The Kitchen Window

Back in college, I had a wise, older professor of Theology, Dr. Seat. He humored us with his    blog, “The view from my seat”. I always thought that was such a cute and clever name! And, I have often thought about the view from my seat, and the people around me. We all see things differently, cope in different ways, however, we are so much alike. I write this not only to talk about my view, but hopefully to give tips to other special needs families and make your view a bit brighter.

Parents with special needs children usually have something that is a priority in their child's life. For example, a behavioral plan, physical accommodations or a nourishment regimen. Well, the view from my seat is typically out of my kitchen window,  to my lovely screened porch and family friendly backyard (trampoline, swing set, dog poo). I spend hours in my kitchen everyday, preparing food and feeding my son. So, there is the argument - Get a life! Don’t focus on it! Blah, Blah, Blah. But, lets be realistic here - this is big part of my life! Of course our life is full, of all the typical family things. But, providing 100% nourishment for your child, is a full time job. For parents who may not understand, it is similar to breastfeeding, in the aspect of being the sole provider of nourishment. But, there are many more steps involved, and for some of us, it is a lifetime commitment. 

There should be more education on feeding tubes. I literally watched a 30 minute cheesy video on “highlights” of tube feeding. It had a teen riding her bike, “look, I can ride my bike with a Gtube”. It had a parent setting up the pump, “its as easy as 1,2,3!” I had no clue what I was in for, I had no choice but to accept the challenge that was before me. Fast forward 3 years later, I have learned so much, I have researched, talked with parents, joined support groups and found fabulous Face Book pages that have saved my sanity.

There are days when it is a love/hate relationship. But, for the most part, I have graciously accepted and tried to be creative with the hand that I have been dealt. My dear son, Chase, has been diagnosed with a genetic syndrome (which impacts his eating). I won’t identify him by this, because he is so much more than a title of some long, hard to pronounce syndrome! But, the reality is, from birth eating was a challenge. To put it bluntly, oral eating didn’t exist. Life got brighter after I got rid of the doctors that thought I wasn’t feeding him purposely (sigh!), still think I should send them the genetic results!  I became educated, very educated on tube feeding, feeding options and increasing oral skills.

At 2 weeks old he got a NG tube, 9 months G tube and just a few weeks ago ate gold fish crackers for the first time in his life! Wooo hoo! It has been a long process. It is not a process that a parent is ever properly informed about. Most often the goal is "tube for life" and using a canned can't-pronounce-the-ingredients formula. What is not discussed is the many options that are available for nourishment and most importantly, the psychology that comes with tube feeding a child. I do not and will not judge any family and their journey, each family has made the best choice for their child. I would, however, like to be frank regarding the psychogical impact of providing complete nourishment for a child and to encourage, empower and provide hope for a mental shift that must take place.

So, back to the kitchen. I have chosen to ban the can and make Chase’s food - aka “Blended Diet”. (Feel free to check out my blog, "Just one bite" http://solowithstacey.blogspot.com/2013/07/just-one-bite.html, talks more about this option). I felt a bit more at ease when I could make his food and pronounce the ingredients. I use whole foods, a super duty blender and I create a batch of green slime every 2 days (takes me 2-3 hours).

In addition, my child receives 5 “feeds” a day - over the course of 1 hour each. Do the math, I live in my kitchen. We also encourage oral skills, so we are providing several oral attempts each day. We encourage Chase to cook with us, prepare and taste his creations. He has a sweet tooth, anyone need any cupcakes? Apparently, I do, my hips are showing it!

I have always enjoyed food preparation, meals with my family. But, like anything when you don’t get a day off, it is hard for the soul. I might add, I am a 100% single parent, so I am the only provider for meal prep, tube feeds, etc. So, here are some tips on how I made tube feeding great!

1. Forget the fact that you are inadequate or giving up on “oral feeds”, because your child must utilize a feeding tube. It IS saving their life! Whatever the reason, roll with it for now. Once things start to improve, make adjustments - more on that later.

2. Silly as it sounds, I make my kitchen a place I want to go, it is quaint, pretty and I always have my scented wax brewing!

3.  I prepare/ blend his food alone, I have the kids quietly occupied, so I can use it as time to refocus and most importantly, measure my ingredients correctly. I have been distracted, yep - that was the day I forgot to put the lid on the blender.

4. The psychological impact of not being able to bottle feed or breast feed my child, was huge. It was a strange feeling, a mother is supposed to feed her child - it is natural. I felt very empty, especially he was a small infant. I honestly think I still grieve this, it was really hard for me to have a machine feed by baby, beep! beep! add more food - felt so wrong. This was never addressed by any of our providers. And, if I spoke up, I was to be judged, so I kept quiet.  I had to find ways to engage him, nurture him, without feeding. So, I made sure to spend ample amount of time snuggling, when he was younger we did tons of skin to skin time, and still do. Of course this is important with any child. But, for tubie parents, even more so.

