Two steps in the right direction!

Where there is good, there is always the bad. Two steps forward and one step back seems to be the direction in which our family walks. This week was no different.. at least we did move two forward; it’s the weeks in which we move two steps backwards and only one step forward that make seeing the light a bit more difficult.

First and foremost – Annabelle is doing great right now. Her spirits are high, her cough from being intubated during the procedure is getting better, her energy is great and …. She’s now three. THREE! Can you believe it? A year ago from this time, I didn’t know we would make it to see her second birthday, and here we are celebrating her third and she looks so happy. 

Our rendition of a safe cake for Annabelle:

 

Miracles are happening all around us. We are in no way out of the woods, we are simply treading by the grace of god and prayers that things are going so well right now – but I do believe there is a light and we will have answers for this little girl soon. If we have made it this far, without a doubt, we will finish this marathon with flying colors! albeit, probably a little beat up, exhausted, broke and not quite in the same form we began the race – but our family will come out on the other side with great hope, forever changed and stronger than we could have imagined!

Biopsy Results Are In

Just as a reminder, in the spring when Annabelle relapsed, her Eosinophil count was higher than we have ever seen, she had over 50 eosinophils in the upper portion of her esophagus and more than 20 in the lower portion. The scope and biopsys collected last week are great! (Yes, do a happy dance!!!!!!!) There are ZERO eosinophils in the bottom of her esophagus and more than 10 in the top. This is the best news. It means we’re gaining control of the disease. The horrible drugs she is on and little food she eat, is actually a cocktail that is working to protect Annabelle’s GI system!

So for now, we cannot make any changes to our current treatment. Although the Eosinophil count in her esophagus is very low, it’s still a failed scope and means the eosinophilic esophaghitis is still active. We will continue the prednisone twice x day and continue the limited diet. We cannot introduce any new foods, but we also are not losing any foods! (Again, HAPPY DANCE!)

Now for the other side of these results. While we continue to do the happy dance, there is also another perspective that isn’t being ignored by our doctors.

When Annabelle’s labs were performed a few weeks ago, they indicated her immune system was struggling / fighting. Her eosinophil count was higher than we have ever seen in her labwork and secretly we prayed the biopsys from her esophagus would reflect those high results. They didn’t..which is likely a result that the treatment we have been doing specifically for her esophagus: pouring steroids down the kids throat twice a day and not allowing her to eat much food. This seems to be the key in keeping the eosinphils out of places they shouldn’t be (her esophagus). The problem though, if the eosinophils are NOT high and present in her esophagus, where we have typically found them… then where are they?! Has the disease spread to other areas of her body? Is her immune system being challenged by another form of auto-immune disorder we aren’t recognizing? Likely, yes – which is what we have assumed all along.

So what does this mean?

The biopsys from this scope have helped us. They’ve proven that Annabelle’s system is not only targeted by an Eosinophilic Disorder. They’ve proven yet again that something far larger and global is happening within her tiny body and Eosinophilic Esophaghitis, while terribly dangerous and life-altering, isn’t the main aspect we should be focusing on. We need to determine what is attacking and what global disease or disorder is Annabelle battling that could be the root cause to all her problems.  

What are we going to do?

With all our labs, old and new information, and our biopsy results – we have contacted the absolute best hospital for children with rare auto-immune disorders. They heard our story, reviewed Annabelle’s records and asked to see her immediately – in fact, they wanted to see her this week. As must as we absolutely would love to make that happen, this trip is going to require time away from work, flights, hotels and lots of travel… we couldn’t commit to a date this soon. We scheduled for the last week of October. They are so very eager to see Annabelle and help our family. I have spent numerous hours in the evenings making arrangements with their medical staff and providing necessary documents and test results. I feel like we have so many pieces of the puzzle and this last scope was just what we needed to prove what our intuitions have been guiding all along. Annabelle will be seen with one of the best Immunologist in the country and he will lead the rest of her team consisting of Gastroenterology, Allergy, Genetics, Endocrine and Neurology.

Our hearts are beyond thrilled, the anticipation and excitement for HOPE for our baby girl is more than you can ever imagine. The only feeling I can relate this monumental high from are those moments when you see your child for the first time and you fall so deeply, passionately in love that you could scream from the roof tops how happy you are, how much you are bursting with love and for how your life has just changed. That is literally the feeling we have right now. I have yet to look at my daughter without instantly wearing a smile because now I know, there is hope.

• There will be promise for light in our family. Finally, we are going to learn what is happening to our daughter and I will learn how to safely continue to raise her and retain the smile across her innocent little face.
• Finally, I can explain to the curious and worried big sister, what is truly ‘wrong’ with her sissy and I can help her understand what it means. I can teach my 5yo how we can help her.
• As parents, we can finally answer to our far-too-mature 3yo, why her little body hurts, why she cannot go outside, why she must wear a mask, wear a tubey, become a pin cushion, and why her little legs just don’t work when she gets too tired.
• Hopefully I can begin to understand her pains and irrational body responses to simple childhood things like an ear infection.
• As a mommy, I can comfort my baby and genuinely begin to understand what hurts and why.
• I can comfort and protect my daughter and not constantly fear that I will accidentally hurt her bc her body just doesn’t respond like a normal toddlers should.

These fears, wishes, worries and hopes that flood our family and haunt AK and I as parents are the only prayers we wish to be answered, they’re all we want for our family right now.

In one month we will travel hundreds of miles away, with no questions asked and only one simple focus: Hope for Annabelle. The light we have been searching for years, the prayers you all have silently prayed to help our family, it’s visible and I couldn’t be more blessed and humble to have you all supporting and cheering our family on. Thank you so very much. Sincerely, from the bottom of our hearts, thank you!

If anyone that has traveled for medical purposes or has any suggestions or helpful advice, please please share. I will likely be traveling alone with Annabelle due to the costs of travel for both AK and I to go together. This trip will cost our family tremendously and I have no idea how to begin making arrangements:

• Flights
• Hotel
• Transportation when we get into the city
• Unpaid, lost time from work
• And the possibility of insurance denials since we are traveling out of the state.
• Without a doubt, the costs for tests, procedures and consultations with a slew of doctors – praying with the help of some type of insurance coverage.

 If you would like to help or support Annabelle, her benefit and fun night out is planned October 4^th!! Please, join us and wish this little girl all the luck in the world as she travels towards the light at the end of her tunnel and finally gets answers she deserves. If you need directions or more information, email me and I am happy to share: a.bishop08@hotmail.com

Thank you all so very much, from the bottom of our hearts we love, pray and thank all of you for your selfless support for Annabelle and our family. We hope to see you all very soon and will continue to keep you up to date as we move forward!

xoxoxo