Friday, September 26, 2008

To Go Box Mom

I had a memory tonight…

It’s a beautiful summer afternoon and it’s hot. I’m sitting on a bench, waiting outside of a restaurant to be seated for dinner. Some of my family and friends are with me as well as the baby in my third trimester pregnant belly. The baby and I both want to eat and I’m getting anxious. I can’t wait to drink a cold glass of lemonade.

A toddler soon emerges from the front doors of the restaurant. I’m excited about this because I realize that the more people that leave, the sooner we’ll be able to eat. Additionally, though, I love to watch children and because I will soon have one of my own, I am much more observant of little one’s adventures than I ever have been before.

The child is obviously not a seasoned walker and his mother follows him closely. She is happy and weary from following a curious one year old around all day. I watch the boy as he plays in the small fountain outside of the restaurant. The mother, clutching a To Go Box in her hand, watches as her son splashes in the water. She only intercedes when he is getting a bit too adventurous.

Eventually the boy starts trying to eat the rocks and the mom grabs her son by the hand and they head home.

I sit from my bench and smile. “Soon that’ll be me,” I think. In a few minutes, we’re called inside to eat. I drink my lemonade and forget about the boy in the fountain. But, today, as the memory comes back to me, I can’t help but think the To Go Box mom should be me.

Wednesday, September 24, 2008

HBOT for Brain Injury … Please Contact Your Congressperson

A new HBOT study proposal is being considered by congress for veterans who have suffered brain injury. We would support any research study in this area. More information on the proposal can be found here.

If you would like to support this as well, click on this
link and fill out the information on the right hand side of the screen to contact your representatives.

Tuesday, September 23, 2008

The Ragweed is Dying … and Other Good News

Sometimes I hate the color Yellow
If you have allergies to ragweed, you might have noticed (as I have) that those beautiful yellow flowers that flourish everywhere this time of year are slowly dying. Their vivid color is fading to dull mustard and my blood doesn’t boil as much when I see them painting the ditches on the sides of the road. Know what that means? I’m not feeling so miserable anymore and have been able to go “diving” with Elijah five times now.

The first time was the hardest. I have to admit, I was a little scared to do it. It’s kind of like getting into a large garbage can (okay, a really large garbage can) and knowing that you can’t get out for a least an hour. It’s certainly not an activity to be done by someone who suffers from claustrophobia.

Once you get used to your ears popping for those first few minutes, it’s not so bad, but being in a hyperbaric chamber is definitely not my favorite activity. An hour is a long time to try to hold onto a squirmy baby who loves to jump and doesn’t like to sit still. If we’re lucky, Elijah will take a nap, which makes the time in the tube much easier. Overall, I’m feeling really grateful to Andy for doing the majority of the dives so far and I’m also thankful that I am now able to do it.

Over half-way there
The time is starting to go by fast. We have now completed 27 dives and I have so many mixed feelings about it. Is it or is it not working? I really think it is doing something. It’s not the miracle I couldn’t help but hope for, but it is making a difference. The other week I was playing patty-cake with Elijah and I could get him to do the “roll it” part without feeling like I was going to tear off his arms. That’s when I said to myself, “Yep, this has been worth it and it’s making a difference.” His tone is looser, he’s using the left side of his body more, he seems much more aware and interactive, and he’s making more noises.

The other day on the way home from church, Elijah was really hamming it up. He was laughing and making all sorts of squealing noises. It was so fun to watch him as he’d surprise himself and get this look on his face like, “Um, was that me who made that noise?” It’s so cute.

Any More crawling?
Our little stinker hasn’t crawled since that night I wrote the rooster update. I knew that would happen. I thought to myself, “I’ll write this and then he won’t do it again for a really long time.” I hate it when I am right about such things.

Elijah is so close to doing it, though. He loves to be on his hands and knees and gets into that position by himself often and does so easily. It’s obviously no longer a matter of if he will crawl, but rather when. Any day now I expect to be chasing him all over. Oh, how I dream about that moment when he’s able to move from room to room on his hands and knees; it’s so exciting! He’s taken those first steps; he just needs to do so more often. Either way, he continues to gain strength doing baby push-ups and bouncing.

A New Skill
This past Friday night, Elijah was able to get himself into the sitting position by himself…twice! And, in typical Elijah fashion, he hasn’t done it since. Again, it’s only a matter of time until he does these things easily on a daily basis. I hope I never forget how hard he has worked to get here. It has been months of therapy to get him to do these things. Compared to a “typical” child, this may seem like a long time. In reality, though, it’s amazing how far Elijah has come in such a short amount of time.

Dr. Nice Guy’s Report
We received a report this week from Dr. Nice Guy. It was three pages long, but I thought I’d share this paragraph with you all…

“Elijah was seen and examined today by Dr. [Nice Guy]. He discussed the definition of cerebral palsy. Elijah appears to be doing quite well given his diagnosis. He is a very happy baby and [is] making some nice motor and other functional gains.”

I thought that paragraph summed up our appointment with Dr. Nice Guy well. This is the closest the medical profession can get to calling Elijah a miracle. We’ll take it.

