Eli's Chipin

I have been working with a group on Facebook called Uniquely Gifted. They have suggested starting a Chipin page for Eli to do some fundraising. After really thinking it over, I thought I'd go ahead and give it a try! So here it is!!

Playing catch up....

Hey Everyone! Sorry it has been a while since my last post! I have gotten a new job! I am the new Family Advocate for the Children's Advocacy Center of the South Plains here in Lubbock. I was a therapist for them for the past year and a half. Since I graduated in May, I have not been able to work as a therapist. I still need to take my National Exam, find an approved supervisor and process all of that through the state. So unfortunately, it may be next Spring before I'm able to start working as a therapist. Getting all the red-tape stuff done to begin working has taken a bit of a backseat with everything going on with Eli. But, I was very fortunate to be able to get this job as the Family Advocate. I've been training the past two weeks, so that hasn't left much time for blogging. And they are being really awesome to let me go ahead and train, then wait to actually start my job when we return at the end of August.

We had our conference call with Baylor a few weeks ago. We are definitely set for admit at Our Children's House at noon on Monday, August 6. We will leave for Dallas on Friday, August 3, try to do some fun stuff before the admission, have the admit on Monday, then Adam will fly back to Lubbock Monday evening. We've been packing and organizing over the past few weeks, but I am hoping to really be able to focus on my packing and organizing this next week!

We have also done more allergy testing with Eli. Below is the complete list of allergens and his reaction. The "flare" is the total size of the red reaction; the "wheal" is the size of the bump. So basically, anything other than a "0" in both columns means he is allergic. It's really tough because of his allergies to rice, soybean, nuts and cow's milk. We have had to change Eli to hemp milk and really reduce his go-gurt intake.

Also, Eli is allergic to the Pediasure 1.5 he has been getting through his pump. The solution: change the formula. Easy enough, right? The problem: Eli's GI doctor here in Lubbock said that Eli doesn't really have any allergies and there is no reason to change the formula. And he called me personally to lecture me for about 10 minutes. He also says that there is no reason to repair the hernia Eli has and thinks it's ridiculous for me to seek out a second opinion. Needless to say, we'll be looking for a new GI doctor. Baylor said they will just change the formula once we get to Our Children's House. We will be switching to EO28 Splash, which is hypoallergenic. However, we were hoping to be able to make this formula change before he admit, so this may lengthen his time at Baylor since we were not able to make the change before now.

We do have an appointment at Cook's Children's in Ft. Worth with the GI group on August 14, so we will get to have a little outing that day. We have also started a Facebook event, asking for prayers and good vibes at noon on August 6 as Eli gets admitted to Our Children's House at Baylor. If you're on Facebook, please feel free to click the link below and RSVP to say a prayer at that time. It's an open event, so we'd also appreciate any sharing.... We know this will be a difficult month and we'll gladly take all the prayers we can get! https://www.facebook.com/#!/events/501851159840581/

So that has been our past 2 weeks! A little busy, somewhat chaotic and stressful, but still filled with LOTS of hope and excitement!!!

ALLERGEN	FLARE	WHEAL
Histamine - Control	40	10
Apple	0	0
Wheat	25	5
Rice	10	4
Peanut	24	6
Soybean	26	7
Walnut	21	5
Pecan	0	0
Cashew	24	6
Tuna	0	0
Egg White	750	17
Egg Yolk	36	10
Cow's Milk	16	5
Banana	0	0
Orange	0	0
Baker's Yeast	0	0
Corn	30	12
Tomato	6	4
Potato	20	6
Celery	14	4
Carrot	20	4
Pea	30	10
Shrimp	20	7
Chicken	0	0
Beef	24	6
Pork	0	0

"I'm gonna be a golfer!"

We had Eli's Golf Scramble yesterday and it was a HUGE success!!! We had about 26 or 27 teams of 4, so it was a great turnout! Honestly, it was a little over-whelming, but still amazing!

Eli stood out front as people were arriving to show of his golf skills. He was so excited for the scramble and told people for about a week "I'm gonna be a golfer!"

I think he had a fun time showing off for everyone and they all thought he was a pretty cool kid!! Several of the players got a good laugh when Eli broke his putter after taking a few hard hits.

After lunch started, Eli was pretty tuckered out from showing off his golf skills, he napped all through lunch. Here he is with Jolee, one of Adam's team members and a great friend of ours.

After lunch ended and the scramble started, I took Eli to the babysitter then met up with Adam and his team to ride along. It was so much fun to see Adam, his team and all the other teams playing!

This is Adam's team: Jolee, Kevin, Adam and Lane.

Here are a few more team pics...

I apologize for not having more pictures; I kept getting so caught up in talking with people, etc that I forgot to take pictures!

