Sergio, our older son, was always early in his gross motor skills development. Before 11 months he was perfectly walking and by the time he turned 1 he ran all around. We were sure thrilled when he met all these milestones, but there were many other 'minor' accomplishments that we just took for granted. I never noticed when was he able to bring himself to sitting or when he started to side-sit. I didn't even know that was such a major accomplishment until little Lucia came to this world and we met Marcy.
Lucia had a major in utero stroke that affected the territory of the left middle cerebral artery of her brain and thus caused her right hemiplegia cerebral palsy. We were devastated and as any other parent were desperate to search for more certainties about her future. Was she going to talk, walk, run, jump, play with her brother? We live in Ecuador and medical resources (exams especially) are still very limited so we didn't think twice about bringing her to the US for a second opinion. We were blessed to end up meeting a wonderful neurologist at Yale, who through her experience tried to transmit us some degree of peace and positiveness about Lucia's future. She gave us the plan of action for our new life: therapy therapy therapy. She should start with Physical Therapy and Occupational Therapy and in the near future we were to evaluate Swallow therapy and Speech Therapy. Aqua Therapy was also mentioned.
Neurologists, psychiatrists, developmental pediatricians, orthopedists and therapists all agreed that the degree of cognitive and physical damage is completely unpredictable. We were given the 'most likely' answer for all of our questions regarding her future and to trust that the power of brain plasticity in little people will do its magic over Lucia's brain. She will most likely walk, most likely talk, most likely will not have major cognitive problems. As of now we know for sure that the movement of her right side of her body is affected, hand and foot.
We went back home and started physical therapy, swallow therapy and sensory integration therapy. Despite having seen all the doctors and therapists that I could possibly think off, the search for answers continued. I think now it is just a new state of mind. In this search, a friend was kind enough to share her wonderful experience with her daughter and the ABM method. We contacted Marcy and decided to take Lucia to NYC for an intensive therapy plan of 14 days, two sessions per day!!
Lucia was working very hard in all her daily therapy sessions in Ecuador. Most of the days she had two sessions per day. She was sitting unassisted with very good balance since she was 6 months old, but that was pretty much all that she was able to do. I would put her into sitting and she would play in that position without moving one inch. Despite all the therapy she was having, she wasn't improving much. It was truly heartbreaking to see her cry through her lessons as they tried to make her roll over to one side and roll over to the other side, like a puppet pushed side to side. They told us that with repetition the brain will learn to do the stuff we wanted. So we spent our days rolling over and bearing weight and opening her hand and stretching her tiny muscles to prevent contractures, but very sadly, we saw very few improvements.
Unfortunately, again things were not as planned. Lucia has come to teach us that planning is just temporary, and that there is no better plan than the adjustable plan!! Lucia developed a severe form of epilepsy called infantile spasms and without thinking twice we were back at Yale treating her for this terrible seizure disorder with a very strong medicine. We were again devastated. The medicine side effects could be very harsh on Lucia and she was most likely not able to tolerate therapy because of the irritability it causes babies. We canceled her scheduled therapy sessions with Marcy and were back again in a dark blurry spot with very little hope.
Lucia reacted very well to the medicine, her seizures stopped and her degree of irritability was perfectly manageable by mama and papa and grandmas playing and holding her throughout the day. We emailed Marcy and asked her to have us back!! The neurologist gave us permission to go to NYC as it was within a reasonable distance from New Haven and we could bring her back if something major happened.
Meeting Marcy in the middle of this nightmare was a relief for Lucia and me, and for all our family. Everything was unexpected since we first met her. For the first time, we were told it was important to make Lucia feel comfortable with the therapist's presence, instead of throwing her into a strangers hands to invasively make her body move. Lucia and I moved gradually towards Marcy, exploring some wonderful old school toys and these new hands that were going to work with her.
Lucia was not easy to work with as she was very resistant to being put in a laying down position, either on her back or on her tummy, but Marcy was able to find her way through. For the first time I felt that they were working with a little person called Lucia with a brain, a heart, a personality, not only a diagnosis of CP and spasticity. For the first time we were not invading her body and her soul, but with her permission Marcy was helping her discover that movement was possible. Lucia was pampered during therapy! If Lucia was having a bad day, Marcy was so wonderful and would even allow Lucia to nurse while she worked on her. One by one our family members came with me to her place to meet this wonderful woman who was finally helping Lucia to understand that she can move! And was doing so in such a loving way!
She slept a lot in between lessons as she was processing all that she was so magically learning. The first 10 days of lessons passed by very fast and we saw major changes in Lucia. She was no longer feeling frustrated for her lack of movement and thus stopped biting a lot! She was also less resistant to being put in a laying down position, as she was discovering that she could move out of it!!
We finished the first wonderful days of lessons and went to a hotel on the beach to rest a little from NYC. Things with her epilepsy were not as controlled as we wished and we were told that we had to stay in the US for at least one month more. After four or five days of the therapy break, Lucia's aunt and cousin began yelling with happiness as she finally was able to roll over and sit up by herself!!!!!! With a lot of effort her brain finally connected the dots and was able to figure it out!
We didn't think twice and emailed Marcy to schedule a second set of intensive lessons. We counted the days to see her again. This second time, Lucia felt as if she was at home. She was very lovable and affectionate to Marcy and they both worked wonderfully. This time they were exploring more of that movement feeling and were trying to incorporate her right arm into the picture. Again we were thrilled with the results. Lucia was understanding that she could move her legs!! She was side sitting to both sides, even to her affected side. This position was allowing her to feel that she could move. The constraint we were doing to her arm was gentle and was slowly working also. She was understanding that her right arm could also randomly move and actually could help her with movement.
Again the days of lessons flew by and Lucia kept improving. It was very sad to say goodby to Marcy but we were very happy to be able to go back home soon. We agreed to see her again in December. After the third day of break again Lucia's brain did the connection!!! She moved her legs and suddenly began scooting on her bottom!! We found her in the hotel bathroom messing with the toilet paper. It was the best mess I have ever seen!! And the most rewarding moment of my life. Lucia was able to move, and she and Marcy achieved it so without pain, without frustration. They both did it with a lot of love and fun. This wonderful lady who loved her and sang her happy birthday and made her feel at home changed our lives.
Fernanda, Ecuador, October 2014
Copyright © 2020 marcylindheimer.com - All Rights Reserved.