Not the 26 Leads I Was Looking For!

Now as a Realtor, you can imagine how exciting it is when I get a lead for a listing or a buyer.

Unfortunately, this post is not about those leads.  This is about J-Bean and her tumultuous relationship with the 26 electrodes attached to her head for a 48 hour period!


Before Josephine was diagnosed with Tetrasomy 8p Mosaicism, when Josephine was about 9 months old, we went to the neurologist, Dr. Aviva Bojko, to determine the reason for Josephine’s developmental delays.  Dr. Bojko prescribed an ambulatory EEG and a brain MRI to see what was going on.  Let me tell you…the difference a year makes!

The first time around, applying the electrodes was awful.  Josephine screamed and screamed.  But afterwards, she was fine.  I don’t think she was aware of her surroundings and her body, so it was no big deal.

That is NOT the case at 2 years old!  This time she was wonderful when the leads were applied.  Afterwards, at home…screaming, crying, sleepless nights for the hubby (thanks, Sheldon) and lots of daily frustrations for me.

Thankfully, the EEG was removed this morning and we have our Principessa back.  Granted, she is tired and grumpy.  But I will take that over what happened during the last 2 days ANYTIME!

We will have her results on November 8!  Keep those fingers crossed!

Hospital: Day 3

Our morning was wonderful today because we got to see Little Sheldon!  He came to visit his sister and boy was she happy to see him!  I realized at that moment just how much I missed not seeing him.  What a strong boy he is.  I know he has been concerned about Josephine and was happy to see her too.

And thanks to our wonderful friend, Trish for all her help.  She hosted a playdate and gave us all some much needed time to unwind.

Dr. Morse, who is Dr. Bojko’s partner, said there are regular spikes in her brain activity and they needed to monitor Josephine for one more day, at least.

Not really sure what that means and we are looking forward to hearing more about what happens next.

Are we going to need to stay longer?  What else has to be done?  Will she have to be on medication?  If so, why and for how long?  What if she is not on medication?  What happens?

So much do deal with for such a little girl…

Josephine’s 1st ER visit

Well, Friday started out as any old day and then dinner came along.  We all sat down for a relaxing meal and noticed Josephine started moving her head left to right in a repetitive motion.  My mom noticed Josephine had been looking at the dining room light just before the movements.  We waited and observed for about 15 minutes and saw the same thing occur again.  And again.  After brief discussion, we decided to call the neurologist, Dr. Bojko, to alert her of the situation.

The on-call doc told us to take Josephine to the ER, which we did without too much panic.  We didn’t want Little Sheldon to worry.

The ER staff was amazing!  They whisked us in quickly and we were seen by the attending pediatrician within 20 minutes.  After consultation with Dr. Bojko, Josephine was admitted for another EEG test.  The difference is this time the doctors will monitor her with a video camera so the movements can be captured on camera as well on electronically on the EEG machine.  Updates to follow…

MRI and Ambulatory EEG Results

After a great amount of waiting patiently and many phone calls to the neurologist, we have some new information regarding Josephine’s brain.

MRI RESULTS:  As we suspected, Josephine has complete agenesis of the corpus callosum.  What does this mean?  No idea.  It depends who you ask and what research you do on what site.  What we do know is the connective tissue/fibers between the left and right brain is nonexistent.  Normally developed within the first 6-12 weeks of conception, the corpus callosum allows the right and left brain to communicate through as many as 200 million fibers.  There is another pathway this communication can occur, but there are only 50,000 fibers available in that connection.  Check out for more detailed information on disorders of the corpus callosum.  Again, what does this mean for Josephine?  She may need more therapy to help build new ways for the left and right brain to communicate.  The good news is that we have started Early Intervention already, so only improvements can be made.

AMBULATORY EEG RESULTS:  These results are less severe than the MRI, but still concerning.  Josephine has a tendency toward seizures, but did not experience a full blown seizure while hooked up to the EEG.  The neurologist, Dr. Aviva Bojko, is not prescribing any medication at this time because the EEG just showed spikes in the activity in the right and left frontal portions of the brain.  If we see any signs of seizures such as blank staring and twitching of any kind, we are asked to call the Dr. Bojko immediately.  Are these seizures connected to the agenesis?  Your answers are as good as ours.  I read that seizures are increased with complete agenesis and when having conversations with other medical professionals (a P.A. and a nutritionist), if there is no corpus callosum, seizure activity should cease.  More conflicting information…no surprise here.