~I hope this finds you all well. :) Love from the three of us~

Friday, September 12, 2008

The Rooster Made Him Do It

This evening we had dinner with some friends. Our dinner hostess, Fran, was showing Elijah some of the toys she keeps at her house for her grandchildren. Elijah was tired and I didn’t think that he would be interested. While he does like toys, he often just ignores them. Tonight, however, Elijah was really paying attention to the toys and was even laughing at them. It’s so great to hear that laugh. And the laughs were so appropriate...the toys were silly and he knew that they were funny.

There was one toy in particular that Elijah really loved. It was a rooster that has a light in his mouth. If you push on his tail, he clucks, his mouth opens and the light turns on. Elijah thought he was hilarious. It was so fun to see his reaction.

Elijah wanted to be on his hands and knees while we were showing him the toys. He’s been doing really great in this position lately and really enjoys himself. He likes to bounce and rock and he was having so much fun watching the rooster and bouncing. And then the most amazing thing happened. He took a few crawling “steps”, moved forward just a bit, and then fell over. It was just a little bit, but he used both his arms and his legs in a crawling motion. .

Fran looked at me and said, “He just crawled!”

I didn’t really believe my eyes at first and until she said something, I thought my eyes were deceiving me. “I know!” I replied.

Fran looked at me and said, “I think I’m going to cry!”

I felt like I was floating from happiness “Me too!” I said, as the tears started to gather in my eyes. I’ve been waiting for this moment for (almost) thirteen months.

I started to shout for Andy and soon all of the dinner guests were gathered around the amazing little man. We propped him up again, but of course he wouldn’t do it for us again. He doesn’t perform on demand. I’m sure I’ll still have to wait awhile until he’s crawling all over the house, but he is getting there!!! I just had to share the great news. It was the rooster that made him do it. He thought that toy was hilarious. I can’t wait until I’m chasing him around the house. I really cannot wait.

Thursday, September 11, 2008

Long-Winded Hodgepodge...HBOT, Dr. Nice Guy, CP, and Medical Degrees

**Possibly the longest journal entry yet...may cause drowsy feelings to overcome you. You were warned**

Elijah is doing so well! I get reminded over and over again how much God has intervened in our little guy’s life. Children, who have been through what Elijah has been through, simply don’t do what Elijah is doing. There is no explanation for his progress, other than answered prayers.

Is it making a Difference?
Here we are, a little over one-forth of the way through HBOT and Elijah continues to make progress. Is it the HBOT? No one knows at this point. The important thing is that he keeps changing every week. We don’t care who gets the credit as long as he’s making changes.

But, do we think it has made a difference? The short answer is yes. My instincts say that the HBOT is helping. The changes are slow, but they’re there. Basically, we feel like we have the same Elijah, we just have more of him. I don’t know how to describe it, other than his eyes seem brighter, he’s more engaging, and he’s more apt to look at me. Is it a miraculous difference? No, but we’re still early in the process. Elijah has had twelve treatments at this point. What will he be like after twenty, thirty and forty treatments? I hope at some point I’ll be able to say definitively that I’m sure the HBOT has helped. At this point, I can’t say that, but that mommy gut instinct must mean something.

Dr. Nice Guy
Yesterday we took Elijah to a pediatric rehabilitation medicine doctor (also known as a Physiatrist). This is the doctor who was referred to us from our neurologist, Dr. Gloom. A physiatrist prescribes adaptive equipment for people to help them function within disability. It was a really great appointment and we left it feeling relieved and happy.

For those of you unaware, I like to nickname our doctors. I never write our docs real names in this journal, so I give them nicknames instead. We have our neurologist Dr. Gloom, our pediatrician Dr. Positive, and now we have our physiatrist Dr. Nice Guy. Come to think of it, I’ve never nicknamed our neurosurgeon, plastic surgeon or opthamologist. Maybe they’ll get that honor sometime in the future. :)

Based on his nickname, you’ve probably all derived that we liked the guy. He was, well, a nice guy. J I suppose I was expecting him to have that same sappy, sweet bedside manner as Dr. Gloom (since he was the one who referred us), but that wasn’t the case whatsoever. It seemed to us, that the doctors and nurses we talked to yesterday all acknowledged the amazing progress Elijah has made. They said, without saying so, that they don’t see kids like Elijah. Isn’t that amazing?!

What were some of the highlights of this doctor visit?

-They checked Elijah’s hips via an x-ray to make sure that the socket is developing correctly, and his hips are fine at this point. Dr. Nice Guy did say that his legs are straighter than they should be because of his developmental delay. In other words, because he isn’t crawling or walking yet, his legs haven’t changed like they typically would have, but he wasn’t concerned about it and it shouldn’t affect Elijah’s functionality. .

