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Marian is Singing

December 11, 2017

 

Marian is singing! This is huge. When Marian was a baby she would babble, smile and communicate, but if asked to do something "on demand" you'd get a blank stare - like it couldn't connect. Our very close family friend and speech therapist of thirty years floated the idea that Marian may have apraxia to me. I wasn't very receptive. Well, here we are two years later and Marian's speech therapist thinks she may have apraxia. 

 

This internally went over like a lead balloon. It scared me that her NPC may be more advanced then realized, and it also made me sad to think of all she is facing ahead of her -  another challenge and obstacle appearing even if best case scenario results. But, it does make sense. It's too early to definitively diagnose but apraxia  - an oral-motor planning issue in the brain (cause unknown) - fits. Marian is learning language with lots of repetition - she's not generalizing on her own. She sometimes blurt out a three word sentence but can't and doesn't repeat it. Words that aren't being reinforced become difficult. Until recently she never imitated facial expressions or sounds. So we're changing things up at home and reading the same books over and over again. And over and over, and over and over. 

 

And today was a good day. This morning Marian said "I want more" and a clear "apple" - which she's been practicing for weeks - and she sang. "Uuuuuup and doooooown" as she raised and lowered her arms in a loose rendition of Wheels on the Bus. Singing is one of the missing boxes that keeps her expressive language before the one year old level. It's strange to describe it as beautiful, but it was beautiful. She's definitely moving forward but it's a big effort. She's working so hard and we are really proud of her (and Emily too who at 2 years old told me "the Prince leaned over to give Sleeping Beauty a big smooch").

 

Some kids with apraxia eventually develop normal speech after years of intensive speech therapy and some don't. But I realize if Marian's biggest issue when she's in high school or adulthood is unclear speech then that's a pretty good problem to have - and we will figure it out. But when I hear babies at a year or two have crystal clear and advanced speech it is kind of jarring and I look at them suspiciously like they may be Boss Baby, Alec Baldwin in disguise.

 

Physically and cognitively Marian is doing awesome. She is getting so much stronger each day. She is still practicing her "fast walking" and getting closer to running and jumping. We are pretty sure she can push up from the ground into a stand if she thinks no one is looking. Today she also did a deep squat and held it with a smile which I haven't seen before. She also is seeming to understand almost everything that is said to her, today walking into the kitchen to get her Minnie Mouse ears on request to prep for our first Disneyland trip this week.

 

On Thursday we are going to Disneyland with one of the amazing NPC families who have become good friends. I've also been told there is a Disneyland app now which I think is going to change my life as I have crowd anxieties and can navigate around as swiftly as possible. Emily is SO excited. 

 

We also were so excited to be on The Doctors TV show  (click to watch) this week sharing Marian's story and were blown away at the surprises they had in store from Jaanuu and Toys R Us. Jaanuu is also continuing to raise money for Hope for Marian/NPC research through their website now - and have a goal to donate up to $20,000 more! So so amazing and I could not be kicking myself more that I couldn't express my thanks on tv and instead just cried. 

 

Marian is loving watching Sesame Street these days and gets up to dance to the songs. She also loves headbands, and is especially elated that her sweet friend has been bringing her a headband each week to borrow during Emily's swimming lesson. Music is a huge favorite as are purses and baby dolls. She also loves coloring, painting, looking at books, toy animals, and play doh (and doesn't even try to eat it anymore). But of course, her favorite person ever is still her big sister Emily - who is ready to teach it all to her. 

 

 Shoots and Giggles, thank you. 

 

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