Two steps forward….

 Wanted to post an update, for those who have been keeping up and for myself. FND (Functional  Neurological Disorder) is a tough diagnosis. It has symptoms emotionally, physically and cognitively. It doesn’t have a “cure” or easy fix. It takes time and therapy and work. Sam has been putting the work in, but it has been hard for her and she is still struggling. Thank God nowhere near where we were in December, praying we never go back to that. We have seen some incredible gains. Her personality is back most of the time and she is doing so good💗

But, it is hard. Anxiety is so hard. Being fearful that every ache and pain will lead you to the bad place you were. Trying to relearn things your body once did easily is so hard. Sam has been doing amazing. We are so proud of all of the steps she has taken dealing with FND. It is hard. It feels like it has been an eternity for her and there isn’t really an end in sight. This can be frustrating for all of us, but especially for Sam. 

She has continued to work so hard in therapy. Working through her fears, imbalance and deficits in her strength. She is usually a little fearful going into OT and proud and strong coming out. She is proud of the work she is doing. We are beyond proud. 

She has had a few setbacks. The anxiety and fear have crept back in a few weeks ago. Recognizing this mom has tried to have her talk through it, but she is just like her mama where talking it out usually means avoiding it. She has been working with her OT, Sarah, to acknowledge and work through the things upsetting her. She has some papers we go over and I’m proud to see her trying different ways to calm her mind and body. 

I don’t think I realized how often she was struggling over the years. Things that I didn’t know were anxiety and sadness coming out differently as behaviors. She is talking about this now and I am so proud of her for sharing with me and so incredibly happy she is feeling better about it now. 

We hope she can have her physical therapy assessment in the coming weeks. As her mind struggled with fear, her body fell in line. Her gait seemed a little more off. She wants so badly to run. She wants to play soccer again. A few weeks ago being a “coach” for her teams was fun, now it is not a positive in her life because she just wants to play. I told her we will get there, but I can’t tell her when or how and that is hard on both of us. 

 OT has given her the gift of confidence, working on balance and using her mind and body. Twice a week she works to get back the skills she needs. She will continue therapy at her pediatrician as well as start with Children’s telehealth. She will start PT.

We had a check up at her pediatrician and she is down 8 lbs. we imagine that is less of a loss  than where she was in mid January. we know that is from the time she wasn’t eating, but hate that food may become a problem and pray that she continues eating and enjoying her food. ARFID is an awful disorder on top of everything else and we pray she is able to eat without fear as time goes on. 

School has been going great. 

So thankful for her friends who have been her saving grace.

So thankful for an empathetic principal and teacher. 

 So incredibly thankful for a school nurse who Sam absolutely loves. 

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This girl has been through so much. The fear of sickness and “getting worse” is her trigger. Feeling like she can’t do the same things she did when she “got sick” because it may happen again. We are working to know that we are not in charge like that, I am trying to teach myself as I help her understand. Medical Anxiety is awful. In a family like ours where some really bad stuff has happened, it’s understandable. I never knew that it would help me to see things differently trying to help my girls see the light. 

This isn’t an easy fix. Our girl needs prayers for perseverance and a positive attitude to get back to where she wants to be again. We pray every day we will get there. Please keep the prayers coming!