5. Chase participates in his tube feeding experience, always. He uses a small syringe to taste his blend while I am feeding him. He pops open his tube and attaches the extension.  We talk about the food, smell it and I point out the ingredients. I let him lick it, touch it and help push the food through.

6. When doing #5. Focus, be calm, have fun! There are days when I am in a hurry, or days when he is acting up, it can’t impact the feeding. If he is crying, you can’t feed, his stomach must be relaxed.

7. Personally, I provide my child with privacy. Yes, this is the way he eats and should be accepted by all. If we are away from home, we feed in the car. We don’t buy tube gear, colorful patches, etc. How he eats is only a small part of who he is, I am not going to draw attention to or identify my child by his inabilities.

8. So, regardless of providing your child with privacy. There are days when you will have to explain your situation. It was much more often with the visual NG Tube (through the nose). Now with a Gtube (in the tummy), it is rare we will get asked about his feeding. I encourage you to use the best advice I ever got - Explain your child's “need” in 25 words or less. I don’t have to give a stranger (or even extended family), a run down of his diagnosis. I can simply say, “it helps him eat”. I found in the beginning, I was giving the “Cliff Notes” version of his health history to anyone who inquired. Now, he clearly hears me, I respect his privacy.

9.Even though Chase is just starting to explore food, he loves to cook, stir ingredients and taste his final product. I have him around food - ALL THE TIME! We have food within his reach from sun-up to sun-down. Even if he is licking on a cracker or smelling muffins in the oven, it is a food experience. We have a play kitchen, we take our stuffed animals to dinner, we play with food frequently! Personally, I let him try anything - nutritional value (of oral food) is not a priority at this point. Chase never had babyfood and rarely drank from a bottle, he had many swallowing issues. Now things are improving, the mechanical function of chewing is emerging and swallowing is going great!

10. Sitting down at meal time, with a child who can't participate, was hard. For awhile, I tube fed him, then I ate with my other child. I could only focus on the inconvenience, It changed the dynamic of our family dinner. Stop! What was I thinking? Now, we have chosen to make family meal time a priority! Regardless, your child is getting the modeling experience of seeing other people eat and social interaction. Sometimes, his favorite part is giving the dog dinner scraps - heck! Its modeling, the dog is eating..right?

The best advice I can give for families who use a tube feeding regimen is to never go backwards. Most children regardless of diagnosis, can always improve the regimen that they are on, make it family friendly. And, all families can include their child in the mealtime routine, whatever that may look like. Eating is social in our culture, allow your child to partake in this activity, it is about INclusion, not EXclusion! Chase was on 24 hour feeds, shortly over 2 years ago, with a feeding pump. Today he gets 3 feeds (during the day), 2 water boluses (with syringe) and we just started a small wean, which allows him to feel more hungry, by reducing the amount he gets. He will be off the feeding tube, I have no doubt. I encourage families to think outside the box and research options on various feeding protocols. Incorporate tube feeding into your world, don’t allow it to BE your world!

The first sigh...

My dear friend,

I am so sorry for your pain. Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time. I never would have wanted to pass it on to you. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother/father, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big blue eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Heck, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful… (ie. Dude, that’s retarded). Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet girl be far better than OK. You will show her boundless love. She will know that she is accepted and cherished and celebrated for every last morsel of who she is. She will know that her Mama’s there at every turn. She will believe in herself as you believe in her. She will astound you. Over and over and over again. She will teach you far more than you teach her. She will fly.

You will be OK.

~To the moms still at the Ronald McDonald House in Cinnci, many have been there months, some years. May you find strength, joy and perseverance every single day.

xo
Stacey

Just One Bite!

This is our story about oral aversion, tube feeding and blending. This is what has worked for our family, based on my own research and opinions. 

THE HISTORY!

From the day he was born, my sweet boy Chase had a hard time eating…just never quite got it. It didn’t matter if it was a boob, bottle or spoon – he was not interested. At about 10 days old and losing weight quickly – due to lack of food volume and increasing energy he was burning trying to eat, it was getting concerning. It was time to place a NG Tube, a tube that goes down the nose into the stomach. Formula or Breast milk would flow through a pump into his tummy – Initially, one ounce per hour/ 24 hours per day. He received constant nourishment, but vomited most of it. It was a vicious cycle, battling doctors and debating with therapist. Needless to say, having a tube down the back of your throat and excessive vomiting did not help the oral aversion – it made it worse. I would attempt to give him a bottle during the day and he would scream/twitch/turn his head - refused.  The goal was survival and calories, the feeding tube won.

