Tuesday, November 18, 2014

Clumsy

As the irony of life would have it, Gianna's favorite activity is gymnastics.  GYMNASTICS.....the sport that requires balance, graceful movements and physical strength.  Not Gianna's strong points to say the very least!!  But there's an awesome Little Gym near us where she takes a preschool gymnastics class and it is literally her motivation and the hi-light of every week.  She loves everything about it - the teachers, the music (if a song she likes comes on, she'll stop in the middle of everything and scream "THAT'S MY SONG!!!!" - so excited), playing with the other kids, and (of course) the outfits.  She tries everything with more or less success, gets a ton of extra help from the sweet teachers, and falls....falls a Lot.  But in typical Gianna fashion, she figures out a way to get back up and get back to it over and over again.  

The parents all sit outside the gym and watch through a window.  So a couple of weeks ago, the mother of another girl in the class turns to me and says, "Is your daughter really clumsy?"

What I wanted to say:  "Well, I suppose it may look that way but maybe you didn't know that my daughter was born with an encephalocele and had her first brain surgery at 4 days old which removed part of her occipital lobe which controls balance.  She also has hydrocephalus, agenesis of the corpus callosum, hypotonia, apraxia, syringomyelia and very poor vision.  If you don't know what any of that means, I'd be happy to explain it.  But the short version is that we feel blessed and lucky that she is alive, walking, talking and enjoying this class!!"

What I actually said:  "Umm...yeah I guess so." (weak smile)

And then I immediately felt really bad about it afterwards.  Did I miss an opportunity to educate and advocate?  Shouldn't I have "stood up" for Gianna and explained why her physical performance wasn't due to just being "clumsy"?  Didn't this mom maybe need to gain a little sensitivity to children with disabilities? So why didn't I say anything?!?!?  Well, for one thing, the room with 20-25 parents in it was totally silent - every parent in that room would have heard me (just like they heard her question).  And I was hesitant to possibly embarrass her in front of all those people.  And I didn't really feel like going into the whole thing with this rude mom who I have never met or spoken to before.  And I really just wanted to continue to sit and enjoy watching my daughter having fun without having to explain anything to anyone....

And sometimes that's just life - the struggle between what we really WANT to say and what we feel is acceptable at the time and situation.  The struggle between wanting people to understand our children's special circumstances and needs, and just wanting our child to fit in instead of always standing out.  Maybe if I had it to do over I would say something different.  Maybe next time I'll think of just-the-right-thing to say.  Who knows.  But one thing's for sure - Gianna wasn't the most clumsy person in the room that night.  





Friday, April 25, 2014

Easter Bunnies

It was a beautiful Easter in Kentucky and we were blessed with both great weather and getting to spend time with both Matt's and my family.  Angelo and Dominic had both given up candy for Lent, so they were beyond-anxious for this day to arrive!!  Here's a little video of the boys trying to wake up Gigi very sweetly on Easter morning.  They were so excited to go find their baskets and she was perfectly happy to keep sleeping for a while!
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The boys finally got her up and hunting for baskets


I wish I knew what they were all cracking up about after church!!







This is the look Gigi gave me when I told her she had eaten enough candy for the day!! :)




 

Thursday, April 24, 2014

Therapy Update

Therapy has been a Major part of GiGi's life (and our family's life!) essentially since she was born.  She started in the First Steps early intervention program when she was just 8 weeks old, and received Physical Therapy, Occupational Therapy, Speech Therapy (and feeding therapy for a while), and Developmental Intervention  - each therapy every week until she was 3.  The early intervention program ends at that time, and then kids who still need services can enroll in the Early Start program.  Amazingly, Gigi was able to transition OUT of Speech Therapy totally this winter - she is now considered age appropriate for her speech/language skills!!  This is so incredible to us and such a blessing after she was believed to have significant apraxia of speech at age 2, and was exclusively learning sign language to communicate!!!  Her progress in speech has been so amazing to witness and she would now even be considered "chatty"!  GiGi is such a people-person - I'm so happy for her that she is able to talk, sing, and communicate fully. 
So after an incredibly intense first 3 years of therapy....what does it look like for GiGi now?  She now receives physical therapy and occupational therapy through the early start program at her preschool - this is much less (only 120 minutes per month, rather than a session of each every week).  I am very thankful for the early start program, but it is a whole different ballgame than First Steps.  First, she receives much less therapy just based on their service limits.  Secondly, we went from Constant communication with her therapists (we were present for nearly all of her sessions - the majority were provided at home) - to essentially zero communication with the therapists.  I have met the PT once (happened to run into her in the hallway), and have never met her OT.  We receive updates 2 x per year, and informal reports from the classroom teachers.  Not that this is a bad thing necessarily - just very different from the total intense involvement we've been used to.  We also take her to office-based physical therapy every week, because she needs so much additional help in this area.
GiGi's major challenges at this time relate to her physical abilities and motor skills.  This includes things like walking, running, balance, and what they call "self-help" skills like dressing and undressing, potty training (whole other subject there), and brushing teeth.  Probably the most noticeable issue is her balance - she has a trifecta of issues working against her here.  1.  Vision issues, 2. Hypotonia (very low muscle tone) and 3. her encephalocele surgery removed some of her occipital lobe, the part of the brain responsible for balance (and vision).  SO although her balance is terrible and progress is slow, with all of the odds against her, we have to keep in mind how well she is really doing and are very grateful that she can stand and walk at all!!

