At First Sight

Gianna's eye surgery went very smoothly -better than we could have even hoped!  She woke up in the morning in the happiest mood.  I was worried that she would be really upset and fussy since she couldn't have her morning bottle or any breakfast, but it didn't seem to phase her.  She was all smiles for everyone at the hospital, even as they took her back to the OR.  We were blessed to have a friend as Gianna's nurse, and the same wonderful anesthesiologist who has taken care of her during both previous surgeries.  The procedure took about an hour.  They cut the inner eye muscles and reattached them with stitches at the proper position. It seems so weird to me to have stitches in her eyes, but they are the kind that just dissolve.  Her ophthalmologist said it will take a couple of weeks for the redness in her eyes to clear, and may take a week or so before we can really tell how effective the surgery was.  She was tired and a little grumpy and hungry afterwards, but was smiling again and clapping her hands less than an hour after surgery!  Even the nurses couldn't believe how well she was acting - they said it didn't seem like she had just been through surgery.  Thanks for all of the prayers and good wishes - it was truly a miraculous day!



Before surgery playing with Daddy

 

Taking her first bottle after surgery



Ready to go home!

Surgery Day Tomorrow

Gianna has a big day in store tomorrow - we go in early in the morning to have her strabismus surgery.  We're praying for no complications, and hopefully by tomorrow afternoon she'll be recovering and on the path to better vision!

Here's Gianna at her pre-operative appointments - happy as can be! Her opthalmologist said it remains to be seen whether or not she'll still need her glasses after the surgery.  I have to admit I'll be a little sorry to see these pink frames go if she no longer needs them - they seem like part of her personality now! 

Having Her Cake....And Eating it Too!

I'll post lots more birthday party pictures later when I can get organized, but here's a preview....  Gianna more than reached her goal of being able to eat a little birthday cake!  She enjoyed every bite!!

ONE!

Happy First Birthday Gianna!!!!  We can't wait to celebrate with you this weekend, sweet girl! 

Walking to Conquer Chiari

Before G was born, we knew she had the encephalocele and hydrocephalus.  The other significant diagnosis that we weren't aware of until after her birth was a Chiari Malformation.  I remember in the NICU the neonatologist giving us this news when she was one day old after having an MRI, and then later a nurse asking me what type she had.  I'm pretty sure I gave her a blank stare while thinking, "There are different kinds?".  As we soon learned, there are four different types.  Gianna has type III - here's the description from the National Institute of Health:

"Type III is the most serious form of CM. The cerebellum and brain stem protrude, or herniate, through the foramen magnum and into the spinal cord. Part of the brain’s fourth ventricle, a cavity that connects with the upper parts of the brain and circulates CSF, may also protrude through the hole and into the spinal cord. In rare instances, the herniated cerebellar tissue can enter an occipital encephalocele, a pouch-like structure that protrudes out of the back of the head or the neck and contains brain matter. The covering of the brain or spinal cord can also protrude through an abnormal opening in the back or skull. Type III causes severe neurological defects."

To be perfectly honest, I remember feeling sick and overwhelmed the first time I read that after G's birth.  Those aren't words anyone ever wants to read about their child.  I'm not sure I even processed any of the middle sentences - the first and last lines got me.  But here we are almost a year later, ready to celebrate Gianna's birthday, and we're so amazed and thankful on a daily basis at how well our happy sweet girl is doing!

Here's a basic illustration from the Conquer Chiari website.  Their motto is "From Knowledge, Strength. Through Research, Hope" - I like that.   So, basically the cerebellum protrudes out of the skull, crowding the spinal cord, and causing a constellation of symptoms including headaches, dizziness, fatigue, muscle weakness, difficulty swallowing, pain, anxiety, ....too many to list. 

So fast-forward to this weekend and our first "Conquer Chiari" walk as a family.  The walk is held all over the country on the same day to raise both awareness of and funding for the cure of Chiari Malformations.  Gianna's baptism picture is included on the Conquer Pediatric Chiari website. 

On the Riverwalk in Louisville for the Conquer Chiari event.  A beautiful day to honor our beautiful little girl!




Matt and I did all the walking, so I'm not sure why the boys wound up with the treats!

 

 

We're planning to make the walk an annual family event.  I'm already planning our "Team GiGi" t-shirts for next year!

In Pursuit of Cake

Having a child with disabilities has taught me many things - not the least of which is how much I previously took for granted.  Exhibit A: The ability to chew and swallow foods.  We first noticed that Gianna had difficulty swallowing when feeding her the small melt-away baby puffs.  Her reaction was a scary gagging - unable to either swallow the puff or get her breath.  She's able to drink liquids and eat smooth baby foods, but foods of any other substance pose a challenge for her.  We figured out how to help her eat the puffs (one at a time - make sure it melts on her tounge), but quickly realized we needed some specialized help to make sure she could learn to eat other foods safely.  And thankfully, that help came in the form of an amazing feeding specialist with many tips and tricks up her sleeve!

This little gadget (only about 2 inches long) is called a Chewy Tube.  Made of soft rubber, it encourages kids to teeth on it, building jaw strength.

Gianna at her speech/swallowing therapy with another great invention - this special cup is flexible, easy to hold on to, and cut out on one side so that kids don't have to tilt their head back to drink - they can just tilt the cup without it hitting their face.  Notice the big red towel in front....this one gets messy!

We're working with her every day - every meal - to implement the therapist's suggestions.  Sometimes with success, and sometimes not so much.  Our short term goal is to have her be able to eat a little cake on her birthday - just a few more days to go!

Decision Time

Here's Gianna last week before her ophthalmologist appointment. 
(I think she's pretty pleased with her new big bow!)

We've been doing our homework - talking to everyone we felt could give us more information about the eye surgery decision we've been wavering on.  We've talked to anesthesiologists, a visually impaired preschool services representative, and other parents who have had children who have gone through the surgery.  Even with months of the glasses and patching, G's eyes are still quite crossed, and her ophthalmologist feels surgery is needed both to help straighten them and help with her visual processing.  We've learned how impaired vision affects so many areas of life - for example, since Gianna has trouble seeing and focusing with both eyes, she may not see things at a distance that would encourage her to crawl and get them.  What ultimately helped with our decision was talking with a friend who has a son with Cerebral Palsy.  He had the same surgery successfully several years ago.  She explained it like this - "Our kids have many struggles in life - Gianna has to struggle to balance, struggle to move, struggle to swallow, struggle to see.  This surgery is something that can help take away one of her struggles."  Well said.....decision made.....she's scheduled to have the eye surgery the week after her first birthday.