Ayla ’s Story

Site created on December 29, 2022

We find ourselves in a place we have never been before and as things have been progressing we started this site to make updates, information and prayer needs public.
Around a month ago Ayla would have random muscle weakness in her legs. Often at night and it would come & go quickly. The week of Christmas it happened a bit more frequently but Christmas Day it was on & off all day and more severe. Monday , December 26th we went to our PCP who immediately sent us to Lancaster General Hospital. Where we spent Monday night & Tuesday. She had extensive blood work and MRI scans which revealed nothing concerning. The random paralysis episodes continued but she was stable and they sent us home with close follow up and instructions. One of which is seeing a Pediatric Neuromuscular Specialist as soon as possible as outpatient. Yesterday she had an episode that went up into her back and we then went to CHOP. After hours of observation and more blood work the same was determined. Medically she is in excellent health. However, episodes continue and are lasting longer. We have no answers. Currently we are at home. We watch her close & are working on the specialist appointment and pursuing a Lymes testing as well. We will post more updates and pieces of the story as we are able. Thank you for being here ❤️

Newest Update

Journal entry by Annette Stoltzfus

There was a summer in my young adult season of life where I lived on Kejick Bay, a small island in Northwestern Ontario. We would walk to an area known as high beach which at the top was an amazing view, at the bottom was the lake. Separating the two was a very long and steep hill of sand. Going down was easy, climbing back up was a workout. I remember the first time starting off thinking “this isn’t so bad” only to learn walking uphill, in sand,  is no easy feat and the top was feeling like a long way off especially since every step took great effort and we slid back a step for every two we took. Progress was slow and it felt like we weren’t making any but eventually when we stopped and looked back we could see we were actually getting somewhere. Finally with burning legs we reached the top. One step at a time. This visual is how our last month has felt in our family.  Ayla was at a plateau, there was not regression, nor was there obvious progress if we just looked at life the in the moment. When we could look at the long term past two months yes, she has come a long ways. Physically she has gotten very independent again. She now has times where her legs get stiff & weak even shaking but no longer does she have complete immobility in her legs & back. Immune system has definitely been compromised in all of this and she has dealt with several times of sickness. Two weeks ago we saw a shift in her and more progress than we had seen in a long time. More energy and in a more stable place emotionally as well. This was so encouraging for all of us! Ayla has always been quick witted and free spirited and seeing her have outbursts and emotional meltdowns very out of character for her has been a painful piece to watch and walk with her in. She is much happier and herself again. The biggest change I saw was in her eyes. They are getting the warm Ayla sparkle back she is beautiful. I had not noticed this until it was mentioned but her therapist noted how her skin color is looking so much better. Healing is happening in her heart & in her brain and it just cannot be hidden. 
We often get asked what are we doing medically or holistically. 
A month ago we went to a functional medicine doctor and are still waiting on the bloodwork results from that visit. It is an extensive test and will give information on many different areas. We chose this to see if there are levels where she is low that could be helped with nutrition or supplements. Also because over & over Lymes kept being mentioned and we wanted to do diligence to finding that if there is any in her body. 
We added Magnesium to her body both in a topical cream and chewable form. 
Reflexology massage. 
Therapy. A lot of therapy. This is where we are seeing the greatest healing happening in her. Verbalizing our hearts pain and fear and finding freedom through that is a powerful thing and watching my six year old show up and do the hard work when she could have chosen to shut down and not go there has not only been as a parent been amazing but so inspiring.
In some ways the last two months are a blur and December 26th feels like yesterday and in others it feels like we have lived months of life. Over and over we have been shown kindness by so many of you. The messages & the gifts, they all have meant so much. Many times it has been the encouragement and prayers that have given us the courage to keep on going each day. 

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