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 Callie and asked her if she did yoga with her friends in class.  She looked at me as if she were excited that I knew and nodded her head yes.  Then I asked her if she could show me her yoga moves and it looked something like this:

How adorable is it to see our special little 3 year old doing yoga?!  Love this girl!!  :)

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 food and graciously offered to show me how it is done.  I watched and took notes as she prepared large batches of balanced nutritious meals and then froze them in individual servings.  She explained it is easy to feed him nothing but healthy and organic foods because unlike most little ones who would balk at eating such a variety of vegetables and even things like sardines which are high in omega-3 and B vitamins, he does not taste them.  She told me about squirrel syringes (the very best syringes for tube feeding) and loaned me "Complete Tubefeeding" by Eric Aadhaar O'Gorman.  This book is an excellent guide to tube feeding and I highly recommend it to anyone going down this path.  In addition, it goes on to make a case for a blendarized diet explaining it is a more natural way of eating, can offer complete customizable nutrition, feels better to the tubie, and can provide countless health benefits.  After having Callie on Elecare formula for over a year and a half I was ready to give it a try.

In order to start this type of diet, it is best to have a high-powered blender, namely a Vitamix or Blendtec.  Using a high-end blender helps avoid clogging a tube.  I started comparison shopping and while both are no doubt amazing machines (check out the "Will It Blend?" videos on YouTube to see the Blendtec blend items like iPhones to dust), I liked how the Blendtec fit under the cabinets on our countertop (the Vitamix was too tall) and the sides of the Blendtec jar are smooth instead of grooved, and therefore easier to remove the food and clean.  I heard both companies offer discounts for those using the blenders for medical needs and ended up calling Blendtec first.  They were extremely helpful and caring, and a week later we had their Total Blender Classic Wildside on our front doorstep.  I can't say enough good things about this company and the blender is wonderful!

It is our goal to have Callie eat 3 regular meals a day plus snacks.  We offer her food at the table with us at meals, but do not pressure her to eat a certain amount in an effort to keep eating a positive activity.  After she eats what she can by mouth, we follow her meal with two 60ml syringes of blended food plus two syringes of water.  Her typical morning blend consists of oatmeal, whole milk, 2 fruits, walnuts, applesauce, Chia seeds, and a little extra virgin olive oil for added fat & calories.  An example of her lunch & dinner blend includes whole milk, rice, chicken, veggies, fruit, Chia seeds and oil.  While we were working up to a couple of syringes of blended food after each meal, we began cutting back the amount of formula she was getting overnight.  I am counting her calories and trying to gradually add more during the day and slowly cut back at night.

We have noticed a change since beginning this diet!  Callie is really filling out and just seems... solid!  I am thrilled to report she broke 30 pounds last month.  This feels like a huge accomplishment.  I have worked hard to get every ounce on her and it just makes me so happy to see her thriving.  We moved up to a new size of pull-ups and I've been buying her new, bigger clothes.  She also seems to have more energy.  I really feel like this diet has been a very healthy change for her and look forward to continuing to move towards more blended food.  We are getting there and it should not be too much longer until she is done with medical formula at night.  Once she is consuming all of her calories during the day we will then gradually try to start cutting back on the blended food as she is able to eat more orally and she will eventually be done with her tube.  But we are okay with as long as that takes and are just satisfied that she will soon be consuming an all natural diet.  Slowly but surely we are making progress on the food front!

BTW, next week is Feeding Tube Awareness week.  We ♥ our tubie!

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 called PMG Awareness Organization (PMGAwareness.org).  Their mission is to promote awareness, diagnosis, and treatment of polymicrogyria through education, research, advocacy, and support.  Their website consolidates all PMG information into one place and is especially helpful to families receiving the diagnosis and looking for answers.  It is also a great place to learn how to connect with other PMG families.  Callie's blog is listed on their site.  

