Thanks so much for all the love, prayers and good wishes this morning - I have good news to share!  Gianna's surgeon thought her fontanel didn't look too bad.  And he definitely thought she looks healthy (she even gave him a big grin!)  He advised us to keep a close eye on her over the next few days and if her head gets any worse (more filled with fluid and bulging on top), then they'll do a CT scan.  Otherwise, he'll see her again in two weeks.  I'm so glad we took her in to put our minds at ease.

Trusting Intuition

"You can either go ahead and go to the Emergency Room or wait and have Gianna seen in the neurosurgery clinic first thing Wednesday morning".  This is the choice we were offered Monday when I called the surgeon's office to ask about some concerns we have with Gianna's shunt.  It's a situation that's not as clearly an emergency as something like, say,  a broken arm, but could potentially either be, a) nothing serious (just a fluctuation in the fluid) or, b) really serious (a possible infection or malfunction of her shunt).  It seems to me that the fluid and pressure may be slowly building back up again in her head, despite our "priming" the shunt.  There's puffiness around the shunt, her fontanel is more full of fluid, she's been more sleepy and fussy than usual, and her eyes look worse to me (more crossed and all-over-the-place).  I had to take about 50 pictures of her in her UK dress on Sunday to get a couple where her eyes looked pretty good.  So.....since I'm writing this Tuesday evening, obviously we chose to wait until Wednesday morning for the clinic visit.  She hasn't thrown-up or had a seizure (the go-to-the-ER-right-away symptoms), so we decided to wait and watch her closely.  An ER visit without a clear emergency seemed like it would (definitely) involve her having to spend hours there and being seen by someone who isn't the surgeon who's most familiar with her, and (possibly) being subjected to tests/procedures/etc. that might be unnecessary for her.  I feel torn between being an overly-cautious parent, and possibly missing something that could really be a problem....  Meanwhile, G's sleeping peacefully this evening without a care in the world.  Time to join her in some sleep and we'll just pray for the best possible news in the morning!

March Madness in the Bluegrass

Although the Steelers didn't win the superbowl this year, Gianna has moved on to watching Kentucky basketball.  Our little good luck girl helped us cheer on UK to a victory over UNC tonight - their first time in the Final Four in 13 years! 

Happy 6 Month Birthday!

Gianna turned 6 months old yesterday, and unfortunately had to start out the day by getting her vaccinations.  Other than the tears that always go along with shots, her appointment went really well.  Her pediatrician was especially impressed by her "social skills" - laughing, smiling and making eye contact to engage with him!  She had her third hearing test on Monday, and didn't pass it again....  However, she had fluid in her ears again, so that seems to be the main problem with her hearing.  Weighing in at almost 16 pounds, G's in the 45th percentile for weight and 70th (!) percentile for her height.   She loves to play with her feet, chew on her hands (she has two teeth already coming in on the bottom!), and has learned to roll over from her back to front.  Her Dr. confirmed that she is behind developmentally with her motor skills, but she's making progress, and that's what really counts.  She continues to absolutely amaze us! 

Baby Talk

Matt took this little video of Gianna "talking" tonight.  Love the baby-babble!!  I don't know what she was trying to tell him, but she was definitely happy about it. 

GiGi - 5 Months Old

 

I'm really late posting Gianna's 5 month old picture....it seems like the days and months go by faster all the time.  It's amazing to me that the first time I took her picture with this baby doll, it looked bigger than her!  It's hard to get a still picture of her these days - she gets so excited and kicks her legs, waves her arms and moves her head from side to side now.  She's definitely a "people person" - just as soon as she makes eye contact she starts smiling immediately!   I took her back to have her hearing retested recently, but unfortunately she had fluid in her ears again.  The audiologist said they will try testing her each month for two more months and if she still has fluid, she'll need to have a consultation with an ENT doctor to possibly have ear tubes, since the fluid is probably muffling her hearing.  In addition to loving people, Gianna also loves to eat (well, drink).  She's not quite able to hold her head up well enough for me to feed her from a spoon yet, but I think she's getting stronger all the time.  She's up to a little over 15 pounds now - I honestly think she is bigger than either of the boys were at this age! 

Love-Hate Relationship

I've decided I have a love-hate relationship.....with the Internet, that is.  Have you ever looked something up on the web, and then instantly wished you hadn't?  Let me back up....  So I finally got around to getting copies of Gianna's MRI and CT scans on a CD today.  Although I can't really make out 90% of what the images are, they each have a written report giving lots more information than I had ever understood about Gianna's brain and spine.  The reports contain all the detailed terms like "slit-like ventricles", syringomeylia, and colpocephaly (that was a completely new one to me).  Of course my next step was to look up all those terms to find out more about what they really mean. 

I distinctly remember thinking it was a GOOD thing when the neurosurgeon told me that Gianna's ventricles looked like "slits" after her shunt surgery.  After all, that was the point of the shunt, right?  Her ventricles were previously enlarged with fluid, so to look like slits must mean that they are now nice and small.  That's correct to an extent, but what I didn't know was that ventricles can actually be too small, and there is something called Slit Ventricle Syndrome.  Some of the things we've been told Gianna may develop as she grows (severe migraines, nausea/vomiting, lethargy) are all symptoms of this syndrome.  I read a case report of a 5 year old little girl who had this syndrome, had a shunt revision surgery due to the symptoms she was experiencing, and died 22 hours later due to a cerebral edema.  I read about the vision problems, pain, weakness, and paralysis developing as syringomeylia progressively destroys the center of the spinal cord, and I read more about the severe neurological deficits associated with Gianna's Chiari III Malformation.  And so I hate you, Internet.  A lot. 

But here's the thing....the internet, and specifically this blog, also allowed me to "meet" two other mothers this week who have daughters with encephaloceles.  One has a daughter named McKenna who is 18 years old and lives in Minnesota.  McKenna's mom has subsequently adopted 9 (!) more children born with disabilities.  You can read about their incredible, inspiring family here.  The other mom's daughter is named Grace.  Grace was born just 4 days ago in Mississippi.  Her encephalocele closure surgery was this morning and I've been saying prayers for her all day.  You can read about precious Grace here.  Without the internet I would have never gotten to talk to these two amazing women, to get to celebrate the joys of their children with them, and would have very likely lived my entire life without EVER having met another family with a child born with an encephalocele.  And so, Internet....at the end of the day, I think I love you after all.