The Latest…

21 Nov

I have not updated Bloggityville lately on the progress in Button Boy’s daily struggles with food and weight.  We have been on a EGG-FREE diet since we found out he was allergic to them in September…to say this has been easy or fun, is an no where near the truth.  At first we were very OVERWHELMED at what an EGG-FREE diet meant….little did we know that it was so much more extreme than we could ever imagine. 

When we left Dr. LaRussa’s office, we were were flabbergasted, to say the least.  EGGS?!  Eggs were Button Boy’s most favoritest food!  UGH!  Now, how was he going to eat scrambled eggs….we know, EGGBEATERS!  <go to the grocery store, look at warning label:  WARNING:  CONTAINS EGGS!>  Ok, that is fine…he LOVES pancakes, we will just get a “just add water” mix, and make pancakes <go to the grocery store, look at warning label:  WARNING:  CONTAINS EGGS!>  Repeat this scenario over and over and you know the first week without eggs was like.

Then I found a resource in Heather at SPEWDfree!  WOW!  We only thought we were struggling, and here she is an adoptive parent (PRAISE GOD!) and learning that her son has ALL of these allergies and coping on a day to day basis finding things to eat and maintain him in a lifestyle that does not isolate him from the world!  On top of that she began a website that gives support to others that are struggling with recipes and other allergy worries.

I also was introduced to the Food Allergy & Anaphylaxis Network.  It is a great resource for parents, schools, churches, and other groups that are looking for guidance on controlling the areas where snacks and meals are served.

Our education is nowhere near finished.  We are learning new things about food allergies and Eosiniphillic Esophagitis everyday.  Since we are still new to the diagnosis, we are still learning what the multiple causes might be…what the treatments now consist of…and what the future might hold.

Fast forward right at 3 months since the original diagnosis of Eosiniphillic Esophagitis.  We went Tuesday to Birmingham to spend the night before Button Boy’s endoscopy scheduled for Wednesday morning.  We had called some very dear friends of ours, Thad and Kimberly, to try and have dinner with them, and we were fortunate enough to be able to share a meal with them at Taziki’s…we LOVE Taziki’s!!!  We then went to Whole Foods, because the last time we went there, we found the most AMAZING vegan chocolate chip cookies.  For those of you with children that do not have food allergies, vegan means that it is not made with any…and I MEAN ABSOLUTELY NO…animal products…and that includes EGGS!  <hint – hint!>  Unfortunately, though, they were out of the cookies, but they did give me the Bakery Manager’s card and said for me to call the next time we are planning a trip to Birmingham, and they would be glad to order some for us!  Isn’t that awesome!!!!  I do want to share the website for the cookies — Liz Lovely  —  please go, and consider gifting Button Boy with those really expensive cookies  (Cowgirl chocolate chip)!!   🙂  j/k…well, kind of.

We finally made it to our hotel around 9:00pm.  We always try to stay in Birmingham the night before a procedure in the hopes that we will get a good night’s sleep before having a stressful day.  We stayed at the Comfort Inn on Summit Parkway, and quickly decided we would stay there again!  The hotel was newly renovated and was very convenient to Children’s Hospital (it only took us about 5 minutes at 6:30 in the morning). 

We are now beginning our long day at Children’s Hospital.  We got registered and immediately Button Boy got taken back to the lab for bloodwork…what a great way to begin the day!!  UGH!  We went back to the waiting room and waited for about 15 minutes, then back to a surgical holding room.  Button Boy had a great nurse — which we always have at Children’s (I haven’t talked about Nurse Trisha, yet!)  The downside came after the 3 hour wait…at least 3 hours, Button Boy watched WALL-E and Toy Story 2 during the wait.  During the wait, we were visited by our nurse, the girl who brings crayons and the book about Claude the puppet that had surgery, the nurse anethesist, the anethesiologist, and Dr. Saeed…and we napped.  Finally he got taken back to the operating room, of course, he cried & I wanted to cry…while walking towards the surgical suite, Dr. Saeed met us and was happy about the outcome of the previous endoscope he had done on a child with Eosiniphillic Esophagitis.  This child had the same problems as Button Boy (we are unsure of what allergies this child has), but this child had just had the endoscope and it showed significant healing of the furrows, accumulation of white blood cells and mucos build-up, and this child was on the same steriod that we were using.  Dr. Saeed said that he was very hopeful that Button Boy’s procedure would reveal the same progress…he then asked us about Doors By Decora and how our business is doing…we are very fortunate to have a doctor that cares so much about our family. 

Once the procedure was finished, Dr. Saeed came to our room with a look of defeat all over his face.  He then told us that the findings of Button Boy’s endoscope were not what he was hoping to find.  His Eosiniphillic Esophagitis is not reacting to the steriod as he had hoped.  In fact, the mucos, accumulation of white cells and furrows are pretty much the same as they were, even after 3 months of steriods.  He said that he would know more of the direction we would need to take after the biopsies came back, but there are a few options…

First, we will probably try another steriod.  We are prepared to be on it for around 3 months again, with another endoscope to look at its progress.  Second, Dr. Saeed is going to be beginning a clinical trial for EE, and will want Button Boy to be a part of it.  Third, Button Boy may have to be put on a “six level elimination diet” — which means, we will eliminate most high food allergens, and slowly reintroduce them to his diet, having an endoscope after each reintroduction.  As a last resort, there is a slight possibility, and I can only stress right now that it is slight and a last resort, that we might be looking at another G-tube.

We are waiting as patiently as possible for the biopsies to return. 

Our family has a wonderful praise that happened after Dr. Saeed came in with the results.  Mojo presented Dr. Saeed with a New Testament in his native tongue, Urdu.  He very graciously accepted it, and asked Mojo to write something in it.  We are prayerful that he will read it and be touched by the Holy Spirit, and that this might lead to his salvation in Christ Jesus.

So, faith comes from hearing, and hearing from the word of Christ. 

Romans 10:17

Please join us in praying daily for Dr. Saeed and his family, and the Word of God penetrating their hearts.  Our prayer request for Button Boy is simple, that God may use these times as a testimony in our lives, especially his and Girly Girl…that they know that with Christ all things are possible, and may they see us lean on God and trust in Him during the times we don’t have earthly answers.

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5 Responses to “The Latest…”

  1. bella November 21, 2008 at 9:40 pm #

    I love you guys and you continue to have my prayers during this tough time. let me know if I can do anything (as long as it doesn’t involve a hospital… they give me the heebey jeebeys)

  2. Shana November 22, 2008 at 11:14 am #

    Hi! I am a friend of Catherine Sybert. My daughter has severe allergies to peanut, tree nuts, milk, eggs and sesame. Please email me if you would like to talk shana@farrisnet.net. I will be happy to share any info I have with you but you seem like you have it under control. Take care,

  3. notsosahm November 22, 2008 at 11:09 pm #

    Wow, what a roller coaster. But a great ministry opportunity as well! I’ll be praying!

    This is Vicki, from church 🙂

  4. mary ellen's mom November 23, 2008 at 3:56 pm #

    Even today God is answering your requests and using this trial for His own glory! I’m encouraged by your strong faith in HIS steadfast goodness and sovereignty.

  5. Christine November 24, 2008 at 8:03 am #

    Hate to see that this continues to plague you guys but so glad to see how your faith is carrying you. Love you!!

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