Julia and Mia's Stories

by Gina Paparella

I am forever endebted to Childrens' Specialized Hospital as I not only had one child who desperately needed their services, I had two.... 

Julia was born a little smaller than the average baby at six pounds but everything seemed as perfect as you could dream for in a newborn. All her fingers and toes were there and she took to nursing easily. At her nine month check up, the doctor told us that Julia had dropped her growth curve. She seemed to be tolerating the solid foods that were being introduced and she was nursing well, so no intervention seemed to be needed at the time. At her 12 month visit, she dropped again and the doctor was concerned. We started the search for answers as to why she was not growing. Many tests were done over the next six months. Because her growth continued to decline, she was diagnosed with "failure to thrive."

The next two years were years of panic as we desperately tried to find out what was happening. In that time, she began to to slowly refuse almost all the food offered to her. Several diagnosises were discussed as possible causes but the additional testing revealed that it wasn't any of them. We spent every 3 weeks bringing her to the hospital to be stripped, weighed and all her body parts had to be measured. At every visit, my heart would break as she would scream. She would reach her hands out for me to rescue her as she was unknowning what testing was going to be done this time.

We had to endure putting her under anesthesia because gastro exploratory surgery was necessary as her significant drop off the growth chart became life threatening. It was discovered that she had many food allergies that caused a baby ulcer and it was too painful for her to eat. Her allergies went undetected because her reaction was happening on the inside, as she had sores throughout the lining of her stomach.

We were immensely grateful for our experience at Children’s Specialized Hospital because their nutritionist and feeding team was instrumental in putting her back on the chart. They were so creative in their discovery of finding what works.  Because of their intervention, Julia was spared the need of a feeding tube.

As we seemed to be working on getting out of the woods with the feeding issue, another one began to emerge. Julia was developmentally delayed with her speech. She could label things but couldn't put words together. She was approaching her 4th birthday and only had a few two-word utterances. Her speech therapist never gave up on her. Julia was a bright, blue eyed preschooler who could only communicate through the sign language her therapist taught her. She was five years old when she began to speak sentences. Julia was diagnosed with Central Auditory Processing at age eight. We now understood the reason for the speech delay. 

We also have another daughter, Mia. She is 3 ½ years younger than Julia. All of Mia's well visits in infancy were stellar. She was a healthy baby girl and growing well. As her toddler years immerged, it was noted that she also had a delayed in language. Something else seemed different, she was more active than her other two siblings and she craved input. By input, I mean pressure; she was very “tiggery”, constantly jumping and bouncing, which gave her pressure in her feet. She was always climbing, that gave her pressure in her hands as well as her feet. She could scale a wall with ease. Brendan and Julia, her siblings, called her “spider baby”. She also loved bear hugs as that gave her body the pressure it craved. She seemed hypersensitive to fabrics as she always wanted to be without clothes. It was extremely difficult to get her dressed. At times, life with Mia was not easy. We already had very positive experiences at Children’s Specialized Hospital so we turned to them for evaluation. Mia has sensory integration disorder. As the Occupational and Speech therapists assisted Mia in leaps and bounds of growth, they also assisted us as a family because they taught us what to do at home so we can continue her growth when she was not in therapy. Their actions were always above and beyond any expectation a parent can have.

It is difficult to remember the journey without wiping the tears. I feel so grateful to Children’s Specialized Hospital for the quality of life they gave my children that they would not have had without them.  I whole heartedly believe Julia wouldn't be where she is today if it was not for the compassion and expertise of the team that brought her out of a life threatening situation and worked so diligently to give her the gift of language. Mia still receives therapy but I know she will be an amazing and productive adult. She is a very intelligent and resourceful little girl. The sky is the limit for her. I sincerely believe this would not be the case without Children’s Specialized Hospital. The amount of gratitude felt for the hospital cannot be measured that is why I am elated to be a part of this special cause for Family Advocacy Day. The kids are also equally as excited to be in Washington and to be able to be a voice for all the children of our country.

Comments

[Rebecca Mazzarella - Children's Specialized Hospital]

We are so excited and proud the Paparella family will represent Children's Specialized Hospital at this year's FAD - you both have come so far and we know that sharing your story and meeting with our congressional leaders will leave a lasting impression. Good luck tomorrow!