The benefits of Siskin's full inclusive approach are undeniable and have made all the difference in the world for Letty and for us as a family.
Seeing her progress has given us hope and peace for her future ahead.- Carrie, Letty's Mom
Letty was a surprise. We were a happy family of 4 with our twin daughters having just started kindergarten. Things had just started to feel more normal as I had started a new job and the twins were becoming more independent, not needing mom and dad for all things. Then, I found out I was pregnant. I can’t deny that I was a bit scared of what this new normal would bring for our family, but I was also excited beyond measure. Early into my pregnancy it was discovered that Letty had a thickened nuchal fold, fluid on her kidneys, a short femur and a two vessel umbilical cord (instead of a typical three vessel one). All of these signs suggested she may not be a typically developing child, but all of the tests the doctors ran came back as “normal.” As my pregnancy went on, Letty consistently struggled to gain weight as needed. Despite many odds, Letty was delivered at full term without any suspicion of additional medical problems which would slow her development. However, from day one, she was not a strong eater and was always smaller than the doctors said she should be.
The first few weeks of life with Letty were probably not extremely different from many other children. I often joked with my family that if Letty wasn’t sleeping, she was crying. I said it jokingly, but it was true. It was easy to somewhat dismiss her constant crying, refusal to eat, and vomiting for typical early baby development - all babies have a hard time adjusting to life outside the womb and all babies “spit up.” And yet, something felt wrong and different from my experience with my other two children. At 5 weeks old, we went to the doctor for a weight check because just as in the womb, Letty struggled to gain weight once in the world. She had lost weight yet again and I sat in the room with my husband, Letty and our pediatrician, crying, nearly yelling that something was just not right. We worked through a series of questions, and then Letty’s doctor sent us straight to TC Thompson for an ultrasound of her belly. It turned out that Letty had developed Pyloric Stenosis. The sphincter muscle at the bottom of her stomach had thickened over time and it no longer could open to let food from her stomach into her intestines. She was taken into surgery that day. We began to feel some hope that they had figured out what was wrong, and she would be better from here on out.
After her Pyloric Stenosis repair, Letty no longer threw up great volumes, but she was still unhappy. She still did not eat well - every feeding was a fight to get the calories down. We told the doctors that we thought Letty had some reflux because she would frequently arch her back and have milk come out of her mouth and nose at the same time - causing her to stop breathing for a short period of time. She would then cry immediately at the end of this, and we began to call these, “ an episode.” They gave her a low dose of an antacid and after about 2 weeks she seemed happier.
The eating problems continued, though. She gained weight, but only just enough to get by. Because she was gaining, but not at the rate which she should, at first it was easy to explain it away: “She has a cold and doesn’t want to eat”, or “she’s just going to be small,” or “she seems happy,” etc. However, she never cried when she was hungry, never. We always kept up with the time and fed her on schedule. To feed her a bottle was always a fight, but we didn’t know any better at the time. We just wanted her to eat so that she would gain weight and develop normally. We were eventually referred to a Pediatric Gastrointestinal (GI) doctor.
After seeing the GI doctor, Letty was given test after test, which she passed over and over. She did not have an issue with swallowing, they could not find a genetic abnormality and she didn’t appear to have any allergies. We began working with a feeding therapist, changed formula, changed bottle nipple shape and size - what felt like a thousand times. Then, one weekend Letty decided she would no longer be forced to eat. She completely stopped eating.
The next Monday, I frantically took her to see her GI and within a couple of days, Letty was scheduled for another surgery. As a family, we were feeling helpless. We knew something was not right for Letty and after 5 months of trying to figure it out, we wanted some clear answers. During the surgery, Letty received a temporary Nasogastric (NG) Feeding tube. This is a tube that is inserted into the stomach through the nose. She also had an endoscopy. When her doctor came to tell us her results, he explained that the endoscopy had shown that Letty had severe erosive esophagitis, likely caused by acid reflux. In other words, she had ulcers all down her esophagus causing it to hurt when she drank a bottle. He also told us that he had only seen this severity a handful of times, if that, in a child her age. As her mother, I immediately began to cry. I cried because we had answers. I cried because my tiny, 5 month old child had been in so much pain. I cried because I unknowingly contributed to this pain by making her eat.
She started on a maximum dose of two different antacid medicines, and slowly, we could tell she became a much happier baby. Still, she wouldn’t eat. As instructed, even with her NG tube, we still tried to bottle feed her. In the beginning, she would drink some of the bottle before we bolus fed (slowly allowing gravity to pull the milk through the tube to her stomach) the remainder through her NG tube. Eventually, however, she stopped taking a bottle altogether. Originally, Letty just needed to eat a little bit more on her own to make the weight gain she needed, so we anticipated the NG tube to be temporary. But, for some unknown reason, it caused her to stop eating on her own completely. Her feeding therapist told us that she sees that sometimes in children with NG tubes and suspects that the tube going down the throat may have been irritating. We don’t know but through all of this Letty developed what they now call an aversion to eating - this is her official diagnosis in addition to the severe acid reflux.
