Just What We Needed: Parenting a Child with Hypotonia

April 11, 2018 April 2018 Feature - CNS, Central Nervous System, cerebral palsy, Family Stories, hypotonia, low muscle tone, occupational therapy, periventricular leukomalacia, physical therapy, Uncategorized 1 Comments

When we were matched with Hailey, she was 6 months old, and we were blessed to call her our daughter! We waited over 18 months to see this sweet girl’s face, and could not believe the day was finally here.

With her referral information, we were given the results of a CT scan, which showed our girl had suffered a brain injury at birth and, at first glance, the report showed she may have had a stroke. We did not know what this would mean for our girl, but we knew God gave her to us so that we could help her through whatever was to come. We did not realize how much more our sweet Hailey bug would help and teach us!

We got updates on her and she seemed to be doing well. She even crawled a tiny bit in one of the videos we received. It was a small army crawl and only a few inches, but we were encouraged! However, when we brought Hailey home at 10 months, physically, she was more like a 4 to 6 month old. There was no crawling, she could not sit up on her own, she didn’t really babble, and she was “floppy.” We worried, what does all this mean, and what will our future hold?

There were so many emotions, and a lot of uncertainty. We kept asking ourselves, are we going to be able to give her all that she needs? I cried a lot of tears and prayed a lot prayers for strength to be the mom Hailey needed. Our 10 month old was not able to do typical 10 month old tasks and activities, so she also cried a lot. She cried with frustration, as well as having to cope with new parents, a new older brother and a new environment.

Two weeks after we brought Hailey home, we had our appointment at the International Adoption Clinic. Hailey was assessed by the doctor, a psychologist, a physical therapist, an occupational therapist, and a speech pathologist. It was here that we learned about hypotonia, also known as “floppy baby syndrome”, which means low muscle tone.

The therapist explained to us that Hailey would need therapy to help build up her strength, and to teach her body to do tasks that typical babies automatically know how to do. This would include crawling, sitting up, pushing up to stand, and even walking. There was great support from the therapists and the doctor we saw, and on that same day, we scheduled Hailey’s first physical therapy appointment and received our neurology referral.

Leaving that appointment, we were glad that we were going to start getting some answers about Hailey, and so be able to give her the help that she needed to thrive. However, answers don’t always take away the fear of the unknown that still lies ahead. Our lives not only were changing and adjusting to a new child, but to a child whose needs we were still deciphering.

Our schedules and activities needed to start accomodating Hailey’s therapy times and all the appointments. The week after our appointment at the International Adoption Clinic, we started weekly physical therapy, at 18 months we incorporated speech therapy and, soon after, occupational therapy was started. They were able to co-treat speech with the other two therapies for a while, which was nice, because it meant only going to the therapy center twice a week instead of three. The therapists were always reassuring that new skills would come, even when I still questioned if our girl would be able to walk.

It was working with Hailey in therapy and at home on her exercises that we could see that the strength she lacked in her physical body was found in her determination and her will to progress. Due to the hypotonia, Hailey has to push herself that much more to do tasks.

And Hailey works so hard!

Doing the simplest of tasks for Hailey takes a lot of energy, effort and motivation. They use toys at physical therapy, but even playing for Hailey was hard. The physical therapist even had her practice walking on a treadmill. Hailey would get tired, but she did tasks even through tears.

We met with the neurologist soon after coming home. She said to continue doing the therapies, and at the age of two, we would have a brain MRI done that would help us determine what exactly happened with the brain injury. The wait to get the MRI done was painful, because we weren’t sure at that point if other brain related conditions could happen, such as further strokes or possible seizures. After a year of Hailey being home, and still needing answers, the MRI was finally done. We learned at this point, that Hailey did not have a stroke. Rather, she had periventricular leukomalacia (PVL).

Believe it or not, we were thankful that this is the injury she had. We learned that PVL is considered a condition under the cerebral palsy (CP) umbrella. We also learned that this brain injury was a one time event, and that Hailey would not experience any further neurological deterioration or episodes. Good news!

The neurologist again told us that our plan of treatment with therapies was what Hailey needed. Hailey was still not walking, she drooled excessively, we had to get orthotics/braces for her feet to help give her more stability. And she still wasn’t making many sounds and words… I still had yet to hear her call me “mama.” The neurologist said that we were doing everything we could, and that each child and circumstance is different, and we can’t truly predict what will happen. Again, we looked to our faith and trust in God’s plan to keep us moving forward.

So we have pushed on, and we have continued working with Hailey to teach her how to move her body, to walk, to talk, to eat on her own, to put multiple words together. She started walking at 26 months, and soon after that more skills started increasing, including her vocabulary and her ability to call me “mama”.

We continue to take her to therapy, and she attends a special needs preschool. We have our struggles, our good days, our hard days. We have days we just wish we could take a break from therapy. I say we, because Hailey’s hypotonia, which is a result of her PVL, is not just hers. We all had to learn to navigate this world of low muscle tone. This has become our normal. There are less sad tears, more happy and excited tears, and lots of joy!

We thank God every day that we have had this chance to be Hailey’s parents, to work with her and encourage her, and to be here for her struggles and her successes. Even when we had days we didn’t know if we were enough for Hailey, God knew we were.

Most of all God knew we needed Hailey. Hailey is amazing! She has the greatest sense of humor, she gives the best hugs, she is so smart, and she has the absolute best laugh. She loves her brothers and us, and shows us daily how caring and sweet she is.

Though she needed us to teach her how to make her muscles work, she has taught us so much more.

She has taught us courage.
She has taught us that no matter your abilities you can succeed and do things that others thought impossible.
She has taught us how strong someone with low muscle tone can really be.
She has taught us that the strongest muscle you need is your heart… because anything is possible with love.
She has reminded us that God is love, and anything is possible with God.
And she has taught us that saying yes to God’s plan, even when it can seem hard or scary, can be the most amazing journey!

– guest post by Jennifer

One response to “Just What We Needed: Parenting a Child with Hypotonia”

  1. Leslie McDaniel says:

    I needed to read this and needed the encouragement. My 4 month old son is hypotonic but has no diagnosis. I’m so scared. He will start therapy very soon. I just still can’t believe this happened to our healthy baby. The unknown is also so hard.

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