Adventures with Ellie: 5th Day of Christmas

I know what you’re thinking: “This lady has clearly needed a therapist for years… glad to see she’s finally getting help.” Ha! Sorry to disappoint you, this blog is the only therapy I get, folks. Today’s post is about all the people that poured into the first three-ish years of Ellie’s life through Early Intervention. Let’s start from the very beginning: I was 18 weeks pregnant and we’d just found out that we were having a girl and that she had Down syndrome. After two days of crying and fearing for our future (and only sharing our news with immediate family members), I made a phone call that would change everything.

I called Shelby Hills to ask them about their Wee School program. This was a program that my nephew had attended and I knew that he had classmates with different abilities and I remembered seeing pictures of two little girls with Down syndrome in his photos. I had no idea what I was going to say or who I needed to talk to, but on that day, I needed someone to tell me that they’d help me. They knew what to do (because I certainly did not) and they would help navigate my way. Shelby Hills told me that the Help Me Grow program through the health department was actually the program that would get the ball rolling for Early Intervention (the home-based program that replaced Wee School in our county).

When I called the number they gave me, I completely unloaded my baggage to the woman on the other end of the line. Her name was Ashley and she listened to me for a while, then we had a great conversation (and I shed plenty of fearful tears) about how this program worked and what steps would be taken prenatally and once Ellie would arrive. A few weeks later, Ashley would come to my house to meet with me and go over more details about enrollment, what to expect, and offer much support. She also told me that all of these services were provided for FREE! Free, y’all. That’s incredible. Because Ellie has a diagnosis, she’d automatically roll into a home-based therapy program and a team would be out to evaluate her once we brought her home. What a relief. I had help. I had a whole team of people who actually knew what to do and would be in my home every week to make sure Ellie would get all the care she’d need. For the first time, I felt like we could handle what lay ahead. I told Ashley about this later, but she has NO idea how big the weight was that she lifted that day. She is one of the reasons that I’m so very thankful that we had a prenatal diagnosis. We could line up the teams we’d need to help Ellie reach her full potential before the chaos of her arrival. Bonus!

Once we brought Ellie home, a team (not kidding, I think five people) came out to our house to do an evaluation on Ellie and fill out paperwork with me. The therapists moved Ellie around, rang bells, moved objects around her, and evaluated EVERYTHING. In the back of my mind, I couldn’t help but worry how well Ellie was doing on this test. I’m sure it wasn’t great… and that tore at my soul a bit. They rang a bell on either side of her, then rambled off a certain number. Since Ellie made no indication that she heard said bell, I was sure we were failing miserably. Nonetheless, the whole team remained upbeat and assured me that Ellie was adorable and doing great and they’d be back with a plan. In the midst of this, our boys ran around the house – Ashley tied blankets over their shoulders like superhero capes and they were obsessed with the box of “toys” the OT brought with her.

Soon after, Ellie would start weekly therapy sessions with OT and PT. Her Occupational Therapist was Kendra. Kendra would come to our house with all kinds of fun things for Ellie to play with. Our Physical Therapist was Andrea and PT Assistant, Molly. These ladies would also bring things for Ellie to play with, but they also had a lot of hard work for Ellie to do each week. We didn’t get too far into therapy when Ellie went into heart failure. We only had two months at home before she was admitted to Cincy. Then we’d have a hiatus until Ellie was almost seven months old. At seven months, we were home and resuming therapies, but Ellie had just slightly more strength than a newborn. She couldn’t hold her head up yet. She couldn’t roll over. We hadn’t had much time (because of her several surgeries) to practice tummy time, either. At an age when our boys were sitting and starting to try to get on their hands and knees to crawl, Ellie wasn’t supporting her head, yet. This was hard. She also wasn’t eating by mouth at all, really. After months of feeding tubes and exhaustion from heart failure, she had no interest in a bottle. We could dunk a spoon in baby food and sometimes she’d eat it… but we’d be lucky to get down 1/6 ounce. That’s a TINY amount.

On our first OT appointment back home, I had a meltdown on our therapist. I said, “What if she never eats? What if she never talks? What do you think is realistic here? I know it’s not the end of the world, but if she’s eight and gets invited to a pizza party – I want her to be able to eat pizza… even if it’s just a little bit.” Yes, this is a true story… yes, I used the pizza party example… I never said I was rational, folks. My daughter was seven months old and in bad shape, and I was worried about a pizza party when she’s eight. Ha! I like to say that I was concerned with the big picture here.

I remember Kendra so sweetly pointing out all of the things that Ellie does that she sees as positive signs that Ellie will be just fine. She said, “Look at how she looks at you vs. how she reacts to me. Look at how she interacts with Lance vs. Kaleb.” Yes, she was just laying propped up in that boppy or strapped into that Tumble Forms chair, but she did interact differently with each person. She made no sound over her trach, but she was showing personality and clearly had preferences in her interactions. These were signs that she was very social… and that while talking would take a long time, she should be able to do it eventually. And while she wasn’t eating, she was gnawing on all kinds of things. Kendra said, “As long as it’s safe, let her put things in her mouth… tubing, cords, toys, blankets… we need to expose her mouth to as many textures as possible because sometimes it’s not that a child doesn’t like a taste, it’s usually that they can’t tolerate certain textures.” If a child has an aversion to a certain texture, they’ll eliminate any foods that have that texture. It only takes a few texture aversions to eliminate almost all foods. Hmmm… that makes sense. So away we went, letting Ellie put everything in her mouth… and purchasing chew sticks and z vibes and textured spoons and lip blocks. A good portion of OT at this stage was feeding therapy.

