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Rejoicing Allergy Update

1 Corinthians 2:9 “Eye has not seen, nor ear heard, nor have entered into the heart of man the things which God has prepared for those who love Him.”

Sorry that it has taken me so long to update about our most recent allergy tests.  We had the test the day before Thanksgiving and thankfully, life has been busy since and this is the first opportunity to write.  But, I still feel like I must pinch myself, as this is a GIFT straight from the hand of God.  I know that so many have prayed and hoped for a good result, and we thank you!!  I am so blessed to write this blogpost.  We have no doubt received a BLESSING that we could not have even hoped for even a year ago!

RACHEL CAN EAT COOKED EGGS!!

This is truly a joy that we could not have asked, or even imagined.  But GOD IS SO GOOD!!

As many of you know, I write as a way of reflection and to dwell on the Lord’s goodness to us.  In the chaos and craziness of this season of my life, it is a method that really helps me slow down and be able to process life.  So, fair warning, this could be a lengthy post as eating eggs will be a life changing transformation for our entire family in far-reaching ways.

 

 

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My favorite store bought eggs. They come with the verse, “This is the day that the Lord has made, Let us rejoice and be glad in it.” So very fitting!

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Rachel was SO EXCITED to help with the baking of her cake. This is a child who has never, ever, ever cracked an egg (for the record, I was still too nervous to let her this time either) but to even have in this close of proximity was a new experience for all of us.

Last Wednesday we headed to the doctors office bright and early with a chocolate cupcake in tow.  I must admit that just the thought, let alone actually making these the night before had my heart racing a bit.  For years knowing that something as little as an egg was the equivalent to a weapon being pointed at my child, only now to have had them on the counter on purpose was odd to say the least.

 

Once we got to the office, the doctor started out by wiping a smear of the cupcake on Rachel’s cheek and then waited for 10 minutes to see if the contact would bother her before she ingested it.  All was good.  Next round was to take a bite that was 1/32 of a dose of the cupcake and work our way up to her eating the entire thing.

 

One of the first bites.  Mama's heart was praying up a STORM!!

One of the first bites. Mama’s heart was praying up a STORM!!

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After the first three sections, still praying, but feeling a quiet joy that life was potentially about to CHANGE drastically for us.

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Does she look worried? Not in the least, which is another aspect that I could not have imagined. This is the child who has been instructed to not put a SINGLE thing in her mouth without knowing the contents of it for her entire life! Last half of cake was, “Fun to eat!” according to her. PRAISING GOD!!

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Test finished! NO red face, or rashes and breathing was still occuring! HUGE SUCESS!!!

Life changes because of this test:
-No longer fears dying from a food, or at minimum needing an epipen and a trip to the hospital!  HUGE!!  HUGE!!  HUGE!!  This burden alone being lifted is a MIRACLE.  We have said for years that if God could just take the crazy fear from eggs, that alone would be a blessing.  Living with that fear, is a burden and weight that is inexplainable!  And had it not been for the “accidental” exposure to egg a month ago, we would not have even tried it.  God is so good and this is just another reminder that He works for our good so many times in ways that we can not see or understand! Thankful that He walks this journey of life with us.  Also, an enormous reminder that he is all knowing and all powerful and can ALWAYS be trusted!

-Hope!  This one may be hard for some to understand, but there is renewed hope that life can change and get better.  Rachel was given two very heavy burdens in life from the start.  Cystic Fibrosis and a life-threatening food allergy.  Several years ago her brother asked her if God could answer one request, what would it be?  Dad and I thought that surely she would say to take Cystic Fibrosis away.  However, to our stunned and bewildered minds, she answered, her egg allergy!!  WHAT???  This made absolutely NO SENSE to us initial.  But as we pondered it, it made complete and total sense at this point in her life and from her perspective.  While CF is VERY ROUGH, and demands a lot of care and work, she sees that as doable right now.  However, her food allergy…another perspective.  This problem faces her at breakfast, lunch, diner, every time we want to go out to eat, every birthday party, every potluck and every social situation that contains food.  Let me tell you…there are A LOT of those!  Holidays where candy is given (Christmas, Easter ect)…we must check, amusement parks…we had to bring food or check, baseball game…checking food, football games…checking foods, roller skating rink….checking food.  Even on her Make a Wish trip and the LONG FLIGHT to Hawaii…we had to bring food for her for fear that she would get a hold of something over the ocean and be in trouble.   While as parents we understand that CF will get harder and to a point someday that is impossible to bear, its burden , currently is very different to bear.  Even the thought of hospitalizations that are so very frequent with CF, a food allergy seriously complicates that.  Because, to many peoples surprise, the hospitals do not often know how to cook for specific patience any better than restaurants.  So, the prospect of the hospital was a scary, unworkable thought as well.  And, to be CLEAR, we are not wanting to go to the hospital ANY TIME SOON!! =) But, to know that we would be able to relax a bit (mom not needing to cook every meal) helps immensely!  So, why did I say hope?  Because, having a life-changing experience with something that we thought would never change, gives us hope that if this allergy mountain could be conquered by the Lord, than prayerfully, so can the mountain of complications from CF.  Whether it comes from the hope for new medications, new treatments, or just God speaking healing and health…ultimately HE IS ABLE!!!  And it too would be life changing.

