New Challenges

                                                         Oliver likes his temporary helmet.

We tried potty training. It was an utter disaster. The toilet paper holder was ripped from the drywall by The Incredible Hulk boy, among many other unmentionables that happened over last week. Dealing with human waste is not my strong suit. I would have made a terrible nurse. I gave it my best effort and until the little person is actually physically able, there isn't much one can do. Guess I'll have to eat the 4 gallon bag of gummy bears myself :)

In very sad news, Oliver has developed another type of seizure. I bet you didn't even know there were more kinds...well there are. This one is the most dangerous. It is called an atonic seizure, or otherwise known as a drop-attack seizure. (add hyper link)

Over the past week, we realized that Oliver was going “limp” with some frequency. After he fell twice on Sunday AM, I finally googled “limp and seizure”, and (to my horror) realized he had been having these seizures for the past week. I have no idea how I missed this...

These seizures are so dangerous because they cause children to bust out their teeth, shatter their knee caps, break bones etc... They happen so fast that the child doesn't have a chance to protect themselves.

So Andrew's Father's Day wake up call was “Honey, I think Oliver is having drop-attack seizures.” Sunday was littered with tears, as the reality of yet another type of seizure (3^rd kind) hit us.

Like a freight train.

Part of why it hit us so hard was because Oliver has been doing SO well with his language and speech. Overall things have been going in the right direction with his development, and we were feeling so optimistic about things. So this new development stunned us.

I was on the phone for a long time yesterday with the Boston team. They don't have any explanation for this, and neither do we. It may be due to a growth spurt, but this is part of the mystery of Epilepsy. As of now, the plan is to put him back on Ativan to stop the seizure cycle, and increase Clobazam. We'll see...

We will also be ordering a custom helmet for him to wear if these seizures aren't controlled. I could write a whole post about the emotions I feel about this. Maybe another time I'll go there; just don't tell me it is the same thing as the helmet for Plagiocephaly.

This summer Oliver is attending Easter Seals UCP for summer camp. They are very experienced with chidlren who struggle with seizures. I think it is an excellent fit for his needs! His first half-day was Wednesday and so far, so good!

Last week I started leading a study of the book “A Praying Life” by Paul Miller. It is for ladies only, so if you are in Wilmington and want to check it out, please come! It is a great book on prayer, and this post made me think of this quote from the book:

“Come to Me, all who are weary and heavy-laden, and I will give you rest” (Matthew 11:28 NASB). The criteria for coming to Jesus is weariness. Come overwhelmed with life. Come with your wandering mind. Come messy.

-A Praying Life by Paul Miller

Consider it done, Paul Miller. I've been messy, overwhelmed, off-task and weary. Good thing God is bigger than any diagnosis, and able to handle the heart break of this tired mama.

Here is my prayer: “Father, I do not understand what you are doing or how the suffering of sweet Oliver will work, but it is the exact method you used. Your only son. My only son. Your son suffered. My son suffers. Even though Oliver (clearly) isn't Jesus, I get it. I get it. I trust that you won't waste his suffering or mine.”

UPDATE:

From Andrew: As I was editing this post and we were about to hit “publish”, we have had a scary development. Oliver has had 9 siezures of varying types today even though he is now on Ativan and an increased dose of Clobazam. This is not good. These heavy duty meds are usually able to stop this cycle, but in this case...We consulted with the doctors, and had to make the difficult decision to give Oliver an emergency dose of Diastat. The CNA is here to help monitor him, and as long as Oliver doesn't have any more siezures (or any other complications related to this med) over the next four hours, we will be able to avoid taking him to the ER. We will be watching his breathing closely.  Please keep him in your prayers tonight!