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Resilient

Gaby1We are a small, young family working and playing hard in Kingwood, Texas. My name is Chris and I’m the dashing and brilliant stay-at-home Dad. My wife is Elisa, the exotic and  mysterious bread winner of the family, and together we have two daughters – Hannah, a five-year-old Wonder Woman and two-year-old Gabriella (Gaby), the thrill-seeking comic of the family.

Gaby was born on November 10, 2015, shortly after we moved to the suburbs of Kingwood from the city of Houston. We felt confident about the delivery since this was Elisa’s second time, and I had plans to take a short break from my career to help get us all settled and then find a new job a few months later. Those expectations changed when the delivery did not go as planned, and Gaby was immediately put on a ventilator as soon as she arrived. I remember she was blue and not breathing. Come to find out she had swallowed muconium on her way out and the fluid was stuck in her lungs. Eventually she started to breathe and move around, but spent the better part of a week in the NICU as a result.

During her time in the NICU the doctors discovered Gaby4a small heart defect. Gaby has a few valves that are thickened and while the thick valves are not causing her any immediate problems, over many months they did lead the doctors down a path to a genetic diagnosis of Kabuki Syndrome.

Turns out, the reason Gaby swallowed meconium is that she has hypertonia. Her muscles, while they can develop and get stronger like any of ours, are naturally weak and hyper flexible. Gaby did not have the muscular control of her mouth or throat to prevent herself from swallowing fluid during delivery. Over time the hypertonia has lead to delays in walking, eating, and for a while, even having a bowel movement on her own. As an infant she needed assistance in every little area of life that we take for granted, because she wasn’t strong enough to do these things on her own. Gaby also had severe reflux, and not only was she not strong enough to swallow, but what formula did go down came right back up in a very violent, retching episode. Eventually she was given a G tube, which allowed us to use a pump to slowly drip formula directly into her stomach, bypassing her mouth and throat completely. Even after the G tube surgery and with the pump, Gaby threw up, screaming and crying, 5-6 times a day for nine months. She didn’t sleep. We didn’t sleep. We just held her and rocked her as she screamed in pain.

As the weeks went on, colobomas were found in both of her eyes resulting in low vision and an immediate diagnosis of legal blindness. Knowing Kabuki can produce hearing loss as well, we tested her ears and found that she has mild to moderate loss in both ears, requiring hearing aids. The combination of vision and hearing loss lead to sensory issues, such as getting overwhelmed in loud, new spaces or feeling uncomfortable touching certain textures.

For months it seemed we found a new challenge to face each week. We lived in the hospital and at doctor appointments. We were scared. We were exhausted. We were not prepared for this.

On top of helping Gaby, we were all of a sudden forced into a situation where we had to take a hard look at our insurance, the surrounding school system, any and every option available to us through the city, state, non-profits, family, friends and whatever else. Through this process – what I call the “business side” of all this – we discovered Easter Seals Greater Houston‘s Early Childhood Intervention (ECI) Program and requested an evaluation.

None of us are prepared for the feelings that come with Gaby3a scenario like this. Just a few months before Gaby was born I had bought a drum kit and was hoping to open my own retail store. Now, overnight, I was having to second guess and completely reevaluate emotions, thoughts, plans and habits that were second nature to me over the previous 35 years. The most difficult obstacle to overcome was accepting what Gaby had and what she was facing enough to do the things that I knew she needed. One of those things was an Early Childhood Intervention evaluation –  probably the first time I had to accept she needed long term help. It was honestly scary.

As nervous and vulnerable as I felt we were at the time, our evaluation was the best thing that could have happened to us. Both Easter Seals therapists were so knowledgeable and understanding of our situation. Even though Kabuki Syndrome is a specific challenge to deal with, these therapists knew so much about the bigger picture – the anger, the sadness, the confusion and, at times, hopelessness. These are experiences that every parent of a child with special needs goes through no matter the diagnosis.

Given Gaby’s situation at the time we were quickly scooped up into the ECI Program and recommended a handful of therapies to begin with, including Physical (Leanne Armel), Occupational (Jessica Valdez/Jackie Wooten), and Speech (Ashly Wiebelt). Eventually we would add an Early Intervention Specialist (Ysabel Luna) when Gaby was a little older. We were also provided an incredible Case Manager (Melodie McDonald) that helped us complete any forms or paperwork, recommended assistance programs that could be available to us at the city and state level, and was also a wealth of knowledge for resources in our immediate community.