First, I thought it was my overly engorged breast, latching issues. Tried all positions, Lactation Gurus, attachments, you name it – there was no change. Then we switched to bottles, tried every nipple, temperature, holding position – no change. I purchased every invention imaginable to help increase his oral skills – Nuk Brush, Boon Spoon, Chewy Tube, Mesh Rattle, fancy straws, Honey Bear Cup, Nosie Cup – and many, many more. I guess it was just wishful thinking, that the right tool would change his mind. Maybe it was the comments from family and friends..”Is he eating YET?”, “Have you tried green beans, mac n cheese?”, "Did you burp him first". “You just having found anything he likes to eat!”, “Don’t worry, he will just grow out of it!”

Then, I thought it was me? So, I let someone else feed him, again, no change. It was time to get help, We started with our Early Intervention program at 4 months old.  Chase had OT (Occupational Therapist) and SLP (Speech Therapist). OT, provides assistance with daily living skills, like eating and working on textures, sensory etc. Speech Therapist work on the function of the mouth, swallowing and of course speech.  Speech is greatly impacted by oral aversion/delayed eating. If you don’t learn to use these muscles when eating, using them to make sound is very challenging. 

I remember having a SLP who would strap Chase in his high chair (barely 6 months old) and turn on a timer. She would shovel baby food in this mouth until the timer went off (5 minutes later). He was crying, I was crying, he would start vomiting - she was fired. I really didn’t know any better, but was looking for someone who had the right answer.

Over time, we found out (through numerous swallow studies) that he had mechanical issues with swallowing. A video swallow study watches the food (in our case, liquid) go through a complete swallow cycle. Unfortunately, most of our studies were limited, due to Chase’s lack of interest in swallowing ANYTHING. But, we did find that he had a delayed swallow, aspirated and had pooling. Basically, swallowing was difficult from day one and it still is. He “wants” to eat,  it is a Challenge. For me, it’s like a child who has paralysis and “wants” to walk, but, it just doesn’t work.  We have accommodated Chase and cheered him on along the way. He has made great strides and I will share some of the tips that have proven successful!

FINDING THE RIGHT BUTTON!

At 9 months, after consistently torturing my son with sticking a tube down his nose.  I finally convinced the doctors to move forward with a Gtube – a “permanent” option that is a tube directly into his stomach. I change this tube every 3 months. I think it looks like the valve on a beachball – we open it, use a connector and enter his food. It is out of sight, it is easier to manage and better yet, he can’t pull it out “as easily”. Side note – I highly suggest the AMT Mini One Gtube.  Our provider used a Mickey Button, which was nothing but problems (leaking, yeast, granulation tissue)...it was horrible and very painful! The Mini is a smaller product and I think that it is made out of a different type of material – Chase has zero “reaction” to this tube!

There are things like decorative Tube Covers and Belly Covers to brighten things up. You can get your kids initials, or favorite sport or cartoon character...nice...they are cute, they are pointless. The tube should never leak! If you need to put a pad around it, then you need to get a new tube. When we had the Mickey, we would use Polymem (dressing around the site)..it would help the moisture, then create more problems. Chases tube gets no special care, it is washed in the tub and dried when he gets out.  It is part of him, he is used to it. He is active and plays rough– it has came out a few times, its no big deal. The only thing I am extremely cautious of is keeping it clean. He gets daily baths and is NOT allowed to play in a lake, stream or pond. We are careful of standing water (water table and kiddie pools). We are also careful of “accidents” in the bathtub. Any “dirty” water that could get under the tube could cause an infection. We are lucky, his tube looks fantastic!

After treading through the first 18 months with the vomiting and refusal. I decided it was time to make big changes. Personally, all of these changes were made by my own investigation and trial/error. I have found a couple of good providers/therapist. But, in general, I found that they didn’t care if he vomited, ate or was on a feeding tube the rest of his life.  I have gone to 4 major hospitals and their pediatric feeding clinics, no one had an answer. I spent countless hours on the highway, nights in various Ronald McDonald Houses and left with a new chewy tube. I took matters in my own hands. Blending his food was NOT suggested (actually discouraged), sticking to the can and moving to a GJ tube was in order.  I was not going to settle for a more invasive tube (GJ) – food doesn’t get digested the same, requires 24 hour feeds. I had a plan for my son  to move forward, not backward.  I was going to constantly strive and never settle.  I put my foot down and started making small changes, with or without professional approval.

