15 Month Update

Gianna had her 15 month pediatrician appointment today.  Other than the usual tears from the vaccinations, all went well.  I remember that the kids' appointments that included shots used to be upsetting to me to see them cry and be hurt.  After everything that G's been through, it now seems like such a minor thing!  Here's an update on her development and therapies. 

• The ophthalmologist was pleased with the results of her eye surgery.  Her right eye still drifts in somewhat, but is much improved from before.  She still needs to wear her glasses, both because she's far sighted and to help support the eye muscles that were corrected with the surgery.  It may be coincidental, but it seems like her development has really blossomed since having the surgery - I'm so glad we made the decision to do it!!
• Both the neurologist and neurosurgeon seemed surprised and happy with her progress.  The main things from their perspectives that we have to be aware of are the potential for seizures and problems with her shunt.  So far so good, but these are issues that remain possibilities throughout her life. 
• G has physical therapy every week.  This is an area where we've seen tremendous growth over the past couple of months.  I remember when we set her therapy goal to be able to crawl 10 feet, and it seemed like an enormous task that she may really never realistically achieve with her low muscle tone and balance problems.  Here she is crawling all over the place on Christmas Eve (unfortunately, to the usual kid-magnet - the electrical outlet...).  So incredibly proud of her in achieving this goal!!! 

• Her PT told me today that she will need to wear splints on her feet to be able to stand correctly and hopefully learn to walk. She curls her feet in really tightly all the time which apparently helps her to feel like her joints are getting the compressions that a baby would normally get when standing/walking. The problem is that she curls them in so tight that it is impeding her ability to stand correctly and she rolls her ankles in. (I'm probably not explaining all that the right way, but that's my interpretation!)
• GiGi has speech/feeding therapy every 2 weeks.  I gave an update on her feeding recently, but she is working on speech sounds and recognizing words also.  She says "Da Da" and points to everything  and says (in her own baby-talk way) "What's that!?", and (my absolute favorite) she calls her brothers "This!" and "That!".  She waves hi and bye and does the signs for "more" and "all done" (which is really useful when feeding her!).  I've gotten the boys and her cousins to watch the baby sign language videos with me so that they can help teach them to her.  G's developmental interventionist showed me some iTunes Apps that teach baby signs, and she loves to watch them and touch the screen, but isn't repeating yet. 
• In addition to the physical, speech and feeding therapy, G has a Developmental Interventionist that works with her weekly (she's been with her since she was only 8 weeks old!), a weekly appointment with an Occupational Therapist (to work on fine motor skills, strengthening muscles, and adaptive skills), and receives visually impaired preschool services several times throughout the year.  She is so blessed to be surrounded by an absolutely amazing array of women who are experts in their therapeutic disciplines.  Not to mention that they are an incredible support for me and Matt also!  They are so encouraging and motivating to all of us. 
  

  

  I think G looks so big sitting in her rocking chair!
  

  
  
  
  

  

  And here in the big rocking chair squishing her brothers ("This" and "That")!

G LOVES to watch her brothers in the bath.  As soon as she hears them she crawls in super-speed to get to them and stand up holding onto the edge. 

Here's Angelo as a baby doing the same thing!  I'm not sure how old he was here, but it's neat to see her following in her brother's footsteps!



P.S. Can you tell I've had some time off from work??  More time to write than usual!

Oh What Fun!

Christmas morning - taking it all in and loving every minute

Gianna's favorite spot....with Daddy

Look at me pulling up and standing!!

GiGi's Christmas Tree

We celebrated a joyful Christmas 2011 with family and friends.  Gianna absolutely loved the excitement of watching her brothers open gifts (and helping her open hers).  She seemed to just take it all in smiling and enjoying watching everyone.  Her favorite gift was...of course...playing with the wrapping paper!

Visit to Santa

Visiting Santa to ask for Christmas gifts is one of those holiday traditions that kids either absolutely love or absolutely hate.  Here's the verdict for our kiddos this year...

Dominic and Angelo gave Santa the thumbs-up, but Gianna wanted no part of it!



Here's me (on the right) and Wendy visiting Santa when I was about GiGi's age. 
Looks like I had exactly the same reaction!