Gaby thrived with the support and expertise of the Easter Seals team. The therapists came to our house. We did not have to sit in a small room waiting for them like we did with the doctors. The therapists were flexible and understanding with our schedule, they were prepared for each appointment and most importantly, each and every one of them genuinely cared about all four of us. Honestly, in the beginning, sometimes I just used them as a shoulder to cry on.

The first thing that the Easter Seals specialists told us was that they were not there to do the therapy for us, but to teach Elisa and I how to do it. I appreciated that so much, because the ECI team understood that there is no doctor in our house when Gaby’s G-button falls out. There is no nutritionist in Gaby’s room at 3:00 a.m. when she’s just thrown up all of her food, and there is no physical therapist on standby next door to come teach Gaby how to sit up by herself everyday. That was our job now. Like it or not, as hard as life had been recently, we had to become Gaby’s nurse, doctor and therapist. That was our job as her parents. We had to get with it, and we had to start right away.

Based on our physical therapist’s advice and teaching, we worked every day with Gaby on simple exercises that began with the goal of having her roll over. Eventually she sat up on her own and today, at two years old, she walks. Our speech therapist taught us about strengthening Gaby’s mouth so she could begin to form words and eat food. She introduced Gaby to specific sounds and words to help her communicate. Today Gaby can speak 6-8 words clearly and is picking up sign language very quickly. Our occupational therapist worked for months on tasks as simple as pointing a finger, and today Gaby can sit in a chair, flip through a book and remove pieces of a puzzle. Every baby needs teaching and nurturing to grow, but for a baby with special needs that is naturally going to be delayed they need specific attention given to the little things.

Gaby2Lastly, Easter Seals Greater Houston’s Early Childhood Intervention Program helped us learn how to communicate. We had to develop a way to communicate with Gaby despite delays or physical setbacks. We had to learn how to explain Gaby’s life to her sister Hannah in a way that Hannah felt included and encouraged. We had to learn how to talk to other parents, teachers and even strangers about Gaby in a healthy way, to let them know Gaby is just as strong, smart, and resilient as any other two-year-old. Recently we attended the 4th Annual Kabuki Gathering in San Antonio and met families from our area and their children with Kabuki Syndrome. Without the confidence that ECI has given us to take this new life head on, I do not know if I would have gone. However, it turned out to be one of the best weekends of my life, not mention for Gaby and the rest of our family. Rare conditions like Gaby’s and special needs of all types are so difficult to manage in the beginning, and borderline impossible to do alone. Thanks to Easter Seals’ ECI we never had to be alone and Gaby’s life has been changed forever.

Chris, Early Childhood Intervention Program Parent, Easter Seals Greater Houston

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A Family’s Journey

Holding on tightly to their faith, Adrianna’s parentsIMG_4592 describe their life with her as a journey.  Adrianna, known as Adri, was born with Down Syndrome. Receiving the diagnosis of Down Syndrome for their youngest daughter was, at first, a shock and hard to process.  They were given encouragement from the doctors at the hospital after she was born, as well as pamphlets and other helpful information to read.  The hospital referred Adri to Easter Seals Greater Houston’s Early Childhood Intervention, discharged her from the hospital, and their journey began.

IMG_4594Not far into their journey, Adri’s “bad gag reflex” created the parents’ first real scare.  She was just 3 months old.  After feeding her, mom put Adri in her swing, the Early Childhood Intervention (ECI) evaluation team arrived, and Adri began gagging.  As mom reported, “I thought she was going to die!”  Due to the gag reflex, mom and dad learned Adri needed to be perfectly still at least 30-45 minutes after she ate, which affected what they were able to do as a family.  They couldn’t drive anywhere with her after feedings.  This lasted a few more months, then the formula was changed, she became bigger, and she outgrew that reflex.  Their second scare came not long after the first scare.  At 4:00 one morning, Adri’s G-button popped out and Adri was taken to the ER.  She came home from the hospital with a foley, and then it migrated into her intestines.  She went back to the ER, taken to surgery, and the foley was replaced with a G-tube…then it popped out, and she went back again to surgery.  As dad stated, “We’re pros now and can replace that button as long as we catch it early.”

