Eosinophilic Night Before Christmas

 

Eosinophilic Disease Awareness

Eosinophilic Disease Awareness

EGID Night Before Christmas
‘Twas the night before Christmas, when all through the house
The pump was a whirring, and waking the mouse;
His feeding bag was hung by his bed with care,
In hopes that some nutrition soon would be there;
The children were nestled all snug in their beds,
While visions of eating real food danced in their heads;
G and NG Tubes, each with their caps,
If they’re open, they’ll leak and disturb my kid’s long winter’s nap;
When the pump started beeping, there arose such a clatter,
I sprang from my bed to see what was the matter.
Away to his side, I flew like a flash, Tore open the covers – saw a kinked line and a rash….
I think of the time that he could eat food.
When people didn’t judge us, some are just rude.
The cakes, cookies, and foods that he cannot eat.
The dream of giving my boy just one food treat,
Has vanished and won’t come back very quick,
No one can cure it, not even St. Nick.
More rapid than lightning the vomiting came,
Eosinophils cause this disease, EGID is the name.
In Greenville, Colorado, Pittsburgh, and Philly!
In Boston, in Texas, in Florida, in Cincinnati!
They work on research, so our kids can grow tall!
Now find a cure today! Please we pray! Work together all!
Dreams of having a typical childhood away fly,
Because of this disease, our children must cry.
Vomiting, pain, diarrhea, and choking,
ulcers, fatigue, another doctor-are you joking?
Enemas, laxatives, surgeries, scopes,
Steroids, tests, biopsies, IVs-yet our kids have hope!
Just when you think this disease has calmed down,
Our kids are faced with another re-bound.
Insurance won’t pay for his special food,
We must fight for everything, we hate to be rude;
A pump and some formula flung on his back,
And another day goes by with him wearing his pack.
His eyes — how they twinkle! His laughter– how merry!
He cannot take even one taste of dairy!
Just a little bit of food he can’t chew with his teeth,
We must steal food away from him like a thief.
One or two safe foods, we learn to cook.
Expensive food stores, all of our money, they took.
Someday he’ll be chubby and plump, like a jolly little elf,
And I’ll laugh when I see him, in spite of myself;
Until then, we all will continue to fight…..
“Merry Christmas to all, and to all a good-night.”

© 2011 Cara Koscinski

By- Cara Koscinski MOT, OTR/L

Mom to two children with Eosiophilic Diseases.  Her younger son is GJ tube fed with only two safe foods by mouth. Author of The Pocket Occupational Therapist– a handbook for caregivers of children with special needs. Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child. Order anywhere books are sold. http://www.pocketot.com

GO Out of Your Comfort Zone

Self-LoveAs many of my readers know, I’m the mother to two children with autism spectrum disorders and to complicate things even more, my younger son has a terrible rare disease which renders him un-able to eat food by mouth. He must be strictly fed by a tube in his stomach to live. I can presume that no little girl dreams of this life I’m living when thinking about her future-I surely did NOT. Yet, I am extremely thankful for my children and the life I’ve been blessed with.

At one of my son’s countless numbers of psychology appointments yesterday, I was struck by something the doctor said. “We cannot grow or experience the beauty of things unless we travel out of our comfort zone.” I was immediately speechless (which does not happen often ;)). He was encouraging my son to work on eating fruits and veggies for a more healthy diet but I got MUCH MORE from his statement.

How many times in your life have you dreaded going to this or that event out of the fear of the unknown? Usually what happens is you attend the event and have a wonderful time and are thankful you went to experience something new. In fact, to learn and grow we must all move a bit out of our comfort zone. Think of a baby as he learns to sit up. He has not tried it before and he most likely will fall, yet he knows no fear and tries anyway. Our bodies are hard-wired to try new experiences from the time we are born. This is how we grow and develop new skills that we will build upon for a lifetime. Reflexes gradually disappear and we innately learn to rely on those skills we have acquired. With each success comes confidence to try again, and then we become skilled.

