Hypotonia Health Update: My Daughter’s Journey To Completing Her Last Major Milestone!
Hi everyone! I have a wonderful update for you. I haven’t posted about my daughter, Evangeline’s health since July so I thought I would today and it’s a huge update! As some of you may recall, my darling daughter was born with hypotonia (low muscle tone) and has been seeing a specialist at Yale Children’s Hospital as well as a physical therapist. She’s been working hard to beat the odds and reach all of her milestones and I’m so very proud to announce that she finally HAS! Yes, she finally reached her walking milestone which was the BIG ONE!
Her Progression
She began walking in late October, early November, but she would only take a few steps then go down to crawling. At first, she would go about three steps, then five, then eight, then 10. On November 14th, she stopped crawling and just kept walking! That would be two days shy of her 18th month of life. Nowadays, the age for walking is considered 15-18 months so she’s right on track!
Being silly in her stroller (which she hates!)
When she first started taking steps I started crying. It was such an emotional joy for me to see her taking steps on her own. It was something we were waiting for with baited breath. Then as she got better and better our hearts just got happier. And when she finally just stopped crawling, it was like a rock was lifted. I honestly felt relief. And that relief was because I knew that she would be okay. Despite what her specialist said, she was going to be fine. She would lead a normal life. She’s a fighter!
Her Follow-Up at Yale Children’s Hospital
Last August, Evangeline had a follow-up at Yale Children’s Hospital. Her specialist told me she would walk between 18-22 months. At the time she would pull herself up and she was crawling. He still felt her hypotonia was severe and he wanted to get an Invitae panel done on her. This panel checks for several types of cardio myopathy. He wanted to find out what she had so we could know why she had it. I agreed to this. Instead of a blood draw, I had to do a saliva draw, i.e. using a q-tip I had to swab her mouth and then drain the saliva into a little tube. Two of them. While pregnant. Did I mention how everything made me nauseous? It took me 30 minutes to do each q-tip. I must’ve gagged several times and almost threw up a couple of times.
In December, we had her next follow-up appointment. Her specialist had wondered why I had never called him to get the Invitae panel results we had done in August. Once he took a look at Evangeline walking and playing with her big brother, he knew why that test wasn’t a priority anymore. He finally smiled and said, “Her hypotonia isn’t as bad as we previously thought.” Hallelujah, praise Jesus!
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The Results
So then it was time for the results. We all sat down and waited to hear what the results were. A mutated gene. Apparently, they had found something, but no one knew exactly what. They had found a mutated gene. To find out if this mutated gene was a fluke or passed onto her by us, Henry and I would have to be tested. Either way, Evangeline was done. She had reached her milestones. She was healthy and happy and progressing extremely well.
She loves the tire swing!
Her next follow-up appointment with the specialist would be for a year later, December 2018. In the meantime, she would continue with physical therapy because it has proven to be effective.
Henry and I agreed to be tested for this fluke gene. As of this writing, we are still waiting for the results.
The Future
The future looks bright for us. Recently, I was reminiscing back to the day when Evangeline started physical therapy. I remembered the urgency I felt in having her go twice a week; requesting that she be put on the aquatic therapy waiting list; and researching other programs she might benefit from. She was so little back then. Physical therapy was new. Now, it’s her weekly thing. She loves Rosie, her therapist (we all do)!
Now that she’s completed her milestones, we’re working on her upper body. Her therapist and I discussed giving Evangeline a break from physical therapy, maybe a few months. Her pediatrician and I would rather she continue, so I asked about aquatic therapy again. Tomorrow is her next PT session so we’ll find out when she can begin her aquatic therapy. If she’s not able to do this, her therapist also suggested swimming lessons. After this break from regular physical therapy, she can come back and resume her sessions with Rosie when it’s time for her to run and jump. I guess you can say those will be her next goals!
That’s it for now. Thanks for taking the time to read my darling daughter’s health update. Stay tuned for more updates as she gets older. 🙂
Cheers!
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Hypotonia Health Update: My Daughter’s Journey To Completing Her Last Major Milestone! is a post that first appeared on the website: Baby Henry Likes on February 28, 2018.