Though their journey has had many ups and downs,IMG_4595 Adri has continued to blossom, and progress in all areas of development.  Described as very friendly, Adri has a smile for everyone she meets, waves, and says “hi”.  When she wants something, Adri communicates using gestures, signs and some single words.  Her love for the outdoors prompts her to go to the door, knock, and point.  Adri thrives on social attention.  She gives amazing hugs and takes hold of people’s hands as she sings her favorite songs with them.  Mom and dad report she sings along at church, too, and enjoys the other children there.  Adri receives some food through her G-button, but now eats a variety of foods.  She’s exploring more textures of foods, and feeds herself her favorite Cheetos puff snack.  To move around her home and explore outside, Adri walks behind a push toy.  During her time with ECI of Easter Seals, Adri has been receiving Occupational Therapy, Physical Therapy, Speech Therapy, SST, and case management.  The team works closely with her parents as they’re now working on more independence in walking, feeding, and using more words.

When asked about their experience with ECI of Easter Seals Greater Houston, both parents commented:

IMG_4596“We didn’t have a clue; how will we manage this?  With prayer, encouragement from friends, and help from ECI, she’s made so much progress!  ECI has been a great help and we’ve gained a lot of experience from them.  This has been a long road, but it’s helped her get where she is now.   She’s now independent, gotten stronger.  We’re looking forward to the next steps.” 

Easter Seals Greater Houston’s ECI Program helps children ages birth to 36 months with disabilities and developmental delays achieve their goals in cognitive, social/emotional, communicative, adaptive and physical development. Learn more here.

Sharon Mott, EIS/Transition and Outreach Coordinator, Easter Seals Greater Houston

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Thank You to The Woodlands Children’s Museum

IMG_9003The Woodlands Children’s Museum is a very generous community partner with the ECI (Early Childhood Intervention) Infant Program of Easter Seals Greater Houston.  Beginning in September, the museum has offered classroom space for ECI to conduct group sessions for some of the children receiving ECI services.  The group meets one hour, one morning each week.  Typically, four to six children attend group.  One parent attends group with his/her child to offer support, and to observe strategies the family can also use at home.  Each group session is led by an EIS (Early Intervention Specialist) and an SLP (Speech Language Pathologist).  School readiness and communication skills are the goals of the group, preparing the children for community preschools they may attend after they graduate from ECI at 3 years old.  The purpose of group services is to encourage children to attend, participate, and interact with peers and adults to promote successful transition into school.  The EIS and SLP help develop these skills through a variety of hands-on play activities.  As Abraham Maslow states, “Almost all creativity involves purposeful play”.

Themes for the group activities change each month.  The theme is usually related to a children’s book such as Brown Bear, Brown Bear, What Do You See?; There was an Old Lady Who Swallowed a Fly; and The Very Hungry Caterpillar.  Activities may include interacting with books and songs, movement activities, exploring various textures through play, art, and snacks, and participating in social play with their classmates.

By offering this classroom space, the museum gives IMG_9001children the opportunity to learn in a group setting, which may help them transition easier into preschool.  “Children understand and remember concepts best when they learn from direct personal experience.” (Joseph Cornell)  This partnership demonstrates community agencies working together for the benefit of children, and enhancing their development.  ECI of Easter Seals Greater Houston is very grateful for the opportunity to collaborate with The Woodlands Children’s Museum and we hope this community partnership can continue in the future.

Sharon Mott, Early Childhood Intervention Infant Program Transition and Outreach Coordinator, Easter Seals Greater Houston

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Loving. Growing. Advocating.

Chelsea is a 22 month old Easter Seals Greater Houston client Chelsea L pic (5)who was born with a very rare gene disorder, GATAD2B syndrome, which results in the “loss of function”. There are approximately only 11 cases known worldwide.  Characteristics of this disorder affect all areas of development from cognitive delay, low muscle tone, speech and feeding delays to sensory processing delays.

