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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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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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