Our beautiful baby girl, Beckett is now 18 months old. We first noticed she was experiencing developmental delays when she could not hold her neck up straight and as a result developed plagiocephaly and had to wear a helmet for a few months. With that, she started seeing a PT at just 4 months old. Since then, her PT and doctors have noticed more delays as she has continued to miss major milestones. She still cannot sit by herself, stand, crawl, or walk. She can reach and hold things now, which wasn't so easy at first. She can also roll over (YAH!). We have, what feels like, had every test imaginable to figure out what is wrong with our baby girl. All tests have come back normal (MRI, Genetics, Blood work, Audiology, ophthalmology). The only thing we have been told is that is has low muscle tone - hypotonia. If you try to look up hypotonia though, you will read: it is a symptom not a diagnosis. Which is the frustrating part for us: WHY is this happening to our baby!? No one can tell us anything. We have heard "she will get there, it will just take time..." OR "we dont have a crystal ball, its too early to tell..." OR the best one: "Lets try MORE tests....." I know everyone is trying and the docs have been wonderful and supportive, but I pray that there is more we can do.
I had a normal pregnancy, no complications, never sick, and she was right on time being delivered. She came out in 11 minutes! So no complications during delivery either. When she was born, the doctors thought her hips felt loose but ultimately said she was fine. She ate normal, slept pretty normal and seemed an all around normal happy baby.
Now that she is 18 months, the days with baby seem harder than they did when she was a newborn. Because she cant sit yet, she hates any position she is in other than being held. We can put her down for a few minutes, but she will cry like she is in pain and just wants to be held again. She does good in her highchair for 20 minutes, which is a nice break, but that is about it. She is still eating baby food, with some hard food like bananas and graham crackers, but usually it is difficult for her to chew and get larger pieces down. Her daycare, which we were so excited about as it is a highly regarded daycare in the area, after 2 months, had "advised we find other care for her" as they were not able to support her needs. This was very difficult to hear and cope with, but we have since found a wonderful in home daycare which she loves. Those 8 hours a day, my husband and I can work our fulltime jobs while she is at daycare.
We have PT 3 days a week, OT 1 day/week and Development 1 day a week. She spend 30 minutes to an hour a night in her stander, which is a device that literally stands her up. This helps wtih strength and internal body parts be in an up right position. I try to be positive, but some days it just feels like we are in a hamster wheel and nothing will ever progress.
Beckett is otherwise a happy, beautiful, playful little girl. I know she wants to do more and it is frustrating for her not to be able to.
Wondering if other parents have positive stories to share about a low muscle tone babe making progress or other suggestions on how to help our little girl.
I am so sorry you are going through this. I hope you are able to find some answers soon. I can only imagine how frustrating it is. much love and hugs, Nicki
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