Ross' Treatment Decision

Well, it's been a while since I have updated anything about Ross' condition. After our last Cincinnati trip, he kind of took a little hiatus; eating whatever he wanted. Now that the baby has arrived, he is ready to get back on track. He is doing a 6 week steroid burst and elemental formula only to hopefully jump start the process of eliminating the eosinophils. After the completion of the the steroids, he will add beef to his diet. This time we are choosing to use only grass-fed beef as his source for this food trial; since he is severely allergic to corn. Hopefully avoiding grain-fed beef this time will be enough to knock out those extra 10 eos he had the last time he trialed beef. We will let you how our theory turns out.

Ross' Journey

Today marks day one of Ross' three month formula ONLY treatment. He is drinking the hypoallergenic formula, Neocate Jr. Tropical. We also have the unflavored Noecate Jr. coming that we plan to flavor with the SHS flavoring packets. I have been told that it can also be flavored with cherry or grape Kool-Aid, but I will have to call Cincinnati to find out if it is a "safe" food. I will let everyone know what I find out when I hear from them. I hope we can be an encouragement to others that are about to embark on the same journey; children and adults alike. Someday, Ross will be able to explain to his daughter how he drank special formula just like her. What an amazing bond they will share!

2 Corinthians 12:9
And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.

Ross' Treatment Choice

This is not a "normal" post for me, but it is heartfelt. I know many of you have faced similar struggles, and this blog is about telling our story. So, here it is without any sugar-coating...

After much prayer and consideration, Ross has decided to do the hypoallergenic Elemental diet for the next three months. He will need to begin this by March 1 to have his 3 months in by June. This formula will help begin the healing process for his digestive system with the ultimate goal of putting him into remission. There is no risk involved with the formula and it will help with Abigail's future with EE as well; unlike the steroids. Here is where we are needing the prayers...this formula is extremely expensive! If ordered directly from the manufacturer, the cost will be minimally $1100 per month. Please be in prayer that the Lord will provide. I do not ask this lightly; I ask those reading this to join us diligently in prayer over the next 5 days. This is the part where I may very well melt down, but this formula is for my husband. The man I love and cherish will all of my heart. The man who is the best Daddy I have ever known. This is something that he NEEDS. It isn't something we want to do nor it is something we desire, but it has to be done. No amount of money should limit how we can care for those we love, but the harsh reality is that we don't have the money. We are barely scraping by as it is. We have hundreds upon hundreds of medical bills piled up on the bar that we have hardly put a dent in. Please don't see this as complaining...please see that this is coming from my aching heart. The Lord has provided for our every need, and I know He will not stop now. This is just me being very real. My husband is sick everyday. Stomach cramps, abdominal pain, difficulty swallowing, and vomiting are among the list of daily issues he faces. I rarely hear him complain. I talk about the strength Abigail shows, but the strength this man has is equally as powerful. The true testament that strength is ageless. I want to help him to feel better and to ease his discomfort! I just desperately want to give him the treatment that will be best for him; and I don't want cost to stand in the way. God's resources are not our resources, and we have seen Him move in mighty ways. Thank you for your prayers!! Thank you, Lord, for what You have done, what You are doing, and for what is yet to come!

Day 3...Allergy Results and a Fever

And the whelps begin. If you look closely you will be able to see the whelps form from his skin prick testing.




Here is a list of foods that Ross has tested positive for: milk, wheat, peanut, soy, apple, banana, blueberry, cantaloupe, coconut, lemon, orange, strawberry, watermelon, barley, corn, oat, rice, rye, sesame, sunflower, all tree nuts, all fish, all seafood, green bean, broccoli, carrot, celery, lettuce, onion, pea, tomato, molds, ragweed, grass, trees, weeds, mites, cockroach, and cat. Basically, he is going to be a meat and potatoes kind of guy. It could always be worse. We will have to wait to see what his scopes show tomorrow before the doctors will be able to make a plan of action for his treatment. Poor guy is doing his prep for his upper and lower endoscopy that he will have at 8:00 in the morning. As soon as we have results, we will let everyone know.

Wow! Abigail has grown up so much from the last time we were in this allergy waiting room. What happened to my little baby? She is really beginning to turn into a little girl.


Now for the fever part...Abigail started running a temp. of 101.2 degrees. We are assuming that she has picked up a virus from spending the past three days in and out of doctor's offices. We are praying that she doesn't have the flu! The hospital has a strict visitation policy in place during flu season where children under 12 aren't allowed to visit and all of the "community toys" are locked away, but she still managed to pick up something. I guess we should feel fortunate that this is the first time that she has gotten sick from one of our many visits to the doctor.

Snow, GI Visit, and a Little Fun

Ross' appointment with the GI went well today. Dr. Kushner was very nice and more importantly, he was well educated in EE. He asked a lot of questions about Ross' previous history and prepared us for the scope on Thursday. Tomorrow's appointment with the allergist will be more eventful I'm sure. That appointment will be at 11:30 am.

On another note, it snowed here a little today. Unlike Arkansas, they know how to treat and scrap the roads here. However, if you ask people that live here, they say they don't know what they are doing...obviously they haven't been to Arkansas when it snows! :)

We have been able to have some fun while we were here this time. We went to dinner with our friends that we met the first trip we came to Cincinnati. Poor Conner wanted to get down and play like any normal 18 month old, so he ended up with Grandpa for a while. Next time Conner, we will have to go somewhere that will allow you and Abbz to run around and play! Thanks guys for working us into your busy schedule and for a wonderful dinner.

Newest Developments

Our newest development consists of Ross having acute symptoms of eosinophilic esophagitis. For two weeks he felt as if someone was strangeling him; so on August 20he had an EGD. The scope showed a pretty nasty looking esophagus just to be frank. He has several rings, furrowing, strictures, and plaque. All indicative of EE. While waiting for the pathology reports from the biopsies taken, we decided to have him allergy tested. He had been tested for environmental allergens as a teenager; but they tested limited foods. His results showed the following: wheat, corn, oat, rice, rye, onion, yeast, green bean, green pea, orange, and soy. This is in addition to peanut, tree nuts, fish, and shellfish we already knew to be positive. Finally we received the results from the biopsies. He has 50 eos/hpf in his distal esophagus and 80 eos/hpf in his mid esophagus. If you have read Abigail's Story, you will see that her eos/hpf were 90; so they are both in pretty rough shape. We are hoping that since Ross' symptoms have just now exacerbated many years since his first onset (which looking back, was when he was a toddler), that his case will be less severe than Abigail's. We have been having difficulty finding an adult GI that has experience with EE, so we are also taking him to Cincinnati. We have begun the process and look forward to an acceptance call within the next 2 to 4 weeks.