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.

Gianna: 11 Months Old



GiGi at 11 months old



Three Little Indians in Gatlinburg - Gianna's first vacation

Photos by Zoombug



Angelo's first day of Pre School



D's first day of First Grade

Although the weather still feels like summer, school started last week, heralding the official end of summer and beginning of fall.  As D and Angelo head off to their new classes, Gianna also has new beginnings this month.  She has an upcoming assessment with the visually impared pre-school services, and she is beginning speech therapy for her swallowing.  My goal is for her to be able to have some cake on her birthday.  G began to clap last week, which I absolutely love!  When she claps, she looks right at us and smiles, as if to say, "did you see what I just did!?!"

Decisions: To See or Not to See

Gianna went back to the opthalmologist last week to get an update on whether the glasses and patching are helping her eyes.  The great news is there is improvement in her right eye!  The downside is that the opthalmologist is recommending that she still needs surgery on both eyes before age 2 so that she doesn’t lose vision in the weaker eye, develops her depth perception properly, etc. So we're facing a dilemma.... The issue is that there is some new evidence that 2 or more general anesthesia exposures in children less than 4 years old is linked to possible developmental disabilities, cognitive issues, attention problems, etc.  (See SmartTots initiative for more information.)  Gianna has already had general anesthesia on three different occasions, so we are really hesitant to have her exposed again at an early age if the surgery could be put off until later.  We're getting as much medical advice as possible and praying that we're armed with enough information to make the right decision for her. 

Miracle Baby

Thank you so much Aseel for this beautiful slideshow of Gianna!!  Putting pictures to music is always guaranteed to make me cry, and this was no exception.  These lyrics are so perfect.

Gianna's Little Hero Slideshow

Tell me what did I do right

To deserve such wonder in my life?

When you smile, my heart turns inside out

And your tender love is all I can think about

You're so beautiful, so irresistible

You're my miracle baby

You're so wonderful, it's undeniable

You're my miracle baby

Heaven must have heard my prayers

and delivered me an angel so fair

when you look the clouds have to run and hide

you're the sun and the moon in this heart of mine

You sure do shine

You're so beautiful, so irresistible

You're my miracle baby

You're so wonderful, it's undeniable

You're my miracle baby

When you smile, my heart turns inside out

And I never knew what love was until now

You're so beautiful, and it's incredible

You're my miracle baby

You're so wonderful, so sweet and lovable

Every inch my miracle baby

Oh you're sensational

So sweet and lovable

Yeah, it's down right undeniable baby

You're my miracle baby

Here's the family slide show she put together for us.  The boys love watching this!

Littlest Hero

Gianna was recently fortunate to be chosen to participate in a project called "Inspiration Through Art/Littlest Hero's Project".  This incredible volunteer organization is made up of a network of professional photographers who donate their time and talent to take pictures of children with medical challenges.  Here's the way they describe their mission:

Our mission is to help provide and capture memories for families who are dealing with hectic schedules due to having a child with a serious illness or life altering disability. We are here to offer emotional support through the beauty and expression art has to offer, as a way of healing and coping. We understand that in the midst of being thrown a diagnosis and having to switch from a “normal” life to a life that is totally different, and often scary, things like getting photos taken is sometimes a huge challenge and is one of the last things families are thinking about. But when everything is done, and either the child has reached the end of their battle, or has proven the odds against it, many wish they had more time to stop, and capture the journey that they lived through for so long.  The organization was founded by an amazing young woman named Felicia Reinheart - (when she was 16 years old!) - in order to provide inspiration and hope to others.  Their website features the beautiful pictures and stories of "little heros" around the world. 

I received the notice a few weeks ago that Gianna was selected to be in the program.  We were so excited to have this opportunity.  We were given a list of photographers affiliated with the program in our area - I knew as soon as I saw the Zoombug website, that this was the one for us!  The photographer, Aseel, is so kind and talented.  She volunteered her time to spend a Sunday afternoon at our home - patiently taking photo after photo of Gianna, capturing her smiles, her sweetness, and her curiosity.

So enough words - here's a link to the preview pictures Aseel sent me this week:
Gianna's Preview Pictures

And she even went way "above and beyond" - offering to take family pictures as well.  Here's the family preview pics Aseel sent:  Family Preview Pictures  I love the way she was able to really show the personalities of all the kids!  This time together as a family taking pictures will be one of my very favorite memories of Gianna's first summer.