Better Day

Today Oliver only had three seizures, two of which lasted only 20 seconds. This is great news. I would have rather him have zero, but it is a significant improvement from yesterday. We avoided the ER last night, and hopefully have stopped the crazy seizure cycle from yesterday. We aren't out of the woods (that rarely happens with Epilepsy), but he is much more stable. I am planning on attending my conference in Orlando tomorrow and I will be gone for four (!) days. Prayers for Andrew and the team of caretakers (Judy, Kristen, Kara, Maegan) helping with Oliver would be greatly appreciated. Oliver truly has been raised by our village of people, and we are constantly thankful!

I posted this on Facebook, but for those of you not on there we are considering which helmet to order for Oliver. I am thinking a hard shell with face guard. It looks the most dramatic, but it provides the most protection. Any personal experiences with these would be great to hear about. Feel free to email me privately at stephanielanier@gmail.com if you have any suggestions.

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Finally, an ode to someone worthy of honor:

Dear Jan Paolini, RN:
You are outstanding; really you are! I honestly sleep better knowing we have you in our lives to help with Oliver's care. Your expert knowledge (you are a seizure info ninja!) and patient guidance are absolutely priceless. Walking me through how to give Oliver Diastat the first time was an incredible kindness that I won't forget. 

I'm pretty sure that Jan and I talked/left messages no less than 15 times over the last three days. If you've been around the "medically fragile" block then you know how unusual this is! At the Herscot Center they truly treat their patients like family.

Jan, may God bless you for the good work you do every single day. We love you and appreciate you!

Good Morning...so far

We made it through the night without an ER visit. I just read Andrew's update from last night and Oliver actually had over 12 seizure events yesterday before we gave the Diastat. So far this AM no seizures and he is bright eyed and very energetic. Thank you for your prayers and concern.

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!

A Sensory Seeker's Playground

Not surprisingly the beach brings out Oliver's intensity. It pushes his sensory seeking issues into 

overdrive. 

His compulsion to eat sand and run full force into the ocean is a continual concern. 

Last year we took him to the beach less than 10 times. It was 

just

too 

much. 

But this is a new summer and this mama is back with some new expectations...

Beach Expectations 2012

Expect Oliver to try and eat sand. Pray he doesn't throw up (yes that has happened). Move on and stay positive even if he eats a few handfuls here or there! 

Expect shrieks of joy and smiles a mile wide at the edge of the ocean. Expect full body belly flop into the sand. Expect giggles of delight. 

Expect Oliver to try to run full force into the ocean at least five times each visit. Say "hold hands in the ocean" over and over. Keep modeling. Keep smiling. Stay strong. Hoping that at the end of the summer, he'll be just a tiny bit more aware of being with an adult while near the ocean. 

Expect to climb the lifeguard stand as many times as possible. 

Expect to freeze in place and stand in awe every time the rescue team four-wheeler races by. 

Expect Oliver to run up to strangers and stick his hand in their drink or rummage through their bag. Try to run defense on this maneuver and smile lots and lots as you approach. Turn on the southern charm maybe even make a few new friends. 

Expect rocket-speed running when a seagull appears. Listen with delight when the word "bird" comes (unprompted!) from Oliver's mouth. 

Finally, 

this year we are 

embracing that about all we can change in this environment is our 

attitudes 

and 

expectations. 

And that is a lesson for everything in life, not just the beach!