It's about time for an update . . .

What lies behind us and what lies before us are tiny matters compared to what lies within us. - Ralph Waldo Emerson

So, yes, life has been somewhat hectic.  But in reality, whose isn't?  Work has been an absolute whirlwind since the beginning of October.  Being the grade-level rep for 14 third grade classes and reviewing over 60-something PGPs for our school has definitely taken its toll.  Needless to say I am highly anticipating visiting our families up north in just a few weeks.  Can you believe Christmas is now less than a month away??


Well, really, where has the time gone?  Our baby boy will be 8 months old tomorrow!!  He has filled our lives with such an incredible amount of joy I truly can't imagine life without him!  He is sitting up completely by himself now.  Still stubborn as ever in the rolling over department, but we'll get there.  He rolls when he feels like it.  *sigh*  About a week ago, he said his first word too!  Can you guess what it was??  Mmmhmmm!  Momma!  We are working hard for Dada - I'm hoping before Christmas.  He is chowing down solids, his favorite foods are oatmeal and peas!  Definitely didn't get the food preference gene from Chris.  Thank goodness!  I will finally have someone who will eat "green stuff" with me.  :)


At the end of October, we were so very fortunate to participate in the first annual Walk n' Roll for Spina Bifida.  Our team raised over $3300 for the SBACFL!  We couldn't have done it without our family and friends.  My dad's team raised over $2500 alone!  Pretty amazing.  Despite the rainy start, we had a blast and were able to meet so many inspiring individuals.  Check out this link for pictures and team info.  http://www.walknrollsbacfl.org/faf/home/default.asp?ievent=482404.  We are already gearing up for next year.  

And we have sitting up....(almost!)

We tend to forget that happiness doesn't come as a result of getting something we don't have, but rather recognizing and appreciating what we do have. - Fredrick Keonig

We have lift off!  Well, head lifting that is.  Chris and I are amazed at just how much this little guy has accomplished in only a few short weeks!  He went from barely tracking and holding his head up to full lifting and interacting all within a couple of days!  Thank goodness for physical therapy!  Although we only have PT once each week, Chris and I have learned some techniques that have helped Gabriel start flying through his milestone checklist! 

This week included a visit back to our ophthalmologist only to find out that the strabismus has reversed itself.  So now, his right eye is the weaker eye.  I guess this is a normal outcome and for now we will stop patching to see if his eyes will align on their own.  After researching, I have learned that this is extremely common for people born with hydrocephalus.  He may require surgery (sigh) when he is a year old to "loosen" them muscles, but we are remaining optimistic.  One thing that we have learned - doctors are wonderful in the amount of knowledge they share, but they may not always be right, especially the first time.  So, we will continue to work on tracking and hope to see a vision therapist soon.

Another concerning issue that has popped up within the past week are purple hands and feet!  I almost fell over last Thursday when I looked down only to see that G's feet were blue!  I immediately massaged which seemed to help but definitely put me into panic mode!  We called the pediatrician who referred us to a cardiologist.  It could simply be that G's feet just got cold, but it could also be nerve related due to the spina bifida.  We go on Monday for an appointment with the cardiologist to get it checked out.

Chris and I feel simply blessed!  We are completely enamored by him!  <3

Let the Craziness Begin!

The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be. ~ Horace Bushnell

It truly feels like forever has gone by since I have last updated and yet so much has happened in this time.  I'm going to rewind a bit back to the beginning of August.  I went back to work on August 2, almost four months since having our little guy.  It was definitely much harder on me than our little man, nonetheless, it has worked out great!  I have to thank my blessings that I am a teacher and can leave at 3:30 everyday (despite all of the other stuff I bring home with me to grade!).  The Friday after I returned to work, Chris took the little guy to his first spina bifida clinic.  This is where we get to visit all of the doctors on the same day and the discuss the best possible plan for the future.  I was heartbroken that I could not go with them as, of course, this had to fall on the day of my "Meet & Greet" at school.
Thankfully I have an amazing husband who recorded everything for me so I could hear it all for myself when he got home.  At the clinic, we found out that Gabriel's calf muscles are weak which in turn leads to weak pointing reflexes in his ankles.  Due to this weakness, he may need AFOs to help him walk but Chris and I have both agreed that at least he will be able to walk!  He also seems to have a preference for his left side and as it turns out, he is not visually tracking to the right.  This may be in part to the hemorrhaging the shunt placement caused in the back part of his brain but we are not certain.  He also has developed a cyst on the right side near his collarbone which also could be causing some discomfort.
Other than that, he was evaluated by a program here in Florida called Early Steps which provides physical and occupational therapy in home.  They believe that the tracking and left side preference is strongly related to how well he sees.  Since he has met all of his physical milestones, they only want to provide PT once a week.

Here is a video of him "talking."  :)

Almost 5 months!!

