5:00 a.m. wake up call

5:08 a.m. …. “SEIZURE!”  Chuck calls out this all too familiar word. Not the way we were hoping to wake up this morning.   Blank! Blank! Blankity! Blank!  At least we know the routine now. Call the neurologist, up his meds, wait and see.  The pattern right now seems to be…new dose, a couple good days (less days each time first time 4 days, then 3, now 2), seizure, call the doctor, up his meds, wait.  I am truly thankful for every moment of good times. I will take 2 days without seizures as a blessing, but we are really hoping for longer and longer periods of time between these episodes that shatter the day.

3 Year old Well Exam

It felt a little strange to be going to Gabriel’s 3 year well child exam today.  Was it really worth it? We knew he wasn’t “well”.  At the same we wanted to be sure his regular doctor was up to speed on all that has transpired.

Turned out to be an AWESOME visit. First let me say we love our family doctor. He has an incredible bedside manner, really takes time and listens. He is also an avid researcher, learner, teacher. We always leave a visit to his office feeling cared for and knowing something new.

The doctor took lots of notes, asked lots of questions and listened as we gave him the quick rundown of the seizures and medications. Then he looked both Chuck and I in the eye and asked “Now, how are Mom and Dad doing?”  We have been very blessed with great medical professionals throughout this journey, but this is the first time a doctor has truly asked how we are doing. (Not that we felt the other doctors should have, they were treating our child, not us.) He chatted with us, gave us encouraging words, as well as, some simple wisdom, then wrapped up the “seizure” part of our visit.

G had fun playing with the doctor and whizzed through all of his developmental checks and general medical checks.  He was full of energy, being a silly and a little ornery. I made a comment about how the medication seems to be making him a little hyper and more active then usual, even though the side effects warn of possible drowsiness. The doctor commented “I think that is great. I see him acting like a 3 year old boy”. The doctor followed that comment with something to the effect of…maybe his has been in a slight haze until now and this medicine is letting all of him shine. WOW! A whole new perspective on this extra energy I have been annoyed with.  Gonna be a learning curve for Mommy but we will figure it out.  (HA! didn’t mean to go back to the blog name….clearly we say it a lot around here!)

 

 

“Mommy….I’m just perfect”

Gabriel has been a total trooper through all the seizures, doctors visits and hospitals stays.  I was holding him my lap while the neurologist was doing a couple simple reflex tests.  He cupped my chin in his hand, looked me straight in the eye, and said in the sweetest little voice “Mommy-I’m just perfect”. How simple and sweet. In the midst of a hospital room full of doctors our little guy brings it back to what matters. No matter what to Mommy, Daddy and his Heavenly Father, he is “just perfect”.

 

Figuring It Out… Together

I’ve been thinking about starting a family blog for a while now, but never seemed to be motivated or find the time. I find myself with time today, as I watch our sweet baby sleep off yet another seizure. G had has his first seizure on Super Bowl Sunday. I was home alone with him and completely freaked out!….what else would a mommy do?  After calling 911 and getting him to the ER it was determined that it was just a febrile seizure, caused by a fever. No big deal….very common in young children. Turned out that was not the case for our little man. We are a little over a month in…so far G has had 2 hospital stays, many tests, at least 2 types of seizures and a difficult to treat form of epilepsy. (UGH! I don’t even want to type because it means it is really true, not a bad dream I get to wake up from!)

Before we got married, the pastor doing our premarital counseling, asked us why we thought we could have a strong marriage that would last. At the time I answered “because we don’t expect life to be perfect but we will figure it out together.”  Little did I know how true that statement would become in our lives.  We have figured out job transitions, loss of loved ones, serious family illness and a host of other things good and bad together. Now we are adding one more….. how to manage epilepsy in our sweet baby boy. Hence the name of our blog….we are quite literally figure it out together.