The road we follow to gain weight...

As we begin week 3 of Jace’s blenderized diet, I realized that he was beginning to lose precious weight that he just cannot afford to lose at the end of week 2. It is nevertheless shocking that whole foods cannot battle the high fructose corn syrup that his previous diet was filled with.  A simple boost in some extra calories will hopefully do the trick. I plunged into finally blending up an avocado into his dinners along with toddler meat sticks and was given the suggestion of trying out carnation instant breakfast for some extra calories plus other boosts such as olive oil. Added bonus: saying goodbye to overnight feeds! That may seem like a small inconvenience to overcome,  however; overnight feeds have led to less inconsistent sleeping patterns, waking up to his pump beeping (low battery), the connection tube becoming disconnected which resulted in milk everywhere, middle of the night baths to clean up Jace, changing his bedding and having to get him back to bed. Although it happened only every once in a while, that is just one more worry that is just unnecessary…who eats when they sleep? 

Starting a blended diet!

It's been a while since we last thought of starting up a blended diet, despite the research, pulling recipes, weighing the pros and cons and worrying about the what if's. Thankfully, Jace's speech therapist introduced me via email to another parent that does BDs (blenderized diet) and all it took was hearing why don't you just go for it...and Jace is going strong tolerating 10 days of pureed baby foods and less pediasure! Soon enough, I will be able to purchase a vitamix and blend whole foods into a puree blend so that Jace can have breakfast, lunch and dinner along with a few snacks on a regular schedule. Overnight feeds are gone! Ideally, I do not want to keep blending up baby foods for too much longer, how great will it be to just blend up the same dinner everyone else is eating and to include Jace as part of our dinners, to really include him. So far, so good. He is enjoying peach/banana smoothies with rice cereal, a little touch of cinnamon and still needing a little pediasure (along with water to make sure its thinned out enough) for breakfast. His lunch is a can of pediasure (will be adding another food to this soon). He's tolerating mac and cheese with peas, a tablespoon of olive oil and a dash of salt for his early dinner and often has chicken, turkey or ham for din din, which I add a variety of other foods and calorie boosters to as well. I purchased a book called Complete Tubefeeding which contains everything I need to know along with some recipes as well. One of the most important things I have learned is that with just about everyone has unique needs and there is not a one size fits all for blenderized diets...and as a parent who is used to being told what to feed my child, having this sudden freedom to feed him as any 6 year old boy should be, is exciting! Now, instead of telling  him its time to eat, I talk about what he is eating. It is definitely a step in the right direction and I look forward to having a vitamix and providing Jace with a more balanced diet!

Therapy News!

Jace has successfully completed week one of his sixth intensive physical therapy session! 25 hours of physical therapy in just one week and 50 more hours to go over the next two. He is simply amazing!

You have taught me...

You have taught me patience
to rejoice in small gains which others take for granted.

You have taught me tolerance
to accept that your perspective is different and deserves respect.

You have taught me courage
to fight for you when no one else will.

You have taught me endurance
to go on when I feel I can’t anymore.

You have taught me humility
to accept when I can’t make things better

but can only be here for you.

You have taught me to love at a deeper level
than I ever thought possible.

A Poem Worth Sharing

You may think us “special moms” have it pretty rough.
We have no choice. We just manage life when things get really tough.
We’ve made it through the days we thought we’d never make it through.
We’ve even impressed our own selves with all that we can do.

We’ve gained patience beyond measure, love we never dreamed of giving.
We worry about the future but know this “special” life’s worth living.
We have bad days and hurt sometimes, but we hold our heads up high.
We feel joy and pride and thankfulness more often than we cry.

For our kids, we aren’t just supermoms. No, we do so much more.
We are cheerleaders, nurses and therapists who don’t walk out the door.
We handle rude remarks and unkind stares with dignity and grace.
Even though the pain they bring cannot be erased.

Therapies and treatment routes are a lot for us to digest.
We don’t know what the future holds but give our kids our best.
None of us can be replaced, so we don’t get many breaks.
It wears us out, but to help our kids, we’ll do whatever it takes.

We are selfless, not by choice, you see. Our kids just have more needs.
We’re not out to change the world, but want to plant some seeds.
We want our kids accepted. That really is our aim.
When we look at them we just see kids. We hope you’ll do the same.

~April Vernon

Reflections

2011 brought another great year for this amazing little boy. After much hard work and repeated tries, he finally received his very own hart walker. Something that I had learned about from his fabulous OT a few years ago which additionally brought Jace into the intensive therapy program. His amazing feeding team helped pave the path to help Jace qualify for his own Ipad which is leading to more therapy opportunities as we will start 2012 by adding private speech and additional OT into his schedule. I am ecstatic for this amazing child to finally have an opportunity to communicate! A blended diet is still in the works but knowing that this just is not an overnight transition and will take some time to adjust, so for now, it is a plan to look forward to in the coming year. One of the greatest transitions was watching Jace enter Kindergarten, he has an awesome new team and the most incredible teacher. Every school day, he is excited, even on the days he is tired, as soon as he knows he is going to school, the most incredible smile spreads on his face. He is surrounded in an environment that seems to have been made especially for him, it is perfect. We have started the work towards getting Jace a new wheel chair, and are working towards his first tricycle. As Jace has taught me right from the start, impossible really means "I am possible"...and so when I reflect on the things I never imagined him doing so many years ago, I now know that he will have the same opportunities with the right equipment. We will be ringing in the new year together this year and maybe he will even do a little dance in his hart walker...you just never know with this kiddo!

I am the Child

I Am The Child
I am the child who cannot talk. You often pity me; I see it in your eyes. You wonder how much I am aware of — I see that as well. I am aware  — whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me.  You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I give you instead opportunities to discover the depth of your character, the depth of your love, your commitment, your patience. I am the child who cannot talk.

I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. I want the toys on the shelf, I need to go to the bathroom, oh I’ve dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I give you awareness. I am the child who cannot walk.

I am the child who is mentally impaired. I don’t learn easily, if you judge me by the world’s measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife’s and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.

I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.