Friday, October 31, 2008

Therapies for Cerebral Palsy Website

Hi everyone,

Andy created a new website to document the treatments we’re trying for Elijah. The address is: If you’re interested in reading more about the research he’s done, this would be the place to find out more. There is also a link under the links portion of our page, so you can find it whenever you’d like.

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!

Monday, October 27, 2008

Blessings and Changes

I feel blessed. Perhaps this is because our boy is possibly the sweetest little guy in the universe and he continues to make improvements on a seemingly daily basis.

We have so many reasons to be thankful. For months, we’ve worked with Elijah to teach him some of the things that he is doing now. To be honest, I was getting tired. To me, it seemed those efforts would never pay off. But they have! He effortlessly gets himself into the sitting position on a daily basis and is constantly rolling on the floor, getting himself into the crawling position and rocking. I no longer question if he will crawl, I simply wonder when it will happen. I’ve stopped wondering if he will walk either (more about walking later).

Where does that leave me? With overwhelming peace and joy. I can’t describe to you the amount of weight that lifts from us. I can breathe again and I can relax a bit. I feel so happy these days. Mostly I’m happy because Elijah is such a sweetheart. Here is a child who has had to work harder than most of his peers to get where he is and yet he’s such a happy guy. He doesn’t know the hardships he has overcome, nor does he realize that he has more work to do. All he knows is that he loves his life and he loves his parents. We are so blessed!

Leaving Elijah-land
Lest you think I’m some sort of saint, let me tell you…I certainly have my days. If I can seclude myself into Elijah-land, I am perhaps the happiest person in the world. What is there to be sad about? Elijah is happy, improving, and oh so cute.

But sometimes we have to leave Elijah-land and that’s when it gets hard. I see children much younger than Elijah effortlessly crawling around, walking around, and putting things in their mouths (oh, I try so hard not to notice). And, let’s face it, I get angry. I’m not angry that those kids are doing those things, but seeing how easy it is for other kids reminds me how hard it has been for Elijah. And as his mom, I get angry. Angry that he’s had to be in therapy his whole life. Angry that we “had” to spend a month away from home to try HBOT and now our schedules are all topsy-turvy. Angry that things haven’t worked out as I’d planned or hoped. Angry that things might always be harder for him. Angry because it shouldn’t have happened to him in the first place.

Then, I figuratively slap myself on the face and I get on with my life. I remind myself how much I have learned through all of this. I look at the faces of the parents of those children with their effortless lives and I realize that they will never quite understand the joy I will feel when I see Elijah pick something up for the first time. Or walk for the first time. I realize that I’m the one who is truly blessed. I’ve been able to watch every moment of my child’s development and I’ve been able to help facilitate it. I’ve met some pretty incredible people that wouldn’t have been in my life. I have a new vocabulary that I didn’t have before. I know about therapies and doctors that most people have never heard of. I am blessed all right. Sometimes you have to leave Elijah-land to find out.

Blessings in the Form of Changes
Changes are certainly happening with Elijah. First of all, he seems to actually understand some words now. I’m sure he knows the words “more” and “all done” and I think that he knows the word “no” (although, with his lack of fine motor skills we don’t often say it). I can’t tell you how great this is. For the longest time I was wondering how I was going to parent a child who couldn’t understand the word “no.” It’s another area that I’ve been able to take a sigh of relief. Things are really looking up.

Case in point about Elijah’s responsiveness and understanding…A few weeks back, Andy told Elijah to “look at mommy.” It took him a bit, but he turned and looked at me. Then, one morning last week, Andy told Elijah to “look at daddy.” Again, it took him a bit, but Elijah turned and looked at his daddy. Then Andy went on Elijah’s other side and told Elijah to look at him. And Elijah looked once again. Andy kept switching sides and telling Elijah to look at him and Elijah kept doing it. This is just one example of his responsiveness and it’s really exciting to see him interact with us more.

A big part of interaction, of course, is speech. And, again, I’m getting anxious for things to start happening. Not too long ago, I was talking to our OT about how I was aching so much to hear Elijah talk. She reassured me that speech is the finest of fine motor skills and it would come later. Well, it certainly seems like after I talk to our OT about things that they start to happen. The other week, we were telling Elijah to say mama. He strung some things together, but he said it! I was so excited and yet so reluctant to even write about it since it seems he’ll do something like that and then won’t do it for ages.

