Fourteen months. That’s how old Evangeline turned today. Fourteen months. What is she like at fourteen months old? Well, I can tell you that she’s smiling, laughing, crying when she’s sleepy or hungry, curious, but above all, she’s exploring.
Okay, well aren’t all babies at this age? Yes, most babies at this age are. But she’s different. If you recall in my last post regarding her hypotonia diagnosis (My Daughter The Superheroine), a neuromuscular specialist at Yale Children’s Hospital told me Evangeline would lead a mildly normal life, that if she were to walk it would be around 18-20 months, or 2 years, or never. A week later, she started walking using the railing from her crib.
That was two months ago. So what has happened in two months? Tons!
So usually babies go from sitting, to crawling, to standing, to walking. Not this kid! My little girl did everything backwards, out of order, in a funny way. In truth, since she started pulling herself up on everything and walking, we thought she wasn’t going to crawl. And I was fine with that. Remember how distraught I was when I thought she might not ever walk?!?! Yeah, crawling was not a thought on my mind. I understood that it would be good for her to crawl so she could build those upper muscles, but I just wanted her to be able to walk! And she did! So for her therapy sessions, we went with what was working. Her therapist had me work on some exercises to help nudge her to crawl, but this wasn’t a priority. We worked on kneeling exercises and we did standing exercises. With twice a week sessions, I saw a rapid progression in Evangeline’s physical ability. She didn’t want to be seated anymore. She wanted to pull herself up to standing and then start walking!
Then one day, exactly one month after her Yale visit, on June 19th, she started crawling. Hubby Henry was FaceTiming his mom when he pointed the camera to Evangeline and she started moving. Grandma said, “Oh she’s crawling?” Henry told her he’d call her right back. I was working on my ASMR videos and he had me stop and go see the news. It was the cutest thing ever. My little girl was crawling! And she wasn’t getting tired. Three days after that, she learned how to sit herself up! So she went from walking, to crawling, to sitting! And you know what? I don’t care! I don’t care that she did it out of order. I was just so happy that she was reaching all her milestones.
Birth to Three Evaluation
A week after little princess started crawling and learning to sit herself up she had her Birth to Three evaluation. I had made this appointment about two weeks prior. Two therapists came to evaluate her, one an occupational therapist and the other a physical therapist, both very nice. They told me she would be evaluated based on a numerical system and they would be asking me a bunch of questions as well as observing how she played and moved along. I explained that when I had filled out forms for this program, four weeks prior, she couldn’t do much, now she was moving all over the place.
To qualify for this program, she would have to fail (hate this word but I can’t remember the exact word they used) one major motor skill or two minor ones. I’m going to be completely honest, Evangeline was now on par with other kids her age so I had a feeling she would not qualify for this service. And what is Birth to Three? It’s an at-home therapy session where a therapist comes to your house and teaches the parent how to teach the child to move. In truth, this is what her therapist does anyway. She observes and plays with Evangeline and then tells me what I should do at home with her.
At the end of the hour-long evaluation, they informed me that Evangeline didn’t qualify for the program. She was average and below average which they said might sound bad, but in actuality isn’t. She scored an 84, one point shy of 85 which is normal. I guess it’s out of 100. I didn’t ask that part. They said she’s progressed very well and to keep up the good work!
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Physical Therapy Evaluation
A few days after her Birth to Three evaluation, it was time for her physical therapy eval! Her therapist
observed her and using a checklist, told me that my 13-month old was at an 11-month level. She had reached all of her previous goals and now we were setting new goals for her. We were also going to bring down her therapy sessions to once a week, which also coincided with what her insurance would allow. Two sessions per week were only allowed until the end of June. So now she goes once a week to see her therapist.
