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!