Butter!

I told you in a recent post that I have started buying raw milk from a local dairy. There are many products that can be rendered from raw milk, and butter is one of them. So today I thought I would be adventurous and attempt to make butter from the cream that I had previously skimmed from the top of the milk. My attempt ends in success. We have butter! Interested in making your own raw butter and learning more about raw milk? Click here.

Hippie Lady

Yes, I am sure that I am soon to be called, "The Hippie Lady," or hey that's my "Hippie Friend", but that's okay with me! We are picking up our grass-fed beef this afternoon from Greener Pastures Farms, and I can't wait until Ross can eat it! We have also started buying organic produce from Old Soul Organics ; which is a home delivery service for the Northwest Arkansas area. We go one step further by buying fresh, unpasteurized unhomogenized milk from Rusk Farms just past the Arkansas/Oklahoma border. Being that we are small business owners, I'm all about supporting local business owners; and with our special food needs those small business tend to work out the best for us.

I am in the process of transitioning our family's diet from conventional foods to organic foods; or all natural at the least. We are eating very little foods from a box anymore. No more heavily processed foods, no additives, no artificial colorings or flavorings, no more high fructose corn syrup...we are going back to the basics. With the exception of Smarties of coarse!! :) My new philosophy is if they didn't eat it 100 years ago, we probably shouldn't be eating it today. Why are we doing this? First and foremost, because we have been told that EE patients tend to have a better chance of passing a food trial with food that has not been sprayed repeatedly with pesticides and herbicides or processed so much that there is virtually no nutritional value left. Secondly, plain and simple. It has to be better for us. Lastly, I am actually saving money. That's right. Saving money. I'm not buying junk food or many prepacked items anymore; which has helped my budget tremendously. Now, I'm certainly NOT saying we don't indulge once in a while. If we want ice cream, we get ice cream. And chocolate....is a must! Of coarse there will still be those days we swing by a fast food restaurant for a quick meal, but they are becoming fewer and farther between. I see more "hippie moments" for me in the future...butter, yogurt and heavy whipping cream from my fresh milk, homemade organic breads...the possibilities are endless! Only time will tell how we will end up with this transition.

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.

Gene Linked With Eosinophilic Esophagitis!

CCED and CHOP have discovered a gene linked with Eosinophilic Esophagitis. Click HERE to read the article. This is huge news for those living with EE, and the future treatment that will hopefully come from this new discovery.

EE vs. GERD

Children's Memorial Hospital in Chicago, IL, produced an excellent article explaining the differences between Eosinophilic Esophagitis (EE) and Gastroesophageal Reflux Disease (GERD). There is a handy chart midway through the article comparing these similarities and differences. Click here to view the article.

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!

Inhaler Propellant and Corn Allergies

Just FYI, if your child is using an inhaler and doesn't seem to be getting better after the treatment; and in fact seems worse, it could be the propellant. Abigail uses an Albuterol nebulizer at home as needed, and if she happens to need a little help with her breathing while we are out and about, we used an Albuterol inhaler. Both Albuterol, they should be the same right? Wrong. Abigail also happens to be very allergic to corn...did you know that most inhalers use ethanol (a by-product of corn) as the propellant? This would explain why time after time we would use the inhaler and I would swear that it was making her worse. Because it was! Of coarse, I countered myself by saying that couldn't possibly be since she used the nebulizer and responded well to treatments. It finally got to the point that more times than not we were counteracting the inhaler with the nebulizer until one day, I happened to catch the word "ethanol" on this side of the inhaler. By the way, Xopenex also uses ethanol as the propellant. We now have a portable nebulizer that travels where ever we go, and we haven't had any problems since. I figured I wasn't the only one who didn't know about the ethanol, and wanted to spread the word to you other mom's and dad's who might be experiencing similar scenarios.

Ross' Results

So, Dr. Kushner called with Ross' preliminary results. He still has mild to moderate eosinophils, but the numbers went down from 245 to 26. That is huge improvement but the disease is still prevalent. He is going to continue his beef trial along with the formula until all of the the doctors (from U.C. and Cincy Children's) meet sometime in July. They will discuss his further treatment options and get back with us. He also still had eos in his small intestines as well as in his esophagus; so this may change his diagnosis a bit, but we will have to wait and see.

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.

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!

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.

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.

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.

Many Thanks!

Beloved friends, I can barely contain the excitement I feel as I tell you of how God is moving. What an Awesome and Mighty God we serve! My dear friend, Cassidy, posted a message to an eosinophilic message board about our family's needs, and here are the responses we received...are you ready for how Powerful God is? Let me share in His wonder....

"I have some extra Neocate Junior that I can send him. You can give them my email address and they can contact me."

"I have Neocate Jr. which I would think could be mixed to his needs. I may be able to give 30 or more cans. I am willing to continue to help and share my supplies ongoing if it is helpful for them."

"I will be happy to purchase a case or two of whatever formula works for him.Thanks."

"While on the formula, I ended up with several extra boxes of the Neocate, which is not expired. I would be willing to ship it, assuming that I would be reimbursed for postage. Let me know."

Are you smiling yet? I am. Thank you for joining me at the Throne; please continue to meet with us there. I am so thankful I can share in this experience with those I cherish so dearly. There is nothing more empowering than the Mighty Power of our Lord and Savior, Jesus Christ. Thank you, Jesus! Thank you, Jesus! Thank you, Jesus! We give You ALL the glory!

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!

Conjunctivitis...a.k.a. Pink Eye

My child of strength can smile through anything...even Pink Eye! Her poor little eyes are so pink, swollen, and oozing with green stuff. Since nothing comes easily to her, we were calling the doctor on call last night after having an allergic reaction the the eye drops. The sad thing is, I made her have a reaction twice before I really believed that she was allergic to them. Not five minutes after administering the drops, she broke out in a rash all over her stomach. Poor girl was literally clawing at herself. Mark one more down to the already growing list of antibiotics that she is allergic to. Thankfully we are able to give her Omnicef; which she is starting today to get rid of the Pink Eye. Hopefully in a few days she will be back to "normal" again. I leave you with the conversation Abigail and her daddy had...

Daddy: Well Abigail, I know why you have Pink Eye. Abigail: ....confused look.... Daddy: It is because Mommy and I argue over what color they are. Mommy says brown, daddy says green, and God says....PINK! :) Abigail: yep...
He thought he was so clever.

FYI: Levaquin and Vigamox eyedrops are in the same family-class of drugs. So, if your child is allergic to one of these, don't use the other! :)

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!

Updates

Although we do not have an update at this time on Ross' progress, he did make it through his scopes in Cincinnati just fine. We are still waiting on the pathology report and "game plan" for treatment from the doctors. We knew we would have to endure quite the wait because his results have to be read by two different doctors at two different hospitals; but he is beginning to get a little anxious.

Abigail on the other hand, does have results. She still has a few (11 eos/hpf) residual esoinophils. There was some progress from the last scope, so we were instructed to continue formula only for the next six months. At that point we will scope again, and hopefully be able to start food trails.

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.