Thursday, April 30, 2009

EEG Results

We were told it would only take a couple of days to get the results to Elijah's EEG, but it took a week! (We got the results late last week after a few phone calls from Andy). It seems the doc was thorough, though, and compared this EEG to the one that was taken when Elijah was just two months old (and still on the anti-seizure med, Phenobarbital).

Good news, Elijah does not show any seizure activity. Andy was the one who talked to our neurologist and he thought the doctor actually seemed a bit surprised on how "normal" parts of the EEG looked.

The only strange thing he mentioned was that Elijah has "extra electrical activity" on the back right side of his brain when he is sleepy and asleep. It's not seizures and there isn't anything we should do about it, but it's something they see when a person is more susceptible to seizures. With Elijah's seizures shortly after birth and the massive injury to his brain, he'll probably always be at a high risk for developing seizures. We just need to do what we've always done - watch Elijah closely. The neurologist didn't seem concerned about it, but thought it was worth mentioning.

The test did reassure us that Elijah isn't having any seizures, though. Our doc mentioned that the brain waves of kids who have infantile spasms look different than Elijah's brain waves. He reassured us that what we saw in March was most likely not seizure activity. Phew.

All in all, I think the test put our minds at ease a bit and we can go back to watching Elijah like hawks and um, relaxing (wait, what's that?)...

Wednesday, April 29, 2009

Jumping for Joy

The following is a video of Elijah jumping in his crib (taken a few weeks ago- shortly after we got home from our month of therapy). We were pretty excited to see him holding on to the edge of the crib by himself. Now we see him doing this all the time... He'll wake up and we'll hear springs bouncing. It's kind of hilarious.

video
Seeing Elijah standing (and jumping!!!) in his crib is pretty exciting. That might seem strange, since he's been walking for a few months now and pulling to stand is technically a step backwards. But, Elijah skipped the pulling to stand/walking along furniture stage and it's nice to see him using his hands more often. This was something he definitely wasn't doing before the therapy in March.

Thursday, April 23, 2009

What an EEG looks like…

This morning we had Elijah's EEG and it went well.

Elijah was able to fall asleep while lying on my lap and he woke up without doing anything suspicious. I was half hoping that Elijah would do some startles while waking up. Of course, we certainly don't want Elijah to do any odd behavior, but catching suspicious behavior during an EEG would be the only way to know for sure if they are or are not seizures. Either way, I guess they can tell based on his brain waves if anything strange is happening during the waking up cycle. We should get a call within a few days (we expect to hear something early next week) after our doc reviews the EEG and the video taken during the test. We really don't anticipate any bad news and hopefully, this test will put our minds at ease that Elijah hasn't had any seizures since those first few days after birth.
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We did ask the lady who performed the EEG if she could tell us anything and she said she couldn't. One thing she did say was that Elijah will always have an abnormal EEG. His abnormal is normal. "What does that mean?" I asked. She compared it to if you got hurt anywhere, you may heal, but you'll have scar tissue and your body won't be exactly the same as it was before. So, I guess Elijah's brain waves have the equivalent of scars and wouldn't look the same as most people's brain waves.

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.

The EEG
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.

Tuesday, April 14, 2009

Twenty Months

Elijah is twenty months old today. Can you believe it? I certainly can't. (I know, I say that every month!)



















Yes, those are scrapes and bruises on the cute little guy's face. It seems he always has some sort of bruise or scrape these days. This time he fell walking up the neighbors driveway and scraped his face and nose. He cried for a moment and then wanted to be put down so that he could walk some more. Such a goofball.
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Our little man is developing such a little personality. He's always had his own personality, but it's shining through more. I love it.
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Tonight Elijah and daddy were playing leap frog. It was hilarious. I love that it seems Elijah is trying to imitate his dad. Well, see for yourself…

Happy Twenty Months little man. You're growing up too fast!

Appointments Update

I thought I'd be able to relax a little once we got home. Au contraire my friend, it's been non-stop ever since we got back. So what have we been up to?... Well, appointments mostly.

Physiatrist
The day after we got home, Elijah saw his Physiatrist, Dr. Nice Guy (for those of you new to my blog, I like to nickname our doctors.). He, of course, was pleased to see all the new things Elijah is doing. I don't think Dr. Nice Guy remembered that he told us he didn't think Elijah would be walking by the time this appointment rolled around. I was nice and I didn't bring it up either. J The main thing we wanted to talk to Dr. Nice Guy about was the foot orthotics called SureStep. He told us that he really didn't think that Elijah needed the braces. His reasoning? Since Elijah hasn't been walking very long, the doc wanted to give him more of a chance to grow and develop before putting Elijah in braces. "I think he'll improve with or without braces," he said. Since Elijah has only been walking a short time, he thought that walking on uneven surfaces would improve the strength in his feet. We pushed back, showed him the pictures our PT in Madison had taken, and he still wasn't convinced. He thought it would be best to wait a bit and reevaluate within a few months. "He's made some wonderful progress," he said – and seemed to think that Elijah will continue progressing without braces.