THE FIRST CHANGES

The first thing I did was call our DME and say “the feeding pump and pole are ready to be picked up”. I hated this equipment, my baby was getting tangled around it and the beeping ran my life. I decided to go to a “Bolus Feeding” Schedule. Bolus basically uses a syringe and tubing and instead of a feeding pump pushing the meal through, the parent does it manually. I put Chase on my kitchen counter and do his feeds. We feed, break for 15 minutes and feed again. He eats 3 times per day (10 oz. each time) and gets 2-3 water boluses. Chase likes water out of a straw cup; he does this with caution and sometimes uses a Thickener – Thick It.

Bolus Info:

http://www2.mskcc.org/patient_education/_assets/downloads-english/565.pdf

I might mention, when he had most of his issues he used a product called Simply Thick. My son was very sick, had horrible, frequent slimy stools on this product. I remember asking the doctor it this could be the issue, they laughed at me. A few months after I stopped using this product for my son, it was RECALLED by the FDA. I have attached the article; our local children’s hospital first only stopped use on NICU, and then later pulled it completely off the shelf. We rarely use thickener now. My goal is to have minimal synthetic products put into my children, as you will see below, his food is adventurous enough!

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm256250.htm

TOOLS SUGGESTED

The only “expensive items” I would suggest – The Chewy Tube, The Nuk and The Mesh Rattle:

The Chewy Tube- (Chewy Dog toy for Kids) Works on building chewing muscles. Can use alone, dip into sauces or fill the holes with purees. Dishwasher safe – Last forever!

http://www.amazon.com/KNOBBY-TEXTURE-CHEWY-TUBE-GREEN/dp/B00175ROGU/ref=sr_1_3?s=toys-and-games&ie=UTF8&qid=1373903125&sr=1-3&keywords=chewy+tube

The Nuk Brush – (Similar to a soft toothbrush), can use alone or dip into foods, dishwasher safe – Last forever!

http://www.amazon.com/Gerber-Nuk-Brush/dp/B001UZ31SC

The Mesh Rattle – fill with your favorite fruit or veggie. Tot can suck through holes and doesn’t get any large bites. A great way to introduce flavors – Hard to clean. Kids with sensory difficulties may find the mesh an odd texture – this was hit or miss with Chase.

I have a similar item except mine is a fabric, not plastic mesh

http://www.amazon.com/Award-winning-Kidsme-Feeder-Small/dp/B005KWL0OI/ref=sr_1_fkmr0_1?s=toys-and-games&ie=UTF8&qid=1373903215&sr=1-1-fkmr0&keywords=mesh+food+rattle

FIRST FOODS

Regardless of your child’s age, when a child is orally adverse it is suggested you start from the beginning. Think babyfood, think 6 month old. Unfortunately, we are not there yet. We are still working on very small bites of Jell-O. We are working on tastes and miniature bites that dissolve (I call them, “Sprinkle Sized”). I do not count calories from oral eating; he gets enough through his tube. Due to Chase’s small stature, we are not able to “regress” on tube feedings at this point to encourage hunger (Another school of thought – Tube Dependency).  I keep this info in my back pocket and as he gains more weight, I will try decreasing feedings!

Here is the info:

https://www.notube.com/info/early-eating-behavior-disorders

I use the above mentioned tools with flavors listed below.

In the beginning we used novelties – this can cause an argument with the families who are “tree huggers” and focused on natural. I was desperate to get my son to eat, and I was willing to start with anything.

The focus is BIG flavor and Disolvable. Our first goal was moving the tongue around simple, small items.  Chewing and swallowing complicated textures will come later – it is our biggest challenge.

-suckers

-cotton candy

-sprinkles

-DIPPING sauces – BBQ, Marinara, Ketchup, Steak Sauce, etc. (we use Gluten free Pretzels, cheese straws, veggie sticks as the DIPPER)

- Jell-O

-Peanut Butter / Jelly

- Pop Rocks – popping candy – a small party in his mouth

- M&Ms – broken up in 4 pieces

-Popsicles (the cheap kind) with Real Fruit and Sugar (We do not use artificial sweeteners – you shouldn’t either!)

-Cinnamon and Sugar mixture – he loves this, often use as a motivator after trying a non-preferred food

-Corn on the Cob (with corn handles), dripping in Butter

-The Blended Diet – yes! He likes the way it tastes

-Frosting

-Apple - cut to sprinkle size – use toothpick to pick up and eat

-Orange Slices (sucks the juice out)

-Strawberries with nondairy whipped cream

- Watermelon – great texture and juicy!

-Very cold sparkling water, though a coffee stirrer (looks like a mini straw)– it’s small enough to get to the back of the tongue – it wakes the mouth up!

Didn’t work: Raisins, peas – anything small and round would cause gagging and frighten chase. Strange liquids do not appeal to him – Coconut milk, juices - not interested.