Over the next 4 months Letty went through another 2 surgeries before she landed with her more permanent, low-profile G-tube. By this time, Letty was 9 months old. We had been so focused on keeping her fed and alive that her physical development suffered. Letty did not do the things that a typical 9 month old would do. She could not sit up. She did not roll over. She could not put anything or bring anything to her mouth. She did not show any favoritism or fear towards adults or even us as her parents. She did not pick up objects. She didn’t crawl -or move hardly at all. She never cried. Now that we had the mental ability to focus on something other than her nutrition, it became increasingly clear to us that she was dramatically behind developmentally.
A friend I worked with shared her sister’s phone number with me. Her sister has a daughter with a feeding tube, and she encouraged me to reach out to her if we ever had any questions. We did and that began our journey towards Letty’s stability and developmental progress. She introduced us to Lisa Spurlock and Family Voices. Lisa immediately got us connected to TEIS (Tennessee Early Intervention Services). I, Letty’s mom, am an educator, and I come from a long line of educators, yet I knew nothing about TEIS. TEIS opened the door to additional support for Letty through physical and developmental therapy in addition to her already established feeding therapy.
The developmental supports which Family Voices and TEIS helped us establish for Letty were a great first step, and we were definitely seeing progress in her gross motor skills especially. However, we both, mom and dad, work full time, and it became increasingly difficult to schedule multiple different therapy sessions in coordination with our work as well as our other two daughters’ schedules. Yet, we continued. Letty had some type of therapy twice a week either in the setting of our home - one on one with the provider - or in the hospital at the therapy clinic.
One day, I reached out to my friend whose daughter also has a feeding tube, and I asked about her experience with Siskin. She raved about what a blessing it had been in her daughter’s life as well as her family’s and that if we had the opportunity for Letty to attend, we should consider it. That’s when I reached back out to Lisa with Family Voices who helped guide me through the admission process and sign up for the waitlist.
By Letty’s first birthday we were blessed to find out that she would be able to attend Siskin’s Early Learning Center. When Letty began at one year of age, she could not sit independently but could with support. She could not move about a room. She could grasp objects but could not bring anything to her mouth. She did not allow any food, sippy cups or bottles into her mouth. She still did not show favoritism towards familiar adults or fear towards strangers. She really did not communicate much. She would play with toys, but could only grasp one at a time. As you can see, she had made some progress, but was still significantly behind where a typically developing 12 month old should be.
She has now been part of Classroom 9 at Siskin Early Learning Center for 7 months and is 19 months old. She has made progress by leaps and bounds! In this time, Letty has learned how to sit independently. She can move around a room as she wants by scooting on her bottom and cruising on furniture. She just recently started “hitching.” It looks a lot like a bear crawl, but her physical therapist says that it’s the next step before walking. We are overjoyed at the thought of her starting to walk! She brings objects to her mouth like any other child her age exploring her surroundings - I have to remind myself often that I prayed for this progress because she is literally into everything! This child even has a handful of food items she enjoys eating. She drinks water on her own from a sippy cup and “talks” constantly, even using real words some of the time. In her classroom, they have taught her how to communicate through sign language which she regularly uses at home. She cries when she’s mad and tired or irritated at her sisters. I know it sounds crazy to celebrate this, but she hardly communicated at all just 7 months ago. Now, she’s often described as “sassy.” She knows what she wants or doesn’t want, and she’s not afraid to tell you.
Letty was slowly making progress with the interventions put into place before she began at Siskin, but the interventions were isolated events - scheduled appointments that interrupted her typical day. However, once she started at Siskin Early Learning Center, she soared. I know without a doubt in my mind that her rapid progress is because of the full inclusive model which Siskin creates. Letty receives all of her therapies in the classroom with her peers, doing the same activities as her peers but with the added support of her therapists pushing her toward her developmental goals which we determined together as a team. Her occupational therapist who does feeding therapy with her, comes into her classroom and sits with her on the floor as Letty sits at the lunch table with her peers and does Letty’s therapy while she “eats” lunch with her friends. Her physical therapist does the same but during play time in the classroom or on the playground - wherever the class is, that’s where therapy happens. Letty still has her feeding tube, and we don’t know how long she will need it, but it’s clearer to us everyday that regardless of whether she has it for the rest of her life or not, she will not be stopped from doing or getting anything she wants in life.
The benefits of Siskin’s full inclusive approach are undeniable and have made all the difference in the world for Letty and for us as a family. Seeing her progress has given us hope and peace for her future ahead. All of Letty’s providers, but especially her developmental therapist and her physical therapist (also with Family Voices) have been a support system for Letty but also for our family. It can be difficult having a child with special needs. Life is different and not as we imagined it would be when we first learned of a new life coming into our family, but with the guidance, compassion and listening ears of Letty’s support system through Family Voices, TEIS and Siskin we have come to find that our family is better and stronger than we could have ever imagined before and it’s all because of our little surprise Letty Bug.
Written by and in the perspective of Carrie (Letty’s Mom) and also approved by Zack (Letty’s Dad)