man, and someone I would not have pegged for sensitivity, yet he scooped up Ysa in his arms, plopped her down on his lap, and sat patiently with her, chatting with others, until they could meet one another's gaze.  It took some time but when they connected he got a huge smile from Ysabel, a raspberry or two and lots of laughter and smiles.

He explained to us that a majority of the time his brother deals with the pathology of his disorder but that there were windows, moments in time, when the clouds seemed to part and they could really connect. It has been that way since their childhood together.  He felt that you needed to recognize these windows and take advantage of every one of them.  It is a simple, instructive observation.  He kept Ysa for another ½ hour or so, seeming to take real pleasure in the moments between them.  It was an epiphany for me as a Rett father.

The Christmas following Ysabel's diagnosis we were at Mass with family and my Father in Law, Bob, asked if he could sit with Ysa for the long service.  Bob possesses the understated conservatism of our parents' generation, and was really struggling as he watched his daughter and granddaughter deal with our new reality.  Ysa was in the thick of her regression phase with Rett, and holding her entailed some real patience.

The Mass was packed, and at one point Bob got up to walk with Ysa as she was crying, and we were separated until the end of the service.  We felt a little guilt admitting it, but it was a relief to have an hour or so of respite with our other 2 kids knowing our little baby was safe with family.  Back at home that evening we sat down to talk over a cocktail and Bob related simply "that something passed between us that night" (Bob and Ysabel) and that he was moved profoundly by it.  He has become a real friend to Ysa:  he loves to sit with her at parties, he joined us at Disney and accompanied Ysa, pushing her in her wheelchair for the entire week, he sits with Ysa on his lap while watching the films of his era at our home.  In short, he found the connection.  Fantastic.

For me a challenge of being a Rett father is trying to set the stage where Ysabel can connect with others and visa-versa, recognizing that while she fights through the haze of her symptoms,  that she is acutely aware of the world around her.  Strangers and family alike struggle at first with behaviors for which they have no experience or framework - the seizures, medical gear, hand wringing, inability to easily match one's gaze, vocalizations, crying and eating issues that do not seem age appropriate.  Children stare in a way that makes you cringe.  This being said, with each occasion that you summon the patience to show that Ysabel is a sweet little girl like any other only with some extraordinary challenges and get people to see past the symptoms, you set the stage for people to connect.  It is a profoundly humbling yet rewarding responsibility.

Yesterday was our summer block party, five years after her diagnosis and the first anecdote above.  It was 95 degrees and humid, Ysa was having a really tough day and we could not bring her outside to socialize.  She was sitting inside watching TV and reading with my mother for most of the afternoon.  Around dinnertime I could not find my middle daughter and her group of friends, and when I went into our home to investigate, I found them in a circle around Ysa laughing and talking in front of the TV.  Ysa was grinning from ear to ear.   To anyone else it might be nothing special, but to me it felt like a hard fought win.

"Our New Family Values"

 

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Today's post is from Will Rabke, Anna Cate's dad

We have all heard the saying about “finding the silver lining” in a bad situation; to all of the families that struggle with girls and women fighting Rett syndrome, this must become one of our Family Values.  There are countless ways that Rett syndrome has made me a better person and more importantly a better husband and father, but one of the most important is that my daughter’s diagnosis forced me to develop my own unique set of Family Values.  Here are a few of the new or altered Family Values that I have learned.

Taking it in stride

When your oldest child is impacted by something like Rett, you don’t have “normal” development to compare against, so you just learn to take everything in stride.  This is not an easy change to accept, but it is a change that must be accepted.  Our family celebrates the amazing things that my daughter with Rett syndrome does, and we have learned to celebrate the everyday things that our other two kids do.  Were it not for Rett, we would never appreciate the importance of thanking God for all things, big and small, that each of our children do everyday.

Perspective

Perspective is another great lesson that I have learned from my daughter.  My little girl has Rett syndrome, but I am blessed that she has a mild form of this devastating monster.  There is absolutely nothing that I will face which comes close to the battles that my daughter wins against Rett syndrome everyday.  “Bad day at the office?” Really? How about finally succeeding to grasp a cup after thousands of failed repetitions of having to force your own hands to, first, separate from their constant clasp, then hold a cup so that you can drink on your own.

Grief

I would be lying if I failed to describe a bad Family Value that accompanies having a daughter with Rett syndrome, grief.  For the months that my wife and I waited to get the genetic results back, which confirmed what our daughter had, I stayed up nightly researching Rett syndrome, just hoping that I would find something that would prove that my little girl did not have this.  Unfortunately, by the time, I took the fateful call from the geneticist confirming my daughter’s diagnosis, I knew that she had Rett syndrome.  My tears had been shed over the prior months as I sat up at night searching for some different answer, so I was somewhat prepared when I finally heard those words, “The genetic tests confirm that your daughter has Rett syndrome.”  But, after that initial moment of loss, the feelings of grief still arise when something makes me wonder “What if?”  For a couple of years after our diagnosis, I could not handle watching a father give away his daughter at a wedding or share the first dance at the reception, because it made me ache to share those moments with my own princess one day.  Now, the grief is triggered when I see other girls do something that I wish my own daughter could experience, usually something little, like taking off on a bike to a friend’s house.