Tribute to Kaitlyn

When Gianna was first diagnosed, we searched the web obsessively looking for stories of other children who survived with her condition.  I soon found the facebook page of Baby Kaitlyn's mother in Plymouth.  Kaitlyn received the same diagnosis of an occipital encephalocele before birth, and had overcome many odds - she had just celebrated her first birthday when I came across her story.  Looking at all her beautiful pictures and getting to see how Kaitlyn had inspired so many people around her was a source of hope for us.  I was so heartbroken to learn this morning that Kaitlyn passed away last week - just before her 2nd birthday.  More can be read about her story here.  My heart goes out to Kaitlyn's family and I truly thank them for sharing her story with the world.  Their little angel was an inspiration for so many and will be truly missed. 

PJ Day

Gianna's and Angelo's classes had PJ Day for the last day before the holiday break.  Dominic was jealous that he doesn't get to do this anymore in 1st grade!  G had her weekly physical therapy and speech/feeding therapy before going to daycare this morning.  It is truly amazing the progress she has made since having her eye surgery!  She used to cry the whole time during PT sessions, but now she's really enjoying it and making progress every week. 

Here's GiGi on the mats at her morning PT session



I love this video Matt took because it really illustrates how far G has come in her eating/feeding since starting this therapy.  It's hard to believe that this little girl eating chicken and dumplings with a fork is the same girl who would choke on a small baby puff just a few months ago!! 

Look Who's One!

So I realized that I had never posted more pictures from Gianna's 1st birthday party other than the messy-cake-face picture! Although this is super late, here are pics from her big day. The theme was owls and it was an absolutely beautiful fall day. The thing I will always remember is how happy G was from the moment she woke up that day until the time she went to bed. It was like she just knew it was her special day and she was going to enjoy every minute of it!!

 



 

Much love to all those near and far who helped us to celebrate Gianna's birthday.  This day was a dream come true for us!  Looking back on these pictures also makes me realize how much improved G's eyes are since her surgery the week after her birthday!  I'm looking forward to experiencing the next year of life with little G - she has made more progress than we ever could have imagined and has blessed our family beyond measure. 

Sweet + Scary = A Fun Halloween

Getting ready to spend Halloween evening with cousins Peyton and Haley. 
No chance of getting everyone to look at the camera and smile at the same time!!



The boys out trick-or-treating,  Dominic was determined to be "scary" this year (I think he achieved it!), while Angelo could still be convinced to pick out a sweet furry costume. 







This picture is blurry, but I love how happy GiGi is, AND the fact that it's blurry because she's almost crawling!!

Had to add a close-up of G's "high-heels" - I think these must be the kind Miss Piggy wears!



I'm not sure if this pose falls into the sweet or scary category...



Another reason to like Candy Corn.....love this dress from my cousin Ashley!



Did I mention that Gianna had a few Halloween outfits?  :-)
It's the perfect holiday to fuel my hobby of dressing her up!

Love Notes

Gianna was featured in the Ronald McDonald House October newsletter today.  So proud of our sweet little GiGi!! Click here to read her birthday story.

A Home Away From Home

The Ronald McDonald House of the Bluegrass has a special place in our hearts.  Although we didn't stay at the house itself, we used their Family Room at the Kentucky Children's Hospital on a daily basis after Gianna was born.  The Family Room is a quiet, comfortable place for families of hospitalized children to get a few minutes of respite, a snack, cup of coffee, or make a phone call.  It's staffed and supplied entirely by volunteers. 
To say "thank you" during this time of celebration of Gianna's birthday, guests at her party brought donations for the Ronald McDonald House and Family Room to give in her honor. 

We took the kids to deliver the "goods" this weekend.  I'm pretty sure at first they thought there was going to be a Happy Meal involved in this trip, but it gave us a great opportunity to talk to them about giving.  They still remember Matt and I being away from home and Gianna being in the hospital.  We talked about other families who live far away and stay at the Ronald McDonald house while their child is in the hospital, and how they make this comfortable place their home while they child recovers.  We've been given so much with Gianna's life - her birthday is a perfect time to show our thankfulness by giving back. 

This statue sits in front of the house and is a beautiful tribute to my friend Elizabeth's mother,
who dedicated countless hours in service to the Ronald McDonald House. 

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!