In my book, The Pocket Occupational Therapist, I provide many ways to help children to learn skills needed for daily living. Children with special needs may need a little more encouragement to learn new skills. We need to adapt the activity for them to achieve small successes so that they may build up the confidence to try again and again. It is through this process that skills are learned. When we fail (or our child fails) it is natural for us not to want to repeat the experience. Therefore, it is our job as parents and therapists to help to facilitate successes. However, we cannot truly understand what this means until we take a good look at our own willingness to try new things. Self-evaluation is important to grow and learn. It has been said by Socrates that “the un-examined life is not worth living.” This is quite drastic, yet rings true for us. We should constantly be examining ourselves and our ability to learn from our own experiences and from our children to grow as parents, therapists, teachers.

When we understand that we do not like to fail and sometimes need a little more encouragement to achieve our goals-big or small-we are more likely to succeed. Let’s take a look at ourselves as teachers and step out of our comfort zone. Go for it!
By- Cara Koscinki MOT, OTR/L

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs. Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child. Order anywhere books are sold. www.pocketot.com

Developing Skills Through PLAY

Playground FUN

Playground FUN

Occupational therapists are fortunate enough to be a critical part of the treatment team for children with special needs. Any difficulties children may face as a result of having a developmental delay should be addressed by incorporating play into their daily routine. While working with the adult population, occupational therapists focus on remediating skills for daily living and for work related tasks. When assessing the skills of children, the therapist must look at the child’s play skills. After all, when children are not asleep they are learning about their environment through the various play activities they engage in during their day. Even completing the tasks of building blocks, completing a puzzle, and drawing pictures will yield skills that the child will use throughout his lifetime.

The skills, developmental stages, and all activities listed in this blog post can be found in our book The Pocket Occupational Therapist for caregivers of families with special needs. It’s PACKED with easy to read ideas and is like having your OT with you all of the time! Can be purchased on Amazon or anywhere books are sold.

When caregivers attend occupational therapy sessions, most inevitably ask, “Why does it look like you are playing during the session? How is this therapy?” The occupational therapist should explain therapy goals and how she will work to achieve them during the course of therapy. It is important for caregivers to feel comfortable asking questions about activities to complete at home to help to facilitate therapy progress. Most caregivers want to help their child to achieve his goals and are willing to participate if given the chance. It is by asking questions and through home programs given by the therapist that caregivers can be key partners in a child’s success on building skills that will propel him through his lifetime.

The most important thing to remember when working with your child at home is to begin at a level where he can be successful. Each success will help to build his confidence. No one wants to fail at a task and oftentimes, a child with special needs may lack the confidence to re-try something at which he has previously failed. Be sure to watch your child as he plays to determine which activities he prefers. For example, note if he prefers to engage in messy play or dry play. Does he enjoy colors, shapes, letters, or numbers? When seeking items for your home play time, be sure to remember his favorite color or movie character. His excitement will help him to have fun while learning.

Fine-motor coordination involves tasks of the hands and fingers such as holding a writing utensil, using a fork, buttoning, and shoe-tying. It is a good idea to help your child to strengthen his fingers for these tasks. Set up activities that you know he will enjoy and have success with. here are many different types of dough recipes that can be found on the internet. Make some dough and add his favorite color to it with a small amount of food coloring or add glitter. Mix two different colors of dough together and see what colors you can make. The addition of different scented oils can heighten the activity to a new sensory level. Peppermint and vanilla oils are commonly found at the grocery store. Note which scents your child prefers.

Most children love to open and close things. Be sure to save containers of all shapes and sizes. After cleaning them out, place a special prize inside. Ask your child to open each and find the prize. Prizes can be food, pom-poms, treats, or anything that will be motivating for him. Cut a slit in the top of the lid and ask him to put coins or bingo chips inside the container. This will give him the opportunity to develop good coordination skills. Also, use different eye-droppers or a turkey baster to transfer colored water from cup to cup. Switch from hand to hand or have a race to see who can fill the cup up first.

