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Nolan and Mckane Camp Smiles Adventures Over the Years

 

July 7, 2019

By: Mckane 

 

Nolan McKaneNolan,

         3 years ago in July 2017 I packed my bag to tend Camp Smiles for the first time. A lot of emotions ran through my mind. I wondered, “would my buddy like me?” and “would I know what to do in certain situations?”. Nolan, from the moment I met you, I knew the two of us would have a great week together. This was the beginning of our life long friendship.

 

(First Year)- The first year, we got to know one another, discovering our likes and dislikes. Leaving camp for the first time, I felt inspired to be a better person because of you. Even though Camp was over we continued to stay in touch and constantly talk via text about Call of Duty Zombies and which maps were the best. Of course, we always choose nuketown. I will never forget the one time you responded to my text, “gtg”. I was so confused and asked what you meant by gtg. You responded “got to go you noob.” I laughed inside, we shared a joking sense of humor.

Second Year)- Before I knew it; it was July 2018 and we were getting ready for our second year together. On the first day, the two of us were chilling at the pool. I ask you,” Hey Nolan what do you want to do?” and you respond, “I don’t know, you are the one who volunteered for this.” At that very moment, when I laughed and smiled, I realized how much I had missed seeing you. Later that week, we went to the zip line and giant swing. You didn’t want to do the rock wall. But after some talking, you decided to attempt it. As you braved the wall, I realized you had trusted me.

 

One thing I will never forget is on the last day of camp before you left. You asked me, “ Can you come back next year because I don’t want anybody new for my last year?” Nolan, this changed my life, I felt like I had a purpose, that you relied on me, and I wouldn’t have missed your last year of Camp Smiles for anything.

 

Third and Final Year)- And now your last and final year. You broke out of your shell and took another step out of your comfort zone. This year it wasn’t just me and you interacting throughout camp, it was our cabin as a whole. Our cabin, cabin 9, became a close family. We had our ups and downs, but this entire week has been moving. Watching you interact and help your friends and cabin mates was heartening, Nolan. Coming in to this I thought I came to change your life, but in return, Nolan you changed mine. I enjoyed spending these last three summers with you. This isn’t a goodbye this is a see ya later.

Samantha's Communication Device Gets an Update!

 

July 31, 2019

 

samantha 1ugLast Spring, Sam transitioned from using a limited auditory scanning device to a device with unlimited app-based software using auditory scanning to communicate!

Many of the parents who have come to The Caroline School have done so out of a desire to find a more individualized education for their child – a school that would focus on the whole child, their physical, social, and cognitive development.

 

 

That’s exactly what Samantha’s family found. Sam began at the Caroline School a year ago and since has embarked on many educational changes. She worked on her physical skills by using her stander in the classroom and engaging in yoga stretches with support. She focused on her social skills by using both non-verbal gestures (smiles and singing), as well as her new communication device to share love and joy with her friends and teachers. Working on the physical and social aspects of learning, perfectly positioned Sam to grow her cognitive skillset as well! She used her new communication device to engage in lessons and home-to-school connection questions and activities. For example, she completed an “All About Me” project to share with the class.

 

Sam’s collective team of teachers, parents, therapists and nurses are so proud of her hard work! We can’t wait to begin her Senior year here at the Caroline School! It will surely be the best year yet.

Adorable Adri Walking and Going to School With the Help of ECI

 

March 21,2019

By: Sharon Mott, EIS/ Transition & Outreach Coordinator 

 

    Adri 1 Adri’s journey continued on a smooth path as she made steady progress, gaining independence in all areas of development. She was eating a larger variety of foods (also receiving additional nutrition through her G-button), began walking independently, and using more words and phrases to communicate. At 3 years old, Adri graduated from the Easter Seals ECI (Early Childhood Intervention) program, and transitioned easily into the PPCD (Preschool Program for Children with Disabilities) class with her local school district.

   

  As most journeys hit challenges along the way, Adri’s journey took a terrifying turn. In January 2018, Adri became very ill. Her parents made two trips to the hospital ER one weekend, where she was diagnosed with “just a stomach virus”. Her health did not improve. When at her pediatrician’s office on Monday, Adri’s left arm began jerking. Suspecting she was having seizures, Adri was transported by ambulance, for her third trip to the ER. After given numerous tests, and losing the ability to lift her left arm, Adri was taken, by ambulance, to UTMB. The EEG and MRI indicated no seizures, but her fever continued, and her condition worsened. Since no neurologist was on-site, Texas Children’s Hospital sent their ambulance to pick her up. Adri was intubated before she left in that ambulance. Once she arrived at Texas Children’s, Adri was taken straight to the ICU.

