Sam I Am 💗

 

I haven’t posted on this blog in years. I kind of forgot I even had it! I have had a few people reach out and I wanted to write this out to let those who care know what has been going on and to have it all documented for myself💗 

  In late November Sam fell and hurt her knee. Not a significant fall or injury. Throughout the following week we noticed she was walking differently and fearful to play volleyball with her team. She also didn’t want to play her beloved soccer. By the end of the next week she was showing signs of weakness in her legs.

 When she spiked a fever during a sleepover and seemed tired the next day we decided to take her to Children’s. While there she had a fever and the on call doctor being an Oncologist was very concerned with how she was presenting. He ran many blood tests and expected to see bad results. As we waited in the waiting room terrified we tried to calm Sam who was completely distraught after having her first ever blood draw. Thank God the bloodwork came back normal. Even surprising the on call doc. We were sent home counting our blessing without any answers, but happy with what had been ruled out. 

Over the following week we noticed she was walking less. She was unable to navigate stairs normally and wouldn’t engage in any activity that required mobility. She stopped playing volleyball and soccer and was sick with worry going to practice even to watch. She struggled to go to school and was constantly afraid of something happening, of falling and hurting herself or being away from home. During this time she also ended up with a stomach bug and got sick at school. We watched our happy silly girl become a shell of herself. She cried morning and night, was afraid of anything and everything. Couldn’t step down the front step from our house and feared walking next door. She struggled getting in and out of the car. She looked frail. We tried to do Christmas things like go to the museum, but she was scared to walk around. Scared of the people, crying and just wanted to go home. Everyday it got worse.  She started talking to the therapist at her pediatrician. She saw her a few times and she suggested having her see an Occupational Therapist as well. 

At the start of Christmas break her fear became paralyzing. She was moving very slow, her body was stiff and the movements she did make were rigid.

She struggled with normal tasks like to get in the bath, off of the toilet, stand up, sit on the ground, bend her legs. She feared standing up at all and walking was incredibly hard to get her to do. When she did walk her gait was so incredibly off.  She had her OT assessment and continued therapy. The days got worse and she was afraid to eat. We spent our days forcing her to eat or drink in small amounts as she feared vomiting If she ate. Anyone who is familiar with ARFID understands how incredibly awful this disorder can be. She was losing strength in her legs and cried from fear off and on all day. We found small moments of joy over Christmas, but it was all consuming for not only Sam, but our whole family. We are so blessed that we are surrounded by people who love us so much. Sis took over Christmas dinner with a days notice. We spent it together and it really was a great day.

The whole season was different than we had expected, but it was the best it could be and we were together.

 Throughout the weeks Sam had a spot she felt safe on, on the couch and we had to make her get up and walk a “lap” to move her legs. She cried to have to get up and we had to help lift her to her feet. Grandma and Papa came over to get her up and talking and played many games of Sorry and Uno. 

 I was in constant contact with her pediatrician. She assured me that physically the doctor had ran every blood test. Thank God I have a dear friend who is a doctor and he was able to assure me and calm me down when my own fear set in. We felt helpless and like we had no direction. 

After a month of not knowing what was happening we were relieved to get a diagnosis. Functional Neurological Disorder (FND) also known as Conversion disorder. We explained it to Sam that something in her brain misfired and her body and brain weren’t communicating. This disorder has caused physical, emotional, mobility and sensory issues. We aren’t sure if underlying anxiety caused it or if it caused the anxiety. We do know that the last few years of trauma surrounding Wyatt’s injury could have been part of it. When she hurt her knee she immediately went to Wyatt’s injury. She and I spent a lot of time talking about that with skills we both learned from her therapy sessions. 

With the help of a friend and Sam’s fear of Children’s Sam started OT at ABC Pediatric therapy. She has been able to start to trust her body again,  We also discovered using sour spray to distract our brain when we felt overwhelmed.  As of the beginning of January it had been over a month since Sam jumped, ran, walked up the stairs without holding on, stood up without help, or did any physical activity. As she continues to deal with the physical aspects, but we have seen some amazing changes with her too. One morning when she woke up it was like a switch had flipped. She woke up happy and wasn’t crying. We heard her laugh and she had a little more pep in her. I heard her singing along to One Direction in the car. Things I had once taken for granted.  Tj and I held our breath afraid to say anything! She has thankfully been our sweet girl since. She has woken in the morning smiling instead of in tears. She has laughed and been able to enjoy playing with her toys. 

She has been able to go out in public places, which made her panic a few weeks ago. She has been eating chicken nuggets and Mac and cheese! After weeks of barely anything she has some pounds to pack back on. She has been able to get into the bathtub again, which caused such panic attacks she could barely breathe a few weeks ago. Slowly, She is starting to use her body again. After three sessions of OT with her beloved Sarah, she started to trust herself again. Last week she jumped and hopped in place. Tj and I felt like she learned to walk again. Anna and Wyatt cheered with actual joy. Sam was so proud of herself we sent videos to grandma, papa and sissy. 

She has a long road of recovery ahead of her over the next few months. We hope and pray that we continue to see improvements and we are so incredibly thankful to have our girl back smiling and happy. She has OT twice a week for the next few months and will add PT into that soon to help her to correct her gait and gain more strength in her arms and legs. We continue to work with her therapist and pediatrician as well. As of mid January she has had 5 sessions of OT. She loves going and has been working so hard.  What she can’t do one day she will come back and show Sarah she can do it the next visit. She has been able to jump on a trampoline, bend her knees, do log rolls and walk backwards. This week she kneeled and crawled!

These are huge fetes from a few weeks ago when she could barely walk, couldn’t bend her legs and would actually pick her leg up with her hands to get into and out of bed. She has been working so hard to use her muscles. She still lacks a lot of muscle tone,lost over the last months, but her OT is optimistic she will get it back with OT and PT. 

A few weeks ago we went to the mall and made it to 2 stores. She struggled walking. Today we walked almost the whole thing and she happily spent my money on skin care and new shoes!

The differences are astonishing seeing how far she has come. Thanks to her good friend, Stella, school has been so much better too. Mornings were tough and there were a lot of tears and fears. Last week we asked if Stella (and her brother) could come in our car to school. It has been a game changer and made our mornings full of smiles! 

She has worked so hard both in therapy and outside of therapy. She made a big decision to go back to her soccer team as a “coach” to cheer them on. The last game we attended left both of us in tears and absolutely broke my heart. She sat at a table just broken and in tears. She didn’t even want to see her friends. This time she sat with her team and coached and cheered. She hugged her friends and was so warmly welcomed. This time I wanted to cry happy tears as I saw her walk to the box across the field. 

She has started eating all of her favorites again! Not eating may have been the scariest part of it all. We watched our girl lose weight and color in her face. A few weeks of very little food make a big difference in someone already thin. We are so happy that she is back to chicken, Kraft Mac and cheese, fries, cucumbers, ice cream cake and fruit roll ups! Not everyone understands how awful it can be to see your child afraid of food, having them come through it and be happy to eat is a huge win! 

The last 7 weeks have been a bit surreal. Each morning I brace myself that we go back to where we were, but pray for continued healing and happiness. Our girl is amazing and resilient and has come so far! 

We told Sam we know she will be back to running and playing and doing the things she loves. In the meantime Please keep our girl in your prayers!