Jesus said, "This sickness is not unto death, but for the glory of God, that the Son of God may be glorified through it." John 11:4



You Are Not Alone!

We started this blog as a support to those families in Arkansas and around the country who are faced with raising a child with a life-altering eosinophilic disorder. It has been estimated that one out of 3,000 people have been diagnosed with an eosinophilic disorder. Children suffering from eosinophilic disorders have a myriad of problems. Some of which include: vomiting, diarrhea, feeding refusal, malnutrition, difficulty swallowing, and failure to thrive, just to name a few.

Could you imagine a life without food? For these children, that is a very real possibility. Many of them are on a very restrictive diet of special elemental formula. Those fortunate enough to still be eating foods are very limited as to what they can eat, and still have to drink an elemental formula to maintain a nutritionally complete diet. Not only do these kids have a restrictive diet, but many of them have feeding tubes and endure several surgeries and procedures. These children show us parents incredible strength and endurance! It is our hope that other families dealing with this disease realize they are not alone, and that more people will become aware of this disease. Hopefully this blog will be a support to those living with eosinophilic disorders.

NOTE: House Resolution 296 passed in 2007 declaring the third week of May, National Eosinophil Awareness Week.

Wednesday, June 17, 2009

Abigail's Results

I received a phone call from Dr. Putnum today. He said that Abigail's scope looked great! There were only minimal eosinophils; nothing to prevent food trials. However, because of Abigail's status with this disease and her age, he suggested that we wait another six months to a year to begin trialing foods. This is because most of the children like Abigail fail their food trials, especially at her age. Another big reason we are waiting is because Abigail shows little to no interest in food. She is curious about what certain foods are, but other than asking what it is and if you eat it, she shows no desires to consume it herself. If and when she shows an interest and we cannot put her off any longer, then we begin the trials. Unless of coarse, we reach close to the year mark at which point we will begin them either way. When we do begin, we will start with grapes. She will have to eat them for 3 months and then be re-scoped. Although this was a bit disappointing, I agree that this is in her best interest. I would hate to set her up for failure by beginning too soon.

Sunday, June 14, 2009

Home Sweet Home

We are all home together as a "whole" family again. I do not like it when we are apart, but it makes it that much sweeter when we are together. The trip home was good but long. Apparently if you are pregnant and you think you are drinking enough fluids, you should drink more. I am pretty sure that I got slightly dehydrated, making the muscles in my legs hurt when applying pressure or flexing my feet. For two days I hobbled around like Frankenstein...a sight to see I'm sure! Needless to say the trip was pretty uncomfortable. I think I have been drinking my weight in water since we have been home and that seems to be helping some. All-in-all everything went well and we all all happy to be home!

Friday, June 12, 2009

Abigail's Scope

After an hour in recovery without us by her side, the aid of oxygen, and a little girl who did not want to wake up we got a sigh of relief. They gave Abigail, a new anesthesia (Propofol); to help with the nausea, and it knocked her out. She was fine, just a little sleeper than normal. Recovery usually takes about 20 minutes before we get to see her, so having to wait an hour was quite nerve-racking. Though, I would gladly wait an hour in order to prevent the vomiting that occurred last time. The medication worked and next time we will be prepared to wait longer before we see her. ;) Dr. Putnum said that her esophagus looked really good, and hopefully we will begin a food trial soon. We should have her pathology report next week. If her scope is clear and she begins a food trial then she will be scoped sometime in September.

Thursday, June 11, 2009

Ross' Scope

Ross' scope went well. The doc said that he has scarring which may not ever go away, but visually there were some subtle improvements. We are all hoping and praying for clear pathology results. We will not know any real results until those pathology reports come in, but for now he can begin a beef trial. He will continue the formula diet as well until he has a well-rounded diet; this will take some time to develop. If his scope is indeed clean then he can continue the beef trial and add a new food about every 3-4 weeks; tracking his symptoms. He will do this until he has four foods and then will be re-scoped.

Wednesday, June 10, 2009

Yes, We Are All Alive!!

I am so sorry for the neglect that I have shown on this blog lately. It has been survival mode in my household the past few months. The Lord has blessed us with a wonderful surprise...we are expecting our forth child. Also, Ross has just finished his 3 1/2 months of formula only and is preparing for his scope bright and early in the morning. He has to arrive at 6:45am and the scope should be between 7 and 7:30 in the mourning. I would like to take a moment to say what an exteremly strong man I am married to. I have not one time heard him complain about drinking the formula. Now he does have a wish list of the foods he would like to have, but never a complaint. I am so proud of him! I have to say that traveling to Cincinnati is long and expensive, but the best decision we have ever made. The Lord have been faithful to provide the way thus far and we rely on Him to continue to do so for as long as is needed. Ross is feeling better than he has ever felt and has lost 57 pounds since the beginning of this journey. Now before you gasp at that weigt loss, he could stand to loose a few pounds (said with love ;)). He looks great and appears to be healthier than he has ever been!

Abigail will have her scope on Friday at 12:30 pm. I am proud to announce that after 2 years, Abigail has tested out of all of her therapies!!! This was an exciting time, yet a little sad to say good-bye to all of her therapists. Thank you, Mrs. Alissa, Mrs. Heidi, and Mr. Daryl for all of you hard work. It has paid off! And a special thanks to Mrs. Alissa (P.T.). We will miss you dearly. Abigail has been seeing her since she was 6 months old, but oh what progress she has made!

Please be in prayer that both Ross and Abigail will have clean scopes this time so that they may begin food trials. Please ask the Lord to bless each of them for all of their hard work and sacrifices made during this time of formula only. We know that the Lord is the Great Physican and He can do ALL things.