I have to say this was an amazing experience. We were able to meet so many wonderful people and I feel like it gave us the opportunity to also get Eli's story out there. The generosity of everyone involved was simply overwhelming and wonderful. Adam and I can't even begin to say how thankful we are to everyone.

There are several people and business that we want to recognize.

First and foremost, Brent, Dustin and Megan from Melt. Y'all are amazing! Choosing Eli as your charity blew us away; then putting together such an awesome fundraiser.... We are forever grateful!

Secondly, to Mayor Robertson, Erin and ALL the staff at Hillcrest Country Club for hosting the Golf Scramble... Everyone was so nice and helpful; and truly a pleasure to be around! The facilities and the course were beautiful and I'm so thankful to each of you!

So many people and business donated things; beer, liquor, raffle items... I don't know how to thank all of you! You were a HUGE part of making this a success!

Also, everyone who donated items for the goody bags: Planet Beach, Intimate Expressions, Radio Lab, Golf Headquarters, Complete Nutrition, Angelina Bodie... And I apologize if I am leaving anyone out. There were just so many amazing donors, all the names were hard to keep up with.

And last, but definitely NOT least, ALL the amazing people who signed up to play or were Tee box sponsors. This most certainly could not have been done without all of you! We had many great friends who played, even some driving in from Dallas and Midland. Then there were the many other people who just played out of the goodness of their hearts... people that we had never met before, but saw the flyers and heard Eli's story and came out to show support. Our thanks go out to each of you.

God bless each and every one of you. You will all have a special place in our hearts. Your support is getting Eli so much closer to the treatment he needs and we are forever grateful!!!

"Oh... WOW!"

Well, we met with the allergist and immunologist this morning. We have been seeing him for about a year now, but this morning's appointment was to start testing for Eli's food allergies. I continue to be impressed by this doctor. He has always been very knowledgeable and I was very please to hear that he actually knew what Eosinophilic Esophagitis was!!!

So the nurse came in to get the test started, drawing a grid down Eli's back. Then he started the test.... Thank goodness Adam was there. I don't think I could have held Eli by myself... Poor guy was not happy being pricked down his back. After the nurse finished applying the allergens to Eli's back, he left the room to give the allergens a chance to react. After about 15 minutes, he came back to the room. His eyes got really big and he said, "Oh.... Wow! We've had some reactions! I was NOT expecting that!" He seemed to be pretty amazed at the reaction that Eli had to some of the allergens.

We only tested for 13 allergens today. We will plan on testing for other fruits, vegetables, proteins, etc. later on. Below is a table of the results of today's test. The Allergens tested for are listed first, followed by the Flare measurement (the size of the redness or rash), then the Wheal measurement (the size of the bump).

So basically, Eli had NO REACTION to:

• Apple
• Pecan
• Tuna
• Banana

Eli had a MILD REACTION to:

• Wheat
• Rice
• Peanut
• Soybean
• Walnut
• Cashew
• Cow's Milk

Eli had a  SEVERE REACTION to:

• Egg White
• Egg Yolk

So it's pretty obvious that Eli HAS to stay away from Eggs! He had a more severe reaction to it than the control Histamine. The doctor also said that it will be best to avoid tree nuts, as well as Cow's Milk. Even though the reaction to it was mild, Eli is also lactose intolerant. We were concerned about the Soybean because Eli drinks soy milk. After drinking it, he usually coughs a lot which is a symptom of having a "flare" or reaction. We asked the doctor about switching to rice milk since the reaction to rice was less than that of soybean; he advised against this because soy milk has a higher nutritional value than rice milk.

After this testing, we also went to have lab work done. The doctor ordered a "Pedi Food Panel" so they drew 4 vials of blood and will be testing it for allergies; they will repeat everything that the scratch test tested for, as well as a few other allergens. We should have those results in a few days!

So basically, we have a good starting point. This will give us a good place to start at Baylor once they are able to get Eli to start eating. A Gluten-free diet is probably going to be best for Eli. We are also planning to work very closely with a nutritionist to monitor Eli's diet and calorie intake.

The doctor also asked if we were doing an Elemental or Elimination diet with Eli. Unfortunately, we haven't been given much guidance in that area.... We're really hoping to get more information from Our Children's House; we're also planning to get a second opinion from a GI doctor at Cook's Children's Hospital as far as the hernia and other GI issues are involved.

But, this is definitely a step in the right direction. Now that we are beginning to find out exactly what Eli is allergic to and is causing or will cause EE reactions, we can begin to build a healthy, non-reactive diet for him once he begins to have oral intake!!!!

We're very excited to finally be getting somewhere with his health issues and have big hopes for his future!!!

And the winners are.....

Well, the raffle is over and we have drawn the names of the winners!