  

After multiple tests, on January 25th, the test results showed Adri had Adenol virus which “mimics” the flu. Children with Down Syndrome may have weakened immune systems, and Adri became susceptible to the virus. The Adenol virus triggered Moya Moya, a common, though not frequent, underlying condition sometimes present with Down Syndrome. Moya Moya caused progressing restricted blood flow to the brain, depriving certain areas of the brain of oxygen and glucose. The MRA and MRB tests revealed Adri suffered a massive stroke to the right side of her brain. Adri lost the use of her left side of her body – she was unable to use her left leg, left arm, and left hand. Her speech was also affected. Adri began rehab therapy, to regain strength, and use of the left side of her body. During her month-long stay at Texas Children’s Hospital, Adri also had brain surgery on February 19th. The neurosurgeon tried to create new blood vessels on the right side of her brain. Her parents endured this traumatic time through their faith, and support from family and friends. As her mom stated, “We had a lot of people praying for her.” Adri was discharged on March 8th. In order to regain her strength, and focus on recovery from her stroke, Adri stayed home from school and began receiving out-patient therapy. She had OT (Occupational Therapy) and Speech Therapy two times per week, and PT (Physical Therapy) one time per week.

   

  Last August, with the start of a new school year, Adri began the next phase of her journey. Today, she walks independently again (with a slight drag of her left foot), feeds herself a variety of food (still receiving additional nutrition from her G-button with 4 feedings a day), uses 3-4 word sentences to communicate what she wants, uses her left hand as a “helper hand”, and knows her letters, most shapes and colors, and counts to 20. Her dad commented Adri has had a strong will, even from birth, and is “feisty”, which helped her recover. She has surprised her therapists with how well she is doing. Adri attends PPCD Monday through Friday from 8:25-11:55 am, and receives out-patient therapy two times per week. Mom reported Adri loves riding the bus home from school, and enjoys “tooting the horn” to let mom know she’s home. Adri loves to sing, dance, and watch YouTube videos. Her mom added she’s “very funny”. Adri has fun with hats, dressing up, and looking in the mirror. She comes up with new words and sentences every day. Adri greets people, says what she wants, and still gives amazing hugs! On her last brain angiogram in the Fall of 2018, the neurosurgeon stated the brain image now shows “no stroke”, and the medical team can’t explain it.Adri 2

    

When requested to look back where their journey began, Adri’s dad reflected on their family’s time with the Easter Seals Infant / ECI program:

    

To really come home with a child with Down syndrome….well, one of the most unexpected things in our lives. We all cried. To receive help from Easter Seals Infant Program was great! Really was a tremendous help. At first, we thought we were all alone with this. The ECI staff became like family. They didn’t just do their sessions. They listened to what we needed. Therapists recommended what Adri needed, then helped us resource it. We really miss them. They were a big time help with her progress and almost entirely the reason Adri was school-ready for PPCD.

   

  Adri’s dad said he wanted to offer this advice to parents of children with Down syndrome: “Pack your patience. Really take time to get to know your child.” That is sound advice for parents of all children. Adri’s parents’ high expectations for Adri have enabled her to progress in her development, recover from a massive stroke, and look forward to the next steps of her continuing journey.

Miss Audra Staying Connected As a Senior Thanks to BridgingApps

 

May 7, 2019

By: The BridgingApps Team, Easter Seals Greater Houston

 

Audra snapchatMs. Audra Evert is an amazing artist, and her home is covered with her colorful abstract paintings. She suffered a stroke some years ago, and she needed help using a desktop windows computer and a flip phone for her technology needs. Her interests include internet searches, emails, saving and sharing photos, creating word documents, and excel spreadsheets. A nephew of hers recently asked for her knowledge about the family. She developed a goal to create a family tree.

 ESGH BridgingApps digital trainer, Jana Rodriguez helped Audra research a few options to create a family tree and offered the free website service FamilyEcho.com. Together Jana helped Ms. Evert create her family tree, as seen in her printed copy. A copy was also sent via PDF to her nephew. She hopes to expand the details with more research on other family members. At the beginning of this journey she dreaded the thought of how difficult this task would be. She was so pleased with the ease and design which she described as “perfect”!

Audra owns a flip phone and has been frustrated with not knowing how to take photos and then share them with others. Jana of ESGH BridgingAPPS  program has been working on basic phone skills with Audra, who has been practicing manipulating photos on her phone.  She is learning how to take photos, rotate and crop them, and send them to friends and family via email.  She has been thrilled with her progress!

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