For our PTs, Ellie would work hard, but sometimes she’d amaze us at how she’d cheat through things – like when she’d swing her legs around like a windmill as she was learning to sit up, or how she’d use her legs to scoot across the floor instead of putting weight on her arms. We’d spend so much time giving her a core workout reaching for things. Ellie would always amaze us as she figured out ways to get around the really hard work – I’m telling you, she’s a problem solver! She still put in the work, though, and while milestones were few and far between, they were met with grand applause and excitement. Our therapists would find creative ways to get Ellie to do the work – having her pull her stuffed animals on a blanket so that Ellie didn’t realize we were trying to get her to walk backwards, putting stickers on her shoes so that she’d try to get the sticker – therefore standing on one foot. Basically, therapy was a series of games that I would have NEVER thought of that’d get Ellie to put in the hard work of pushing through her extensive hypotonia and wonky loose joints. I was always amazed at how many techniques our therapists would come up with to get the job done.

We met periodically with our Speech Therapist while Ellie was really little, but she started playing a much bigger part when Ellie was two. Alison came over to talk to us about all the little things that go into speech that don’t involve talking at all (like taking turns, eye contact, and many aspects of play). While I felt like Ellie was doing well learning sign language and using it when we asked, there was one thing that we hadn’t heard… and I broke into tears when I nervously asked about it. Ellie was two years old and we’d never heard her laugh. That broke my heart. She was finally making more sound, but her laugh was still completely silent. As much as that silent cry hallowed out my being when I first saw it after her tracheostomy, the lack of laughter for two years was worse. She laughed, yes, but didn’t make a sound while doing it. If you’re a parent, I’m sure you remember squealing with delight when your baby started to coo… and you melted when those first little happy bursts came out. When your baby was a few months old and started to giggle from his/her toes, you lost it. We’d been waiting for this… waiting and waiting. At two, we still had no giggles… and admitting this to her therapist was awful. Looking back, it really hasn’t been very long that Ellie’s been able to giggle. She turned three in September and we really didn’t hear a giggle until this summer – but she started giggling while we were at the beach. The waves crashed around her and that little chuckle came from her toes. I was in tears. Way to save that happiness for the best possible experience, Ellie!

Kendra, Andrea, Molly, and Alison were at our house every week. They gave us ideas and “homework” to do each week and we’d share these things with our nurses. They’d bring out tools we could use and show us how to use the things we already had as makeshift therapy tools. I probably drove them crazy when I’d email them about toy ideas for birthday or Christmas gifts. I’d email when I wanted to buy Ellie a new pair of shoes, or when we’d get an amazing report from the Developmental Clinic. These ladies have been with us through defeat and watched Ellie hit each milestone.

Ashley still came out to see us, but this time as a Developmental Specialist. We’d also meet with Diann to come up with goals every six months. We’d meet with Nancy Stiefel, the director of Early Intervention, too. Nancy planned our EPIC group meetings - like pool parties and playground days in the summer. When it came time to plan for our first IEP meeting, this whole team came together again (along with preschool staff) to help formulate a plan and set goals for Ellie. I cannot say enough about the support system we have in Shelby County. I’m forever grateful that we did not have to move our family in order to get the best possible care for Ellie.

This past spring, I worked with Melissa Rittenhouse at Shelby Hills on some “natural environment” photos (photos of Ellie in our home) to use for their website. Melissa also scheduled some time for a video interview about their program. I couldn't love this video any more. If you haven’t watched this, take a second to at least appreciate a great photographer and his video editing skills… and Ellie’s adorable in it, too.

As I was typing this, Ellie walked out of my room while taking a bite out of a banana she’s carrying. As she left, she grabbed my door handle, said & signed “thank you” and shut my door. A little bit ago, she came up to me, tapped me on the leg saying, “mom… mom”. She signed “eat” and then, “hungry”. I asked her what she wanted and she said, “ummm” then signed “banana”. I know this doesn’t sound like much, but to me, this is a huge success. She’s amazing! And she didn’t get this way on accident. Many professionals have logged countless hours pouring into this kid and she’s soaked so much of it up and used these skills as a launch pad for future development. While she speaks a language that not everyone understands, she speaks it well and knows how to use her words. This is amazing to see. High five, therapy team, high five!

We have no shortage of photos taken during therapy sessions... here are just a few:

Andrea using leg immobilizers with Ellie - this was her 1st time standing, ever.

I was so excited. Ellie was about 13 months old here.

Epic playgroup Halloween party 2015 - Raggedy Ann playing with Molly.

This is a bit out of focus, but Ellie was working with Alison at another Epic group.

And with Andrea again - playing with farm animals to try to get Ellie to stand again.

This past summer, Kendra started working on preschool skills with Ellie - sitting in a chair, using school supplies, listening to directions... I couldn't contain my excitement here.

Ellie loved the dobbers.