PATIENT SUCCESS STORY: GRACIE

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This is Gracie, an amazing three-year-old in Amarillo that THERAPY 2000 provides both speech and physical therapy services. Gracie was born with a very rare condition called Birk-Barel syndrome which is characterized by intellectual disability, hypotonia, hyperactivity, and unusual facial features. She had severe feeding issues and airway difficulties at birth but has already been discharged from feeding therapy because she has met all her goals. Gracie, her family and her feeding/speech therapist, Val Betts, worked very hard and now she can enjoy a meal with her family. Gracie’s diagnosis places her at one of only twenty-five in the world and the only one in Texas with the condition. Kristy, Gracie’s mom along with her dad and three older siblings feel she has the special gift of bringing all of them even closer together since she was born.
Gracie’s parents were told about T2K in Amarillo from one of her many professionals she sees in Dallas. Dr. Elizabeth Sperry of the International Craniofacial Institute had seen a lot of success with her patients she had referred to T2K in the Dallas/Ft. Worth area over the years. Gracie had her first of many surgeries at five weeks of age in Dallas and has had numerous returning trips over her three short years. She is a very hard working, happy and social little girl that enriches everyone’s lives that have the pleasure of meeting her!
She currently receives PT services with Ashleigh Wilson and ST services with Val Betts. Gracie loves them both. Her mom Kristy says they both therapists are very loving but push her to work hard to reach her goals. She also says they are like family and genuinely care about Gracie. Mom states from day one the therapists really listened to her and took the time to “learn and speak Gracie”. They have cried together, shared in their struggles and celebrated all of her many achievements. Kristy said parents of children with special needs, appreciate a therapist who will share in their hope and not focus on what they can’t do but in what they CAN do. She loves that Val and Ashleigh continue to provide new ideas and are always “thinking outside the box” as that is how Gracie thrives. The family was thrilled that Gracie’s very rare diagnosis did not scare the therapists in any way with such little research out there and they never said “we can’t”. The family was told Gracie would never walk or talk when she was born and in the short time with the T2K therapists, she has started walking and running alone as well as increasing her vocabulary to more than 30 words.
Gracie’s mom states that she would recommend T2K for a variety of reasons. First, because they have knowledgeable, experienced and caring therapists. Secondly, because the services are provided in the home it reduces family stress. Gracie is in her home environment and spends less time in the car with the family’s busy schedule. Third, it helped the family recognize safety issues in the home that they had not consider< And last but not least, the therapists encouraged the family to enroll Gracie into a mother’s day out program. This was something the family would have not ever considered and Gracie has flourished! Val was able to suggest accommodations at the mother’s day out program with her feeding issues and Ashleigh was able to suggest independent motor activities that they would have never known about otherwise. Gracie’s family is so grateful for T2K and what a huge difference it has made in their lives!

PATIENT SUCCESS STORY: GRACIE

cutegirl
This is Gracie, an amazing three-year-old in Amarillo that THERAPY 2000 provides both speech and physical therapy services. Gracie was born with a very rare condition called Birk-Barel syndrome which is characterized by intellectual disability, hypotonia, hyperactivity, and unusual facial features. She had severe feeding issues and airway difficulties at birth but has already been discharged from feeding therapy because she has met all her goals. Gracie, her family and her feeding/speech therapist, Val Betts, worked very hard and now she can enjoy a meal with her family. Gracie’s diagnosis places her at one of only twenty-five in the world and the only one in Texas with the condition. Kristy, Gracie’s mom along with her dad and three older siblings feel she has the special gift of bringing all of them even closer together since she was born.
Gracie’s parents were told about T2K in Amarillo from one of her many professionals she sees in Dallas. Dr. Elizabeth Sperry of the International Craniofacial Institute had seen a lot of success with her patients she had referred to T2K in the Dallas/Ft. Worth area over the years. Gracie had her first of many surgeries at five weeks of age in Dallas and has had numerous returning trips over her three short years. She is a very hard working, happy and social little girl that enriches everyone’s lives that have the pleasure of meeting her!
She currently receives PT services with Ashleigh Wilson and ST services with Val Betts. Gracie loves them both. Her mom Kristy says they both therapists are very loving but push her to work hard to reach her goals. She also says they are like family and genuinely care about Gracie. Mom states from day one the therapists really listened to her and took the time to “learn and speak Gracie”. They have cried together, shared in their struggles and celebrated all of her many achievements. Kristy said parents of children with special needs, appreciate a therapist who will share in their hope and not focus on what they can’t do but in what they CAN do. She loves that Val and Ashleigh continue to provide new ideas and are always “thinking outside the box” as that is how Gracie thrives. The family was thrilled that Gracie’s very rare diagnosis did not scare the therapists in any way with such little research out there and they never said “we can’t”. The family was told Gracie would never walk or talk when she was born and in the short time with the T2K therapists, she has started walking and running alone as well as increasing her vocabulary to more than 30 words.
Gracie’s mom states that she would recommend T2K for a variety of reasons. First, because they have knowledgeable, experienced and caring therapists. Secondly, because the services are provided in the home it reduces family stress. Gracie is in her home environment and spends less time in the car with the family’s busy schedule. Third, it helped the family recognize safety issues in the home that they had not consider< And last but not least, the therapists encouraged the family to enroll Gracie into a mother’s day out program. This was something the family would have not ever considered and Gracie has flourished! Val was able to suggest accommodations at the mother’s day out program with her feeding issues and Ashleigh was able to suggest independent motor activities that they would have never known about otherwise. Gracie’s family is so grateful for T2K and what a huge difference it has made in their lives!

