Sam’s journey update! A special Graduation

 As I sat in my car overlooking the windows to ABC Pediatric therapy I was overcome with emotion. Six months ago we walked through the doors with our frail, sickly daughter who feared everything.

When Sam started OT in January she couldn’t function. After a month of low grade fevers, leg pain and exhaustion she started with new symptoms.  

 . She was paralyzed with fear, unable to eat, unable to walk or move freely. She had lost the ability to run, jump and walk normally. Terrified of stores, restaurants and strangers. She lacked the ability to walk up stairs and would freeze with fear attempting to go down them. She couldn’t sleep alone and seldom was able to be alone at all.

 She struggled with touch and noises. She lost her balance easily and was unsteady. She was a shell of herself And spent most of her time in one single spot on the couch. 

Occupational Therapy was recommended by her therapist who saw what she was dealing with was much more than anxiety.  Meeting her OT , Sarah, changed so much for our family. As an Occupational Therapist her goal was to help Sam retrain her brain and muscles, while allowing her to play. For our family she gave us hope, searched for answers and always made things the best they could be for Sam. 

In the beginning of this journey they worked on sensory skills, moving past fears and using her body. For a few weeks she brought her stuffed animals and mom. For a few months mom went back and eventually she went back on her own. She worked on her balance, her muscles, her tactile sensory skills.

When we started Sam couldn’t sit on the floor. For weeks Sarah helped her gain the confidence to sit on the floor and get up using games and toys. She never rushed her, never made her uncomfortable and always was a positive light in such a terrible situation. 

For Four months Sam came twice a week and then the last few months once a week. January through June working hard to get back. 

OT has become a safe space for Sam throughout all of the trials the last year. Even with getting better and then getting much worse again, therapy was something she looked forward to weekly. With multiple specialists visits at the hospital and never finding an actual diagnosis, Sarah has always been proactive and helped explain the parts of OT and how it would help Sam. When we found Sam had very high inflammation markers, swollen knees  and needed Naproxen to help her Sarah was supportive and continued to keep Sam moving forward. 

Sam has come happily and confidently each step of the way.  It has been so rewarding watching the changes and successes she has accomplished. It has means more than I could ever explain.

Occupational Therapy was the service that Sam went to ABC Pediatric Therapy for, but she got so much more than that. She found herself again. She trusted a stranger when she didn’t even trust herself. She formed a relationship that I have promised her we won’t let go.

 

Today she walked into her once a week OT for the last time. 

She and I both can’t help but to be a little sad. This place has become a second home to Sam and she absolutely loves all of the therapists she has come into contact with each week. She has gone from her lowest low to now her highest high with the help of Sarah. There have been multiple doctors, specialists, medications and therapists involved in her journey but, Sarah has made her feel heard. She has been a safe space, her happy place and a part of her life that created a positive spot even on her hardest days. 

As a mom, I will be forever grateful for having someone listen to me. When I was scared and things were so unknown, she listened. She researched and searched for answers. We worked together to help Sam the best we could. 

37 therapy appointments. 

Now today is Graduation.

The end of a chapter we never imagined would be part of our lives. 

Sam may come back for sessions this fall to help her through changes or God forbid setbacks. 

Regardless we know Sarah is stuck with us forever. So grateful for this therapy office right down the street that we never really noticed before. 

Life is tough, but this girl is tougher. 

So proud of our girl and all that she has battled through and accomplished. 

She is back. 

She is running, jumping, swimming and 100% her sassafras self. 

 

Outgoing, friendly, full of energy and a complete goofball. We are so incredibly thankful everyday to have our Sam back. For awhile we were scared we would never see her again and count our blessings every single day. 

She has bloodwork, ultrasound, eye appointments and her Rheumatology appointment coming up as well as an appointment at Linder center with a doctor who acknowledges PANS and PANDAS tomorrow. Please keep the prayers coming. 

Few more steps back for Sam

 I have kind of been hesitating to post an update on Sam. It seemed we were on a good track and she was doing better, until she wasn’t. 

Last week was a full moon. She had 4 appointments 4 days in a row and it was Emma’s birthday and Tom’s anniversary. So, it may have been a perfect storm of stress and sadness. 

Sam has still been working so hard. Now adding Physical therapy to occupational therapy each week, as well as daily exercises at home. She has seen her therapist, Kate, and Dr. Holmes. She was doing much better physically, being able to do things at OT she hadn’t. She was doing better with her fears as well. In the last two weeks her gait is off a lot again. Navigating the stairs has been more difficult, General fear and not eating have all come back with vengeance. We have tried to adjust her medicine and have been able to work with her OT and therapist. 

I am continuing to try and find the best and most appropriate help for our girl. After 4 months we aren’t seeing much improvement. We have been working with the FND diagnosis, only to find out this week it can only be diagnosed by a Neurologist. 😳. So, in order to get into Behavioral Psych at children’s we need a diagnosis from a Neurologist. I found a Neuro doc who works with the movement disorder clinic and Sam will see him April 5. She will also start in the Eating disorder clinic being treated for ARFID- Avoidant restrictive food intake disorder on March 27. 

We are at a loss for our girl as she has lost muscle tone in her legs and is so weak. Is the weakness from lack of use or is the lack of use from weakness? Is the anxiety from FND or is it not even FND and something else is going on? I have been doing some research and just reached out to her pediatrician about a possibility of a vitamin b12 deficiency. We know something is going on. Our girl hasn’t been able to walk normally since November. She went from running, jumping and playing multiple sports, to barely able to walk. We have been to the hospital, the doctor and 3 different therapies. Praying the next few appointments can bring answers, with simple treatments and nothing scary or “bad”.  

We have been purchasing skincare and makeup each week as a prize for hard work at therapy. We have found her a piano teacher to start next month. She is so frustrated and sad at what she can’t do, we just want her to find joy in things she can do. We work everyday to find high calorie foods that she will like and try to enjoy.

We have started vitamins to hopefully offset those she is missing in her diet. We pray that someday she just wakes up and is as she was back in November knowing that isn’t realistic, we will continue to research and work to figure out what is going on and how we can help fix it. 

Big Steps Forward

 Wanted to post an update on Sam’s journey with Functional Neurological Disorder. This girl is a fighter and has been resilient and brave with each step.

She has continued going to OT twice a week and working hard at home. She loves her OT Sarah and reached a big milestone last week of going back on her own with Sarah for therapy. Throughout this journey having me along has helped her to be successful and we knew it was important for her to gain the independence and confidence to go back with just Sarah. Last Friday she did it! 

She has been doing really well at school. This week her friend’s mom took her to school two mornings! This was a huge accomplishment coming from where we were a month ago too! She has been able to jump on the trampoline at therapy and has been climbing and using her body more! Things that used to come naturally are now major wins! She has been working so hard. 

Today she had her PT evaluation with Miss Shelby. She worked so hard and used a lot of muscles! Miss Shelby is confident she can help her get her strength, coordination and muscle movement back again. She will start going to PT weekly.

 

 Her goal is to get back on the soccer field again. She just wants to be able to run again! 

  

Throughout all of these trials, Sam has been such a hard worker. We are so thankful that for the last month we have seen her shine again and she has been her kind, funny and silly self. Now we just have to get her body where she can use it as she wants again!

 

She has a lot of work ahead of her still. Now 3 days a week of therapy, sessions with children’s and pediatricians. She is determined and she will get there!

! Praying for strength and perseverance for our girl!