Merry Christmas

 

Childhood Apraxia of Speech

When Bryleigh was 18 mos, I noticed she wasn’t saying any words and would make sounds instead of words.  For instance, Love You was hmm hmm.  Cadence was fafa and so on.   I mentioned it at her appt and the dr told me not to worry – some kids just develop later.  I’m aware of that..Cadence was in speech therapy from 18 mos to 2 1/2 yrs old.  This was different. 

Dennis’ nephews all have CAS.  The oldest is 17 and still has problems being understood.  I worry about the girls b/c I don’t want them to have to struggle like he does.

It was hard for us too.  At home she would get so mad that we didn’t understand what she was saying that she would start throwing tantrums or cry herself to sleep from frustration.  It broke our hearts into a million pieces.  Something so simple that she wanted us to know and she couldn’t even share it.

Her face tells us so many things, but her little voice doesn’t.  I was praying for the moment when she would tell me she loved me.  [Im]Patiently waiting for her to be able to play with other kids w/o the other kids asking what she was saying or looking at her like she was speaking another language.  I want so desperately for her to have a friends that understand her.

At Bry’s 2 yr appt, I again voiced my concern.  This time she agreed and wrote us up for a speech eval.  Our insurance is A-MAZ-ING, however, it doesn’t cover speech therapy.  It will cover speech evaluations. But, those sneaky bastards, only approved a speech therapist in Brighton, MI..more than an hour from our house.  Considering the price of speech evals, it was worth it to go up there for her eval.

The evaluation was 2 hrs long…after, I met w/the therapists and was told that she was apraxic.  Even though I was fully expecting them to tell me this, I was still saddened by the diagnosis.  To top it off, our insurance wouldn’t cover therapy and I didn’t want her to not be able to speak properly b/c we couldn’t afford to pay for therapy.

I contacted Help Me Grow, they did another eval and we were set up with family resource funds to help pay for Bry’s therapy.  We could do private therapy OR we could take her to one of the universities and use their therapy.  It’s MUCH less expensive b/c it’s being done by grad students.  Since we only get $1,000/year, it will last longer at the university.  This is the route we’ve chosen. 

Shortly after her diagnosis, I was told about a support group.  We participated in their 2nd annual walk and I started attending the meetings.  They had a grant offering IPads for the kiddos.  I applied for Bryleigh and guess what – she got it!!!

She’s only had it a week or so – but it’s amazing.  One app, in particular, is doing a lot for her.  It shows the mouth close up and how it moves.  She loves playing w/the ipad.  She plays games as well as using the speech apps. 

Listening to the improvement in her speech just amazes me!  This girl is a trooper!!

As we continue on our Apraxia journey, I’m thankful for my supportive family and friends, for the wonderful support group I belong to…but especially thankful for my little girl – Apraxia may have crippled her voice for now – but her personality speaks volumes!

Thanks to NWO Apraxia Support for Bryleigh’s IPad grant application!

Playing w/her IPad is exhausting

Silence for Sandy Hook

Twas' 11 days before Christmas, around 9:38 when 20 beautiful children stormed through heaven's gate. Their smiles were contagious, their laughter filled the air. They could hardly believe all the beauty they saw there. They were filled with such joy; they didn't know what to say. They remembered nothing of what had happened earlier that day. “where are we?" asked a little girl, as quiet as a mous...e. “This is heaven" declared a small boy. "We’re spending Christmas at God's house”. When what to their wondering eyes did appear, but Jesus, their savior, the children gathered near. He looked at them and smiled, and they smiled just the same. Then He opened His arms and He called them by name. And in that moment was joy, that only heaven can bring those children all flew into the arms of their King and as they lingered in the warmth of His embrace, one small girl turned and looked at Jesus' face. And as if He could read all the questions she had He gently whispered to her, "I'll take care of mom and dad. “then He looked down on earth, the world far below He saw all of the hurt, the sorrow, and woe, then He closed His eyes and He outstretched His hand, “Let My power and presence re-enter this land! “May this country be delivered from the hands of fools” “I’m taking back my nation. I'm taking back my schools! “Then He and the children stood up without a sound. “Come now my children let me show you around. “Excitement filled the space, some skipped and some ran. All displaying enthusiasm that only a small child can. And I heard Him proclaim as He walked out of sight, “in the midst of this darkness,” I AM STILL THE LIGHT."

In memory of:

Olivia Engel, 6

Emilie Parker, 6

Charlotte Bacon, 6

Ana Marquez-Greene, 6

Dylan Hockley, 6

Madeleine Hsu, 6

Catherine Hubbard, 6

Jesse Lewis, 6

James Mattioli, 6

Jack Pinto, 6

Noah Pozner, 6

Caroline Previdi, 6

Jessica Rekos, 6

Avielle Richman, 6

Benjamin Wheeler, 6

Allison Wyatt, 6

Daniel Barden, 7

Josephine Gay, 7

Chase Kowalski, 7

Grace McDonnell, 7

Anne Marie Murphy, 25

Victoria Soto, 27

Rachel Davino, 29

Lauren Rousseau, 30

Dawn Lafferty Hochsprung, 47

Anne Marie Murphy, 52

Mary Sherlach, 56
___________________________________

I haven't blogged much this year, this tragedy broke my heart.  Tomorrow there will be a day of silence in the blog world which I wanted to recognize.

Prayers to the families of these beautiful people.  <3>

 

Happy St. Nick’s Day

For some reason, this day wasn’t celebrated as a child.  When I found out about it, I felt robbed – hehe.  Really, though, I thought it sounded like a fun celebration for the kids.  And since Cadence was goes to Catholic school, they celebrate it!  They leave their shoes in the hall and when they come back, there is a candy cane in it!  Pretty cool, right?
The girls were quite excited this morning when they came out before school and found the treats from St. Nick…