And then tonight, Elijah copied me again! I was so glad Andy was in the room because I might not have believed my ears. I was reading him a goodnight story and on one page there was a cow. I told Elijah that a cow says “moo.” I kept saying it over and over again while he batted at the book’s picture. Then clear as day, he said moo! I can’t tell you how excited I am about this. Changes are definitely occurring.

EI Meeting
Last week we had our early intervention team meeting. It was nice to see some of Elijah’s therapists that we haven’t seen for awhile and Elijah has definitely made some nice changes. His PT was pleased to see all the things he is doing…getting himself into sitting and four point (crawling stance) by himself. She said, “He’s a miracle. He really is.” Yep, I have to agree. Another comment that stuck out to me was something our Vision Consultant said. When we talked about Elijah’s trip to the eye doc and mentioned that Elijah saw at about an eight month level, she told us that you can’t see more than you are cognitively. In other words, Elijah has to be at least eight months old developmentally, which is actually what we were thinking…that’s he at about an eight month level. The way we look at it, in some areas Elijah is much younger than he is, in others he’s at about eight months and in other areas he’s his own age of 14 months. I don’t know if it’s a good way to look at it, but it seems to help us to look at it in those terms.

Speaking of being his own age, Elijah seems to be taking to a behavior that would be pretty typical for a child his age…temper tantrums. He hates getting in his car seat, despises getting his diaper changed and doesn’t like it if he has to sit too long in his high chair without getting fed (and by too long, I mean about 30 seconds). Yep, our boy is giving us a run for our money and we couldn’t be happier. Anything typical is fantastic.

Temper Tantrums
Elijah’s newest temper tantrum has to do with being set on the ground. You see, he doesn’t want to sit on the floor any more, he wants to walk! This is actually a new development just today. Just in the last week he’s been taking more steps when we hold onto his hands. In the past, he would mostly do what we’d call “jumpy walking” and he’d just drag his feet a lot while I’d basically pull him along the floor. Today, he couldn’t get enough of walking around the house. It’s so exciting! He’s doing much better holding onto our fingers too. And when my back starts to hurt from being bent over doing laps around the house, I pick him up and he throws temper tantrums because he doesn’t want to stop walking! It’s wonderful. Who knew I’d love a good temper tantrum? This kid wants to move!

Thanks for reading. I know it’s another long post. I don’t seem to have as much time to write these days and when I do sit down to write, I have so much to report! Thank you so much for continuing to follow Elijah’s progress. He is indeed a miracle, which is a big result of all the prayers. Keep us in your prayers tomorrow morning as we’ll be seeing his neurologist, “Dr. Gloom” Much love, from us.

Tuesday, October 14, 2008

Acronyms in Elijah-land

It’s been crazy busy in Elijah-land, but I wanted to fill you in on Elijah’s appointments from this past Wednesday. It was a busy day, which seems to be a snapshot of our life lately.

In the morning, we met with a doctor of osteopathy (otherwise known as a D.O.). If you’re anything like me, you’ve probably never heard of an osteopath before.

So what is an osteopath? Osteopaths have the same amount of schooling as M.D.s and have the same rights in hospitals, but D.O.s specialize in a person’s skeletal structure and take more of a whole body approach. We took Elijah to a D.O. to hopefully help with the shape of his head.

Many D.O.s don’t practice cranial manipulation, so it’s important to find the right one. This is the second D.O. we’ve met. The first was really nice, but she called herself a “bad D.O.” because she didn’t often apply osteopathy with her patients and had no experience with cranial manipulation. She thought osteopathy would help Elijah and encouraged us to find a D.O., but unfortunately didn’t know anyone who could help us. Fortunately, we got a reference elsewhere for an osteopath who did have experience with children (thanks Libby!).

We feel comfortable with the D.O. we met on Wednesday. He has worked with children and one of his specialties is cranial manipulation, which is what we wanted for Elijah.

Hmm, it seems that our D.O. deserves a nickname…Since he was wearing loafers, we’ve decided to call him Dr. Loafer. I think loafers represent the more laid back approach of osteopathy, keeping the whole body in mind. I have to credit Andy for this nickname, since I didn’t notice the loafers. :)

What did Dr. Loafer do during this first appointment? He explained osteopathy and got Elijah’s story from us (which is something we’re used to recounting whenever we visit a new specialist). He manipulated Elijah’s skeleton, which was really interesting. He started with the bottom of Elijah’s spine and ended the session working on Elijah’s head. It was hard to get Elijah to sit still, but he faired well.