Here's some recent videos and pictures from her therapy sessions with  Julie in PT.  I love her laugh in the first video (having fun in therapy - yea!!) and her determination in the second one to pull ALL the way up!  Makes me want to go do some pull-ups myself!! 

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 Julie distracts her by talking about things in the room and with stuffed animals, etc. to get her to work on her balance on the "log".
Gigi in "beast mode" coming out of the tunnel.  I remember when she would cry and refuse to even enter this thing!

The "horse" is a new addition to the therapy routine.  We've thought about getting her into therapeutic horseback riding but she's terrified of animals so I'm pretty sure it would be a recipe for disaster!  So for now, this electronic horse is great for her balance - kind of like riding a mechanical bull but much more slow and controlled.

Monday, April 7, 2014

Spring Smiles

It's been FOREVER since I've posted and I really need to catch up, but for now, I want to share our new family pictures!  :)  The photographer, Aseel, was our photographer for Gianna's Littlest Hero session when she was less than a year old.  She hadn't seen GiGi since, so she was so pleased and surprised with her progress!  A link to her blog entry about GiGi showing her then-and-now picture is here.  It's been a long winter in Kentucky, but we had a beautiful spring day for the photo session.  SO happy to be able to have pictures of these precious moments with my family.  Aseel really captured the kids' silly, sweet, fun personalities!

Click here for a video Aseel put together with the photos.  I love the happy song - I don't know what it is, but Gianna keeps asking me to sing it.  She loves looking at the pictures and seeing us all smiling together!  

Gianna looks SO grown up to me here!!









Thursday, November 28, 2013

Thankful

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 We were blessed to be able to share a Thanksgiving meal with both sets of Grandparents this year - Matt's family a couple of weeks ago, and mine today.  


When I say prayers with the kids at night, we always start with thanking God for the good things in their day and things they are grateful for.  This year for Thanksgiving, we decided to do a project where we wrote things that we're thankful for on pieces of a paper chain.  Our chain is very long....so much to be thankful for!!!

Matt had lots of helpers with stuffing the turkey!



Wednesday, November 27, 2013

Babies!

Gianna has a super-short attention span and she does not like to sit still to watch TV or movies for more than a few minutes, but the one show she's interested in is Sesame Street.  She calls it "Babies" because her favorite part is when Elmo's World comes on and he usually has a segment where he talks to a baby.  As soon as she gets home from preschool she always requests "vanilla milk and Babies"!  So when we saw that Sesame Street Live was coming to town, we knew we'd have to get tickets just to see the look on her face!  The show didn't actually contain any babies, but she was still amazed by the big singing characters and loved it!  Gigi really never dances, but this show even managed to get her up and moving to the music.  The boys even had fun even though the show was geared towards younger kids - it was a great family night out!





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Fall Fun


I'm terribly behind in posting on the blog but I wanted to be sure to post my Halloween pictures before Thanksgiving at least!!  GiGi and Angelo dressed up as garden gnomes and Dominic as the Headless Horseman, continuing with our sweet + scary theme from last year!  This was Gianna's first year to go out trick-or-treating with her brothers and friends.  This girl has almost as much of a sweet tooth as Angelo, so she was in her element!


I love this picture because it looks like Angelo is protecting Gianna from the scary Headless Horseman.

It's all about the candy!  Gigi being silly before trick-or-treat.

GiGi and Dominic still going strong.... Angelo was ready for bed after the sugar rush wore off.
  
GiGi's candy corn Halloween outfit for pre-school
Cheering on Dominic at flag football the weekend before Halloween.
Gigi loves to watch the boys play sports and clap.
I'm looking forward to having more time this holiday weekend to catch up on posting!  :)  So much to be thankful for!!