The appointment left us pretty confused. I respect and trust our PT and our physiatrist and we were getting conflicting views. I knew that our PT said that as far as kids go who need braces, Elijah hardly needs them. Then again, they're supposed to help with proprioception (which is an awareness of ones own body) and would perhaps help Elijah not stomp so much when he walks. I guess I tend to err on the side of not bracing myself, unless absolutely necessary. On the other hand, we certainly don't want to deprive him of something that he needs or that could help him. This whole Surestep debate is certainly not over yet…

Shriners Hospital
On Thursday we went to Shriners Hospital and – waited – for an hour and a half before we were seen by anyone. I was actually amazed at how well Elijah handled the wait (the pic is from the waiting room). One of the nurses told us that in her eleven years working there, she'd never heard of anyone waiting that long and we reminded ourselves that while nothing is free, Shriners operates at no cost to us. Anyway, after the wait, we were able to meet with a team of specialists and I think that the appointment was worthwhile. Their OT gave me some specialized bowls and a spoon that would make it easier for Elijah to feed himself. We also asked for a third opinion on the Surestep and they agreed with Dr. Nice Guy…they thought Elijah was young and that walking would strengthen his feet. Their opinion was to wait on braces until he was walking for a longer period of time (so the Surestep debate continues).

Speech Evaluation
Elijah had a speech evaluation at the end of the week we got back. I was pleased to have someone finally say that they thought Elijah needed speech therapy. So far, we'd been told that Elijah wouldn't get or need speech therapy until he was two. It was frustrating to say the least. Anyway, after seeing such fantastic improvements in Elijah during his month of therapy (which included an hour of speech therapy every day) we were anxious to find someone to work with Elijah.

I know I asked the right questions this time around, but I shouldn't have to ask the right questions. Isn't that the therapist's expertise? Shouldn't a speech therapist notice that he constantly drools, doesn't have any words, and doesn't have any expressive language really? Shouldn't that warrant regular therapy? The last therapist was a really nice lady and I liked her. But, she told me that she didn't need to see Elijah for three to four months. What? I don't get it. After seeing what a month of therapy can do for our little guy, I'm sold on the effectiveness of regular therapy. Do these people know how much I ache to hear my little boy's voice? Anyway, I digress. This therapist agreed that Elijah would benefit from therapy and I'm happy to say that he'll be getting speech two days a week starting at the end of this month. So, it seems my life just got a little crazier, but I definitely think it's worth it.

OT & PT
We've met with both Elijah's clinic and school therapists. It's good to be back and nice to get back into a routine. I think that they're all happy to see how well Elijah is doing.

I have more to say, specifically about Elijah's eye appointment, but I'll save it for another post. This one is getting lengthy already. It's been busy around here, with no sign that things will slow down anytime soon, but boy, is it good to be home. J

Saturday, April 11, 2009

Day Twenty – The Final Day of Therapy

Hello everyone.  Sorry we've dropped off the face of the blogosphere planet; it's been very busy around Elijahland since we've been home.  

I wrote the following post on the last day of therapy - Tuesday, March 31st, 2009.  I didn't get a chance to post it before we left for our drive home and I'm just posting it right now.  Anyway, without further ado, here is our day twenty post...  

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It is Elijah's last day of intensive therapy and HBOT! Yay balloons for our last day!
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I have to say, I think that I'm going to be a teeny bit sad to go home. It's been nice to have so many people working with Elijah for hours each and every day. Mostly, though, I'm thrilled to think that tonight I'll be sleeping in my own bed. That sometime in the near future Elijah and I will have a day where we won't have anywhere to go or anything to do. I'm looking forward to spending a day in our house and our yard with nothing on the schedule but to play – to be a "stay-at-home" mom and a "stay-at-home" son. I know that those days, even at home, are few and far between and I fully intend to enjoy them.
Day Twenty - 3-31-09 Day Twenty - 3-31-09 
Today, Elijah was really tired again. He did sleep through the night last night and I keep hoping that'll become a regular occurrence. The nice thing about a sleepy Elijah is that he kept trying to cuddle with me during therapy. He walks over to me, sucking on his hand, and then just collapses on me to snuggle. I was lying on the floor when he decided to climb on my back - anything to get out of the last day of therapy!
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Elijah learned how to bite a vibrating teether today. When he bites it, the teether vibrates. Andrea, his speech therapist, said that it takes some kids months to figure that out. Elijah figured it out within a matter of minutes. Way to go, Elijah!
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Here is Elijah with Andrea.  She taught Elijah (and me) so much. Thanks Andrea! 
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As of today, we've completed 80 dives, 40 this month and 40 last September. Elijah is in the chamber for his last dive as I write this. We got to say goodbye to everyone today.  Here is Elijah with some of his therapists...
  Day Twenty - 3-31-09
This is Elijah and his new friend Brecken (with daddy and Brecken's Grandma). 
Day Twenty -
Isn't Brecken a cutie? Brecken's family read about Elijah in the paper and he's currently undergoing HBOT treatments - all because they read Elijah's story in the paper.  Isn't that awesome? Elijah and Brecken were in the same hospital at the same time and are less than two weeks apart in age.  I'm sure the family wouldn't mind prayers for the HBOT therapy to help Brecken on his road to recovery, I think that they've seen some changes already.

As you read this, we're probably on our way home (or already there!). Thanks for sending us so many prayers this month. Elijah is doing great!

Wednesday, April 1, 2009

Home!

I woke up to this in my backyard. Yes, it's April 1st and that's snow, but it's really pretty, isn't it? Besides, as of this afternoon, most of it was gone. That's what's great about spring snowstorms, they only last a short time. If it snows again this month, I might get annoyed.Elijah remembered his precious piano.It's really good to be home. We got home late last night. I'm going to go sleep in my own bed now. Goodnight everybody. (I know I still need to write a day twenty update and we saw Elijah's Physiatrist today, but that'll have to wait until another day...)
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