First off, we want to say a HUGE thank you to everyone who donated prizes for the raffle! We could not have done it without you! Donors are:
     ~Deborah Baremore - Scensty gift basket
     ~Mike at Elite Mill Works - Twin-on-Twin bunk bed
     ~Morrison's Supply - Milwaukee Cordless Tool Set
     ~Jan Belli - 2 Massage gift cards
     ~Brent Murray - 2 Melt gift cards
     ~Kevin DeVore - Spoonful gift card

Your generosity in donating these prizes just amazes us! Thank you for caring so much about Eli and helpuing us get him the treatment he needs! This would not have been possible without you!!

Second, we want to thank EVERYONE who purchased chances! Every dollar raised will help with expenses while Eli is at Our Children's House at Baylor Medical Center. We are so grateful for everyone who bought tickets and supported this effort to help offset expenses for the trip!
Lastly, we want to say CONGRATULATIONS to everyone who won!!!! We had people purchase anywhere from 1 ticket per package..... to 40 or 50 tickets per package!!! We know we had some awesome packages and prizes to choose from, but we also know that the money spent on those tickets was given from your hearts in order to help with the financial burden of this journey to Baylor! So we want to thank you, as well, for giving from your hearts!!!

AND THE WINNERS ARE......
     ~Missy Thomson - Twin-on-Twin bunk beds
     ~Brent Murray - Milwaukee tool set
     ~Billy Mebane - Complete Nutrition, Ulta and Massage gift cards
     ~Kendall Owen - Scensty gift basket, Melt and Massage gift cards
     ~Jolee and Lane Luce - Chili's, Spoonful, Melt and Cinemark gift cards

Congratulations again to all the winners and thank you to everyone who donated prizes and purchased tickets!! We love you all and appreciate you and your generosity!!!

A Note to Doctors

Another mother on one of the Facebook pages I'm a part of recently posted this. If we could somehow give this to all of Eli's doctors.... As a parent of a child with multiple health issues, you get accustomed to going from one doctor to another. And, unfortunately, you also become accustomed to being told, "Well, we need to refer you to....", "I don't know....", or a long drawn-out explanation full of medical terms we don't understand. We've also become accustomed to the sighs, the eye rolls, the irritation in the nurses voice when you call to ask another question about a rash, a leaky tube, a medication...... I understand these doctors see multiple kids a day. I understand this is routine for them. But this is not routine for me; this is my child who is sick and literally CAN'T eat. A fever to him could result in late-night ER visit or a lengthy hospital stay, more lab work and tests, more medications..... If doctors could, just for a minute, see it from the perspective of a parent. Lauren Sellers, out of her own personal frustrations with her child's doctor, composed this letter with the help of other parents of medically fragile children.

Parents of Tube-Fed Children Ask This of You…
By Lauren Sellers, with the help of over twenty moms of tube-fed children


1. Consider what our daily life as the parent of a tube-fed child looks like.
Many of us arise at a ridiculously early hour in the morning to the incessant beeping of a pump, a child crying because a tube detached and they are covered in stomach contents or a wet bed after diaper leaks. Buttons pop out, or are sometimes ripped out. After a rough morning, our days do not get any easier. Michelle Wilson describes it well by saying, “Almost all day long, all we think about is how to feed our child, how much time will it take, how much to give, how fast or slow to give it, can they handle this volume, are they growing, can I feed them this...oh how I wish they would just eat.”. We cannot simply throw some diapers and some snacks in a bag and walk out the door. Preparation for everything is an exhausting process. And if we are desperate for just a little time to ourselves, we have to then rely on family and friends, who often have no idea how, or are too frightened to watch our medically fragile children. The stress from never getting away from all things medical puts a huge strain on relationships with our spouses especially. We do not have any time together, without the discussion of medical supplies, hospital visits, bowel movements, fights over feedings, vomiting, and other less-than romantic topics. Financial struggle is also a big issue with most families. Formula and/or special foods are not always covered by insurance, along with extra supplies like protective belts, spare buttons for emergencies, and back packs that make our life and theirs easier. We spend money on gas for every trip to the doctor’s office or hospital, parents miss work, and other family members do without as well. Having a tube-fed child is taxing in many ways.

2. Inform us in a compassionate manner.
We know you are the experts, which is why we come to you. Please do not speak to us as if we were a nuisance. We know that you see a lot of kids. It’s not as if we take joy in calling your office and listening to all of the extension choices, just to be sent to your voicemail. We only call when we have a valid concern about our child’s health, so please take the time to address our concerns in a timely manner. As Lisa Cavitt points out, “This is a living breathing human being I am pumping fluids into, and if he/she is getting sick every feed, or has a rash or discoloration, or a leak, to me, it is serious because it is not normal, and the minute I assume I know what I'm doing and I hurt her, it is ME that has to explain to [her] why I did what I did.”
We would love to have a happy, symptom-free, tube-free child that no longer needs your services, but until that day comes, it would be great if we could work together as a TEAM. Katrena Lee wants you to know that, “This is TOUGH for us…be kind, compassionate and understanding. Help us work through the issues with you.” Our children are not milliliters or ounces, so talk to us about the overall health, and goals that we need to achieve, not just about numbers. Every child is different. And sometimes, even when we follow your orders meticulously, our child will still refuse to eat anything, and while that may be upsetting to you, it is devastating to us! Please do not assume that if a child is not gaining weight, it is not because we are not trying every last thing we can possibly think of to coax them into taking one bite. All any of us want is for our child to grow and be healthy.

