Shoes --- Had to Share!

****I wouldn't trade my shoes for anything!  ~Ginny


I am wearing a pair of shoes. They aren't pretty shoes… uncomfortable shoes. Each day I wear them. Each day I wish they'd feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. Yet, I continue to wear them and continue my journey....I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes.... To learn how painful my shoes are might make them uncomfortable. To truly understand these shoes one must walk in them. But, once you put them on, you can never take them off.

...I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No Mom deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a Mom who has a child(ren) with special needs. I will forever walk in these shoes. ~ Unknown

Giving This Another Try!

     Wow!  I can't believe how long it has been since I have written a post.  I agreed to do some long term subbing 2 and 1/2 years ago, and it seems I am just now getting a break.  It's really pretty conflicting... after all the time I have spent full time in a classroom over the past 2 and 1/2 years I have come to realize how much I truly miss teaching.   However, I have also come to realize just how much I can not go back to teaching full time.  Teaching is truly a calling for me (at least the actual teaching part, not the politics part), and it gives me back a part of my identity that I feel I have lost since I have become a mother.  However, when I am teaching I feel and know that I am not giving my own children (and husband) everything they deserve.  Yes, my eos child gets the food he needs, my learning disabled child gets the help on her homework she needs, and my husband gets his needs met as well, but none of them get the total attention they deserve.  My typical working day schedule goes something like this:
5:30 am -  wake up and get ready for work
5:50 am - wake up Andrew for school
6:20 am - Andrew and I leave for school
7:15 am - 1st bell rings
7:45 am - late bell rings
2:45 pm - home bell rings
5:00 pm - go home
5:00 - 6:00 - help Maddie with homework
6:00 - prepare our meal and Andrew's meal
6:30 (depending on the day take children to various activities--horseback riding, volleyball, basketball, Science Olympiad, etc)
7:30 - leave to pick child up
7:50 - continue helping Maddie with homework
8:00 - put Andrew to bed, then continue to help Madison
10:00 - put Madison to bed
10:00pm - 12:00am - do my school work
So by the end of the day I am exhausted, not to mention the weekends in which I spend working.  Although the extra money is nice and really helps when it comes to paying for Andrew's neocate splash (doesn't insurance stink!), my family is always happy when I stop working and am back at home. 
    So, anyway, now that I am done for a while, I would like to get this blog back up and running.  My learning disabled child is now in 7th grade and is navigating her way through middle school (quite well actually) and my eos child now has 6 safe foods and is trialing venison.  Some things change and some things not so much!
    Stay tuned for my next posts that I am researching:  Esophageal String Test in lieu of Endoscopy/Biopsy for diagnosing and monitoring EoE and Learning Disabled Students and Preparing for End of Grade Testing.  Boy....it feels good to be back!

May 13 – May 19 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…

Think about food…how many times you eat each day, how much you enjoy the smell as it is being prepared, the anticipation of a favorite meal or going out to a restaurant, the flavor of your favorite food when it touches your tongue, your morning cup of coffee, the sense of togetherness you enjoy when you share a meal with family or close friends, the excitement you or child gets when they see and then bite into their birthday cake, holiday meals with loved ones, taking a spontaneous trip to the ice cream parlor with someone special on a hot summer day…and the list goes on. There are so many ways we enjoy food as an individual and as a sense of community. Now, imagine being told that you can no longer eat food. You have to receive all of your nutrients from an amino acid formula that contains no whole or partial proteins. A formula, I might add, that is so unpalatable that most children that have to be on it have to take it through a feeding tube. Imagine you have to do this because the food that is supposed to sustain you and keep you healthy, makes you extremely sick.

This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EoE). EoE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EoE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EoE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him/her well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.

At present, even with the rapid increase in prevalence of EGIDs, there is little public funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.

If you would like to learn more or make a donation in Andrew’s name, go to

http//:www.apfed.org/

If you would like to participate in National Eos Awareness Week here are some things you can do (However, if you feel that you can not do any of the following suggestions, just by making one more person aware of Eosinophilic Diseases you are helping our cause):

Wednesday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.
Thurday, May 17: Wear hot pink and purple (the color of eosinohils on biopsy slides) and hand out dum dum suckers to your friends and coworkers. Many kids with Eos Disorders can not eat anything with food proteins. However, dum dums are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Friday, May 18:“Eat like Andrew for a Day Challenge”. Andrew began trialing food in October of 2010. He has tried a total of 16 foods. We know he has failed 11 and is now eating 5. He is not currently in remission. We have taken out the last food he was trialing. He will scoped on again on June 14 and we hope he will once again be in remission. The elemental formula is still his main source of nutrition. However, if you would like to try to eat like my Andrew for a day, his foods are sweet potato, lite canned peaches, pinto beans (the ingredients can only be pinto beans, salt and water—I have to make the dried beans), lamb and grapefruit. He can have salt and sugar, but no other seasonings or flavor. You may only drink water, nothing else. Be sure you read every word of every label, and there is no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances. Then, take a few moments to let Andrew know, either on here or a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” Challenge went for you.

