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.

Friday, January 16, 2009

Ross' Results

We wanted to let you all know that we received Ross' results in the mail today, and they were not exactly what we were expecting. The results were actaully much worse than we had originlly anticipated. There were increased eosinophils present in his small intestines, large intestines, and blood vessels; as well as, his esophagus. The numbers were outstanding in his esophagus at 245 eos/hpf...they should be zero. His doctors have a meeting scheduled for February 5 to discuss his treatment options. At this point, his options are very limited. The three options that we know about at this time are: 1. Formula only for three months (like Abigail) 2. Large doses of inhaled steroids swallowed (indefinately) 3. Biological trail drugs. Please be in prayer that God direct the doctors and us down the right treatment path and that we are prepared to do what needs to be done. Thank you all for the prayer and support you have shown our family. Although this news was difficult to take in we know the Father has mighty things in store for the future!
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2 comments:

clmichel said...

I just wanted to thank you for your helpful blog. My 22 month old son has EE and I have found the most helpful information by talking with other mothers and reading their blogs. You probably have the most organized blog I have come across so far!
Sorry for your struggles, you have a cute family and darling little girl.
It is comforting to know others are going through the same frustrations!

January 22, 2009 at 4:45 PM
Jennifer said...

We are thinking about you. . .

January 29, 2009 at 3:58 PM

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