One member of the board of directors of PMG Awareness has a family friend who has been pursuing one of his passions, race car driving.  He is racing for TruSpeed Motors in the Rolex 24 Hours of Daytona in Florida next week from January 26th-27th.  This wonderful and caring man wanted to do something special to help and as a result offered to put the PMG Awareness logo on his car and have patches made for the race team and pit crew to wear on their race uniforms.  He is also putting the names of PMG kids on the car.  Callie will be one of them!  This is a wonderful opportunity to raise awareness of polymicrogyria since the race is huge and will be televised on the Speed TV network.  If you catch any of it, please join us in cheering on TruSpeed!

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 touching base with the anesthesiologist, we headed back to the procedure room.  I talked to her as we were wheeled back and explained to her that she would wear a mask and then would take a nap and I would be with her when she woke up.  She didn't want to hear any of it.  She was terribly upset and crying.  Once the team was assembled in the room it was time to begin and they placed the mask on her little face while I held her, unsuccessfully trying to comfort her.  She fought it as long as possible until she succumbed to the gas and drifted off to sleep.  As usual, I fought back tears during these traumatic moments, and then reluctantly handed her over and fled the room so that I could let them flow.  But the worst was over and things turned around from that point.

While I waited by her side for her to wake up in the recovery room, the GI doctor came to speak with me and advised the scope looked clear!  Biopsies were taken and the results would take a week to confirm, but his impression was she passed dairy.  Wonderful news!  We did not have long to talk, but I told him of the top food allergies she had now passed everything except nuts and shellfish, which haven't been tried yet.  I asked him if I could just keep these items out of her diet (we can live without them!) so that we do not have to go though another endoscopy for a long time.  He said that would be fine, although we will eventually have to scope when we try to take her off Prevacid.  I was just happy to know we would not have to go through this again for a while.  Also, I remarked how it was amazing that we thought she was allergic to everything and now maybe nothing!  He said most likely she has grown out of the allergies that originally caused her EoE.  Although in the back of my mind I kept thinking about CHOP's opinion that she was possibly mis-diagnosed and that perhaps reflux, not food allergies, has been the problem the whole time.  We will never know.  But the important thing is we now know she is able to safely consume nearly all foods!  And we are so incredibly thankful for this!!

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 for us with Callie learning to walk at just over 2 1/2 years old.  It is my hope that 2013 is going to be the year of talking, and let's add feeding to the mix.  I feel confident we will soon be able to wean Callie from her night tube feeds of formula so that she consumes all of her calories by day, whether orally or orally supplemented with blenderized food via tube.  More on that very soon.  And it would be wonderful is she ends up with some words (or even approximations) this year, but I will be thrilled if we simply begin to have success with an AAC device.  As I previously mentioned, we recently received Callie's DynaVox Maestro.  I spent 3 hours with the rep last week learning how to program and customize it for Callie.  I have been working on it a little each day, but I have to admit it is slow going.  It is quite an undertaking to set up.  Callie has played with it here and there and is familiarizing herself with how it works, but we have not yet really tried to use it for communication.  Hopefully I can wrap up the programming this week.  

At any rate, I feel excited and optimistic about what this year may bring for Callie.  Happy New Year!

DynaVox Maestro

I mentioned a couple of weeks ago that Callie has Childhood Apraxia of Speech (CAS).  We had her evaluated and it was determined that she is a good candidate for an AAC device.  We decided to start with a device from DynaVox called the Maestro instead of the iPad for various reasons.  Right now Callie sees the iPad as a source of entertainment and I think it might be difficult at this age to change it's use to a speech device (I can see her exiting out of the speech app at any chance she gets to switch to Angry Birds or her favorite Baby Signing Time videos!).  Also, you can change the screen sensitivity, the buttons are larger, the speakers are better (louder for places like a restaurant), and it has more customizable options for a little girl's voice.  Her SLPs also have more experience with DynaVox devices, so hopefully it will be easier to incorporate it into her therapies.  These are just some of the reasons that we feel like a DynaVox is the best place for her to start.  If this ends up being a long term solution, I can definitely see switching to the iPad as she matures and gets the hang of using a device for speech.  And since we have one, it will be easy to simply purchase an app when the time seems right.  They are constantly improving and adding new speech apps, so hopefully we will find the perfect one for her when she is ready.