Gross-motor coordination and building up a strong core muscle system will be key factors in determining success with future activities such as bicycle riding, hopping, and playing sports in the future. Even when children are infants, supervised tummy time is important to help muscles work against gravity. Place a motivating object near baby so that he has to lift his head to see it. Use lots of praise and encouragement. To help develop core muscle strength as children get older, it is important to revisit tummy time. Ask your child to watch a small portion of his favorite television show while lying on his belly. As he gets stronger build up the time. Pretending to be animals like snakes crawling in the grasslands is a fun game for older kids.

Crawling is a stage often missed by children with developmental delays. The act of crawling helps to strengthens muscles, works to help to integrate the sensory system, and develops coordination of the arms and legs. Often, we need to give extra help to learn to navigate their bodies in the quadruped, or crawling, position. We can get down on the floor with our children and crawl together through mazes made of cushions; under tables; and along paths taped with masking tape. Make sure to encourage fun so that your child doesn’t realize he’s working on skills that may be difficult for him. Allow him to rest when he needs to.

Oral-motor skills are critical to eating, drinking, and speech. Often times the local thrift store is full of affordable tools for building strength in the muscles of the mouth. Straws of different shapes and diameters should be used for drinking or blowing bubbles into a pan of water. Have races by blowing cotton balls and other light items off of the table. The use of age-appropriate whistles is a fun way to get immediate reward as the child learns to produce sounds by blowing. Place whipped crème onto the child’s lips and ask him to look into a mirror and use his tongue to lick it all off. This will help him to strengthen the tongue muscles and become more aware of its movements. Try it with him and have a race. Use different tastes and textures such as chocolate syrup.

As you think about your child, keep in mind that he is a child first and he learns critical skills through playing. It will benefit him many fold if you provide him with opportunities to work on his areas of weaknesses while he has fun doing so. Don’t be afraid, your child is happy spending time with you!

By- Cara Koscinki MOT, OTR/L

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs. Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child. Order anywhere books are sold. www.pocketot.com

Eosinophilic Night Before Christmas

Eos Night Before Christmas

          ©Cara Koscinski

  ‘Twas the night before Christmas, when all through the house     

The pump was a whirring, and waking the mouse;

His feeding bag was hung by his bed with care,

In hopes that some nutrition soon would be there;

The children were nestled all snug in their beds,

While visions of eating real food danced in their heads;

G and NG Tubes, each with their caps,

If they’re open, they’ll leak and disturb my kid’s long winter’s  nap;

When the pump started beeping, there arose such a clatter,

I sprang from my bed to see what was the matter.

Away to his side, I flew like a flash, Tore open the covers – saw a kinked line and a rash….

I think of the time that he could eat food.

When people didn’t judge us, some are just rude.

The cakes, cookies, and foods that he cannot eat.

The dream of giving my boy just one food treat,

Has vanished and won’t come back very quick,

No one can cure it, not even St. Nick.

More rapid than lightning the vomiting came,

Eosinophils cause this disease, EGID is the name.

In Greenville, Colorado, Pittsburgh, and Philly!

In Boston, in Texas, in Florida, in Cincinnati!

They work on research, so our kids can grow tall!

Now find a cure today! Please we pray!  Work together all!

Dreams of having a typical childhood away fly,

Because of this disease, our children must cry.

Vomiting, pain, diarrhea, and choking,

ulcers, fatigue, another doctor-are you joking?

Enemas, laxatives, surgeries, scopes,

Steroids, tests, biopsies, IVs-yet our kids have hope!

Just when you think this disease has calmed down,

Our kids are faced with another re-bound.

Insurance won’t pay for his special food,

We must fight for everything, we hate to be rude;

A pump and some formula flung on his back,

And another day goes by with him wearing his pack.

His eyes — how they twinkle! His laughter– how merry!

He cannot take even one taste of dairy!

Just a little bit of food he can’t chew with his teeth,

We must steal food away from him like a thief.

One or two safe foods, we learn to cook.

Expensive food stores, all of our money, they took.

Someday he’ll be chubby and plump, like a jolly little elf,

And I’ll laugh when I see him, in spite of myself;

Until then, we all will continue to fight…..

“Merry Christmas to all, and to all a good-night.”