Saturday, May 19: Please send letters to your congressmen reminding them that this is National Eos Awareness Week.

Thank you for your time.

Ginny and Greg Barton

Special Needs: 3 Emotions it's Okay for Moms to Feel | iMOM

First of all, I need to once again apologize for my lack of posts on this site.  For a year and a half I had agreed to a full time substitue teaching position.  Between that and parenting my two children with special needs, I literally had very little time for anything else, but to remember to breathe.  Because of this, I find the article that I am posting about even more relevent.

Below is an article, Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM, from the blog iMOM that I feel is a must read for all parents with children of special needs.  We, as parents of these children, often expect more from ourselves than those of children without special needs.  As the article states, there is an added layer of complexity to being a parent of our children.  Please read the article to find out more about the 3 emotions we are ALLOWED, and have every right, to feel:  tired, discouraged and sad, but more importantly, some tips to help us through those emotions.

Special Needs: 3 Emotions it's Okay for Moms to Feel iMOM

National Eosinophil Awareness Week - Day 3

Today Andrew and I wore our Eos T-shirts to school.  We also passed out dum dum lollipops to help spread awareness for these disorders.  I was pleased when several teachers asked me what my shirt said and I had the opportunity to educate them, if even just a little, on EGIDs.  The student's in Andrew's classroom (and mine as well) were full of questions.  I continue to be proud of how well Andrew handles his disease and now of the advocate he is becoming.  It is so very important for the people that are suffering from this disease that awareness is spread.  Please take time to write to your congress person tomorrow to remind them that this is National Eosinophilic Awareness Week.

Thank you to everyone that continues to support us!

This is a video put together by another Eos family.

Just......Imagine a Cure!!

National Eosinophil Awareness Week - Day 2

Today is the second day of National Eosinophil Awareness Week.  My goal was to post something each day no matter how busy I was.  I have already missed my goal, but I am going to work hard to obtain it for the rest of the week.

I feel it fitting to start this post with an update on Andrew's status.  Andrew began food after 9 months of an elemental diet last fall.  He has failed 4 trials by symptoms and had "passed" peaches and sweet potatoes with 12 eos per high power field in January.  On May 5 he had another endoscopy with biopsies after trialing pinto beans and grapefruit.  To our delight, the results were the best he has ever had...0-1 eos per high power field in all three sections of the esophagus.  For a child who at one time has had so many eos that the pathologist could not count them on the biospsy slide, this is truly amazing. Actual remission, even if he is on 60mg of prevacid and flovent each day.  What a way for us to prepare for National Eos Week!  And Andrew was able to celebrate by adding Lamb to his diet.  I wish I could have captured the pure joy on his face while eating that lamb chop so that when he is in the hospital or in pain I could take it out, look at it and remember there will be more days like this. 

Please help spread awareness for this frustrating disease so that the children and adults suffering can someday enjoy lives normally once again.  People who suffer from eosinophilic disorders can not tolerate food proteins.  Many of them that are on elemental diets can only eat dum dum lollipops.  Although they are not yet safe for Andrew, he will still be passing them out to spread awareness tomorrow.  Won't you join him?

Just a Glimpse

Video by APFED

Join Us For Eosinophil Awareness Week

May 13 – May 19 is National Eosinophil Awareness Week. What is that you may ask? My son suffers from the most common Eosinophilic Gastrointestinal Disorder (EGID), Eosinophilic Esophagitis (EE). I will try to paint you a picture…

Think about food…how many times you eat each day, how much you enjoy the smell as it is being prepared, the anticipation of a favorite meal or going out to a restaurant, the flavor of your favorite food when it touches your tongue, your morning cup of coffee, the sense of togetherness you enjoy when you share a meal with family or close friends, the excitement you or child gets when they see and then bite into their birthday cake, holiday meals with loved ones, taking a spontaneous trip to the ice cream parlor with someone special on a hot summer day…and the list goes on. There are so many ways we enjoy food as an individual and as a sense of community. Now, imagine being told that you can no longer eat food. You have to receive all of your nutrients from an amino acid formula that contains no whole or partial proteins. A formula, I might add, that is so unpalatable that most children that have to be on it have to take it through a feeding tube. Imagine you have to do this because the food that is supposed to sustain you and keep you healthy, makes you extremely sick.

