EEG Number Three

As I type this blog, I am on my last day of a ten day vacation.  It has been wonderful.  I should mention that I only work two days a week, so having ten days off in a row really isn't necessary, but I have enjoyed every one of them.  My mom has been visiting us since the end of April and will be leaving this Sunday.  Having her extra set of helping hands in the house has provided time for some chores and lots of fun.  We took the kids to the ocean, a few parks, and many visits to our neighbor's house- which features a horse, goat, and chickies.  Our biggest accomplishment was done in four days, Ellie is potty trained!  Hurray!

After a wonderful Memorial Day weekend, it was back to business.  Owen has been having staring spells since the beginning of March.  They last seconds and for a long time we only noticed a few a week.  In the past two weeks, they have dramatically increased.  I was pretty sure we were witnessing absence seizures.  The initial plan was to do another EEG in August when he goes back into Boston for his next check up, but Owen's neurologist decided we should do it now since they have increased.  Owen has been fairly irritable lately (not much of a surprise) and seizures can make that worse.  They can also affect sleep, which Owen does not find to be an important use of his time.

As I have mentioned before, Owen loves EEGs.  The twenty or so sensors they attach to his head is his version of a massage and he cooperated willingly as Mary attached them.  Mary helped with Owen's EEG in December (when he was an inpatient) so she remembered what an unhappy little boy he was.  It is fun to show off my new and improved Owen.   He even graced her with a few smiles.  About five minutes into the EEG, while Mary and I were yakking about purses, Owen had one of his staring spells.  She watched him, stared intently at her computer screen, and then said she was going to go page Owen's neurologist.  Go OWEN!  Finally, EEG number three captured a seizure!  It actually captured quiet a few since he is having them in clusters.  We are starting a new anti-seizure medication today as well as keeping him on the one he currently takes.

In other news, Owen does not have FOXG1.  This was the Rhetts-varient disease we tested for in March. The results came back a week after his MRI.  Now that I know he doesn't have it, I can officially say, thank goodness!  I don't like any of the diseases they are testing him for, but that one seems particularly awful.  We are still awaiting the results of a cholesterol disease which we should have sometime in the next few weeks.

Peaches and Smooches

Taking a nap on his new bean bag loaned to us from his OT, Christine

Nuk break before his MRI

Playing in his Little Room loaned to us from The Perkins School for the Blind

We are in more of a taste testing process rather then actual eating.  Owen so far does not like  apples, peaches, or bananas. Maybe we will try some veggies...

Enjoying a smooch and hug from Ellie

Six Month MRI

Last Thursday was our big trip into Children's Floating Hospital for Owen's six-month MRI.  In the days leading up to the appointment, I was very anxious and incredibly distracted.  For anyone who I interacted with during that time, I apologize.  I have no idea what we talked about because my mind was only focused on one thing.  Has it progressed?

Sadly, it has. Thursday morning started for me at 2am when I woke up to Owen screaming his high-pitched neuro cry.  He has been doing that a lot again lately and I got up to help Pete out.  Owen screamed in my arms from 2am until 5am when he finally fell asleep.  It is so difficult to watch your child in such distress.

In general, it just wasn't a great morning.  We hit traffic heading into Boston and were 20 minutes late for our appointment, an MRI machine was broken and Owen was about an hour and a half late getting into the machine, and he pulled out his IV while waiting for his turn.  After the MRI was completed, Owen had more blood drawn and also another lumbar puncture while sedated.  Then we met with his geneticist who did an exam on Owen.  She suggested a new test to run on Owen for a fairly common genetic disorder.  Many of the markers for it sound like Owen and we will be awaiting those results some time in June.

Owen's chromosomal tests have come back completely normal, all of his mitochondrial tests are normal, and we are just waiting on the result of the variant-Rhetts test which should be arriving any day now.  The most significant portion of the day was reviewing Owen's MRI with his neurologist.  We were able to look at the images taken in November and December of 2011 and compare them to the current MRI.  The progression of the disease of the white matter of his brain was obvious to our untrained eyes.

We feel satisfied with the appointment.  It wasn't wonderful news, but it was confirmation that we are on the right path with Owen.  We are doing everything we can to keep him comfortable and happy.  Loving him every day and trying to enjoy each moment with him.