Time to Catch Up

So our idea is to use this blog as a means to keep people updated with Mila's condition.  This is no easy task.  With countless doctors appointment, therapies, insurance phone calls, hospital visits, on top of taking care of a special needs child 24/7 who doesn't sleep well at all, lets just say it is beyond exhausting.

So to start with I'll give you a little background and timeline on what has gone on in our live's in the last couple of years.

Mila was born with a rare neurological condition called hemimegalencephaly.  Basically meaning one half of her brain is larger than the other.  This causes seizures as well as developmental delays.  We didn't find this out until she was 8 weeks old.  The only difference we saw when she was born was that she had a large left cheek.  It didn't seem to be bothering her and after seeing a couple of pediatricians they thought it might just be some extra fatty tissue.  Our goal was to see a plastic surgeon or cranial facial specialist to get it checked out and maybe fix it down the road.

After getting the run around with insurance for about 8 weeks and not finding anyone that was in our network, we took her to the ER at Children's Hospital of Orange County (CHOC).  That way she would have to be seen by doctors and they would run some tests on her.  Little did we know that those few days in there would rock our world forever.

Here is a quick timeline of events so far:

• 4/12/2013- Mila was born 

• 6/2013- Initial hospital visit to CHOC emergency room. They did an MRI on her and we got the diagnosis that she had Hemimegalencephaly & Cortical Dysplasia, our lives were changed forever. We were admitted for about five days.  They did a Video EEG but didn't capture any seizures.  They prescribed phenobarbital for Mila to start taking for seizures. She wasn't having any but said since there was so much "abnormal activity" going on in her brain that they feel she should be on medication. 

• 7/2013- Mila had her first seizure (that we noticed)

• 7/2013- CHOC ER visit number two for seizures.  We were in there another four or five days.  They did another video EEG and her second medication was prescribed, Topamax. 

• 8/2013- CHOC ER visit number three due to more seizures.  The dosage was raised on her medication and we were sent home after a few hours. 

After that we had seizure control for about a year.

• 8/2014- CHOC ER visit number four from febrile seizures. They got Mila's fever down and we went home after a few hours. 

• 8/2014- We were admitted to UCLA children's hospital for a second opinion & testing.  They did a two day Video EEG & MRI. 

• 11/2014- UCLA for a scheduled Video EEG.  A couple seizures were captured on video.  We think Mila was so traumatized from all the testing and poking for iv's and blood tests that she had a couple seizures. 

• 11/2014- Overnight sleep study at CHOC to check out some breathing problems Mila was having from her facial issues.

• 12/2014- ER visit to local hospital due to febrile seizures. We were sent home after a few hours. 

• 4/2015- We'll be going to Cleveland Clinic in Ohio to see another specialist, another round of testings and possibly surgery, a hemispherectomy. Our surgeon specialist at UCLA is on medical leave and won't be able treat Mila.  So because her condition is so rare, this is our next option. 

Throughout this time Mila has had ongoing physical, occupational and speech therapies.  It was in-home therapy for the first few months but we now go into the local center a couple days a week.

This is only a small recap of some of the major things.  We have constant appointments with neurologists, epileptologists, ENT specialists, therapists, neurophsycologists, specialty dentists, ophthamologists, plastic surgeons, genetics, cranial facial teams and probably more that I'm missing.

We could write a book already about this journey and only be in the first couple chapters so far. 

Rick, Mila & Marcela- Christmas 2014