Praying for Chance

One of our fellow Spina Bifida friends is going in for his eighth (!) surgery tonight.  He underwent his seventh surgery last night to revise his shunt after it had become clogged.  Today they found that the shunt is draining one of his ventricles but not the other so a revision is needed again.  And he is only five months old.  Please pray for Chance and his family!  They have been in and out of the hospital for the past four or five days.  :o(  If you remember, Amanda Kern, Chance's mother, took our pictures when Gabriel was about a month old.  You can check out her blog at www.amandakern.com

Testing complete!!!

Whew!  It has definitely been a busy couple of days!  Wednesday morning, Alex graciously agreed to be our chauffeur as we ventured up to Arnold for Gabriel's battery of spina bifida tests.  We arrived early to check in and had quite an experience with the woman who helped us with all of our paperwork.  She was wonderful!  Alex and I kept joking around as we normally do and we were able to teach her what a comb-over was.  Alex wanted to make Gabriel's hair look like an old man's!  After we made her laugh, she brought us to a completely packed room where we had to sit and wait.  To my surprise, ;) I completely had a case of the giggles!  Maybe it was nerves or just plain old exhaustion; whatever it was it made Gabriel laugh too, and when he is happy, I'm happy.

We were called in for our first round - a renal ultrasound and hip ultrasound.  Alex was on diaper duty while I tried my best to occupy Gabriel's attention and keep him wiggle free.  The tech didn't tell us much about the kidneys and I really wasn't too sure what 'normal' kidneys look like so we just watched as Gabriel's kidneys lit up the screen.  The second ultrasound was for Gabriel's hips.  The tech said that everything looked great which was music to my ears.  With Gabriel being breech in utero and having spina bifida, he is more prone to hip dysplasia.  As of now, his hips look perfect which means I am one happy momma!

The last test of the day was a VCUG.  I was completely mesmerized! Gabriel didn't even flinch as the nurse inserted a catheter.  He smiled and cooed which of course made all of the nurses fall in love.  After the catheter was placed, they pushed a liquid into his bladder that contained a special dye.  Throughout this whole process, the technicians took x-rays to measure how full his bladder got and how much of the liquid he emptied on his own.  I watched as the black balloon on the screen expanded and just as I understood what I was looking at, the nurse said, "He's gonna pee!"  Out came the catheter and we watched.  Nothing.  Nothing. Nothing.  Finally, the nurse poured some warm water and wow!  Full stream :) ahead!  Yippee!!  He peed it all out.  (I know this may not seem like a big deal, but I was incredibly happy!  This is a BIG deal!!)

And finally, the last appointment of the week, was an opthamologist appointment.  Chris and I have been a bit concerned as Gabriel still occasionally crosses his eyes and I have noticed that his left eye sometimes slightly drifts outward.  Well, after Gabriel's shunt was placed, he had some hemorrhaging in his brain between the skull and brain tissue.  The hemorrhage eventually stopped but settled in the very back of Gabriel's brain in the Occipital lobe.  This lobe is responsible for our vision which means Chris and I are always looking out for possible issues relating to this.  Well today, the Doctor confirmed what we were seeing.  Gabriel has a slight stabismus in his left eye--or in our terms, "lazy eye."  So to help strengthen his eyes, we have to patch his right eye for two hours each day.  Given everything that he has been through, we'll take it.

For now, he's our little pirate.  :)  We are so completely blessed!

Almost 4 months!!

Updates & More

Over the weekend, Chris noticed an acorn-sized pocket of fluid around the shunt tubing near Gabriel's collarbone.  Being the nervous parents we are, we decided to take him to Arnold to get it checked out.  We met with Dr. Gegg in the ER and he felt pretty comfortable in his thinking that it was simply a pocket of fluid that Gabriel had pushed down to that area.  Something to monitor, no hospital stay (thank goodness!).

So, this week brings new adventures.  We have a busy day on Wednesday scheduled.  Back up to Arnold we go.  Gabriel is in for a long day as he will have a renal ultrasound, a VCUG, hip x-rays, an appointment with his GI doctor, and an appointment with his orthopedist.  All of these appointments are in preparation for our first spina bifida clinic on Aug. 5.  Thursday we also go to the opthamologist.  Busy.  Busy.  Busy.  :)

We'll keep you posted!

Sleepless in the Bay

So here I am, browsing several of my favorite sites, trying to get my mind back in work mode, and guess who's wide awake?  Mmmhmm....my little munchkin has decided to keep me company.  How can I refuse when I look down at him and am rewarded with a huge, gummy smile?  He completely melts my heart.  I know I will pay for this in a few hours as I drag myself out of bed to feed him...but I can't help the feeling of knowing that this may be a cherished memory when he hits those wonderful teenage years.  So, to the glider we go.  Hopefully the rocking will help make me sleepy too.