Patient Success Story- Harper

PATIENT SUCCESS STORY-

All therapists want to make a difference! With pediatric patients we not only receive the immense joy of seeing the progress in our patients, but on the faces of their parents as well. Approximately one year ago, I began working with an adorable little girl named Harper. She was born at 25 weeks with Chronic Lung Disease, and multiple other diagnoses that come with being a micro preemie. When I started treating Harper, she was 14 months old and still only taking liquids from a bottle. Harper demonstrated a severe oral aversion to foods, her suck/ swallow/breathe pattern was disorganized, and she exhibited multiple signs of aspiration. Harper would gag and retch, so we started slowly with the introduction of purees from a gloved finger. We slowly built her response while simultaneously using techniques to decrease oral aversion. Within six months, Harper was able to eat purees from a spoon and had integrated her suck/swallow/breathe pattern successfully.

During her modified barium swallow study, Harper demonstrated some aspiration and penetration due to muscle fatigue and was recommended to begin NMES (Neuromuscular Electrical Stimulation). In the beginning, Harper did not enjoy NMES and required multiple verbal cues throughout the session, but soon began demonstrating an increased chewing pattern while expanding her variety of food and textures. Our goal was to maintain Harper’s calorie intake without supplementing with Pediasure, so Harper’s mother was encouraged to talk to her gastroenterologist about medications for reflux and a diet plan. Harper is now successfully taking all liquids via sippy cup and eating a variety of food such as broccoli, cauliflower, cheese and crackers, and many more. Harper continues to demonstrate some difficulty with coarse meats and requires extra chewing during these times.

Since she began speech therapy, Harper has decreased upper respiratory infections, pneumonia, and has had no hospitalizations. She has come leaps and bounds and continues to make progress. I couldn’t be any prouder of how hard she has worked to get here. Harper is a little ROCK STAR!!!

-Courtni Marshall, Advanced Clinical Feeding Specialist THERAPY 2000

Jeremiah receives much needed Doc Band with help from Chari-T2000

Chari-T2000 Success Story

Jeremiah, a THERAPY 2000 patient, was in desperate need of a Doc Band orthotic helmet to help correct his plagiocephal, a flat spot on the back of his head. Though common in children, an orthotic helmet is needed to correct the issue. In Jeremiah’s case, Medicaid denied funding to purchase the helmet.  Jeremiah’s physical therapist, Catherine Parker of Austin stepped in and suggested his family to apply with Chari-T2000 to see if the non-profit would help fund for the purchase. Chari-t2000.org is a non-profit organization created to give children receiving rehabilitative service the needed tools and opportunities to make progress and reach their full potential. Chari-T2000 was able to partner with Jeremiah’s parents to purchase a Doc Band from Cranial Technologies Inc.

Jeremiah received his orthotic helmet in April. The helmet was customized to his liking with an assortment of fun Mickey Mouse stickers. Thanks to the helmet his plagiocephaly and related issues are improving. Catherine Parker, Jeremiah’s THERAPY 2000 PT, shared, “Jeremiah is doing great! He recently begun walking on his own, and his torticollis is almost resolved.  He is preparing for discharge from physical therapy this summer!” Though he is making great progress, due to the severity of his head shape when he first began treatment, his doctor informed his family in a recent follow-up visit that he still had three months left to wear his helmet. Chari-T2000 was glad to help fund the purchase to Jeremiah with his therapy.

Do you have a patient or child that might benefit from the help of Chari-T2000? Each family that receives an item from Chari-2000 is asked to make a 10% donation towards the cost of the item. You can find and download the application is here http://charit2000.wpengine.com/english-application/.

About Chari-T2000

Chari-T2000’s mission is to assist Texas children (birth–21) with developmental and medical needs obtain the services and equipment they need to make progress and reach their full potential.  For many families with children receiving rehabilitative services, obtaining necessary medical services or equipment is extremely difficult. There are often insurance limitations that make funding these important items challenging. Chari-T2000 was created to bridge the gap when it is not financially feasible for families to provide these tools and no other funding source is available. Established in 2010, Chari-T2000 was created by North Texas agencies that serve children with disabilities to give back to the families they service.

Funding for services and equipment might include, but is not limited to:

  • Communication Devices
  • Behavioral Intervention
  • Transportation Services
  • Home Modifications
  • Durable Medical Equipment
  • Adaptive Equipment or Aids
  • Any necessary services and equipment that are not financially feasible for patient’s family to purchase and no other payer source is available

For more information on the great things Chari-T2000 is doing call 877.688.2520, visit Chari-t2000.org or email info@chari-t2000.org

Expect More

Friday, March 21st, is World Down Syndrome Day (WDSD). The date was chosen for the significance of the genetic disorder, trisomy of the 21st chromosome. One in every 691 American babies are born with Down syndrome making it the most common genetic disorder. The date is celebrated to bring awareness and promote the fact that people living with Down syndrome can live happy, healthy and fulfilling lives.

