The Story of Alexis

June 23, 2018 amputation, Central Nervous System, cerebral palsy, Family Stories, hip dysplasia, June 2018 Feature - Orthopedic, lipomyelomeningocele, missing arm/leg, Orthopedic, prosthetics 0 Comments

When we were matched with our sweet Alexis we were told that she had hip dysplasia. Once we were back in the U.S. and we were able to take her to see a specialist, we found out that she has a form of spina bifida called lipomyelomeningocele, which means a fatty mass had attached to her spinal cord causing some deformities to the right side of her body.

She was unable to use her right leg since it had no sensation, a right knee deformity (which included her knee’s inability to bend), and a hip socket that was too shallow for the head of the femur resulting in her right hip to dislocate. After several discussions with multiple orthopedic surgeons and lots of research, Alexis had a right hip disarticulation last year. It is basically an amputation of her entire leg. It was definitely a decision that weighed heavy on my heart but watching her now after not even a year since her amputation, it is clear to me that it was the best decision for her.

When we first brought Alexa home from China, a little over three years ago, she could only stand on her left leg for a couple of seconds while holding on to something because her muscles were so weak. However, Alexis is a very determined little girl. Her goal since before her surgery has been to be able to walk and not have to use her wheelchair. After her amputation was done, we started to work on building her standing tolerance. It didn’t take too long for her to be able to achieve this goal and stand for over 10 mins at the table doing an activity without breaking a sweat. We proceeded to have her learn to balance on her left leg without any devices. She again blew me away, surpassing each goal I set… 3 secs… 10 secs… 20 secs… now standing for several minutes without difficulty – even hoping about 15 hops.

We also began to have her walk with a walker but quickly transitioned to crutches. Even though she had some tumbles, she never gave up. She is now able to walk on grass, over rocks, over mulch, and on sidewalks using her crutches. She is actually asking to be in gymnastics just like her brother and we are in the process of placing her with a gymnastics teacher.

Alexis also sees a prosthetist. Instead of a straight fixed prosthesis, he decided to make her an advanced hinged prosthesis. The physical therapist we met with after her amputation had to retract his statement that Alexis needs to start out with a straight fixed prosthetic leg after watching her walk because… she rocks! She grew out of her first prosthesis pretty quickly and the prosthetist is in the process of making a new socket and lengthening the other parts. We are hoping to get her new prosthetic leg sometime in July so she can continue practicing with it.

I will always remember the first time I held Alexis in my arms. Every detail of that day will be forever with me. She scowled at us for the first two days. Haha! In one of the first blog posts I wrote about her, I described her as a smart girl with a feisty personality. That is so true still to this day.

Alexis has taught me so much. She has never once said that she can’t do something or that something is too hard. Instead, the words from this beautiful four year old are words of hope and believing that all things are possible. She is so full of determination and, even though it is very early in this journey of hers, she just never gives up.

She is always eager to show her friends and family the things that she has been able to accomplish, and she does it with gratitude. She reminds me daily to choose joy.

– guest post by Maria

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