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I have gone back and forth whether or or not to write this post and if this was the space for it. Maybe it’s not, but I feel like we share so much of our lives with you that I should also share this. My daughter Lea just turned five and she’s thriving. Why is that such a big deal? Because 4 1/2 years ago we weren’t sure what her life or our life for that matter would look like.

I’ve really only talked about this one other time in a very early blog post so let me rewind for those new or who don’t remember. When Lea was 5 months old we noticed she wasn’t using her arms. They were just “limp”. She couldn’t do tummy time, she wasn’t reaching for anything, no rolling. For lack of a better word she was just kinda a blob. But a cute one. I, being the one that constantly worries was a little freaked out but my husband didn’t want to rush to conclusions and we decided to wait to talk to the doctor at her 6 month checkup.

It was there I learned a word I had never heard before. Hypotonia, which means she has “low muscle tone.” The cause of hypotonia could be anything from Cerebral Palsy, to a metabolic disorder, to genetics and unfortunately sometimes they never figure out the why. Our doctor told us we would first head to Neurology, and also start physical therapy. The next few months were a blur of tests, doctors visits, and hospital stays. In all she’s had 5 inpatient EEGS, 2 spinal taps, 3 MRI’s and more blood draws then I can count.

I remember leaving that first doctors appointment and calling my mom. I was sobbing and asking “WHY?, WHY? us?!” She just kept saying that no matter what Lea was loved and that God put her with Tim and I because he knew we would take care of her and be able to handle it.

It was in 2017 when she got her first diagnosis. She has a duplication on her X chromosome. While this could cause some complications they didn’t fully think it was the “Why”. So we continued on with testing.

Shortly after her first birthday she learned how to crawl.

And before she turned two she learned to walk.

I remember being so happy at this point. She was excelling so much more than we had thought originally! She continued with physically therapy weekly and we continued seeing her neurologist for answers. It was right before her third birthday and we had a routine visit with her Neurologist. I expected just the regular check-up and continue on with therapy. I snapped this as we were walking into the wing of the hospital and I’m so glad I did because it was the day that changed so many things.

At the appointment we were given our WHY. Why she had low muscle tone, WHY she continued to struggle with gross motor skills and WHY she continued to need therapy. She was given the diagnosis of Congenital Myasthenia. It’s a neuromuscular disorder that creates low muscle tone and causes extreme fatigue. The good news is that it is not a degenerative disorder so she’ll never get worse but it will also always effect her. Her doctor informed us that there was a hospital in Virginia that was using a medication to treat kids with this disorder and seeing good results. He was going to reach out and find dosing information and get back with us. I left this appointment shell shocked. I wasn’t expecting to ever know a WHY and I also wasn’t expecting there to be something out there that could really help her.

It would be a few months before the pieces came together and they could start her on her new medication. During that time she learned a new skill right after she turned three. Jumping!

Right before her 4th birthday she was put on the medicine that has made her life SOOOO much better. She has since learned how to climb stairs. She’s able to walk around the block without breaking down and saying she was to tired to go on. She has started a ballet class and is even going to try soccer! While she does wear SMO’s to help her walk, a compression vest for stability and continues weekly PT if you ever met her you would never know the challenges she has faced.

She is FIVE and THRIVING.

If you have read this far, thank you. It was something that I truly just needed to get out of me. We are so thankful that she’s excelling and I just had to document it.

~Julie // Sisters that Shop