One of our THERAPY 2000 parents has been a constant activist for the Down syndrome community at large and her son, Tim. This year the family put together one of the largest teams for North Texas Buddy Walk, raising $4,000 to support the cause. Theresa knows the importance of raising awareness that children with Down syndrome can lead rich, fulfilling and happy lives.

Theresa and Tim have maintained a relationship with Kathy Gamble, Tim’s former THERAPY 2000 PTA. Kathy worked with Tim from age 15 months until he was five and a half years old. This team of three has been out in the community advocating for Tim and other kids like him. One thing the threesome has done for the last three years is participate as guest speakers for a Texas Womens University Child Development class. Kathy and Tim share the benefits of physical therapy through live demonstrations of exercises they would do together in normal home therapy sessions, bringing the text book to life. The response from the students is always incredible.  After Kathy and Tim demonstrate techniques for the class, Theresa talks to the students about Tim’s life.  This year they shared an article Theresa wrote on having a child with Down syndrome called Expect More. The article discusses the importance of keeping high expectations for all kids and how it affects who they become. It is important to expect more from every child, including one with Down syndrome.  Higher goals mean that you believe in them and they can believe in themselves. Kathy, Tim’s former PT, shared these words about live classroom experience, “It is important to educate students about  things like putting the child first, setting high expectations,  starting intervention early to help children live up to their highest ability and level of independence, and putting a face on the value of a life. I’m always so moved by Theresa’s impassioned speech on valuing life rather than passing up a blessing out of fear of the unknown, or labeling a child with special needs a burden.”

In honor of World Down syndrome day, THERAPY 2000 salutes Tim, his family, and  our own THERAPY 2000 PTA, Kathy Gamble, on a job well done! Thanks for all your hard work on advocating for kids with Down syndrome, Below is Theresa’s article on expecting more and a poem she gave the Tim’s school teachers as a thank you for all their hard work.

Expect More

By Theresa Smith
 

We now have one of the most social and outgoing six year old boys with Down syndrome that his pediatrician knows.  Yet, after I replaced Tim’s first speech therapist, (who was in our home twice a week for over two years, from his being one to three and a half) I learned that she had decided he probably never would speak since he wasn’t speaking intelligibly by the age of three. We got a therapist who was willing to try methods I had learned about in DSPNT trainings and within four months Tim’s vocabulary had doubled.  We have to expect more!

Both of our boys are seen by the same fantastic dentist.  Tim’s older brother, Thomas, has been getting x-rays of his teeth since his first visit to this dentist at age four.  However the technicians never offered to try to x-ray Tim’s teeth.  Finally last spring when we went for our six-month checkup I asked them when they thought they would start trying to x-ray Tim’s teeth.  (He was almost six.) They said they could try that day.  We did, and it didn’t go too well.  But as I figured, if we never started, we would never finish.  If we didn’t try to get x-rays we never would.  This past fall when we returned to the dentist I had a discussion with Tim before we left the house.  I told him that if he sat still and let the technicians clean and x-ray his teeth and let the dentist look at them well, then we could stop at McDonald’s for lunch on the way home. (We “never” stop anywhere.)  It worked like a charm!!! I have never been so happy to eat at McDonald’s in all my life.  We have to expect more!!!

I am constantly having to ask myself, “What am I expecting of my children?”  “How are my expectations limiting them?”  “What are others expecting of my kids?”  “Are the expectations of those individuals the ones I want to shape my child?”  We as parents are called to govern and shepherd and nurture our children and help them become all they were created to be.  I hope you will join me in expecting more! 

This is a little poem Theresa put together with some treats for Tim’s teachers in the public school he attends- it is also about “expecting more” from Tim

These tasty treats come long overdue,
But they are given to say a big THANK YOU!!!
Whether you are a teacher or on the school’s support staff
Or just someone who likes to make Tim laugh
We want you to know that we appreciate you!!!!!
We want you to be blessed and avoid the flu,
So this year we are giving you some veggies too.
In 2013 our little boy turned six.
We’re sure you’ve noticed he’s learned a few tricks.
He knows that he is pretty darn cute
And if you are not careful he will act like a toot.
We appreciate each of you who expect more of him.
Please don’t let him get away with anything in the halls, grounds, classes or gym!
Hold him to a high standard! Expect him to compete!
Don’t ever be fooled by his tiny hands and feet.
We are grooming a champion, a future leader.
Who knows, maybe someday he may be a teacher!
Maybe not one in the typical sense,
But he will become a man of great influence.
So thanks for all of the things you do to keep Tim safe, happy and learning.
As we reach this midpoint, where the school year is turning,
We want you to know YOU ARE APPRECIATED!!!
THANK YOU!!!!