Here is a picture of the Maestro:

It just arrived and we are so excited to get the hang of it and start using it right away!  I have an appointment with the DynaVox rep this coming week for training and am hopeful Callie will quickly catch on and be thrilled with this new way of expressing herself.  I will keep you posted!


 

Merry Christmas!

Owen & Callie wish you a very Merry Christmas!

Childhood Apraxia of Speech (CAS)

Callie has childhood apraxia of speech (CAS), also known as developmental apraxia or verbal apraxia.  Apraxia-kids.org has a good explanation:

What is Childhood Apraxia of Speech?

Childhood Apraxia of Speech is a motor speech disorder. For reasons not yet fully understood, children with apraxia of speech have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech is sometimes called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what name is used, the most important concept is the root word "praxis." Praxis means planned movement. To some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

The act of speech begins with an intention to communicate.  Next, an idea forms, outlining what the speaker wants to say.  The words for the desired message are put in the correct order, using the correct grammar.  Each of the words are comprised of a specific sequence of sounds (also called phonemes)and syllables that must be ordered together.  All of this information is translated from an idea and information about order of sounds into a series of highly coordinated motor movements of the lips, tongue, jaw, and soft palate. 

The brain must tell the muscles of these “articulators” the exact order and timing of movements so that the words in the message are properly articulated. Finally, the muscles must work properly with enough strength and muscle tone to perform the movements needed for speech.

In typically developing speech, children make word attempts and get feedback from others and from their own internal systems regarding how “well” the words they produced matched the ones that they wanted to produce.  Children use this information the next time they attempt the words and essentially are able to “learn from experience.”  Usually once syllables and words are spoken repeatedly, the speech motor act becomes automatic.  Speech motor plans and programs are stored in the brain and can be accessed effortlessly when they are needed.  Children with apraxia of speech have difficulty in this aspect of speech.  It is believed that children with CAS may not be able to form or access speech motor plans and programs or that these plans and programs are faulty for some reason.

The day Callie was first diagnosed with PMG they told us she may never talk.  When we went to see Dr. Dobyns in Seattle he told me she may have oral motor dyspraxia.  I spent time in the beginning pouring over a blog and book all about about Schuyler, a young girl girl with PMG and no words.  It should not come as a surprise that Callie is nonverbal so far, and has now been diagnosed as very apraxic.  And yet hearing it from her speech language pathologist (SLP) last week was very difficult.  We met for an hour to discuss Callie's slower than hoped progress with speech.  We talked about how receptively and cognitively she is so much farther ahead of what she can express.  We decided it was time to come up with an alternative game plan for helping Callie with communication before she gets frustrated.  In the end we opted to enter the AAC world.  AAC (augmentative and alternative communication) is a term that encompasses the communication methods used to supplement or replace speech for those with impairments in the production of spoken language.  DynaVox is a leading provider of speech communication devices.  Callie will be evaluated by a rep from DynaVox within the week.  Her SLP thinks she will be a good candidate for a speech device, whether it be a DynaVox or an iPad with an app like Proloque2go.  If we go this route, this will only be used as a supplemental tool while we continue to aim for vocalization.  

I have to admit I have started to lose a little hope when it comes to Callie speaking now that we are 3 years in with such little progress, but while feeling down after the SLP meeting I reached out to my wonderful local special moms group and three moms were quick to offer encouragement through their own stories.  One has a daughter with severe apraxia who was nonverbal until almost 6 years old.  She also understands everything like Callie.  She was given an AAC device in school and it ended up motivating her to talk. She is 9 years old now and talking in 3-4 word sentences.  The second has a daughter with severe apraxia and only spoke five words at age 3.  She is now 8 and after years of intensive speech therapy she is communicating well.  The third explained her daughter spoke her first word at 3 1/2 and did not even babble before then.  She is now 5 years old and is a chatterbox, communicating in full, accurate sentences.  Such wonderful and amazing stories about these girls!  All three encouraged me to hang in there and not lose hope.  So I will not.

