Why Is She Still In PT?
9 months! We are 9 months into physical therapy for our sweet girl and we are incredibly grateful for the angel God brought to us in our dear PT, Cathleen, or "Ca Ca" as Charlotte calls her. "Ca Ca" truly lights up Charlotte's day. All I have to say is "Cathleen is coming to play with you today" and you'll find our girl pacing the floor and watching out the window for Ca Ca's arrival and then squealing and giggling with delight when she shows up in the driveway.
Why did she need PT to walk? Charlotte has a condition called "Benign Hypotonia"- basically over all low muscle tone with no underlying issues. In case you're wondering, benign has nothing to do with cancer. In this case it means not related to anything. We had blood panels run on her in January to rule out Muscular Dystrophy, Thyroid issues etc. (That was a very scary month of waiting for us). I cried tears of relief when they told me just Hypotonia, to continue PT and she could work past it.
In these last several months, Charlotte has learned to walk and run without falling every few steps! We are so pleased with her progress and truly grateful that she continues to move forward. However, we are not done! She still has work to be done and that is why we are still int PT. She is learning to ascend and descend stairs on her own and we are hard at work on controlled balance and motor planning.
- Controlled balance - standing on one foot for several seconds. Engaging her core and muscles to keep from falling on an unstable surface - like a trampoline, gym mat, medicine ball etc. (ballet is in her future to continue this skill in her once we are past PT)
- Motor planning - jumping and landing on two feet. Her brain telling her legs and feet to bend, push, plan for the jump in air and land on both feet. We need to get that brain sending messages to the muscles faster and instinctively.
We are hoping to be done with PT by the end of the year, but only time will tell what her rate of progress will be.
Moving Forward - Just when I thought I could see the light at the end of the tunnel for Charlotte, some dots really started to connect for me in other areas of her life and how Hypotonia is more than likely the cause. Last week at Carter's feeding therapy appointment the therapist said several things that made SO MUCH SENSE in regards to Charlotte. So I stopped her in the convo about Carter, gave her a quick sketch of Charlotte's diagnosis and some current issues going on and she agreed that Charlotte should be evaluated. Since then, I have been pouring over blogs, medical journal posts, Facebook support groups and anything I can get my hands on and I now have a whole new perspective on her eating issues and speech delays.
Charlotte has always struggled with solid foods and gagging. I can't tell you how many times she gagged and whoever was in the room worried while I shrugged it off because it's just what she does at every meal. Always gags, never chokes. Moving into her toddler years picky eating came into play in flavors, but she really dislikes eating anything other than soft foods like bread and applesauce. We were very frustrated and felt like we were beating our heads against a brick wall. It wasn't until last week that I finally realized, WE ARE. Hypotonic kids have eating issues. It takes muscles to chew and swallow. If she has low tone all over, she will have struggles with eating because it takes muscles to bite, chew and swallow. *LIGHT BULB* It also would explain why she is so small and struggling to steadily gain weight.
Then it hit me like a ton of bricks. Her speech is also ridiculously behind. Shaun and I have been painfully aware of this for a while. We had her evaluated for speech over the summer and she was "within range." (Side bar rant: I officially HATE ranges! I've been told this every time. Every time we finally pass the "range" and the provider says, Oh...hmmm...something might be off here. GAH!!! People, I've been pointing this out for months!) Ok, rant over. Everyone says, "Don't compare your kids to others. They all grow at different rates!" Yes, this is true to a point, but really at some point though, you have to open your eyes and realize that "Hey, my 2.5 yr old talks as good as everyone else's 18 month old."
Once this realization hit me (like a ton of bricks I might add) my heart absolutely broke. I've been pushing Charlotte to "USE YOUR WORDS!"EAT YOUR DINNER" and she can't. Part of it IS that she is 2 yrs. old and part of it is that she physically can't and my heart broke. It takes muscles to form words and get them out. Ugh! Why didn't I figure this out sooner? I've cried so many tears for her. Now instead of feeling frustration because she babbles and won't use words, I want to cry and hold her close and tell her I promise we'll work hard to get you all the help you need so that you CAN use words to tell me what you're so desperately trying to say. Blah. I'm in tears just typing it. I want to know what she wants to say. I tell her all the time, "Baby girl, one day, I'll understand you and we are going to have so much to talk about."
Here we go. Another chapter in our family's lives. I'm meeting with Charlotte's Pediatrician on Monday and pushing for evaluations for OT and Feeding and we will be getting a second opinion on speech.
So, yes. We are still in PT and more than likely we'll be adding several more therapies for C1(Charlotte), Feeding therapy for C2 (Carter - Shaun came up with those) and on top of that, he has his first speech therapy evaluation at 12 months. I'm overwhelmed yet again. Struggling emotionally, but I keep reminding myself, that God has been so faithful to us at every turn with both of my babies, that he absolutely won't leave us now. Praying for strength and endurance as I start a new season and new chapter of dragging my babies all over Atlanta to see the Drs they need to grow past their challenges. My babies are amazing. They light up my every day and we will do everything it takes for both of them to thrive in this world.