It’s a very gentle approach and almost seemed a bit like a massage. Dr. Loafer compared the manipulation to working on a stuck drawer. If you pull on a stuck drawer hard, you won’t get anywhere and will only make the drawer worse. But, if you know the correct place to push and are gentle about it, you can easily get a drawer unstuck. We thought this was an effective analogy.

One exciting thing Dr. Loafer said was that sometimes osteopathy can help with head growth. That is so exciting! Of course, he can’t promise us anything, but I think either way, this therapy will only help him. After his manipulation, Dr. Loafer told us that Elijah has tightness on the top front of his skull (where his ridge is) and the back of his skull is also tight. The thought is that that tightness is pushing down and could be restricting his head growth.

It’s so interesting to me how D.O.s can be trained to feel the fascia on the skull, can move things around to facilitate growth and to help to prevent the skull from fusing prematurely, and to help make sure the cerebral spinal fluid is flowing correctly. It’s another one of those things I don’t completely understand, but I think that it makes sense. I’m just amazed that he can feel all those things. When I touch Elijah’s head, all I feel is a head. We’ll be seeing this doc once every two weeks for awhile, so it’s looking like this busy lifestyle won’t be slowing down anytime soon.

OT and PT
In the afternoon, we met with an occupational therapist and a physical therapist. We’ve had therapy through Early Intervention with the school district since Elijah got home from the hospital, but we are starting additional therapy as well. This way, he’ll be getting therapy two times a week and will get more ideas on how to help his development. We’re really trying to make the most of the HBOT by getting him as much therapy now as possible.

First, we met with an OT. She’s the one who will get a splint for Elijah’s hand (based on the prescription we gave her from Dr. Nice Guy). She’s going to try to work on things that we’re not working on with our Early Intervention OT.

Next, we met with a physical therapist. Shortly before we left for our HBOT adventure, we had an evaluation performed at this clinic by a different physical therapist. She wrote up a report, which had goals for Elijah and a summary of where he was at that time (they put him in the first percent for his age…meaning that 99 percent of kids his age were doing more than he is in gross motor skills).

Immediately Elijah showed off his new skills for this new PT. She laid him down on his back and Elijah immediately rolled over onto his belly and got himself on his hands and knees and proceeded to rock back and forth. Then he moved himself to sitting by himself. The PT was shocked. The boy in front of her was doing so much more than the report said he could. She kept saying, “You’re making more work for me! I’m going to have to re-write all of your goals!” She also said, “Hey, you don’t need me! You’re going to just walk right out of here.” And, “Look at that trunk rotation.” Trunk rotation…one of those things I wouldn’t have paid any attention to if things had gone as they typically do, but now I am amazed at the way he can twist his body.

Later, the PT put Elijah in a walker (a rehabilitation kind, not one you can buy in a store) and Elijah took a few steps…all by himself! The PT who had performed the initial evaluation was in the same room with us working with another child. She walked by and seemed amazed. She said, “Wow, he is doing so well.”

The new PT confided in us that Elijah was doing way better than she expected based on that initial evaluation. She said, “Not to minimize Elijah’s situation, but I thought he was going to be way worse off than he is.” That’s our boy, always proving reports wrong and doing more than anyone would ever expect. It sounds to us that they didn’t expect Elijah to do any of those things for several months.

All in All
Overall, I feel excited about these new things we’re adding to Elijah’s schedule. I know that he will only continue to improve, which is all that really matters. Hope you are all well. Happy Feast of Tabernacles!

Tuesday, October 7, 2008

Good to Be Back

We’re home!
I’m sure some of you are wondering, “Home from where?” For those of you who don’t know, we spent the last month staying with Elijah’s Uncle Dan and Aunt Darlene in Wisconsin. We didn’t think that it would be wise to announce on the internet that we were living elsewhere (to try out HBOT) since that would be like announcing to the world, “Hey, no one is at our house.” Perhaps, we were being overly cautious (as the likelihood of some crazy person finding this website and figuring out where we live is probably slim), but now that we’re home I feel more comfortable talking about our little adventure away from home.

Elijah did such a good job being away from home for so long and having treatments two times a day. He seems to be so easily adjustable to new situations, which makes our lives a lot easier (seeing that we have to take him so many places!). We had a wonderful time with Elijah’s aunt and uncle, who so graciously let us live with them for the month. I have to admit we were a bit spoiled (with yummy dinners and good conversations) and had a great time, but we are happy to be back home again.

