Prayers for Avery

Good morning everyone--
This is a tough one to write, but Shawn and I decided it's time to open up about something our family is going through, and ask for prayer.  Please bear with me.

Back in May, in an effort to find more answers to the issues Avery is having, Avery had a sleep study.  One of the things the sleep doctor found was occipital lobe seizures on his right side (under/behind the ear and over a little bit).  The advice was it was most likely nothing to be concerned about, but go ahead and see a neurologist just to clear things up, as this was just a sleep study, and not an actual EEG.

Through a friend, I found THE neurologist to see, a pediatric neuro who specializes in seizures.  His next available appointment was two months away, the week after I was set to return from Jamaica. Speaking of Jamaica, I started to wonder what kind of mother leaves her child like this to go tend to other children.  My SIL and one of my best friends were huge blessings during this time, both of them saying, "GO," and taking over in my place with the littles.  I knew he would be watched like a hawk, so off I went.

We met with the neurologist; based on everything we told him, an exam, and what he saw in the sleep study, he didn't see any reason to be concerned.  Could've been a loose lead or just a glitch in the original study.  He scheduled an EEG to cover our bases, recommended a screening for Aspergers (which we have been wondering about), and sent us on our way, telling us to not bother with scheduling a follow-up.  Shawn and I high-fived each other on our way out, kissing Children's Hospital goodbye:  Alright!  We know Aspergers, we do not know seizures.  Whew!

Avery was able to sleep through the 30 minute EEG, and even though I was impatient for the results, I didn't feel the need to worry--nothing to worry about, right?  Just a loose lead or a glitch in the original study, right?

We received the results this Wednesday that showed Avery had multiple seizures throughout the test.  I didn't see a thing, not even when the tech was trying to provoke seizures.  This is what frightens us the most:  We don't see them, and we don't hear them.  How are we supposed to fight them, and protect and comfort our child when he has them? It's a very helpless feeling.

The next step is an MRI to make sure Avery's brain is structurally okay, and there isn't anything there that shouldn't be there.  He will also have a 24-48 EEG to see when (and possibly why) the seizures are occurring naturally. Avery will have to be admitted to the hospital in order to be sedated for the MRI, but we are hoping our insurance will allow an in-home EEG company, as opposed to being in the hospital for the long EEG (not only due to ADHD issues, but because we need him in as natural a setting as possible).  From there, it's all given a name and treatment is decided.  I can't even talk about the reasons for the MRI, and I crumple talking about the rest. This looks like a months long, not weeks long, process.

If there is to be any good in this, it is that this will be the missing puzzle piece to Avery's sleep and behavioral problems.  This will hopefully lead us down the path to health for him, and for our family.

Ironically (or not), the satellite building for the hospital is right next to Ezra's former cardiologist, as though God is reminding us how He took care of us then, and that He still has a tight grip on our family.

As always, our hope is in God alone.  I have a lot of mixed up feelings and emotions, I'm scared out of my mind, I'm angry, but I'm human (I'm escaping to my crying closet a lot).  Avery seems to be doing okay, but I don't know he fully understands it.  When we explained ADHD to him, we said his brain works differently, and sometimes kind of misfires, so when we explained seizures, we explained it much in the same way, sometimes his brain is misfiring.  That could be why he isn't afraid.  We do know that when we begged for a child, God answered our prayers with Avery: He put Avery on this earth for a purpose.  God has not, and will not, abandon us.  This will be God's victory, not the enemy's.  As a family, we have seen too much to put our faith anywhere but fully in God.  We are believing in miracles, but know God works in many ways, and always, always, works things for His good.

During this time, we would ask you to please understand that we fully trust Avery's medical team.  They are the ones we need to listen to. We are not asking for advice or stories about others who experience seizures, we are asking for prayer and support.  We are grateful for your understanding, prayers and friendship during this time.
With love,
Amy, Shawn, Noah, Avery and Ezra