He Always has ice water within reach through out the day. I have tried every sippy cup ever made. My favs are a old school Tupperware with my own straw, cut to size. And, mini sports bottles with a spout lid from the dollar store. They are both easy to clean and if you lose them you are not out $12!

BLENDING!

When Chase was about 18 months old, I started to Blend his food – with Careful Consideration. Getting a Blendtec super power blender and researching techniques, I gave it a shot. It is a lot of work. But, I will never, ever have anyone talk me into giving my child nourishment out of a can again!! I am embarrassed to say that he had 18 months of Crap in his system; he was fragile, vomiting and miserable. We tried about 10 different kinds of formula – elemental and not – with the same reaction. I cringe when parents give their kids formula, when it is so easy to blend! FYI – My blend is thin, like formula – it is NOT thick.

Immediately after Blending we starting noticing improvement, then when I eliminated Dairy and Gluten – he completely stopped vomiting and started to grow! Most noticeable, his hair, skin and nails looked much healthier!

DO NOT BE SCARED OF BLENDING! It is the best choice I could have ever made for my son, he gets fruits and veggies and lean meats. I can pronounce each and everything that goes through his tube! Everything is fresh (nothing from a can) and NO PRESERVATIVES!

FYI – Blendtec and other similar blender companies will often offer free or price reduced blenders to families with Tube Fed Children.  Our Blendtec will turn an apple into apple juice – it is FANTASTIC!

We started small; I researched, asked other parents and stressed out about every calorie. Then I realized that the “proof was in the pudding”…Is he getting sick? NO is he gaining weight? YES! I stick to a general recipe, alternating the fruits/veggies and meats. I make 48 hours of feeds at one time and I never freeze or make large quantities ahead of time. It is time consuming, I am at the store often and I would not change it for the world. It gets easier!

Chase takes Zero medications, he Does take Probiotics

The items in his blend include:

Meat, Fruit, Veggie, Avocados, Raw Local Honey, Coconut Milk, Cod Liver Oil, Real Butter or Coconut Oil and Peanut Butter, Poly vi Sol (multi vitamin)

Blending Resources:

http://www.feedingtubeawareness.com/diet-nutrition.html

https://www.facebook.com/foodfortubies

-          Prior to getting his tube feed, Chase is offered food at the table – He is required to taste his food- it is great if he takes a couple small bites. While getting his feeding a 10ml syringe is filled with the blend or a small plastic medicine cup and he drinks the blend while I am completing his feed. This is extremely important – EATING = getting FULL.  You do not want your child to think that the only time he gets full is through a feeding tube.

Well, Chasers is embarking on his 3^rd birthday and we are still relying on the Gtube. My boy is active, healthy and thriving. His weight is climbing and tube feeding is a huge part of our life.  The tube and I have a love/hate relationship. I am so very grateful for it, and for my baby! It is a lot of work and I feel like I live in the kitchen. Traveling is tough and our life revolves around a feeding schedule. But, I have found something that works for us. I am grateful of the technology to allow my son to have a tube to provide him nourishment and I will continue to encourage his appetite and ability to enjoy food!

And , That Is OK!

We all seek the same things - Love, Affection, Acceptance and Validation.  Although, the journey to find these successfully and in a healthy way depends on many factors. I believe that they are often engraved from your genes and surroundings (environment and parental influences). Sounds simple, but these are the  ingredients life is made of...seeking quality, top shelf ingredients and finding them is the journey. 

I have had ample time to reflect recently, I have been relocated to Texas - 9 hours away from the things that make me tick - family and home. More on that later! I am with nearly 200 colleges from across the US (born world wide). I haven't been around this many adults (strangers) at one time since college - its an overdose - and interesting.

When visiting with my new friends, I have realized we are all more alike than different - seeking personal goals and empowerment (whats on the inside).  My unpopular views on life choices (whats on the outside) - race, religion and gay marriage - I will leave out of this blog. Because, simply- I think if you find love - I am happy for you and I don't have the power to judge you - only to accept you. Period. 

Back, to what makes me tick....I have been pondering this a lot recently after I saw a fantastic article in Oprah Magazine. It is a great, full-of-good-stuff magazine - the only one that is on my priority list! 
The article is about the PATH of LIFE. 
Basically, the author has a vision for her life and career - 10 career changes later, one thing leads to another and by surprise she found her niche. The travel may be bumpy, but arriving to the destination is where the joy is.  The big issue is timing. I know that every high school student (me included) - has a vision, a plan, a dream. Typically - graduate, college, career, marriage, kids, white picket fence, blah..blah blah. 

