Remember everything you learned?? Now switch that...

Well, we've been home for a few days now, and I guess we're getting back in the swing of things.  People have been asking how the trip to Mayo was- and why we went.
Before we left, I guess I didn't have an answer- mainly because I didn't really know why we were going.  I knew we were having some appointments and were consulting with a seizure specialist there- but beyond that, I wasn't certain.  I guess I'll just tell the story of our trip....

My friend, Lynnette, graciously volunteered to travel with Rowan and I to Rochester.  Having her there was a blessing to say the least.  I planned to go by myself with Rowan if she couldn't make it, which would have been an enormous mistake and would have certainly caused more meltdowns than I had.
We left on Sunday around 1:00 PM and dawdled our way there.  We found our hotel easily and unloaded everything from the car- 5 trips!! How in the heck would I have done that with just me and Rowan?

On Monday morning, we met with Dr. Broomhill and Dr.Wong (both females!).  They are neurologists and work with children having intractable seizures among other seizure issues.

They asked bunches of questions, examined him, reviewed his MRI images from Sanford and his EEG results. Then they set us up with the dietician and scheduled us to check in at the hospital for a longer EEG study.
The next morning, we met with the dietician, who was wonderful. She eased my mind quite a bit when explaining Rowan's new diet and made me feel infinitely more knowledgeable. I'm sure you all know Row's been on a Ketogenic Diet- but she and the doctors wanted to tweak it and to make sure his ratios were correct.
They switched him from RCF formula to Ketocal. They also showed me how to make meals for him; three 100 calorie meals per day.  All meals including formula need to be weighed and measured on a gram scale to be as precise as possible and to keep Rowan in Ketosis.  His ketones need to be checked 2x daily now to make sure he's producing enough to help with seizure control.
After meeting with the dietician, Lynnette drove us over to the hospital so we could check in.
Right away, they got Rowan hooked up to an EEG cap he'd wear for about 30 hours. It wasn't too comfortable for him, but he sure was a happy baby during the study...

Gratefully, he didn't have any seizures during the EEG that were of much concern. His brain activity is not normal- and seizure control will always be an issue, but right now they are as controlled as possible with the help of medications.
Speaking of medications... They switched almost all of his medicines to pill form. They called to our pharmacy to discuss prescriptions and made sure of the carb content in everything that he ingests. They're sure thorough! But medication switches plus diet reorganizations mean lots of work for mom and dad.

During our stay, Dr. Lindley, his neurologist in Fargo called to say that the results from the genetic testing came back positive for DCX X Linked Lissencephaly.
It's hard for me to express what that news means... We already basically knew this is they type Rowan had- but I don't think I really wanted to know.  It's good, though. It's good to know facts.  Information is power, they say.

The genetic results help everyone involved to know exactly what type of Lissencephaly they're managing- and it gives us as a family information necessary to take care of ourselves and of our children.

How IT happened, I'm not sure. I'm trying to be pretty matter of fact about the genetic results- but the truth is that my heart aches over how he got this condition. Ok, I'm done being emotional...

 Here is our room... Not bad at all. It was pretty big and ended up being right across the street from our hotel! Both mornings, Lynnette was kind enough to walk me over a huge mug of super strong coffee.... I can still taste it. It was definitely a bright spot in the mornings.

They ended up keeping us in the hospital for a second day to make sure he was tolerating his new diet and medications. It was a good thing- but we were sure excited to leave on Wednesday...

 We put some toys and things in Rowan's crib to help stimulate him and to pass the time.

So... Moral of the story??

We got more information- I think more specific and detailed information. We had to re-learn the medications and doses again along with the meal plan. But now our dear boy gets to eat foods and that is the best news I could have heard in Rochester.  He just loves his butter-filled meals.
We go back in February to meet Dr. Wong and Dr. Broomhill for a check to see how all of the changes are going- and then again every three months.

We were ready to be home- Lynnette and I were tired- and I missed my Lilygirl like crazy.

But I think Rowan was the happiest to get home....

We love you all and are thankful we've got such amazing people in our lives.