Santa

Notice anyone missing from this picture?  Callie would not go anywhere near Santa this year!  She clung onto me for dear life and cried when I tried to detach her.  She adores Owen and usually goes along with anything he does, but not this time.  Maybe next year.  :-)

Callie at 3

I can't believe our baby girl turned 3 this past month.  Like I did 6 months ago, I thought it would be good to recap where she is in different areas.  

Stats: Callie is now just over 35 inches tall (10%) and weighs 28 pounds (25%).  Her BMI is 50%, which really great.

Gross motor skills: As you know, Callie started walking this past summer!!  I think about this all of the time and have sworn not to take this skill for granted.  We feel so blessed that she is independently mobile.  She can actually get around pretty quickly when she wants to (walks very fast when chasing or being chased by her big brother!), although her gait remains abnormal.  Her legs still hyper-extend when she does not have her AFOs on.  She has pretty much outgrown her current pink pair and we pick up her new purple pair next week.  The new pair will have hinges at the ankle which will allow her more flexibility while still preventing the hyper-extension.  We look forward to getting them and seeing how they work for her.  Dr. Im, Callie's physiatrist, still thinks she has a good chance of eventually developing a typical gait.  Only time will tell.  I also wanted to mention that she is still hitting milestones in this category... In October she started standing independently from the middle of the floor.  Until then she would crawl over and pull up on a piece of furniture.  

Fine motor skills: Her fine motor skills are improving.  She can kind of draw a circle now, albeit a bit sloppy and lopsided.  Her biggest accomplishment has been the block tower I recently posted.  She loves playing with old spice jars (plastic McCormick containers).  She likes screwing and unscrewing the tops, sometimes putting things into the container.  She is also helping when it comes to getting dressed, like pulling up her pants.  Such a big girl.  

Speech skills: This continues to be our our biggest area of weakness.  She still has limited sounds and no words except "mama", "baba", and sometimes "up-a" for up and "ba" for ball.  It still takes a lot of effort to form these words and she will only say them if you prompt her and wait.  It's official... Callie is very apraxic.  I am going to post a separate more detailed entry about our game plan for dealing with this speech disorder.  

Feeding skills: This goes along with speech and remains an area of great delay, but again she is making progress.  She is eating more during the day and we have started cutting back on her formula at night.  She is starting to be able to eat more challenging textures like very small pieces of chicken or steak, but still can not chew harder things like raw fruits or veggies.  We received great news on the EoE front this past month.  After trialing nearly all foods except dairy, nuts and shellfish, she had a clear endoscopy!  This means the advice we received from Hopkins and CHOP was correct... It was beneficial to be more aggressive with food trials and we only have a few more to go.  We are currently trialing dairy and Callie will be scoped again at the beginning of January.  We are really praying she is again clear because she loves homemade macaroni & cheese!  She also tried mozzerella sticks recently and loved them.  It would be so wonderful if she could have dairy!  We haven't noticed any symptoms indicating the food is not agreeing with her, so we are very hopeful.  

Social & Cognitive skills:  These are still her strongest areas.  She continues to be very social and is loving preschool.  And she seems to have a little boyfriend!  Her teacher sends daily notes home in a notebook in her backpack.  Recently a note stated Callie and her little friend kissed in class!  We had a playdate recently with this little 2 year old cutie and sure enough, they hugged and kissed when saying goodbye.  It was too cute.  Cognitively she seems pretty sharp and it's hard to get things by her.  She really does not miss much.

We continue to be encouraged by Callie's progress.  Slowly but surely she is getting there.  And most importantly she continues to be happy.  We love her so much.  When I asked her "Who is Mommy's sweetheart?".  She pointed to herself. :)