Why did she need PT to walk? Charlotte has a condition called "Benign Hypotonia"- basically over all low muscle tone with no underlying issues. In case you're wondering, benign has nothing to do with cancer. In this case it means not related to anything. We had blood panels run on her in January to rule out Muscular Dystrophy, Thyroid issues etc. (That was a very scary month of waiting for us). I cried tears of relief when they told me just Hypotonia, to continue PT and she could work past it.
In these last several months, Charlotte has learned to walk and run without falling every few steps! We are so pleased with her progress and truly grateful that she continues to move forward. However, we are not done! She still has work to be done and that is why we are still int PT. She is learning to ascend and descend stairs on her own and we are hard at work on controlled balance and motor planning.
- Controlled balance - standing on one foot for several seconds. Engaging her core and muscles to keep from falling on an unstable surface - like a trampoline, gym mat, medicine ball etc. (ballet is in her future to continue this skill in her once we are past PT)
- Motor planning - jumping and landing on two feet. Her brain telling her legs and feet to bend, push, plan for the jump in air and land on both feet. We need to get that brain sending messages to the muscles faster and instinctively.
We are hoping to be done with PT by the end of the year, but only time will tell what her rate of progress will be.
Moving Forward - Just when I thought I could see the light at the end of the tunnel for Charlotte, some dots really started to connect for me in other areas of her life and how Hypotonia is more than likely the cause. Last week at Carter's feeding therapy appointment the therapist said several things that made SO MUCH SENSE in regards to Charlotte. So I stopped her in the convo about Carter, gave her a quick sketch of Charlotte's diagnosis and some current issues going on and she agreed that Charlotte should be evaluated. Since then, I have been pouring over blogs, medical journal posts, Facebook support groups and anything I can get my hands on and I now have a whole new perspective on her eating issues and speech delays.
Charlotte has always struggled with solid foods and gagging. I can't tell you how many times she gagged and whoever was in the room worried while I shrugged it off because it's just what she does at every meal. Always gags, never chokes. Moving into her toddler years picky eating came into play in flavors, but she really dislikes eating anything other than soft foods like bread and applesauce. We were very frustrated and felt like we were beating our heads against a brick wall. It wasn't until last week that I finally realized, WE ARE. Hypotonic kids have eating issues. It takes muscles to chew and swallow. If she has low tone all over, she will have struggles with eating because it takes muscles to bite, chew and swallow. *LIGHT BULB* It also would explain why she is so small and struggling to steadily gain weight.
Then it hit me like a ton of bricks. Her speech is also ridiculously behind. Shaun and I have been painfully aware of this for a while. We had her evaluated for speech over the summer and she was "within range." (Side bar rant: I officially HATE ranges! I've been told this every time. Every time we finally pass the "range" and the provider says, Oh...hmmm...something might be off here. GAH!!! People, I've been pointing this out for months!) Ok, rant over. Everyone says, "Don't compare your kids to others. They all grow at different rates!" Yes, this is true to a point, but really at some point though, you have to open your eyes and realize that "Hey, my 2.5 yr old talks as good as everyone else's 18 month old."
Once this realization hit me (like a ton of bricks I might add) my heart absolutely broke. I've been pushing Charlotte to "USE YOUR WORDS!"EAT YOUR DINNER" and she can't. Part of it IS that she is 2 yrs. old and part of it is that she physically can't and my heart broke. It takes muscles to form words and get them out. Ugh! Why didn't I figure this out sooner? I've cried so many tears for her. Now instead of feeling frustration because she babbles and won't use words, I want to cry and hold her close and tell her I promise we'll work hard to get you all the help you need so that you CAN use words to tell me what you're so desperately trying to say. Blah. I'm in tears just typing it. I want to know what she wants to say. I tell her all the time, "Baby girl, one day, I'll understand you and we are going to have so much to talk about."
Here we go. Another chapter in our family's lives. I'm meeting with Charlotte's Pediatrician on Monday and pushing for evaluations for OT and Feeding and we will be getting a second opinion on speech.
So, yes. We are still in PT and more than likely we'll be adding several more therapies for C1(Charlotte), Feeding therapy for C2 (Carter - Shaun came up with those) and on top of that, he has his first speech therapy evaluation at 12 months. I'm overwhelmed yet again. Struggling emotionally, but I keep reminding myself, that God has been so faithful to us at every turn with both of my babies, that he absolutely won't leave us now. Praying for strength and endurance as I start a new season and new chapter of dragging my babies all over Atlanta to see the Drs they need to grow past their challenges. My babies are amazing. They light up my every day and we will do everything it takes for both of them to thrive in this world.
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