Hope

Finally, Rett has taught me and my family to Hope.  I hope that one day, my precious, little girl will tell me she loves me, give me a hug and walk away to live her own life.  Amazing how visualizing one’s daughter being able to do those things would be such a miraculous dream come true.  Hope must be constant and unfaltering.  Our family shares a hope for our daughter to continue to grow and learn new skills, and a hope that a cure will be found before the Rett monster breaks our little girl’s body apart.

"Zoe Knows Best"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

 

 

Today's post is from Mike Prask, Zoe's dad

I don’t think I was qualified for the job when I became a father for the first time. Our oldest daughter is six now, and despite (and perhaps because of) many of her wonderful idiosyncrasies, I think I’ve done as good a job as I could have expected.

Our younger daughter, Zoe, has Rett Syndrome, and I can say without hesitation that I wasn’t qualified to handle the responsibilities that have come with that. Any success my wife or I have had in this area we owe entirely to Zoe. Despite the limitations, obstacles, and hardships that Rett has presented to her, Zoe has the purest heart and sweetest demeanor of any child I’ve ever known. Without those qualities – along with her wonderful smiles, her reassuring pats on my cheek, and the two-armed hugs she’s developed the skills to administer in the last year – this job would be so much more difficult.

It has still been a tough journey, for which my wife and I have been fortunate to have each other. Zoe is as healthy as she could be in light of her condition, yet there have still been long nights in the hospital, waiting for her tiny body to rehydrate from a bout of pneumonia, and neurological episodes that approach a blurred line into seizure activity but never cross it. Out of all those scary moments, none came close to the anxiety we felt the night before Zoe’s first day at preschool.

Up until that point, Zoe had never been anywhere without either of us, except for the occasional overnight visit with relatives. She could neither walk nor talk (and still can’t), and yet we had this notion we could send her off to school, on a bus, no less. My wife and I barely slept that night, and I was ready to call the bus company and the school first thing in the morning to say we’d changed our minds.

There was no way she was ready, I assumed; the whole thing would have to wait till she was ready. Luckily, Zoe knew better. Morning came, the bus arrived, and we buckled Zoe into her seat for the ride. She had as big a smile on her face as she could muster and could not have been more excited to start something new, to experience something fresh. The look on her face was unmistakable, and she had the same expression when the bus brought her back that afternoon – ‘What the heck were you so worried about, Daddy?’

That was two years ago, and while I laugh at myself for worrying like I did, I can already feel the same anxiety building for this fall, when she goes off to kindergarten. I tell myself this time, I’m right. We don’t yet know what school she’ll attend or what kind of program it will be. She could attend a school 30 minutes away instead of our neighborhood elementary school where her sister goes. She could be in too restrictive a special needs program, where she won’t be exposed to the appropriate kindergarten curriculum.

We could get our wish, and she could be in a blended program with typical kids, but those kids may not understand her or her condition. It’s terrifying to us, every possible scenario that can arise. But if we continue to be as lucky as we’ve been, the next terrifying situation won’t be the last one. We keep praying there will be another terrifying situation for Zoe to confront around the corner from the last one. She’ll continue to wonder why we worry, and she’ll continue to do just fine.

And every day, we try to figure out a way to make up tomorrow for the fact that we didn’t overestimate Zoe today. Why don’t we do that more often? I guess I’m too afraid, and not equipped, to let the most indomitable spirit in this house have her way with the next obstacle in front of her. After all, around here, she’s the one most qualified to deal with this on a daily basis. I’ll learn someday.

"Looking at the Bright Side"

With Father's Day coming up this Sunday, we asked Rett Dads to be our guest bloggers for the week. Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

Today's post is from Wally Trester, Courtney's dad

That moment in time that we were told our daughter Courtney had Rett Syndrome remains as vivid of a memory as the other ones someone would cherishes such as a wedding or the birth of your children.  I don’t know if it was the realization of the life I was soon to discover, or the one I was leaving behind.  I was still young at heart, and tried to live to the lifestyle.  

Kind of carefree to the rest of the world and only worried about things that mattered to my family and me.  I look back at that time in my life as the hardest test I would ever encounter.  I had just started a new position in the company I work for, things were going great.  I then decide to take on College – something I and many others thought would never happen.  Then things began to take a turn, Courtney’s development was not what it should have been and the extensive testing begins.  Test after more test, medical bills upon more medical bills and the stress of life starts to build.  As the testing continues the dark depths of the unknown continued to grow.  I remember there was one point in time where I thought something has to give – the question was what was it going to be.  

Then the call came in and we now knew what the problem was, and reality came crashing down.  I know what I was doing up to the point that I got the call, but I don’t remember much after the call.

Something happened that day that changed me forever…

I now have a different look on life.  Much of it comes from the experience my daughter has endured.  When things seem like they are at their worst, or I can’t continue on. I reflect back everything my daughter has endured in her nearly 6 years of dealing with Rett Syndrome.  I look at this entire experience and remain humble for what we do have and the things we can do.  

As I know there are others out there in far worse situations.  Had it not been for Rett Syndrome, I don’t think I would be the kind of man I am today.  I would not have had the opportunity to meet so many great people, or help raise awareness for a great cause.  While I hate Rett Syndrome for what it is and how it robs our girls, I’m thankful of the things it has taught me.

So when I think I’ve hit that point that I can’t continue on, I just think about the all the things Courtney endures in a day and the challenges I have already overcome – think of the bright side of the situation and persevere.  Pray for the CURE to give my baby girl the life she deserves.