Wednesday, April 22, 2009

Appointments Update - Part Two

As promised, I wanted to fill you all in on our awesome appointment with the eye doc that occurred on April 6th.

First, however, I'd like to request prayers for Elijah's EEG that we are having tomorrow morning. Since Elijah exhibited some behavior during our month of therapy that was a little questionable and seemed like it could have been seizures, we wanted to rule out that possibility.

We're having a sleep-deprived EEG tomorrow morning. Yep, we have the sheer pleasure of keeping Elijah up late and getting him up early. Joy! You see, people are much more likely to have seizures when they're deprived of sleep. In fact, everyone's brain acts differently when we're exhausted (I'm sure I don't have to tell that to most of you…Have you ever experienced that fog when you're really, really tired? Or felt like you were dangerous while driving tired? – Some say it's worse than driving drunk!). So, doing this EEG should give us a notion as to whether Elijah is having seizures when he hasn't had much sleep. I really hope that it can give us some answers and that it'll put our minds at ease. We'd appreciate some prayers sent our way.

We just got Elijah to sleep at about 10:30, poor guy. And we're getting him up at 5:30am. This feels like torture – for all of us. Anyway, on to better things...

The Eye Doc
Elijah's eye appointment was GREAT!

First we met with the assistant (I'm not sure what else to call her…) and she tested Elijah's vision. She showed Elijah black and white stripes and then observed if Elijah looked at them. Apparently last time he didn't look at any of the boards at all – and this time he looked at two of the boards (which get progressively more complex). It was hard to keep Elijah contained during her observations because he wanted to walk, but she got what she needed.

In the waiting room, the ladies behind the front desk were infatuated with how Elijah watched his feet while he walked. They thought it was "so cute". Part of me was sad because watching feet is a result of his proprioceptive issues (he thinks he needs to look at his feet in order to walk – something he is doing progressively less). Sometimes I get so caught up on his disabilities that I don't allow myself to rejoice over those things that make him different. So what if he watches his feet? – It's "so cute"!

Later we met with Dr. Optimist. What an awesome doctor we have for our eye doc! Elijah sat on my lap and the doc observed our little guy. He went over the findings with us – saying that the muscles around Elijah's eyes seemed stronger, that he looked at the boards and that his eye didn't wander as much as it did before. Dr. Optimist was pleased that Elijah looked at his face and gave him eye contact and that Elijah was looking at the doc's tie – Elijah even leaned forward to try to see it better.

What I like about Dr. Optimist is that he is so optimistic. He told us that while he can tell us what Elijah's vision is in terms of a number (Elijah's vision is 20/1400), the parent report is more important. "If a parent comes and tells me that their kid picked a thread up off of the floor, that tells me much more than any test we perform," he said. Wow, I love it when doctors actually pay attention to what parents have to say!

We discussed our past month of therapy and how we believed it helped with Elijah's vision. We also discussed how much Elijah had changed since we had last seen Dr. Optimist. "I don't think Elijah was crawling yet the last time," I said. The doc said that Elijah wasn't crawling and we went on with the evaluation. After a few minutes of Elijah studying the doc and his tie, the little man starting squirming and wanted down, so I let him down to walk. "I didn't know he could walk!" Dr. Optimist said with obvious surprise as he watched Elijah walk around the room.

The doc literally stayed in the room longer than he usually does just watching Elijah in amazement. He had no idea and he was obviously surprised. How fun that was! "Wow, look at him! He's looking at his shadow!" Dr. Optimist, we could tell, was absolutely thrilled about Elijah's progress.

Upon further conversation, the doc told us that he had never seen a child's vision progress as quickly and as much as Elijah's has. (Did you read that? This guy is a pediatric ophthalmologist…that last sentence is significant if you ask me). We thanked him for being positive and for giving us hope. He told us that he sees lots of kids and is always on the positive side, because what's the point of having a negative approach when no one knows what the outcome will be? He mentioned that while he likes to be positive the outcome isn't always so and he was so happy to see how well Elijah was doing. He humbly thanked us for "letting me be a part of this." It was obviously thrilling for him to see Elijah able to walk around the room.

"You know," Dr. Optimist said as we were about to leave, "it's Passover this week and Elijah's the one who brings the cup. When I put Elijah's cup on the table for Passover this week, I'll think of your Elijah." We celebrate Passover too, we told him. As Christians, our celebration takes on a different meaning (celebrating the fact that Christ died for us and therefore our penalty for sin is passed-over) and we had no idea what Dr. Optimist was talking about in reference to Elijah's cup (I googled it later…). But, I thought it was quite significant that our doctor was going to be thinking about our son outside of the clinic setting – and not only that, but he would be thinking about him during a significant religious observance. That's pretty amazing and illustrates the impact Elijah's progress made on the doc. Dr. Optimist really made our day and we left his office beaming with happiness. I think Elijah had the same effect on him that day and I continue to see God's hand at work.

Goodnight everybody.


Anonymous said...

Andy, Lisa & Elijah,
Just reading your latest update gives me chills! Elijah is doing so well! Enjoy the nice weather this spring.
Lora, Scott & kids

Anonymous said...

What an amazing journey your family is going through. Elijah is so cute! Your story, rather Elijah's story, compells me to ask you a few questions.
I go to a women's bible study on Wednesday mornings. There is a woman who had twin girls. The youngest twin was born with CP due to birth complications. She is in the same nursery with my youngest who is 17 months old now. I'm not sure of her age 2-3 years old appoximately. Maybe a little older. Anyway is there an age limit to use the HBOT? Do doctors tell parents of this technique? I would like to share Elijah's story with Stephanie but I want to have a little knowledge before I do so. I see her daughter and it breaks my heart because she just lies there. She a beautiful little girl. Please let me know if it's okay to share Elijah's story with her.
Sincerely, Mary Hamann

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