Happy Halloween!

Happy Halloween from Princess Callie! ...

Return of Seizures

This update is long overdue but I wanted to make sure to document this turn of events.  In May, we started noticing Callie's right arm twitching periodically.  It just seemed like an involuntary muscle spasm, but after it reoccurred several times over a three week period our fear of seizures quickly returned.  On two occasions...

Back to School!

Callie started her second year of special ed preschool at our home elementary school.  I really like the fact that she and Owen are in the same location and their classrooms are right down the hall from each other.  This year Callie is in an afternoon class five days a week.  A big yellow school bus picks her up and drops her...

AFOs and Walking

Callie continues to wear AFOs to help her walk properly.  We wear them as much as possible and always have them on when we leave the house.  The other day, however, we were at the airport about to board a flight, so I let her go without them for her comfort on the plane.  She happily walked through the airport independently...

Ask and you shall receive!

She asked for it, she got it!  :) ...

Bittersweet Goodbye

Callie started receiving night nursing care when she returned home from the hospital a little over two years ago with a NG feeding tube.  At first it was essential... She had long night feeds through her tube and had to be watched throughout the night for safety.  If the tube came partially out while she was sleeping, formula could...

Apraxia Awareness Day

Today is Apraxia Awareness Day! Apraxia is among the most severe speech and communication problems in children.   Affected children have difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw, and palate that are necessary to produce clear, intelligible speech. ...

Happy Nappy

Callie still takes an afternoon nap.  We wish her a "happy nappy" and often sing Happy Nappy to the tune of Happy Birthday when laying her down.  We have a web cam in her room and have noticed lately she prefers to play during half, sometimes all, of her nap time.  The other day my heart melted as I watched her hug and kiss...

Speak For Yourself

I am happy to finally post an AAC update!  In December I wrote about how we were entering the world of Augmentative and Alternative Communication and had chosen a DynaVox Maestro as Callie's first speech device.  I was very excited to receive the device and get started right away, but it unfortunately ended up being a bust.  I...

IEP Success!

It is IEP season; time to negotiate Callie’s IEP for this fall, the start of her second year of preschool.  If you remember my update from last summer, you will know that the first time we went through this process was a nightmare.  The county assigned Callie to the wrong type of classroom in a school far from our home. ...

Happy Easter!

Happy Easter from Owen & Callie!  ...

Walsh Lab, Boston

Over two years ago I learned about the Christopher A. Walsh Laboratory in Boston.  They research genetic mutations that can alter brain development and lead to malformations like polymicrogyria.  By studying individuals affected with these conditions and identifying the associated genes and their mutations, they learn about the...

Almost Spring!

We are so ready for spring!!  There were a few mild days last week and we loved getting outside for some fresh air.  We look forward to many more warm days soon! ...

Yoga

We keep a notebook in Callie's preschool backpack and her teacher sends short daily notes home to let us know how or what Callie does in class.  The other day part of the note said "We did yoga in gym and Callie worked very hard."  I thought that was so cute that they did yoga at school!  After reading the note, I turned to...

Blendtec and Callie's Blendarized Diet

I recently changed Callie's diet to include blended food.  A blendarized diet is simply regular table foods blended into a fine enough puree to be easily given via a feeding tube.  I started looking into this alternative way of tube feeding after learning about it from a special mom friend.  She exclusively feeds her son blended...

PMG Awareness & Daytona

When a tiny 3 week old baby girl was diagnosed with polymicrogyria in 2011 her mother and grandmother felt discouraged and disappointed when they were able to find very little information and support.   They ended up feeling inspired to do something about this and, along with some other special moms, started a non-profit...

EoE Update

Last Friday Callie had another upper GI endoscopy, her seventh to date.  We know the routine well, but it never seems to get any easier.  Callie knew what was going on as soon as we were called back to the prep area and was not happy to be there.  After getting her changed, reviewing her medical history with the nurse, and...

New Year

I recently started reading another blog by a mom with a little girl with developmental delays.  In a new year post she reflected on her past year saying it was the year of walking and the upcoming year was going to be the year of talking, whether verbally or with the use of an AAC device.  I feel the same way!  2012 was huge...