I write this blog to provide validation to those who arrived late to their destination (I'm rarely on time!), those who haven't found it and those who criticize the path of uncertainty that someone may be on. Shame on you!

My journey had numerous career "starts" - Real Estate, Cosmetology School, College - just to name a few. The good news- I can tell you a lot about Real Estate - I still hold my license! I can cut my kids hair - comes in hand!. Then, transitioned into Corporate America and lived in a cube for many years with some fantastic (and not so fantastic) companies.  And, in between, I got to stay at home with my kids when they were infants.

 It worked!  I provided for my family and I got to explore people, creativity and career.  A few years ago, I decided to return to school - change majors - it was fantastic! Last year, on a whim - I applied for a job (that I had applied numerous times before) - and I got it! Total Transformation, Total Change and Total Detour!

 I remember praying for guidance and direction and praying for the best for me and my kids. 
Moving forward 1 year - I am in Basic Training at a Government Academy in a challenging and new career! I love it! I was scared coming here, mid life, 2 kids - baggage! What would they think? Would I fit in? What if i don't wear the right thing? Say the right thing? I forgot how to be corporate! Help! 

Then, Day 1 - I realize, I have a lot to bring to the table. I have worked for some great companies, I have a great skill set! And, guess what - I am NOT OLD! Actually, most of my class is 30s to 50s - and they too have JUST NOW landed into a career field that they were ready for.  

Things have came full circle, at the right time...And, That is OK!

My favorite quote - "I have no regrets, at one time, it was exactly what I wanted"

This is so powerful, reassuring and TRUE! There are at least two time zones where you can choose to make regrets powerful energy healing rather than destructive: the past and the future. Both can be transformed by what you decide to do right now, in this moment.

Let's start by changing the past. If you think that can't be done, think again. Literally. The past doesn't exist except as a memory, a mental story, and though past events aren't changeable, your stories about them are. 

Read more: http://www.oprah.com/spirit/Stop-Regretting-Decisions-Martha-Becks-Plan-to-Let-Go#ixzz2XcMOO7M9

My kids know, I will provide unconditional support until they find what makes them happy - and, they don't need to decide at 18!

Search for what makes you tick, smile and excel!  Find a career that fits your mold and keep looking for the next great thing. Today, I am embarking on a exciting career, I still get to work for Family Partnership and assist families with special needs and I never had to let go of my writing - just got a article published!

 I have found the things that make me light up, I have created my path, been grateful for the journey and arrived at my destination!

Cheers!
Stacey

Lotions and Potions

Anyone that knows me, knows that I love to pamper myself. I even have more appreciation for my lotions and potions since there was a period a couple of years ago - when taking a shower was a luxury. I like to keep it simple and of course - SAVE $$$! So, I am always on the lookout for a new find.


Typically, I make out really well at Beauty Brands - I am on their mailing list - I get a "Free item with purchase" every other month (typically, a pretty good item - shampoo/hairspray/etc). I take my coupon and go straight to the Clearence isle (tucked away in the back of the store). They have a 35% off and a 65% off - I only go to the 65% :)  And, of course - I look for the most volume (of product)  for the least amount of $$ - who cares if it has been discontinued?? I always score big AND  get my free item! In addition, they have a program  - each time you spend $100 you get 10% off your next purchase - they keep track of your purchases - its great.
http://www.beautybrands.com/jump.do?itemID=5&itemType=LANDING&page=TAKE_10_REWARDS

This being said, and totally TMI...my hair/skin products - regardless of brand are starting to bother me. Not only did I find hairs in strange places and a few extra wrinkles around my eyes..now I have weird reactions to perfumes and dyes - itchy and breakouts. EWWWW! This must happen when you turn 36! No one told me :) So, in my quest to make our food a bit "preservative free" (see earlier blog) - I decided to get some ideas on do-it-yourself hair care products.


And, what did I find - but ingredients in my own pantry. My favorite item of all "Braggs" Apple Cider Vinegar. There are countless health benefits - I often drink it (Must mix with water)..it is awesome (for you - horrible taste!).

http://bragg.com/products/bragg-organic-apple-cider-vinegar.html

Other must haves - Baking Soda, Olive Oil and Sea Salt = beauty for pennies!

My skin and hair feels and looks great. My hair is shiny and has no build up! My skin feels like Glass, smooth, clear and moisturized!

Currently, I am using these DIY hair products - every OTHER day.
I bought a ketchup/mustard bottle from the Dollar Store as my applicater- works perfect - and your guest will think you eat hot dogs in the bathtub! Let them wonder..lol!


