Friday, July 18, 2014

The Good and The Bad

We've had some good days. We've had some bad days.

Good news is....Luke hasn't had any noticeable seizure activity since April. Truly grateful for that! And we don't take for granted any seizure free day. We are fully aware of the reality we could be facing in these regards and we thank God for graciously keeping Luke seizure free.

Overall, he is going fairly well.  Luke LOVES summer. He loves being outside, loves walks, loves swinging at the park, loves swimming and any kind of water play. He loves fireworks. He loves listening to birds in the morning. For many reasons, summer is by far his favorite season! So, we've had some happy days recently. 

Last month, Luke's neurologist changed his seizure medication. We are now on medication Number 2. The first one, Keppra, didn't seem to be the right one for Luke. Truthfully, I would have been ok staying on for longer. But when we described Luke's occasional meltdowns/rages, the doctor didn't feel comfortable leaving him on it. Keppra is known to cause significant behavior issues and so the doctor felt like it may just continue to get worse. 

So we weaned off of  Keppra and he is now on carbamazepine (Tegretol).   Sadly, the occasional meltdowns haven't subsided at all. 

I guess meltdown is an ok word. I don't really know what they are called in the medical world. (maybe a special needs parent reader can fill me in!) 
Basically, it goes like this:   
We'll be in the middle of everyday life.....doing anything really....playing at the park, riding in car, at a restaurant, watching TV, on a walk, at the grocery store....just whatever. And all of a sudden, for no apparent reason, an otherwise happy Luke just FALLS.APART.  He starts screaming, crying, kicking and causing all kinds of self harm.....pulls his hair, bites his tongue, scratches his face, seeks out a hard surface and bangs his head repeatedly. It is like nothing I've seen before.  It is so intense.  It doesn't happen everyday, but far more often than we would like. At this point I would say maybe twice a week. 
If we happen to be home when it's rough,  but manageable. If we're out and about when it happens...YIKES! 
There is no talking him out of it. No discipline that can take place. Honestly, I probably wouldn't understand it myself if it weren't for having a child who does this.  It is so bizarre and so intense and so incredibly hard to manage. 

So, say a prayer for me! And for him! When we are out and about, it's usually me with the three kids on my own. And so you can imagine the challenge. Luke has to be restrained (never a fun thing to do) because of the risk of injury. He is strong and seems to have super sonic strength during an episode like this. I'm pretty sure he could just about knock himself out, if he weren't in some way restrained and kept from hurting himself. 

I videoed Luke's most recent meltdown (they last about 20-30 minutes) and will show Luke's neuro at our next appointment. As terrible as they are, I do want to "wait and see" if this side effect will subside with time. This hopping around from one med to the next is so very much NOT what I want to do. It's rough on a little 5 yr old body. 

I hesitated to share in detail all his current struggles. But because there are other special needs parents following (and we all learn soooo much from each others' experiences), I wanted to be sure to give a good picture of what like is like for us right now.

Despite some grumpy times (and an almost total refusal to wear shoes these days!!!) Luke is enjoying his summer.  We are hearing lots of good language, lots of laughing and happy smiles. 

Luke's favorite holiday....July 4th!!

He's doing so good this year on the "kid-kid swing' (his words for big kid swing)  He is fearless and loves to go really high! He'll be our roller coaster lover for sure!

Wednesday, July 16, 2014

Heavenly haircut

So, the boys haven't been thrilled with getting haircuts...well, really...ever!  Even when they were little guys and we took them for their first professional haircut, they didn't enjoy it. Tolerate? Perhaps. Enjoy? Definitely not.

Caleb's first haircut

Luke's first haircut

Since that time, though, Luke has grown to HATE haircuts.  We've traumatized a handful of professionals trying to accomplish the task of getting Luke's hair cut (an event that occurs maybe 3 times a year). God bless 'em. Looking back, we should have tipped them waaay better than we did.

Anyway, we've settled on the fact that Luke's haircuts will just have to be done at home.  Maybe you have a child or have seen a child who dislikes haircuts. Luke is about as extreme as it gets. I'm not sure "hate" is even a strong enough of a word. He falls apart. He screams and thrashes and his hands/arms/legs/feet become weapons against the one trying to cut his hair.

It's a really, REALLY hard thing to do. Rarely do we wake up and say, "Oh, let's give Luke a haircut today." No, it has to like be on the calendar. We prepare emotionally for at least a couple of days. Ha!  I probably sounds ridiculous. Especially for those of you who can waltz into a cute little kids hair salon....plop your kid in a cool helicopter seat, sit back, take pictures and give them them a lollipop at the end.  Haha!! This is SO far from our reality.

We were pleasantly surprised  (read: shocked!!) when we gave Luke a haircut this week. And when I say "we", I mean Andrew.  The guy has superhero powers. He really is the "Luke Whisperer." :)
We still don't know if it was just the right combination of snacks, videos, tone of voice, lighting, air temperature??  The way Andrew was holding the clippers?? Seriously. you begin to take inventory of every.single.detail so you can (hopefully) replicate the experience next time!

In progress....                                                                                   picture break.....

                                                                        .....almost done!

Whatever "it" was, Luke sat in the chair and never cried once!! No tantrum. No tears. Hardly any objection at all.  Almost feels like a miracle!


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