"Guest" Post - Rob and Alex Governor Morehead Preschool Playdate

Ok, so this is my first ever attempt at blogging and I’m kind of wishing Erica hadn’t set the bar so high.  Alex and I visited the Governor Morehead Preschool for the Friday with Families “Music with Susan Erickson” special event.  Even though it was a cold and rainy November day we were greeted with warm smiles by the teachers as they directed us into the mat room.  Alex was fast asleep and I had to wake him up, which must have been confusing for him since I’m normally asking him to fall asleep.  We started with “If you’re happy and you know it” and Alex was all smiles as I helped him clap his hands and stomp his feet.   The next song used bells and while cradling Alex’s head he reached for the bells and let me know he didn’t need me to cradle him (he is incredibly strong IMHO).  So I let him sit up on his own in my lap as they came to collect the bells and hand out our scarves for the next song.  As one of the only Dads in the room of course they decided to give me the hot pink scarf J.  Alex LOVED the scarf.  Even though he was sitting in my lap I didn’t need to see his eyes to know he was tracking the brightly colored scarf as his whole head was moving back and forth as I waved it in front of him.  We ended on “You are my sunshine”, a song Alex is very familiar with thanks to big sister Julia and despite my complete inability to carry a note once again Alex was all smiles.  

During the musical play date I got to talk to other parents who shared their experiences (my favorite was the mom who told me how the doctors had told her that her son had no vision as her fifteen month old walked around obstacles and found and picked up the ball he wanted to play with).  

While I came hoping to find support from talking with other parents experiencing a similar situation, the greatest thing I took away from this day was the smiles and pure joy I saw from the kids as they danced, played and laughed.   They were truly inspirational.   

    

Alex and I ended the day by taking a tour of the Governor Morehead Preschool.  It is honestly an amazing facility with a great emphasis on improving current vision and enhancing other senses.  Alex really liked the dark room where they use backlights and light boards.  They had a staggering amount of resources and activities.  The facilities were great, but even more impressive was the staff and how apparent it was how much they care for the kids and how hard they work.

I want to end my first post by thanking Erica for putting together this blog and by thanking everyone else for their thoughts and prayer, it has been greatly appreciated.

Visit to Duke

Follow Up Visit at Duke
Yesterday Alex had an appointment at Duke Eye Center.  His pressures look good - no Glaucoma.  And no cataracts.  Our next appointment is in three months, which is February.  We plan on discussing the renal ultrasounds with our pediatrician.  Here is a picture of little Alex while we were waiting for his appointment.  He is so much bigger than at the last visit.  We had to remove the newborn insert from the car seat since he is well over 11 pounds. 

Ped Op Visit at Duke 11/15/2011

Alex at 3 Months
At his two month well baby visit Alex was 11 pounds 14 ounces and 23.5 inches long and that was a few weeks ago.  Alex is tracking objects with his eyes which is great.  I definitely think he sees our faces.  His favorite toy is a red, white, and black bug with crinkle wings.  We attach this to the mobile on his swing and you can see his eyes following it.  We have a light up toy and some others to work on stimulating his vision.  In terms of other milestones for an almost three month old, he is right on track.  Smiling, laughing, cooing, gripping objects - everything listed in the baby books.  And he is so strong!  Right after he was born he held his head up.  Now he is trying to roll over.  We have to fasten the safety belt on his swing because he throws his right arm towards his left side and twists his body.  He does this on the changing mat, also.  We have noticed a lot of sensitivity with indoor and outdoor light which is expected since there is little iris to regulate light.  He does have the tiniest rings of blue around his pupils.  Blue eyes, just like his momma.  We are making an effort to position him with his back to windows and to limit exposure to the sun until his glasses and hat fit.  We keep trying them on but they are still a little too big. 

Cutest little mouse 10/30/2011

 

 

 

 

 

 

 

 

Baptism 11/5/2011

Aniridia Friends
I think the most comforting thing has been the support from other families and people with Aniridia.  If you or your family member has Aniridia, the United Families of Aniridia group on Facebook is wonderful.  The moderators are very supportive and answer questions.  I have been able to connect with other parents and it has been so helpful.  It's nice to get their recommendations for sunglasses and things like that, but it's most comforting to see older kids with Anirida and how they are thriving.  Here are links to a couple of blogs you might be interested in checking out:

Following gorgeous little Avery as she grows
Tiffany and her journey to become a nurse

Genetic Testing Results, etc.

Genetic Testing
This is quite an overdue blog post.  I updated everyone on Facebook but not on the blog - so sorry.  The end of October we received the genetic testing results and Alex has a mutation in the PAX6 gene, but no deletions or duplications noted in the PAX6, DCDC1, ELP4 or WT1 genes.  The mutation in the PAX6 gene only means he has isolated Aniridia and not WAGR.  WAGR would be deletions/mutations in PAX6 and WT1.  There is some debate whether or not to continue the renal ultrasounds.  This is something we are still thinking through.  Here is the link to a website outlining the genetic testing.

Governor Morehead Preschool
This past week Alex was evaluated for the Governor Morehead Preschool.  We are really exited to work with the teachers at the preschool for vision training.  I think the best thing is that they visit you in your home or child care facility to find the best ways to help develop the child's eyesight. 

Duke Eye Center
We have a follow up appointment with the Duke Eye Center today to monitor for glaucoma and cataracts.  Here's a picture of Alex after his first Ped Op visit.  I will make sure to take a picture of him at this visit - he is so much bigger now!