Tuesday, October 28, 2008

It’s Been a Busy Day (and Other Understatements)

Our appointment with Dr. Gloom
This morning we saw Elijah’s neurologist. It’s no secret that our neurologist isn’t my favorite person in the world. He’s not that bad really, but for some reason Dr. Gloom tends to have a hard time being positive.

We all know Elijah is doing fantastically well and all Dr. Gloom can say is, “He’s made some nice gains since I’ve seen him.” I personally consider that the understatement of the century. Dr. Gloom doesn’t have much to be gloomy about anymore; but the way he talks to us is like we’re at someone’s funeral…like he’s sad for us. I’m not sad about having Elijah in our lives by any means and I certainly don’t need his pity.

Digging for Positivity
Today, I wanted to dig some positivity out of Dr. Gloom. We’ve been told time and again that Elijah’s life doesn’t really match his medial records. So I asked Dr. Gloom, “Do you ever see kids like Elijah?” He replied, “Unfortunately, yes.” (Seriously, did he really say that to us? It is comments like those that drive me crazy and make him deserve the nickname Dr. Gloom. Obviously we know he sees kids with brain injury so to say that was just insulting.) I had to elaborate my question. “No, do you see kids with as much damage as he has doing this well?” He paused a bit. “Yes, I’ve seen a few kids that at his age were doing better than he is.” (He didn’t elaborate how much damage those kids had, however). I picked Elijah up from the floor because he was rolling around and almost getting himself into trouble. Dr. Gloom continued, “On the spectrum of kids, he’s definitely on the high end.” Aha! Did you catch it? Positivity! I’m sure I’ll never drag out of him that Elijah is a miracle, but we’ll take it.

More Positives
You want more positivity? Dr. Gloom measured Elijah’s head and his circumference is now at 42 cm, which is a fantastic amount of growth. Dr. Gloom said that it was the most amount of growth we could have hoped for during the time frame. It is the amount of growth you’d typically expect from a child his age. Of course, that doesn’t mean that his head size is within the range for “normal,” but it’s great news that his head seems to be growing at a rate that would be expected for a child his age. He also didn’t say a word about Elijah’s tone, which I’m taking as good news.

The End of the Appointment
At the end of our appointment, after we all agreed that Elijah was doing well, Andy told Dr. Gloom about HBOT. Before we tried HBOT, Dr. Gloom told us that he didn’t advise us to try it since there was no scientific evidence supporting the use of HBOT for kids like Elijah. Well, we obviously tried it despite his advice and we’re glad we did. His response? “Oh, you did…” We could tell by his tone of voice he didn’t really approve. He said, “Well, the jury’s still out.” It was pretty obvious that he didn’t put much credence on the therapy, but he did say that we’re being scientific about it. That’d be because Andy is seriously almost an expert on HBOT at this point. Andy gave Dr. Gloom an article from late 2007 from a science journal which stated that studies are showing kids with CP are seeing benefits from HBOT, but more studies need to be done. The conclusion of the article was that in the meantime, parents need to be given access to this therapy. What Dr. Gloom doesn’t understand is that we just don’t have the time to wait until the jury comes back with their verdict… Now is the time we need to help our son.

Since we went against his wishes, I think that Dr. Gloom is starting to like us just as much as we like him. Doctors typically don’t like it when you go against their advice. At our past few appointments, Dr. Gloom told us, “You guys are great.” He’d say it because we were being so positive. He didn’t say it today, so I guess we’re not all that great anymore. Ha! J
Overall, it was a good appointment. Dr. Gloom still wants to follow Elijah, but he doesn’t think we need to see him for another year (unless of course we need to see him sooner). I can’t explain how happy I am to not have to visit him for an entire year.

Visiting Elijah’s Nurse
After our appointment, we decided to visit the children’s hospital where Elijah spent his first three weeks of life (since it’s so close to the neurology clinic). We visited with one of the nurses that cared for Elijah when he was in the ICC. I was so pleased; this is the third time we’ve stopped and the first time we were able to see anyone. This nurse was so nice to us and I’m sure she remembered the three of us. She was such a comfort to me when Elijah was in the hospital, often acting as a therapist to me as well as a nurse to Elijah. Today she kept saying, “He’s doing so well.” I think she was really happy to see him, telling us, “You’ve made my day. Oh, he’s doing so well.” She remembered, too, how bad things looked back then and was pleased to see how much progress he has made. It was so nice to see her. She is a wonderful person.

As we were leaving, a nurse pulled a isolette down the hallway, right past us. In the isolette laid a baby who reminded me so much of Elijah when he was in the hospital. The baby looked big and healthy and gorgeous. If he were in his crib at home, you’d think, “Oh, what a beautiful, peaceful, sleeping baby.” The child’s parents were helplessly clutching the isolette as it wheeled past. The pain in their eyes was so apparent I felt like I could touch it. And for a moment, I was back in time, reliving the darkest days of my life. I wanted to grab them and hug them. I wanted to show them Elijah and say, “It’s going to get better! Look at my boy! This will be you a year from now. You won’t feel this pain forever and it’s going to be okay.” But, I couldn’t. I don’t know if going to be okay and I have no idea what kind of trials they’ve had to overcome. After seeing them, I was so glad that I could leave that building with my wonderful boy riding on my hip. Oh, how I am so grateful to be out of the hospital and I was reminded that I need to pray for the parents who are still there. Each moment there are parents sitting in that hospital, worried that their child won’t see tomorrow. I don’t want to forget about them in my prayers.

This Afternoon
This afternoon, we saw a social worker to see if there is any help or waiting lists we can get on for Elijah. Then later we saw our wonderful OT and we were so excited to show her Elijah’s new walking skills. She, of course, was very pleased. He is doing so well! I have to be careful when I let him walk, because he will literally throw a full-blown temper tantrum when I make him stop because his mommy’s back is hurting. Seriously, it’s awesome.

That reminds me, Elijah was cruising all over Dr. Gloom’s waiting room. I had a lady say, “Oh, he must keep you busy!” and the receptionist said, “Wow, look at him go!” I told her that he just started walking yesterday and she was like, “What?! He’s only been doing that since yesterday?!” She was surprised because he was practically running around the room holding onto my fingers; I was just trying to keep up. It was great to feel like a typical mom, having strangers see how amazing my boy is. God is definitely great!!!

Um, I think it’d be an understatement to say it’s been a long day. But, it’s been great.Lots of love, Lisa and her boys :)

P.S. I’ve posted the first video we have of Elijah’s walking. It’s in the main page of his
Photobucket site. I know, I know…I need to go to bed. Obviously, since it’s past midnight, these are all of yesterday’s (Monday’s) escapades. Goodnight!


Murzelmom said...

Lisa, you know what?

My "typical" girl started walking at 14 months old just like your wonderful Elijah!!! :D

You know another thing?

She was not among the first kids to walk among their peers. But: Now she's ahead of most of them in motor (and some other) skills.

So, you know what I conclude from that?

Elijah is developing slower, but that doesn't mean he can't develop fully in the end - just as you have been hoping from day one on!

Love from Britta

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