3. Trust us.
We know our child better than anyone. We make the choice to come to you because we trust you will do your best for our child, so trust that we also have our child’s best interests in mind. Trust us to make good decisions for our child, and help us if we are having trouble. Please have respect for parents dealing with feeding issues 24/7. We do know what we are talking about. Our life revolves around each calorie consumed. We know what food our child can, and cannot tolerate, or will even try. When the time comes that you do not know what’s best, listen to us. In many cases, we have to figure out many of our child’s issues on our own. Don’t judge us simply by our reactions. None of us dreamed motherhood would mean sticking objects into a hole in our child’s stomach, treating wounds, draining stomachs, venting, or flushing. Our laughter may come from our uneasiness in the situation, or our apparent lack of emotion might come from chronic fatigue. We go through a lot more than most parents ever will, and we are tougher for it. Just because we act one way in your office, doesn’t mean that we do not scream in our car after an appointment, or cry once our child is asleep at night. Our child is always our top priority.

4. Remember that tube feeding is not all bad.
As I have explained at length above, there are definite negatives to having a tube-fed child. But when we do see our child finally have the energy to run around our yard, not cringe over the thought of food that hurts to eat, finally start to catch up developmentally, return to their “old self” (as I have seen with my son), and in other children’s cases, stay alive, we are so incredibly thankful for those tubes. We all hope to get rid of the tube one day, and we work hard with doctors and therapists to do so, but we ask that you still remember how much tubes improve the lives of those that need them.

What now?

Well, Eli had his Endoscopy and biopsies done on Wednesday. The procedure only took about 8 minutes. Poor guy was out pretty good! Dr. Higgins, the GI doctor, biopsied Eli's esophagus to test for EE, Eosinophilic Esophagitis. While doing the scope, he also found a hiatal hernia at the base of Eli's esophagus. He's not too concerned about the hernia now, but it may need to be repaired via laparoscopic surgery. As far as the biopsy results, it would take until Friday (today) to get those results.

We were at Eli's feeding therapy when I received the call from the doctor's office concerning the biopsy results.

Back in June 2011, we were referred to the Texas Tech University Health Sciences Center for genetic testing. We did the lab work in June, but it took until August to get the results. Needless to say, we're becoming accustomed to waiting for answers and results. When those results finally came back that Eli had Klinefelter's syndrome, I got the phone call from the doctor's office and my stomach immediately dropped when I answered the phone, fully expecting a nurse to be on the other end, but surprised to hear the doctor's voice.... That's never a really good sign.

Well, I got that surprise again today. The phone rings, I immediately know that it is the GI doctor's office calling, and I answer... only to hear, "Hi Rachel. This is Dr. Higgins. Guess who has Eosinophilic Esophagitis." So, it's official.... Add one more diagnosis to the list. Eli has Eosinophilic Esophagitis. I'm still getting used to saying that; not because it's so difficult to pronounce, but because it's just one more battle; one more thing to medicate; one more thing to deal with. Talk about scary.

So, Dr. Higgins has called in an inhaled steroid, only he doesn't want Eli to inhale it; he wants it dropped down his throat and swallowed. We'll start that today.

Then we go back to Dr. Higgins in a month for a follow up, both with the EE, as well as with the hernia.

We also have another appointment scheduled with the Allergist and Immunologist to do a consultation to begin testing for food allergies.

Just when we think things are calming down, we're thrown for a loop.

So, now we'll start this treatment and just keep going. I have to keep telling myself, "Don't give up. This can be dealt with."

We just ask for continued prayers. Things are going to be tough for a while. We're going to continue with therapy to work on sensory issues, but have to put other things on hold until Eli has been doing the treatment for EE for a bit. He can't exactly try to eat when he's allergic to food.... At least things are starting to make sense now. He doesn't eat because it DOES hurt. And because of that pain, he's terrified of food. He gags, partially because of fear, but also because of the reaction in his esophagus.

It's a lot to take in. But we'll deal with this, too. Like Adam (my husband) said, "At least it's an answer." This is the answer we've been waiting for since August 2010; almost 2 years. But now we have an answer and now we can begin to formulate a plan.

For more info about Eosinophilic Esophagitis, visit http://www.eosinophilicesophagitishome.org