Right now we’re working on using the stairs as stability exercises and the wall for balance. Every session we go to, her therapist mentions how she keeps getting stronger and stronger. Next month, in August, she has her follow-up appointment with the Yale specialist for the muscle biopsy and electromagnetic test. I put a call in to the doctor to discuss her progress, but he’s out of town on vacation and won’t be back for another two weeks. I’d like to discuss her test results and see whether he still feels she needs the more invasive tests. She’s progressed so much since that appointment with him. I’m also very excited to tell him, “You were wrong!!!” Of course, I won’t actually say that. But he’ll know it 🙂
And Now a Word From a Fellow Blogger
Before I close this post, I want to share something very special with you. When I shared my post on Facebook, I received this comment from a blogger named Victoria. Here’s what she told me: “Im about to share on my page. So beautiful! ? my little sister has cerebral palsy, epilepsy and brain damage from strokes as a newborn and possibly in the womb. We were told dozens of times that she wouldn’t hit certain milestones, if she lived. She’s now 19 and just graduated high school :’) she’ll never be able to live by herself but she walks and talks and is just such a light in my life. Never ever lose that hope and that fire that drives you to be the very best you can for her and to have faith in her, because she will always surprise you and make you proud. Watching your child grow is beautiful for every mother, but there’s something a little more to it when you watch your kid learn to do things you were worried they might not ever do.I connect with this in a very real way and you made me cry. Beautiful beautiful beautiful!”
Since Victoria and I are both bloggers, we decided we’d like to collaborate on a few posts. So below, I’d love to leave you with some words from Victoria about her dear sister. If you’d like to read more about Victoria and her sister, you can visit Victoria’s website: My Momtastic Life.
Finding out that your child has a disability is heartbreaking and can leave you feeling completely lost. It’s not something that I’ve personally had to face as a mother, but it’s near and dear to my heart nonetheless. My younger sister has several disabilities, most notably epilepsy and cerebral palsy, as well as brain damage from having several strokes throughout her life and possibly in the womb. We were told countless times that she would never walk, never talk and at one point, that she wouldn’t live past a few weeks old, and she has surprised us all! She just turned 19 this past May, and she is such a beautiful soul! Through loads of physical therapy, surgeries and a positive attitude, she has blossomed into a wonderful young woman whose abilities have completely surpassed our expectations.
I recently came across Jacqueline’s post, “My Daughter The Superheroine,” and I immediately reached out to her about how happy I was for her family, and how much the post touched me. It brought back memories of my mother remaining strong through everything our family has gone through in regards to my sister’s disabilities.
My sister’s name is Michelle. When she was born, we weren’t aware of any health issues. My mother felt like something wasn’t right, but the doctors and nurses assured her that everything looked perfectly fine. When she was 6 weeks old, we were driving home from visiting family when she turned blue and began seizing. We rushed her to the hospital, but even still, the seizure lasted well over an hour. We were told that she would most likely not make it, to the point where we had a Priest come perform last rites and pray for her.
Somehow she stabilized and woke up a week later. What a blessing! The doctors weren’t sure exactly what was going on, and it wasn’t until she was 9 months old that she was diagnosed with epilepsy and cerebral palsy. She also has suffered several strokes that have severely affected her eyesight on the left side, as well as damaging her brain further. We were told so many times that she would never hit certain milestones, only to watch her grow into them at her own pace! There are some things she will never do, and she can’t live alone, but it has been so beautiful watching her grow and learn new things that we thought would be impossible. She has such a great outlook on life, and always manages to joke and laugh, no matter what life throws at her. It’s something I’ve always admired about her. You would think that I would the one staying strong for her and keeping her from feeling scared, but it really is the other way around. When I’m worried about her, she cracks a joke or acts so positive that you can’t help but feel calm about what she’s going through. If I let fear defeat me every time we received bad news, I wouldn’t be able to function or be the sister she needs and deserves. With that in mind, I always prayed and put on a brave face, because that can change your entire experience.
Thank you for letting me share a little bit of my story! You can find me at My Momtastic Life, where I write articles about motherhood, DIY projects, activities for kids and child development. My mom is currently working on an article about Michelle’s disabilities from her perspective, so keep an eye out for more on our journey!
Thank you, Victoria, for your kind words and for offering some hope and inspiration to us. I’m so happy that your sister has proven everyone wrong and I’m thrilled at all the progress she’s made! She’s a great role model for little Evangeline! And Michelle has grown up to be such a beautiful young lady. Bravo and cheers to her and to your whole family for being a great support to her 🙂 To read Victoria’s post where she talks about her sister, visit her post: The Importance of Remaining Hopeful With A Child With Special Needs.
That’s it for this post! I hope everyone is as happy as I am at my daughter’s progress. I can’t wait to see what the next few months will bring!
My Daughter’s Hypotonia Update and the Funny Way She Reached Her Milestones is a post that first appeared on the website: Baby Henry Likes on July 14, 2017.
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