Hi lovelies! Hope you guys are having a wonderful week! For us Catholics, today is Good Friday. And for us Ecuadorians, today is the day I made a yummy Easter soup called Fanesca. It involves different grains and fish and is super tasty! It is one of the highlights of the year because it’s such a great soup and I love soup! But I’ll write a post on that Ecuadorian tradition real soon!
Today, I want to elaborate more on Evangeline’s health, something I mentioned in my previous post The Importance Of Having Your Child(ren) Re-Measured During A Well Visit!, and in my newsletters.
Let’s start at the beginning though.
When Evangeline was four months old, we went in for her four-month well visit. Her regular doctor wasn’t available for that appointment, so I made one with another who was also the doctor that saw her at the hospital when she was born. This doctor is super nice and as it happens, is also a sports doctor. She was checking Evangeline and she told me, “She seems a bit floppy.” This is when the “floppy” diagnosis first began. I had no idea what she was talking about so I asked her to explain. She tried to tell me as best she could, using the words, “soft tone”.
Okay. So her muscles are weak?
No. She just has soft or low tone. Which means that her muscles are very lax and she isn’t offering much resistance when pushed or manipulated. They aren’t weak, they’re just soft.
Her doctor recommended she see a neurologist, which of course freaked me out internally. I didn’t let the doctor see me cry, but you better believe I cried when I got to my car. Was there something wrong with my daughter? Is it my fault? Can I make this right? What do I do?
Before I left the room, I told her doctor that I hadn’t been keeping up with tummy time. In fact, I was barely doing it with her. We had just come back from our trip to Ecuador and I was still trying to get settled in. She told me that had no impact on her tone.
Okay. I’m going to be completely honest. I still didn’t understand and blamed myself.
Before the neurology consult rolled around, I started doing tummy time nonstop. I’m talking every day once or twice a day. I saw a difference.
She was able to hold her head up better.
It still wasn’t steady on her shoulders, but it was up. At her consult, the doctor checked her and said he didn’t see any need for further testing. Yes! I remember thinking. He said she was fine. However, if I wanted to, I could bring her back for a follow-up visit./ I said no. After all, I saw a difference in her since I started doing tummy time. I didn’t want to believe there was anything wrong with her.
As you recall, at her 9-month follow-up we learned that Evangeline had barely gained any weight. And we thought she hadn’t grown either. This was, of course, an error in measurement, but her weight really hadn’t increased. With supplementing formula, she started gaining weight and has now gained another pound and grown another 3/4 inches. So she is now 27′ inches in height and 17lbs 2ozs in weight. At her last weight check visit on March 24th, her pediatrician was thrilled with her progress, but, but, but she still wanted to get a neurology consult and she wanted her to start physical therapy. My world shattered to a million pieces, but I understood. Let’s get to the root of what’s happening here.
Hubby Henry was waiting for me in the car with little Henry and of course, tears came. I just wanted her to be healthy and well and not to suffer through any more tests or needle pricks.
My daughter has come a long way. I know it sounds cliched and typical because all babies evolve. But I’m just so proud of her. I’ve seen my son suffer through tummy time and reach all of his milestones with ease. But with Evangeline, I can see how much she really tries to lift herself and reach milestones. And sometimes she gets so frustrated and it breaks my heart, but I know that one day we’ll reach all of her milestones and she’ll be so happy that she can crawl and walk and then run! When she was little, it took forever for her to get her head steady. It might’ve been around 6 months.
At 7 months she was sitting upright although sometimes she’d lean to one side.
Once we put her in big brother’s Thomas the Train chair to eat we noticed a difference. She would lean to the side at first. Then a few weeks later she started sitting upright.
Her First Physical Therapy Session
So before Evangeline’s weight check in March, we decided to get her either a walker that you sit in or a jumper.
At first we bought the walker. She must’ve used it a day or two before we packed it back up and returned it for a jumper. Her doctor had recommended a jumper and not a walker. We really liked the walker, but we remembered the jumper my brother had let me borrow for baby Henry and we agreed that yes, the jumper was better. And she loves it!
When the rehabilitation place finally called me, we set up the initial consult for a Tuesday. I was a bit nervous, but excited because I knew they would help Evangeline reach her milestones, which was a priority right now.
