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.

Monday, February 22, 2010

It's Been A While...

...and this is the reason why! Our sweet son, Jonathan Ross, was born December 10,2009. Weighing it at 8 lbs. 1 oz. and 20 1/2 inches long.



We finished out 2009 with a bang by bringing home a baby boy to a family filled with girls! ;) His three big sisters are in awe of him. Although 2009 ended on a good note, 2010 started with a hospitalization and pending food trial. You know it isn't a good sign when your three year old falls asleep during a breathing treatment at 5:00 in the afternoon. That is exactly what happened Friday evening, January 29th, when Abigail was getting what I thought to be a "normal" breathing treatment. After realizing that she had fallen asleep, I checked her forehead and sure enough she had fever. No biggie, we had had a few late nights so I thought she was just overly tired. I let her rest for a little while, got her up, did our nightly routine, and put all the kids to bed. She woke up early Saturday morning and crawled into bed with Ross and I and fell back asleep. This is where she stayed all day. In our bed. When I say all day, I literally mean. All. Day. Long. I had to carry her to the bathroom to go potty; with her crying the whole time. She slept for hours at a time, and just when it would get to the point where I felt like we needed to take her somewhere she would wake up for a little while. She was only awake for about 20 minutes at a time, but at least we knew she was still responsive. Up until this point Abigail has never really been sick. Sick with EE, yes. Sick with a cold, yes, but really sick with an illness? No. I had listened to her lungs and they sounded clear and her temp wasn't terribly high; so we called it a night and all went to bed. Then Sunday arrived. Same thing. Won't get out of bed, won't drink her formula, won't talk, and temp is hanging out right around 103. The only good thing we had going at this point is that she had been drinking water so we knew she wasn't getting dehydrated. After giving her a bath, I noticed that her hands and feet were kind of gray in color. Thinking they were just cold, I tried warming them up. Then I had Ross try. While he was trying, I decided I needed to listen to her lungs. That is when I knew we needed to take her to the emergency room. At this point she wasn't wheezing, but she had significant crackles (indicative of pneumonia) in the bottom right lobe of her lung, which had been perfectly clear the day before. By the time we could get to the ER she was retracting at the trachea, indicating that her breathing was becoming more labored. Her pulse ox was 87 and dropping rapidly, even after a Xopenex updraft. She had two more breathing treatments and was placed on oxygen. After each of the breathing treatments, her pulse ox continually dropped, and she was admitted for RSV (Respiratory Syncytial Virus) and viral pneumonia. She was on continual oxygen for five days straight. Just when they thought they could wean her down, they would have to up it again. Let me just say that it is very frustrating to see your child get weaned down to 1/4 of a liter of oxygen just to turn around a few hours later and see her back up to 2 1/2 liters. The oxygen levels continued going up and down until Friday morning when she woke up and was suddenly much better. After several hours off of the oxygen (including a nap without it) we were finally able to go home. Of coarse during this hospital stay, the other 3 kids ended up sick; none of which got it as badly as Abigail. The point of this post is that these are the issues that we have to face when dealing with EE. It is not just the EE itself. It is the illnesses that would not typically cause a problem for healthy children her age, but because of the underlying EE, those illnesses are exasperated. This is even true for the "common cold" that lingers for weeks upon weeks in people with EE. With that being said, she is doing much better now and we anxiously await the start of her food trial. Although I am very excited to begin this process, I am also just as nervous if not more about how she could react to the food. I know that we will begin with either apples or grapes; we will leave that up to her. We decided that allowing her to choose between the two would give her some control and feel more involved in the process. We hope to begin this new part of our journey the first week of March. Here's to praying our sweet girl will pass her first food trial with flying colors!