Back from the Mountains, Neurologist Visit

Hello Everyone,

We are back from our trip to Breckenridge with the Sailer fam.  We had a great time, despite driving down to Children's Hospital and back on Saturday.  It was a much needed time of rest, as well as wonderful bonding time with the entire family.

Our doctor's visit on Saturday went well.  It was one of the first Saturday clinics that the hospital has done - so there were very few people there.  We saw Dr. Brad Miller in the Neurology Dept.  He gathered all of the information from us, looked at our videos and observed Gia having a seizure right there in the office.  I was thankful he saw it firsthand.  He reviewed the MRI and discussed his thoughts with us. 

He does NOT believe she has Tuberous Sclerosis, in his opinion.  He says it is not at all on the top of his list from what he sees in the MRI.  He believes there would be other signs, if she did.

The right side of her brain is where the seizures are coming from.  He believes that area (with the smudged appearance, more white matter where there should be defined areas of gray matter) is a malformation of the frontal cortex.   (i.e. - her brain did not develop normally in utero).

He is not certain, however what explains the white spots (or growths) that are on both sides of her brain.  He has some ideas, but kept our MRI disc to discuss with other radiologists at Children's.

We hope to hear from him soon - and that he will have new insight after discussing her case with others. 

He did give us three medication options to research.  When we told him our hesitations, he was somewhat understanding.  He said it is our decision to do what we feel is best for our daughter, and that he is only a counselor. (answer to prayer there!)  When I asked what he thought about natural treatments such as Omega-3 fish oil, etc.  He said this:  'I wouldn't prescribe dangerous, expensive drugs if I didn't think they were our best bet.  The reason I don't prescribe the natural options is because they don't work.  But if you find something that does, great'.  Even hearing him admit the dangers of these meds was again, another confirmation to us that we want to think of those drugs as a last resort option. 

He did say that although the seizures are not harming (doing damage) to her brain - there is a belief among neurologists that 'seizures beget seizures'.   In other words, if nothing is done to stop the seizing in her brain - she may start having more and more, and in other parts of the brain as well.   

Our next steps will be to do more research, visit with more doctors, nutritionists and health care providers.  We are praying we can find a way to stop her seizures naturally. 

As far as the unknown aspects go... (not knowing what those white growths are ) ... we are purposefully choosing faith instead of fear.  Our God loves us, loves little Gia and has a plan for her life.  We will choose to trust Him for today - and leave tomorrow up to Him. 

Some pics from our time this week:

Our view from the house

Surrounded by all the Sailer cousins

Walking the halls at Children's Hospital with Dad

Checking out a really cool display at the hospital

Although  no parent ever wants to visit here, the hospital really is amazing.

REALLY excited about her hot choc-o-late in Downtown Breckenridge

At the sledding hill with Mom

All cozy with Daddy

We love you all and are so thankful for your love and support,

Hugs,

Sarah and Jeremiah