Health Care Home - Patient Story - Tacy

Tacy's Story
This story was submitted by Tacy's mother, Heather.

When Tacy was born we didn’t know about her special needs.

As time went by, problems and delays became apparent. She wasn’t lifting her head or trying to roll over and we started seeing an ophthalmologist for vision concerns. By 6 months of age the term ‘hypotonia’ (low muscle tone) had been added to Tacy’s charts and by 9 months she still wasn’t sitting up on her own. We then began our journey into to testing to find out what was causing Tacy’s delays and ultimately into the special needs world. We started doing therapy through pediatric rehabilitation at the Saint Cloud Hospital and began services through the school district. Tacy has received occupational, physical and speech therapy numerous times a week since she was 10 months old.

School services also began at 10 months old, starting with home visits, which transitioned to the preschool just before Tacy’s 3rd birthday and we have been a part of the special education program in the Saint Cloud school district ever since.

Finding a diagnosis is not an easy process. We saw a local neurologist who ran many lab tests and we eventually ended up down at the University of Minnesota for more testing and second opinions. After many doctor referrals, we were referred to a new neurologist that we still currently see and she gave us the diagnosis of hypotonic cerebral palsy to describe Tacy’s condition. Tacy was 2 ½ years old when we finally had a name to put with what she has. Tacy also has a diagnosis of apraxia (poor motor planning) and developmental delay. We visit our neurologist down at Children’s of St. Paul yearly to monitor Tacy’s progress.

In May of 2007, Tacy also received an autism diagnosis. Tacy has had more evaluations regarding her autism diagnosis this past year. We have been doing genetic and other testing to determine an overall diagnosis for Tacy, but so far everything has been inconclusive. We are working to find out as much as possible so that we can support Tacy with the services she will need for the rest of her life.

Tacy is a happy and beautiful child that works very hard to learn new things. She began walking at 4 ½ years old and we still constantly work on this skill. Tacy is for the most part nonverbal. She uses a Vantage communication board and is doing well with learning how to communicate with it at school and at home. Tacy also uses some sign language, more and more verbal words all the time, and of course has her own way of telling us what she needs when her other communication systems aren’t working for her. She will turn 9 this summer and is attending second grade at Discovery Elementary School. She spends part of her day in a regular classroom and part involved in special education services. Tacy receives physical, occupational, and speech therapy twice a week at the Centracare Health Plaza and participates in the therapeutic horseback riding through the Project ASTRIDE program. Some of Tacy’s favorite things are reading, music, swimming, riding her bike, and being outside!

We have been patients with specialty care through Centracare since Tacy was one year old and recently transferred to the Centracare Women & Children’s clinic this past December to follow our pediatrician, Dr. Kelly Fandel. Because of Tacy’s special health care needs, we became part of Medical Home.

When we first started seeing doctors and specialists for Tacy, we had so much paperwork, questions, and confusion. Tacy’s medical appointment schedule became very complex as well as services through the school, and equipment needs. Starting a Medical Home care plan was our first step.

The care plan itself streamlines our medical experience. We keep the plan updated and bring it with to specialists to give them a quick overview of Tacy’s diagnosis, current health plan, and services that she receives. It takes the place of filling out health forms for the school district and it is a quick reference for us to look up phone numbers of doctors and specialists when we need to make appointments or call with questions. When Tacy needs to go into Urgent Care or the ER, the care plan gives the doctors and medical staff the information that they need and lets us be there for Tacy instead of spending a majority of the time going over medical information.

There are so many other benefits of Medical Home for children with special health care needs. We are one of the “frequent flyers” of the health system and so when things work together it makes thing easier for our whole family. Tacy’s medical doctors and specialists work as a team and keep us moving forward with the needs that she has. It makes us feel more successful as parents when we see Tacy progressing towards her goals and we don’t feel lost in the process.