The girl that saw Evangeline was super nice. She isn’t her regular therapist though. She was just filling in for her regular therapist. She showed me several positions to try with her and Evangeline did such a great job. She did tummy time with no problem and we worked on a Pilates ball and other toys they had there. This was just an initial consult though. They just wanted to see how her muscles were. And they agreed that she does have low muscle tone.
Since then, she’s had one more session, this time with her regular therapist. This time we tried other positions and her therapist had me do the positions so that I can remember and do them with her at home. Some of these positions were:
Having Evangeline avoid a W-position when she’s sitting down. Instead, if she does a W, I should move her legs so that she’s sitting with her legs to the side, as in the photo on the right.
This position is very good for her, especially if she lifts herself up a bit. This will get her in position for pulling herself to standing.
Now that I’m helping her position her legs correctly, she can do it on her own as well!
So, right now, since Evangeline will be 11 months in a few days, our top priority is to get her to sit up by herself and crawling. Another position I learned was putting her in tummy time position, but then lifting her bum up and putting her knees together so that she extends her arms and gets in crawling position.
I also learned a position where I lay her over my outstretched leg; her legs are in the air and her arms extended. This will strengthen her arms. The picture on the right is an example of this.
Her therapist also told me not to sit her up, I should let her do it. To do this, she taught me to put her on her side, extend one arm and then keep one of my hands on her opposite hip. She will then use her arm to sit herself up. Right now, Evangeline doesn’t know she can use her arms to sit herself up. We’re teaching her all these new techniques she can use to her disposal.
She’s such a laid-back baby that I took all that for granted. She sleeps through the night, barely fusses unless she’s super hungry or tired. Once I put her down to sleep, she gets there on her own and she stays down til the next day.
What I Learned From Evangeline’s Condition
She was born with it.
It wasn’t anything I did. If her doctor noticed at four months, there was nothing I could do to reverse it. She has low muscle tone and she always will, but it doesn’t mean she can’t lead a normal life. It might be a bit difficult for her to play sports, but she can excel in other things like gymnastics or aquatics. And by the way, this girl is super flexible. I mean, my son is flexible and can do straddles, but my daughter is just beyond flexible. And I love it! And I want to take advantage of it! Her therapist said that after she starts to crawl, we can move to aquatic therapy which is so exciting to me because I’ve always wanted both my kids to join the YMCA so they can swim! I think this would be great exercise for them!
This might also be neurological or a thyroid condition. She has a neurology consult in May after her first birthday so we will see what they say we should do to learn more about her condition.
In the meantime, we’re having fun playing with this little sweetheart and it’s so funny how many people tell me that she’s really stiff and sturdy. When I tell them she’s in therapy they don’t believe it. They think her muscles are really good and that she’s super strong.
Okay, lovelies. I will keep you updated on her status as she continues therapy! And happy birthday to my son, Henry. Today he turned three! I’ll have a post tomorrow on his Chuck E. Cheese party!
My Daughter’s Low Muscle Tone Diagnosis and What We’re Doing to Help Her Reach Her Milestones! is a post that first appeared on the website: Baby Henry Likes on April 14, 2017.
Great entry! Very informative. So glad she is doing better!!
Yes, slow and steady 🙂 She’s a real trooper! Thanks for reading!
What a darling little girl! Good for you for staying patient and persistent with it. You’re doing amazing!!
Amanda Ripsam says
I too am a mom to a child who is 10 years old now she has cerebral palsy and a rare genetic disorder called 22q11.2 deletion syndrome and I blog about our journey I am so glad I found you. I subscribed to your newsletter and I look forward to reading more of your post.
Thank you Amanda! I will definitely continue to blog about her and how she’s doing. Right now we’re still working on her sitting herself up, she can’t pull herself up to sitting yet. And crawling. She will be 1 in one week. But we’re super positive and happy she’s in therapy!
Amanda Ripsam says
Excellent job momma, we did a ton of ot and pt and Doctor visits as well.
Manavi Siddhanti says
Hi Jacqueline! Thanks for sharing your story. Your daughter sounds very strong and seems to be doing very well. Wishing you and your family lots of luck and good vibes!
Thank you Manavi!!! She is def. a fighter!!
Anna Love says
She’s such a cutie! Sorry to hear about her condition, but don’t lose hope and always look on the positive sides. I believe in miracles and anything is possible, I’m sure you do too. Have a great week!
Sorry to hear about your daughters condition, but thanks for sharing such an informative post.
Stay strong momma! Thanks for getting so personal with the world. Praying for your daughter & her condition!! ❤️