Everything I Need to Know....

Gianna is 2 months old today!  Every "anniversary" feels especially meaningful with G.  We've read several accounts of families with children born with encephaloceles, where their baby only lived to 60 or 90 days.  Knowing that makes every day with her seem so precious - I absolutely can't imagine losing her now.  Thoughts of those families, coupled with the approaching Thanksgiving holiday, makes me realize how grateful I am for Gianna and how much there is to learn from her.  Author Robert Fulguhm told us that "everything we need to know we learned in kindergarten"....  I think much can be learned even from the tiniest among us, which got me thinking....Everything I Need to Know, I See in Gianna.  We don't always find wisdom in the places we seek it, but here's what I've learned in 37 weeks of pregnancy and 2 months of life with Gianna:

• Trust God
• Exceed all expectations
• Take a deep breath. Repeat.
• Good things really do come in small packages
• Miracles and guardian angels are all around us
• Sometimes a good cry helps
• There's not much better than your own home, a warm bed, and being with the people who love you
• Live a balanced life - eat some, sleep some, play some, and smile as much as you can
• The smallest among us may have the greatest strength
• Have Faith

HAPPY THANKSGIVING and much love and thanks to our family and friends!!!





2 months old with Babydoll "Marie".  Savannah thought this
would be a perfect name since she and Gianna share this
middle name!



Seizure Free and Sassy




Finally got the call today from neurology and Gianna's EEG was normal!!  So we celebrated by (what else?) getting dressed up :-) I remember one of the neurologists in the NICU telling us that kids with agenesis of the corpus callosum (ACC) do not often have seizures(this is one of her diagnoses).  So this is definitely a silver lining for Gianna!  By the way - when researching more about this brain condition, I read that ACC is the disorder that Kim Peek (the man who was the inspiration for the movie Rain Man) had.  Like any disorder, there is a whole range of possibilities for the severity and prognosis.  So she won't necessarily have the same issues or abilities that he did, but I thought it was interesting anyway.  A few other updates:  her last appointment with the neurosurgeon went very well - he felt that she is healing nicely from both of her surgeries.  She'll go back after the holidays to have a CT scan to check the fluid in her ventricles.  Also, she got medically approved for the Kidz Club program!  I attended a seminar for parents at Shriner's Hospital last week, and met two other families who have children at Kidz Club in the infant room.  She's smiling some every day now (best part of the day!) and starting to be more alert.  It's amazing to me how fast she's growing - when her cousins Anne and Ashley sent her this tutu outfit, I thought it would be months before she could wear it, and now it fits perfectly!! 

Electroencephalography

That's apparently what "EEG" stands for.....who knew?  Anyway, Gianna had one this morning to try to determine if she is having seizures.  For this test, electrodes are placed all over the scalp and the electrical activity produced by neurons in the brain are recorded.  A neurologist will read and interpret the recording to see if the patterns of her brain's electrical activity look like she is having small seizures.  The procedure took about 45 minutes and Gianna slept through most of it.  Mostly it was just quiet and dark in the room, but at the end of the procedure, a light above her face flashed on and off rapidly in different patterns to see if that changed her brain activity.  We'll hopefully get the results as soon as tomorrow.  


Gianna wasn't too appreciative of the electrodes being stuck to her head!




Once the lights were turned out, she was fast asleep.



One of Those Days

"Being deeply loved by someone gives you strength while loving someone deeply gives you courage." - Lao Tzu


Since G is still so young, it's easy to forget for a while that she's gone through two major brain surgeries, and has a whole range of diagnoses that have severe implications. We are normally just so focused on enjoying and appreciating our time with her that sometimes we can get crushed by the boot of reality when reminded of her situation. Today was one of those days.


This morning Gianna had her assessment that will hopefully enable her to go to Kidz Club, as well as to receive some other non-medical services. Although the services are both for children and adults, the assessment tool is designed only for adults. So it is made up of all kinds of questions about the ability to take care of yourself (cooking, cleaning, driving, etc), social skills, and other such things that are totally irrelevant to a baby's functioning. I was worried about Gianna being able to qualify for the services, since these things don't apply to her, but the assessor assured me that she had another infant qualify recently "whose problems and diagnoses aren't NEARLY as bad as Gianna's". Ouch.


Gianna's other appointment today was with the neurologist. This was her first time seeing neurology since she was in the NICU. I talked to the doctors (who are awesome, by the way) for a long time, but the basic summary was this: Gianna seems to be doing well because all she really has to do at this point is sleep and eat and look cute. Just wait. Over the next year her problems will become more and more obvious. Again, ouch. And that cute little thing she does with her left leg....straightening it out several times a day and pointing her toe....that may be due to seizure activity. They scheduled her for an EEG first thing tomorrow morning, and want us to try to record her the next time she does it so they can tell better exactly what she is doing and why she is doing this.


These are the days that take strength and courage.

Family Time

Here's a few more pics from Halloween weekend. Gianna got to meet for the first time and be spoiled by her Uncle Nathan, Aunt Adria, and her cousins Luca and Paul.  And since her NaNa and PapPap were in town too, I think she was held pretty much 24 hours-a-day all weekend!

The big event this past weekend was my grandmother's 91st birthday.  Here's some pics of the boys with Gianna before going to the party. 

I think they would have gotten in there with her if they could!

Here's a couple of pictures from the party.  One of the things MeMa loves is babies and children - they are always sure to bring a smile to her face.  She was thrilled by the new great-grandchildren additions to the family (both Gianna and Joshua, who just turned a year old).  And of course Dominic and Angelo loved helping her blow out the candles. :-)



Four generations of girls

 So I went back to work last week part time.... A hard thing to do, made much much easier by the facts that, 1) my mom is helping us tremendously by watching G until we can (hopefully!) get her into Kidz Club and 2) I really do love my job.  I sometimes feel like I've taken on another full time job taking Gianna to all of her appointments, assessments, etc. but I guess with 3 kids there never will be enough time in the day!Here's one more picture I love of Angelo with Gianna.... Not that it's a great picture, I just think it's so sweet.  I was so worried that he would be jealous of Gianna and want nothing to do with her since he's used to being the "baby" in the family.  I couldn't have been more wrong!  He constantly asks to hold her, feed her, kiss her and hold her hand.  I love the way he and Dominic are so proud of their little sister!

Bed time for Angelo and Gianna