This is how my son and many other children with Eosinophilic Disorders live their lives each day. My son suffers from Eosinophilic Esophagitis (EoE). EoE is characterized by inflammation of the esophagus with an abnormal number of eosinophils. An eosinophil is a type of white blood cell associated with allergies, parasites and cancers. In my son’s case the elevated levels are caused by food and possibly environmental allergies. Symptoms vary by case, but my son started off with reflux that did not get better with medication and chronic stomach pain. As time went on he had chest pain, throat pain, regurgitation 20-40 times a day, and vomiting after eating. He also has had chronic sinus infections since he was an infant and continues to suffer from croup during winter months.

EGIDs are considered rare diseases, but are on the rise. According to an article, “Looking Back on 2009” by Wendy Book, MD in EOSolutions Winter 2009, [the apfed (American Partnership for Eosinophilic Disorders) newsletter], a recent study estimates 158,700 people suffer from EoE and 85,000 people suffer from eosinophilic gastroenteritis and colitis (EG-EC). Also stated in EOSolutions, EoE has now been recognized as one of the most common causes of food impaction and difficulty swallowing in adults. Even so, these diseases often go misdiagnosed or mistreated for years due to lack of in depth knowledge of the disease by many doctors and specialists. There is no cure for these diseases, and they require ongoing treatment, management and procedures. The only way to test for and monitor them is by performing endoscopies with biopsies. Many patients are forced to travel hundreds of miles to a facility that specializes in eosinophilic disorders to ensure proper treatment. Therapies include food elimination diets, elemental formula diets and/or medications such as steroids and/or PPI’s. Many families, after getting proper care realize that they can’t treat their child with the one thing that will make him/her well (elemental formula), because most insurance companies don’t cover it, and the monthly cost can be close to many people’s mortgage payments.
At present, even with the rapid increase in prevalence of EGIDs, there is little public funding for Eosinophilic Disorders. It is of utmost importance that doctors and scientists are afforded the funding they need for important research that can lead to better lives for the many people and families affected by this disease. I know my son would enjoy being able to blow out candles on a real birthday cake one day, not one made of boxes, but this will only be possible through research that will help find a cure.
If you would like to learn more or make a donation in Andrew’s name, go to

http//:www.apfed.org/

If you would like to participate in National Eos Awareness Week here are some things you can do (However, if you feel that you can not do any of the following suggestions, just by making one more person aware of Eosinophilic Diseases you are helping our cause):

Wednesday, May 16: Send out mass emails to your friends and/or post on Facebook linking the above sites. Feel free to share any information from above.

Thurday, May 17: Wear hot pink and purple (the color of eosinohils on biopsy slides) and hand out dum dum suckers to your friends and coworkers. Many kids with Eos Disorders can not eat anything with food proteins. However, dum dums are safe because they only contain sugar and artificial ingredients. For many kids, this is their only safe food other than elemental formula.

Friday, May 18:“Eat like Andrew for a Day Challenge”. Andrew began trialing food in October of 2010. He has tried a total of 16 foods. We know he has failed 11 and is now eating 5. He is not currently in remission.  We have taken out the last food he was trialing.  He will scoped on again on June 14 and we hope he will once again be in remission. The elemental formula is still his main source of nutrition. However, if you would like to try to eat like my Andrew for a day, his foods are sweet potato, lite canned peaches, pinto beans (the ingredients can only be pinto beans, salt and water—I have to make the dried beans), lamb and grapefruit. He can have salt and sugar, but no other seasonings or flavor. You may only drink water, nothing else. Be sure you read every word of every label, and there is no way you can eat out in any restaurant due to cross contamination. The slightest trace could make Andrew very ill, so don’t take any chances.  Then, take a few moments to let Andrew know, either on here or a comment on my blog (eeldkids.blogspot.com), how the “Eat Like Andrew for a Day” Challenge went for you.

Saturday, May 19: Please send letters to your congressmen reminding them that this is National Eos Awareness Week.
Thank you for your time.

Ginny and Greg Barton