Chelsea has been in the Easter Seals Greater Houston Early Childhood Intervention Infant Program  (ECI) for the past 14 months.  She receives physical and occupational therapy along with specialized skill training.  Chelsea lives at home with her Mom, Brittany, her Dad, Cody, and her 3 year old big brother, Bradley. With the help of ECI therapists and family support Chelsea has made huge strides over the past 14 months. Mom stated “When we first started ECI services Chelsea was 8 months old she could not even hold her head up.  I couldn’t carry her like a typical baby. ECI has helped Chelsea development in ways I never knew possible.”  Chelsea is currently able to roll, sit on her own for extended period of time, hold her own bottle, beginning to finger feed herself and is able to stand at her couch with supervision to interact with her big brother! Mom stated “I’m more confident now that ECI providers have taught me the skills to help Chelsea’s development.  With the help of ECI my daughter is coming along great!”

Chelsea Linn 2 (1)Chelsea’s Early Childhood Intervention therapist shares that Brittany has become a huge advocate for her daughter and others who have been diagnosed with GATAD2B syndrome. Brittany has even traveled to Austin to encourage funding for this extremely rare gene disorder. Brittany is a true example of the power of a parent who advocates for their child!

Kimberly Sporrer, Early Childhood Intervention Infant Program, Easter Seals Greater Houston

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Countless Success and Growing

Easter Seals Greater Houston’s Early Childhood Intervention Program (ECI) is for children from birth to 36 months and includes a comprehensive range of services including developmental services, speech, physical and occupational therapy, nutrition, vision, hearing and case management services which are all provided in the family’s home or daycare.  All of the children eligible for early intervention have a serious delay in at least one area of development or a diagnosed medical condition that places them at high risk.  Effective September 1, Easter Seals Greater Houston’s ECI program will expand to serve Brazos, Burleson, Grimes, Leon, Madison, Robertson, Walker and Washington Counties. The Infant Development/ECI team will serve 1,400 children each month with countless success stories like Ja’Shawn.

Ja’Shawn is a handsome 34 month old littleJeShawn Blocks 1 boy that has been in ECI since the age of 12 months. He failed his newborn hearing screening at the hospital and was born with asymmetric and abnormal pinnae, which has resulted in a severe to profound hearing loss.  Since that time, he’s received Easter Seals Greater Houston’s Early Childhood Intervention services such as Occupational, Physical & Speech Therapy, Specialized Skills Training, and Case management during his enrollment. With his diagnosis, he also benefits from Auditory Impairment or AI services though the public school system. During the visit-the AI teacher, Ms. Peggy was providing therapy to him.  The uniqueness of ECI’s visit shined though during their interaction. Ms. Peggy and Ja’Shawn were baking cupcakes and frosting them. Ms. Peggy explained they counted the cupcakes, labeled during the mixing, and also washed the dishes when done. These routines based interventions help Ja’Shawn learn to sign each of the tasks. For example, he signed “cookies, please”, “thank-you”, “help, please” He is able to follow 2 step directions and signs up to 3 words together.  Ja’Shawn’s mom, Sabrina, also says he reads lips when other adults are not able to sign with him.

JeShawn 1Ja’Shawn turns three soon and has been evaluated for the PPCD, preschool program for children with disabilities program with his local ISD.  Sabrina is hoping he’s accepted to a special school in the district that has a signing program and ECI will help her advocate for that to ensure smooth transition of services!

If you have concerns or questions about your child’s development, please call 713.838.9050, ext. 385 and request a free developmental assessment.

Early Childhood Intervention, Easter Seals Greater Houston

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Miraculous Little Melody

The following was written by an Easter Seals Greater Houston client parent whose adorable little girl is participating in the Early Childhood Intervention Program.

Meet Melody! She is the baby of her family and the youngest of three girls. And she has each of us wrapped around each one of her precious, short, little fingers.