-One of the first things Rachel said after finishing the test was, “Now we can go to Guatemala!”  We have some friends that are preparing to move there as missionaries.  Our family has a special love and respect for missionaries so it’s something that is talked about, and pray for reguarly around our home.   Rachel has asked over the years about helping in China, and Dominican Republic, and Mexico to name a few.  However, travel has always been something that has come with great difficulty.  Simply packing up the cf stuff alone is monumental in and of itself, but something that can be done.  But the food is ten times more complicated.  When you are away from home, eating becomes cumbersome and a bit unnerving at times.  Trusting others with your child’s life and health takes a huge measure of faith.  So the thought of ever being able to travel outside of the country to a place that English wasn’t primary- was unfathomable.  If you can’t speak the language, or read the ingredient labels…there would be no hope of staying safe with a food allergy.  So the fact that this was one of the first things that Rachel thought about was telling.  She has a heart to serve others, and yet, has had so many restraints holding her back.  It was so wonderful to see her recognize one of them being lifted!

-This one may seem silly to many, but a more relaxed kitchen at home.  For about the first four years after her anaphylaxis response to eggs, we decided that we would just NOT have any eggs in our home.  It was easier that way.  However, at one point we realized that eggs were a pretty healthy breakfast food primarily for mom and dad to attempt to maintain health.  So we began buying eggs again.  However, it often felt like a loaded gun.  Many people have loaded guns in their houses, but hopefully there are practices and procedures in place to promote safety.  We, too had such practices. For example, we only used the large forks to mix up our eggs, AND, only a certain type of bowl to do it in.  Rachel was not allowed to use those.  (Disgustingly, if you have ever looked in the tines of forks, there are often times when there may still be slight residue of food particles stuck in there. That was a concern with the eggs.)  Consequently, Rachel only ate off of our small forks, just in case.  Also, as a safe guard, we only baked things that egg free (french toast, pancakes ect) because it was so much work to make sure that every speck was cleaned off.   Another safe guard was that anyone who handled or ate eggs immediately washed their hands to minimize any issues.  All of these guards may sound silly to most, but it was our way of protecting while trying to meet the rest of our family in the middle.   A challenge that all understood well, and complied with sweetly.  BTW- The other day there was only one clean fork in the drawer (please tell me this happens in your house too) and it was a “big” fork.  She smiled and said, “Can I eat with this?”.  The twinkle in her eyes showed a relief that was precious.  Praise the Lord, I was able to answer…”SURE!”.

 

So bottom line~

Rachel still tests allergic to raw egg white. Her numbers were as high as 30 in recent years, last year dropping to 15 (still extremely high) and this year just above 4 (anything over 1 is allergic, and still a potential for reacting to non cooked eggs).  She did however, no longer tested allergic to egg yolk.  So the plan is to only eat cooked eggs.  Cakes, cookies, brownies, chicken, other breading, and anything that is really cooked well.  We are still to avoid things like meringue, and egg brushed on things, soups, and anything where egg may not be cooked long enough.  (Not sure exactly what those are yet.  It still feels like I need to pinch myself that we are able to add ANYTHING!!!)  The doctor encouraged her to enjoy food, but also to still take it slow to see if her body and taste buds liked it. =)

We will try this approach for a while, and then gather more blood work at a latter date to see how her IGe levels are handling all of this.  If they are doing well, (there is a specific IGe test that will show the likelihood of her body handling a straight egg) we will trial an actual scrabbled egg in the office.  For now, Rachel was relieved that he said the blood test could be down the road. =) Poor girl has had more dr. appointments and sticks than she would like already this fall.  She was happy to wait a bit on the next one.

In a couple of weeks we will also trial the peanuts in the dr.s office.  I REALLY, REALLY wanted to try these at home, but dr convinced me that it was not wise.  Although her peanut numbers were very low, the fact that she has never really had them (accidentally once or twice in 9 years) was enough to bring her into the office.  He said that peanuts are a tricky one because even with low numbers, he has witnessed severe reactions.  So…better to be safe than sorry.

Lastly, Rachel still really needs to gain weight.  She has worked very hard this fall to put on weight, but thus far, we have made little progress.  She goes up a little, down a bit more. =( Hoping that adding some different foods, or at least taking the major fear away from foods will help!

 

 

 

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Costco chocolate cake!! This was our first stop after the doctor’s office. Rachel thought it was AWESOME!!

As I sit here this morning, my heart is full.  We still have many trials and issues facing us.  Actually, we have a cf appointment this afternoon.  But this process is a sweet reminder that God is in control.  He is more than able to handle what comes our way today.

Zephaniah 3:17 “The LORD your God in your midst, the Mighty One, will save; He will rejoice over you with gladness, He will quiet you with His love, He will rejoice over you with singing.”

Praising the name of Jesus today for His love, mercy, protection and grace.  We serve a mighty GOD!

 

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