HAIR
Bottle #1 - Add baking Soda approx 2 Tablespoons and fill the rest with water. Shake until well mixed. Apply to hair and scalp, rinse, repeat. There will not lather. Don't fret!  This will last you a LONG time! (Shake prior to each use - Baking Soda will settle at the bottom)
Pennies..hear me - Pennies! And, no bad chemicals! Cha-Ching!

http://grist.org/living/glam-locks-the-not-so-secret-secret-to-naturally-gorgeous-hair/

Bottle #2 - Add Apple Cider Vinegar (the good stuff - Bragg's Brand) - 2 Tablespoons and fill the rest with water. Shake until mixed. Apply to hair - let sit for a bit, rinse. This will not be your typical "cream rinse", BUT your hair will be manageable and shiny!
***Do not get in your eyes AND do not use on children!!! Burning is an understatement!

FACE
I love exfoliation and have used "St Ives" since High School. Many Dermatologist will disagree - but, drinking tons of water and great exfoliation makes my face look great! I use this potion about 2 times a week.
This can be used for your entire body - just be careful in the shower - Oil + water= a slippery shower!
I always apply to my hands at the same time as my face - this has worked wonders for my dry hands and cuticles!

Take 2 Tablespoons of Sea Salt and 1 Tablespoon (just enough to wet the salt) of Olive Oil, stir with fingers and apply to entire face (except eyes)..scrub scrub scrub...especially around hair line an nose...I also like going over my lips and chin! I do a really deep scrub for 3-5 minutes, then let it sit - while I do my hands.

FYI - My skin slightly broke out the after the first scrub, I'm convinced it was impurities coming to the surface.

Men - I wouldn't hesitate to use either one of these suggestions! Nothing is sexier  that a man with great hair and skin!


http://www.ehow.com/how_4524261_make-olive-oil-scrub.html

http://www.lovelyish.com/2011/05/15/salt-and-olive-oil-face-scrub/


Try it - trust me - you will be glowing..not to mention - saving that $$$$
-stacey

The Power of 3!

So, I am the first to admit, being a parent  is not easy. For those of you who disagree, you are   A.Lying,   B.Lying or   C. Lying. If you are a parent who does everything you can to promote learning, develop a well rounded off-spring  - then, pray, close your eyes and hope for the best. You are not alone! I was always told that a 2 year old was easier than a teen..whoever said that was right! They are a different being, a unknown character- hugs one minute and rejection the next. And, the best part – this is normal. They are as confused as we are. It was a big deal when I was a kid – but, today it is amplified. Conversations that I was hoping to wait until later, were expedited. I had no choice but to go with the flow and be ready for confrontations at any moment. Every parent has a different method for approaching the “tough” subjects. For me, there was no rehersal. Originally, I had a plan – it looked formal and precise. That idea was tossed out the window when a couple of years ago, Trent informed me that “John told me on the bus, that his sister would have never gotten pregnant if SHE would have used a condom.” EEEEEEK! GASP! Well, after I took a couple deep breaths (and splashed cold water on my face) – I dove right in!  This wasn’t a “dollar menu” convo. This was the Supersized Value Meal – Crap! We addressed a “few” subjects.  It was honest, quick and fact driven. I didn’t sweat, he giggled and we moved on. It opened the door to the matter-of-fact approach and the rule that “nothing is too embarrassed to be discussed”. Well, this is where I am today – almost age 13, ask me next year – when I am sure things will change.

Recently, I took along my preteen on a business trip – It was a great way to spend some one on one time with an underlining motive. The motive was to discuss current social topics – home, school and in our country. It was successful. We also took in awesome movies that produced great dialogue. Sometimes, as parents we just need an icebreaker (kind of like John on the bus) – this time, it was the movie.

The movie opens the door –then, it’s just a simple…Hey, How did you like the movie? Did anything like this ever happen in your world? What would you do different now? Do you have any questions for me?  Trust me; the conversation will just take off. One tip – typically, a movie with mom will get rolled eyes and “your movies are stupid”…I suggest popcorn and lots of candy – it softens the blow!

I have already done the leg work for you…these are fantastic movies for any age. Most importantly, they will promote a discussion between family members, peers and great internal dialogue.

Do not let “special needs” or “disability” changes your thoughts on watching the first 2 suggestions. This is the world that are children are growing up in. Raising children to be culturally aware, culturally educated and the ability to completely accept (regardless of capability and color) is the best gift we can give to them.

1. Including Samuel – less than 1hr

**Inclusion of Special Needs Children in their home and school – and the impact on community.

You can watch it online here –

http://www.cultureunplugged.com/documentary/watch-online/play/8924/Including-Samuel

2. Monica and David-less than 1 hr.

**What does marriage look like? Does a disability matter? Involvement of parents in adult relationships.

Netflix, Amazon

http://www.imdb.com/title/tt1553066/

3. 42 – less than 2 hr.