© 2011  Shared with permission

Thanksgiving Thanks from Tom Turkey

This Thanksgiving is another special one.  We are blessed to have our family together.  We are blessed that our children have a special nutrition to drink/be fed that is safe and totally hypoallergenic.  Tom the Turkey is especially happy that we saved him this year.  We won’t be purchasing a turkey because our children are both allergic to it.  I’m not opposed to eating turkey and plan on joining our friend’s family for the holiday. But, in our home the smell of g-tube food and Dum-Dum lollipops will prevail.

We are thankful for each precious moment with our children.  It’s not easy to raise children and is even more difficult when they have special needs.  God has blessed us with the opportunity to learn how to use sign language, feeding tube, PECS, and behavior charts.  We have met wonderful therapists, friends, and other parents who have children like ours.  Facebook and blogging have brought us even more helpful connections.  Indeed, we have MUCH to be thankful for.

HAPPY THANKSGIVING from Route2Greatness to your family!!

By- Cara Koscinki MOT, OTR/L 

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs.  Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child.  Order anywhere books are sold.  www.pocketot.com 

A Life Without Food, Joshie’s Story

Please watch and share this video we made to raise awareness for food allergies and EE (Eosinophilic Esophagitis).  This week is feeding tube awareness week and there are many reasons why someone may need a tube.  This is Joshua’s story….Thank you for your support!

Visit APFED (American Partnership for Eosiniphilic for Eosinophilic Disorders)

www.apfed.org  for more information on EE.

By- Cara Koscinki MOT, OTR/L 

Author of The Pocket Occupational Therapist- a handbook for caregivers of children with special needs.  Questions and answers most frequently asked to OTs with easy to understand answers and fun activities you can do with your child.  Order anywhere books are sold.  www.pocketot.com 

Eos Night Before Christmas

 Eos Night Before Christmas

          ©Cara Koscinski

 

  ‘Twas the night before Christmas, when all through the house
     The pump was a whirring, and waking the mouse;

 
His feeding bag was hung by his bed with care,
In hopes that some nutrition soon would be there;

The children were nestled all snug in their beds,
While visions of eating real food danced in their heads;

 G and NG Tubes, each with their caps,
If they’re open, they’ll leak and disturb my kid’s long winter’s  nap;

When the pump started beeping, there arose such a clatter,
I sprang from my bed to see what was the matter.

Away to his side, I flew like a flash,
Tore open the covers – saw a kinked line and a rash….

I think of the time that he could eat food.
When people didn’t judge us, some are just rude.

The cakes, cookies, and foods that he cannot eat.
The dream of giving my boy just one food treat,

Has vanished and won’t come back very quick,
No one can cure it, not even St. Nick.

More rapid than lightning the vomiting came,
Eosinophils cause this disease, EGID is the name.

In Greenville, Colorado, Pittsburgh, and Philly!
In Boston, in Texas, in Florida, in Cincinnati!

They work on research, so our kids can grow tall!
Now find a cure today! Please we pray!  Work together all!

Dreams of having a typical childhood away fly,
Because of this disease, our children must cry. 

 Vomiting, pain, diarrhea, and choking,
ulcers, fatigue, another doctor-are you joking?

Enemas, laxatives, surgeries, scopes,
Steroids, tests, biopsies, IVs-yet our kids have hope!

Just when you think this disease has calmed down,
Our kids are faced with another re-bound.

Insurance won’t pay for his special food,
We must fight for everything, we hate to be rude;

A pump and some formula flung on his back,
And another day goes by with him wearing his pack.

His eyes — how they twinkle! His laughter– how merry!
He cannot take even one taste of dairy!

Just a little bit of food he can’t chew with his teeth,
We must steal food away from him like a thief.

One or two safe foods, we learn to cook.
Expensive food stores, all of our money, they took.

Someday he’ll be chubby and plump, like a jolly little elf,
And I’ll laugh when I see him, in spite of myself;

Until then, we all will continue to fight…..

“Merry Christmas to all, and to all a good-night.”

 © 2011  Shared with permission