Yesterday Elijah did not want to take his nap. While that isn’t exactly a new occurrence, he seemed unusually fussy, so I thought I’d check his mouth for new teeth. What did I find, but new sharpness poking through his gums! He’s getting his first molar and he has hardly made a peep. Somehow I still get excited when I find a new tooth in that beautiful mouth of his and I’m even happier when they come through easy as this one has.

Sleeping Beauty…or Sleep is Beautiful
Last night Elijah slept through the night for the first time since…well, I can’t remember the last time he did that. He has been becoming a good sleeper and I’m so pleased. He takes two naps in the day, one of which usually lasts over an hour. This is much better than in the past, when I’d spend a half hour to try to get him sleep and he’d only sleep for a half hour. I had read a few books on sleep, but nothing seemed to help.

He started to take better naps while we were in Wisconsin. I’ve heard that HBOT can help with sleep, so perhaps that is what did it. Or, maybe he’s just developing. There’s no way to know either way. All I know is that I like sleep! I hope that the sleeping through the night becomes a new normal for us. That would be wonderful. Either way, Elijah has been only getting up in the night once. In the past, he’d need to be nursed back to sleep. These days, though, he just wants a snuggle and we happily oblige. I remind myself that he’s not going to be this little forever. He’s already getting so big!

Dr. Optimist
Let’s see…we’ve got Dr. Gloom, Dr. Positive, Dr. Nice Guy and now…introducing our optometrist, Dr. Optimist. It seems fitting, as it sounds similar to optometrist, right?

We saw Dr. Optimist yesterday and Elijah is doing well. He reaffirmed what we have already noticed...that Elijah’s eye sight has improved. He said that Elijah’s sight is what he would expect from an eight-month-old. At fourteen months old, that may seem like a bad thing, but we don’t really see it that way. Elijah continues to make progress and we’re so pleased about that. Dr. Optimist mentioned that he noticed Elijah’s eye is turning in less and that he could easily focus on the doctor. It was fun to watch Elijah look at the doctor, smile at him, laugh, and make noises. He’s so much more interactive than he used to be.

As for Elijah’s glasses, we’re supposed to have him wear them whenever we think that they may help. Dr. Optimist suggested that we put them on Elijah when he seems to be really trying to concentrate on things. At this point, it’s really up to us how much (or if) he should wear them. The thought is that perhaps they might help with his development, but as his brain heals and develops, the more his sight will improve. I’m making a mental pact with myself to have him wear them more, but we won’t beat ourselves up over trying to have him wear them all the time. For the most part, we don’t really see that they make much of a difference for Elijah and I’d personally rather his brain learn how to see without glasses.

Our OT
We’ve missed our OT over this past month and we finally got to see her today. Of course, she noticed all of the changes that have occurred with Elijah. One thing she said was that the tone in his arms is much looser. We all wonder if this is a result of HBOT. Since he is spending so much more time on his hands and knees, he is strengthening his arms and shoulders…which would make his tone better. So the question is, which is it?

Honestly, we don’t really care who gets the credit, whether it’s HBOT or development. Either way, Elijah is changing. We do think, however, that HBOT has helped. Yes, Elijah has always made progress, but it seems to me that he made even more progress this past month. Our OT is great. Right now I’m feeling really blessed. We’re starting to collect doctors who have nicknames that make me smile and we have a great team with Early Intervention with our OT as the front runner. Elijah is doing so well and he’s changing. It’s good to be back. Thanks to all of you who have sustained us with your prayers for the last month.

Thursday, October 2, 2008

One to Go!

Tomorrow morning we will complete our 40th HBOT dive. It feels good to have these treatments under our belt. I’m sure you’re all wondering about the million dollar question…”Has it made a difference?”

Elijah has always made progress, so it’s hard to quantify what is “just” his development and what is a result of HBOT. He isn’t regaining abilities, but rather learning things for the first time. For that reason, it’s hard to know what he would or would not be doing without HBOT. Regardless of who or what gets the credit, though, Elijah is doing really well.

I know I haven’t really answered that expensive question… Yes, I think it has made a difference. I’m excited to see what people who haven’t seen Elijah (since we’ve started treatment) will say about his progress. It’s sometimes difficult for us to be objective or to see things clearly because we’re so close the situation. I believe that trying HBOT has definitely been worth the time (and money). We’ll never ask the question, “What if we had tried it?”

We are all doing well and I hope this finds you all the same.

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