Melody has been a surprise from day one. It was a surprise to find out that we were expecting again at that time and even more of a surprise when we received a prenatal Down Syndrome diagnosis at 10 weeks of pregnancy. Again and again, during her development in the womb we came close to losing her, but each time she pulled through. God protected her. Knowing she would be born with multiple heart issues, we carefully planned her birth at a trusted hospital where her care team, whom we worked with during pregnancy, was ready and waiting for the big day. I was not expected to go past 36 baby Melody eci 2017 pic 2weeks of pregnancy but again Melody surprised us and waited until just two hours past her due date to make a shockingly fast and extremely dramatic appearance in her Mama’s bathtub at two in the morning with only her mommy and Daddy present. No time to get to the hospital and we barely had 911 on the phone when she decided to join us in great haste. There she was, our beautiful little baby with tons of curly dark brown hair and gorgeous brown eyes. It was a terrifying experience but thrilling to finally meet her! Talk about surprising!! By our God’s grace she was born safely and pinked up and started breathing on her own right away. It took 45 minutes for an ambulance to reach us and in that time we just held her wrapped up in a towel, cried and prayed.

We had had lots of time to prepare since we had an early prenatal diagnosis and so while she was still in the NICU we made contact with Easter Seals Greater Houston’s Early Childhood Intervention and requested an evaluation for as soon as possible once she was discharged. Those days were so very exhausting with all of the feeding difficulties she had so I cannot remember the exact age that she was evaluated by these caring people with Easter Seals’ ECI program but I do know that it was swift and we started both physical and occupational therapy right away. Melody has been such a little warrior princess all along and it has been thrilling to watch her meet milestone after milestone, while we have faithfully worked​alongside our therapists. Even though for the first six baby Melody eci 2017 pic 1months she had two holes in her heart (as well as two other heart issues) multiple illnesses, both a lip and tongue tie (which were both revised at around eight months old) and serious feeding struggles, Melody continues to surprise and wow us; like when she suddenly decided to start breastfeeding at eight and a half months old when her mama had given up the dream of getting to share that bond with her. She nursed for six weeks and then she was done but those were priceless times.

She is truly such an incredible gift from God! One we never even thought to ask for ourselves, but He graciously gave anyway, knowing that we needed her in our lives. She (and her doting big sisters) fills our every day with so much joy! Melody is currently just past fourteen months old and is sitting up beautifully, crawling as fast as lighting, pulling up on everything and showing some real interest in walking! She gives enormous hugs and kisses all day long, waves hello and goodbye, drinks through a straw like a champ, has learned how to fake laugh, blows the sweetest kisses, claps her darling, square shaped, little hands and says “Yay!”. She also says “Dada” all the time much to her father’s delight. She loves everyone and literally draws crowds wherever we go. Grocery shopping with her is a nightmare. Ha! Our family is so very thankful for the Easter Seals’ ECI program and look forward to each session we have with our wonderful therapist. Melody is going to do great things with her life and Easter Seals is making for some fantastic stepping stones.

Mrs. Davis, Early Childhood Intervention client parent, Easter Seals Greater Houston

 

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Appreciating Family Dinner

The following post was written by Easter Seals Greater Houston’s longtime Early Childhood Intervention Program Community Outreach and Program Training Coordinator, Kimberly Sporrer. It shows a mere glimpse of the positive impact her hard work has had on one of countless ECI clients and families she worked with over her 21 years of dedicated service.

infant pic 1

I met with one of my clients today, and Audrey, Liam’s mom, discussed how much progress Liam has made since being enrolled in Easter Seals Greater Houston’s Early Childhood Intervention Infant Program, commonly referred to as ECI.

 

Audrey reports that she is so pleased that Liam can now let her know when he is hungry instead of whining and pointing to various food items. Additionally, Mom discussed that Liam is now able to sit with the family to eat his meals. Before ECI, he would walk around the house while taking a few bites at a time, and he would throw tantrums if made to sit in his high chair. Mom said family dinners are now stress free and so enjoyable!

Mom also stated that she is grateful that she was given the infant pic 2strategies to create a more structured environment for Liam. She discussed that Liam’s ability to anticipate events during the day (lunch, naps, bath time, etc) results in less tantrums and a calmer demeanor.

She is excited and encouraged by the rapid pace of Liam’s progress and is looking forward to hitting new milestones soon!

Kimberly Sporrer, Early Childhood Intervention Infant Program, Easter Seals Greater Houston

Easter Seals Greater Houston’s ECI Program helps children ages birth to 36 months with disabilities and developmental delays achieve their goals in cognitive, social/emotional, communicative, adaptive and physical development. Learn more here.

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