He Can't Tell Me

At times, a blind rage overtakes our boy. He screams and he cries and he bites his hand until it's red. Welts and scabs form from his continual abuse. I hold his hands and urge him to calm down. But his anger is in control now. He arches backwards to hit his head on his highchair because he can no longer bite his hands and mine are out of reach. He must get the anger out.

"What do you want?" I ask. But he doesn't answer. He can't tell me. And he doesn't know why I can't understand.

My insides grow cold and I want to cry, but I've used up all of my tears and have none to spare. I'm dead inside at this moment, my eyes drifting out the window so that I can pretend that I'm somewhere else. Anywhere, but here in this moment, watching my child hurt himself.

I try to understand, solve the puzzle of his anger. "This isn't what you wanted for lunch?" I ask. And yet, I know how he feels. I want to punch holes in the walls and slam my head against the table. The rage visits me too. Because he can't tell me. And I can't understand.

***

I wrote this this afternoon after a really difficult lunch with Elijah. Tonight, I went to a local event featuring a speech pathologist named Teri Kaminski-Peterson, author of The Big Book of Exclamations. She said some things I've heard before, gave me some new ideas, and most of all, reminded me that there's no such thing as false hope. There's just hope.

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Things that Give me Hope

It's been busy here in Elijahland! We took a trip to Ohio recently to attend Elijah's tenth wedding. Yes, you read that right – tenth wedding and he's only two! I love weddings (Congrats Mitch and Dana!) Elijah's favorite part of our trip? Getting to swim in the hotel's pool (see pictures)...

Little man has had appointments almost every day since we've been back, sometimes two in the same day. And we've been preparing ourselves for my favorite time of year – the Fall Holy Days. Did I mention we're BUSY?!

Last week, we had two doctor appointments I wanted to write about: the gastrointestinal doctor and his optometrist.

Dr. Tummy
Early last week, we took Elijah to a GI doc; let's call him Dr. Tummy. J

Elijah likes doctors. He hardly noticed the nurse when she was talking to us, but when Dr. Tummy entered the room, Elijah's eyes lit up and he walked over to the doc. He stood right next to the doctor with his hands on the doc's leg while Dr. Tummy spoke with us. I asked the doctor to tell me if having Elijah standing there touching him bothered him. He was in the middle of telling me that it was okay, when Elijah leaned over and bit him! "Okay, back to mom!" Dr. Tummy said. Elijah has never done that before and I didn't really know what to do. We apologized of course and the doc seemed un-phased, although he didn't want Elijah anywhere near him after that. What's a mom or dad to do?! The only thing I can think of is that Elijah was trying to get the doctor's attention because Dr. Tummy was ignoring him. Who knows, but I think we have trouble on our hands.

Dr. Tummy went over Elijah's Esophageal Reflux Study (the one we did in correlation with his sleep study a couple months ago). Elijah, during the study, refluxed 15% of the time (it's normal to reflux up to 4%). For seemingly, the millionth time, Andy was asked if he had a medical background! Hilarious…apparently if you know things about your child's condition, you must be a doctor - right?

Reflux in children with neurological issues is really common since the brain has to communicate with the body in order for the body to work properly. So, it seems, Elijah's brain isn't telling his body to process his food fast enough, so it comes back up. That combined with the fact that he doesn't have the best posture (partially because of his vision) cause reflux to occur.

Just as we thought, there really isn't a good solution to reflux. Drugs or surgery are basically the options the medical community suggests. Neither seem like a good option if you ask me, but doing nothing isn't a good option either (reflux, if untreated for a long period of time, can damage the esophagus and can lead to a greater risk for cancer). Drugs reduce the acid in your body and acid is important to carry things throughout your body – and specifically important for brain-building nutrients to absorb into his system. Since Elijah already has issues with his brain, that doesn't sound so great either. And surgery, do I even need to say why that's not so great? We've tried some natural methods, which haven't seemed to help, and his diet is already so limited I'm not sure we could really change it. It definitely feels like a catch-22 kind of situation.

So, this Monday (tomorrow) we'll be doing an upper-GI study to check and make sure there isn't anything structurally wrong that is causing Elijah to spit-up. Once we get the results, we'll have to make some sort of decision as to how to proceed. (Some prayers for a calm boy tomorrow would be much appreciated. Drinking barium and being strapped into a seat doesn't sound fun).

The good news? I asked if Elijah could grow out of the reflux and Dr. Tummy said that he could. He mentioned that it's perfectly normal for kids to spit-up until the age of 18-months. Since Elijah is behind developmentally, hopefully his brain will get better at communicating with his body and the reflux will eventually be a thing of the past. It's definitely something that gives me hope.

Dr. Optimist
Late last week, we saw Elijah's Optometrist. Elijah's eye doc holds fast to his nickname…he's so optimistic and I love that. We weren't supposed to see the eye doc until November, but Elijah has been spontaneously covering his right eye for over a month and it was causing us some concern. Thankfully, Dr. Optimist isn't worried about the fact that Elijah will cover his eye. He doesn't do it all the time and while his eye does cross, it's minor and the doc thinks it will only improve over time.

The reason the doctor is optimistic is that Elijah's vision does continue to improve. So much so that the doc thinks that at some point Elijah may not even need glasses! (This, unfortunately, doesn't necessarily mean that he'd no longer have cortical visual impairment...which is a completely different issue. But, that can change too, and it has). Based on their tests, Elijah got a new prescription for his glasses – which is half as strong as it used to be! We should get his brand new glasses this week and I'm really excited to see what kind of difference the new prescription could make in his development. Exciting stuff and something that definitively gives me hope.

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