**The story of Jackie Robinson, wonderful insight into black history, baseball. How far have we come? Acceptance? And, how much further our country needs to go towards equality.

In theatres now!

http://42movie.warnerbros.com/

Don’t forget the extra butter J

Enjoy! I would love your feedback!
-Stacey

Storage Tote Intervention!

I’m alive! Barely…super busy with work recently…lots of changes going on around these parts! I am one step closer to starting my new job and a wonderful (and unexpected) turn in my career path. Unexpected turns are great…a good idea for a blog sometime!

So I have only a few more weeks before I am a full time working mom again…eeeeek! So, I am frantically organizing and stocking up on the essentials – as I know that the initial transition will be a bit bumpy. Hoping that preparing on the front-end will bring less stress on the home front. I have kicked it in high gear and decided that once again, I would share purging tips!

By means of full disclosure, I own storage totes…probably 6. I am going to store some of Chases Medical Records, so another is needed. This blog is for all of the addicted Toter's out there. STOP! Stop finding boxes and storage containers and more crap to “organize”. Trust me, you will rarely go back and look in some of them. I have a tote for Christmas, a (yes ..one!) for baby memorabilia from the kids, a Stacey  tote (yearbooks, old school pics, etc), Chase’s “too big” clothes, and a couple for misc. holiday décor. That. Is. It. Honestly, my old stuff probably could go – but keeping it for my kids could offer some great memories.

As I have said before, I am not sentimental, so these projects are easy for me. I like keeping the top 5-10 items from childhood, not everything. So, for those of you who find meaning in everything – you may want to obtain therapy before reading any further! As I have mentioned before, our families items (95%) are CHEAP, very CHEAP. I find great deals! When you spend less on an item you don’t feel so obligated to it! I remember spending $300 for a bed spread ensemble in 1998 – that I used for 5 years because (back then) it was so much $$$. Now, I spend less, and there is not as much attachment!

I hear over and over…”I wish I had time to Organize”, “I neeeeeeed to get rid of stuff, but I can’t”.  Mind you, I am a busy mother – It is non-stop around this joint from dawn to dusk. But, I always have time to eliminate! So, here is the Cliff Notes version getting rid of your Crap – the 5 Minute Purge!

Typically, by the end of each week, I have 1-2 bags (trash bags) for donation and 1-2 bags of purged items. I have a small family – this is easily done and simple. For me, it is sanity. It clears my mind. Makes cleaning a snap! And, best of all  -I know where EVERYTHING is!

So, get your supplies – a garbage sack and a trash can and pick a spot!

For example, this morning I was watching the news – Chase was playing and I spent 10 minutes and got 2 spaces done – the Bathroom and the Bedroom.

When cleaning my closet, which I do a couple times a month, I eliminate what I don’t like, What doesn’t fit and what is out of style – my closet is small – this takes 3-5 minutes. Bathroom – I eliminate expired meds, old makeup (or colors I don’t like), frayed towels, cleaning supplies, etc. Today I got a entire trash bag – no joke!

I pick a space each day. Kids rooms, Entertainment center (old movies), Toys, Kitchen Cabinets, Refrigerator, Etc. I highly suggest at the end of each holiday- purging before you put away. I always end up with more Christmas décor than what I need.  Trust me, this is easy and painless.

By the end of the week, I simply drop off what I don’t need at the local DAV Thrift store and get a 25% off coupon for my next shopping trip.

Some families choose to have garage sales – as much as I love attending these sales – storing the items prior to the sale, gives me a heart attack. Clutter seriously stresses me out (obviously). Some families choose to attend the “kids consignment” sales – these are way too much work for my liking!  I like a simple purge, and a simple donation. For items that have value, I have good luck with Craigslist and Facebook Groups. Although, recently, I found it was more work tracking down the seller and gas to deliver my item proved not to be profitable.

Find what works for your family. Buy only what you love. Spend less. Save more. I recently went into Coldwater Creek, love that place. However, I started sweating (really) while looking at the Clearance (the only section I shop). A tank top was $39 with 50% off. HUH?? $20 for a tank. I had to do deep breathing. I spend $20-$40 per month on clothes for my entire family. I do splurge on shoes or a good bra. But, rarely!

Try it for a week. Don’t ponder an item. Move Quick. Often, I will drop off a donation and forget what I brought. We are such a materialistic society, when we enjoy the items we do have – there is a much greater appreciation!

Other Great Ideas:

http://www.31daystodeclutter.com/purging-rules

http://www.rantsfrommommyland.com/2011/01/five-helpful-tips-for-purging-crap.html

And here is to a "Clutter Free" Life!

-stacey