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Amelia

Amelia Rose Walsh was born 11/2012 in Oklahoma City.  She was full term and it was a normal pregnancy. She left the hospital without issue, and passed all her newborn testing.  Amelia was very difficult to feed initially and we had a hard time with her weight.  She was also a very quiet and easy baby. She never really seemed to want for anything and we also noticed that she never seemed to make eye contact with us. There was no cooing or staring at our faces like you read about in baby books. We then moved back to Massachusetts when she was 6 months old.  She was seen by a new paediatrician and again, delayed on a few milestones but still no huge concerns that she would not catch up.  When she was still not sitting by 9 months, we were referred to Early Intervention (EI), Neurology, Ophthalmology and for a hearing screen. It became clear that she had more then just some delays. She had low tone, absent reflexes, some visual difficulties and several other features common to BRS kiddos. Thus we began A LOT of therapy. As much as we could do, we did for her. We started her therapy at 10 months of age.

She had an extensive EI team with PT, OT, SLP’s, Feeding specialists, behavior analysts, and developmental specialists working with her as well as a teacher for the visually impaired.  She had home therapy and we also did private PT as well. 

We were so lucky to have found Mary Evens, a seasoned and incredible PT who was local in our area but had come from the Emerson Hospital Center for Physical Rehabilitation & Sports Medicine.  She had so many amazing ideas and was really who guided us in many ways on all aspects of her care.

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Mary was the driving force for us to push Amelia towards new therapies and specialists.  She was always confident in Amelia and always believed she would walk at some point. It is always comforting to have a professional reaffirm your faith in your child, and even boost it at times. We were never afraid of failure and would always try different ideas to help Amelia reach her goals.  We tried Kinesio tape across her trunk, which worked for a while, but when Amelia developed an allergy to the tape, we switched to a SPIO compression vest for support.  Both were to help here with her trunk support and were moderately effective. 

Amelia began crawling at 2 years old, which was a terrific moment for her, and us.  Our goal for her is to be as independent as possible and meeting small goals along the way is a tremendous boost for everyone’s confidence.  Her next goal was the pull to a stand.  I built her a sensory table with a bar on it to encourage her to pull up and play while standing as often as possible.  Her uncle made her pull up bar as well so she could pull to a stand.  We were all about making adaptations, her uncle also helped us fashion a rolling scooter board with lots of pink duct tape pool noodles and velcro so we could strap her on her belly and get her to pull forward with her arms to scoot across the floor.

We also encouraged her to walk while pushing a stroller, walk along parallel bars (I made some with PVC pipe after seeing how well she did in PT on them), walk on treadmills, with a cane, etc.

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Before Amelia turned 3, which is the age where she could begin integrated Pre-school, she also went to hippo therapy (horseback riding) and aqua therapy (OT therapy in a pool). The hippo therapy was very helpful in strengthening her core muscles.

Along the way she has also had to wear different types of orthotics on her feet. She was originally in SMOs (Supra-Malleolar orthoses), then two sets of AFOs (ankle-foot orthosis) and currently back in SMOs.  She was also casted once because here heel cords were tight.  Each brace was worn for about a year until insurance would approve a new one. Once Amelia became stronger, she was sized for a gait trainer. We put her in it as much as possible.

We still want to show her that the world upright is a much better place. We took her, with her gait trainer, to stores, parks, strolls around the mall, home depot, etc. The more we push her the better she does, though she certainly protested from time to time.  Amelia always improved developmentally; she has never regressed significantly. It has been a long journey for her to reach her goals.  

Amelia was in a very good preschool program in Massachusetts, one that had PT, OT, and speech work with her, one-on-one, on a regular basis. The curriculum was ABA based and her teacher was fantastic. She really shined when she got to that school.  Amelia really enjoys being busy and being around the other kids. They incorporated breaks during school where she could walk the hall, deliver mail to the office, etc. She was integrated about 50% of the time after a year. That time spent walking upright and weight bearing was tremendous for her progression. It was becoming increasingly difficult to focus on her walking at home as we had two other daughters join our family over the years of her journey. Her time at school and in therapy was where she got most of her exercise.  Amelia’s grandfather was a huge help for a time, as he would watch our other two daughters while I took Amelia to PT and speech on various days.

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We recently moved from Massachusetts to Minnesota. It took some time to establish all of Amelia’s various services and in that time she made minimal progress. Her heel cords became a little tight as she was not weight bearing as often. However, she is now fully established in all her programs and recently took 12-15 independent steps on her own at school with her PT, DAPE teacher and her paraprofessional. She walked by herself!  They were just as excited as us, her progress and milestones are celebrated by so many people that believe in her. There has been a whole village helping to get her to this point.  It took hundreds and hundreds of hours of work and elbow grease. We know there will be thousands more, but reaching this goal was amazing. We know that while Amelia has limits to what she can do, we refuse to accept them and we will push and persevere. Because that smile is worth everything.

- Robert Walsh