-Dr. Nice Guy didn’t think that Elijah needs any adaptive equipment at this point. That’s definitely a good thing. We asked about hand splints and so Dr. Nice Guy gave us a prescription for splints to keep Elijah’s thumbs out. He thought that Elijah might benefit from equipment in the future, but at this point he seemed pleased with how Elijah is using his body. He also used the phrase, “When he’s walking, he may benefit from some foot braces, but not now. It’d only impede his jumping.” Did you catch that? “When...”, not if...

-Dr. Nice Guy’s associate actually asked us if it were possible if Elijah had had “just a stroke” instead of brain injury due to oxygen deprivation. She said, “Stroke you can recover from.” In other words, he’s doing too well for what happened to him. They can’t really explain why he’s doing so well. I couldn’t help but rejoice a little bit. She basically told us that she was impressed with what Elijah can do.

- We mentioned to Dr. Nice Guy that we had heard many kids with brain injury have problems with irritability. He said, “You’re right, I do see a lot of kids with irritability problems” and then proceeded to laugh and smile at a laughing and smiling Elijah. We also mentioned that our new PT (not the one through Early Intervention, but one through a private clinic) told us that Elijah jumps so much because of his tight tone. Dr. Nice Guy looked at me a little crooked and said, “Hmm, I don’t see any CP kids jumping like he does.” Obviously his jumping is a good thing. Elijah certainly has really strong legs and they seemed so pleased that he’s so good at weight bearing.

I first heard the term cerebral palsy attributed to Elijah when he was still in the NICU. Dr. Gloom told us that the MRI showed extensive brain damage and that they didn’t know what that meant for his future. One of the things he mentioned was that Elijah might have cerebral palsy. At the time, I was devastated, crushed. I felt like my world was crashing around me. Now, I know CP doesn’t mean much of anything.

I had learned in my on-line support groups that kids typically don’t get a CP diagnosis until they are two. Have we thought that Elijah has CP? Yes, we have, but it’s no longer world crushing to us. In fact, to me, it doesn’t really mean much of anything. The beauty of a CP diagnosis is that we might be able to get more services for Elijah, so in some ways getting a diagnosis is a positive thing.
Last month, at Elijah’s one year check-up with Dr. Positive, we asked the doc about CP and when (or if) Elijah would be getting the diagnosis. Dr. Positive, when asked about CP, pointed to the garbage can and said, “CP is that kind of a diagnosis.” In other words, it’s a junk term. Then he went on to say, “I think we’d all agree that he has it.” We basically left his office knowing that if we wanted a diagnosis, we could have one.

Fast forward to yesterday, Dr. Nice Guy asked us if anyone had talked to us about cerebral palsy before. We told him about our discussion with Dr. Positive the month before. Then Dr. Nice Guy explained to us what cerebral palsy is and also mentioned that it’s an umbrella term. He explained that CP is non-progressive, is caused by a change in the brain early in development, and shows itself in abnormality in movement and/or posture.

So, to make a long story even longer, Elijah now has an official CP diagnosis. This diagnosis may come as a surprise to some of you, but don’t let it change how you think or feel about Elijah. It shouldn’t change anything. It’s amazing how calm we are about getting this label attributed to our son. Like I said before, it doesn’t really mean anything. It’s a label. Just as an MRI can’t determine what our son will be like, a CP diagnosis doesn’t really tell us anything other than something happened to his brain early in life. We already knew that. If it helps get him services or helps people understand what happened to our little guy, then by all means, use the label. In some ways, it’s easier to say CP rather than brain injury. People are more comfortable with labels it seems.

Do you guys have Medical Degrees?
Through this experience in becoming parents, Andy and I have been to a lot of doctor appointments. At most of these appointments, when we first meet a new doctor, Andy gets asked the question, “What is your background? Do you have a medical degree?” It’s really funny.
Sometimes I get the pleasure of being lumped in as well. “Do you two have medical backgrounds?” This has happened at least five times, if not more. I have a smart hubby and more importantly he’s an awesome daddy. :)

I know, I know, it’s a long post. I was just so excited about our appointment with Dr. Nice Guy yesterday that I had to post all the details about it. Yes, we got a CP diagnosis yesterday, but it didn’t make us sad. What made us so happy was to see the happiness and amazement in the faces of these people who are some of the smartest people in the field. Prayers, therapy, HBOT, positive’s all working. Of course, we give the glory to God. Without Him, our boy wouldn’t be here. Thanks again for sticking with us on this journey (and for reading Elijah’s mommy’s long-winded updates). We don’t know what we’d do without you all. :)

Thursday, September 4, 2008

Six treatments down, Thirty-four to go...

Our adventure with HBOT is going smoothly so far. The only snag is that my allergies have been horrendous so I’ve been unable to be the one to “dive” with Elijah. Andy has done all of them so far by doing a treatment before and after work. It’s not ideal, but it has been working out.

It really is hard to tell if the treatments are working yet. Elijah does seem to be a little different to us. Of course, the skeptics would say that’s just his normal development... perhaps it is. Regardless of who or what gets credit, Elijah continues to make progress.

One thing Elijah started to do before we started treatment was to get onto his hands and knees by himself more consistently. Now, he seems to be moving constantly. He’s not crawling yet, but he’s getting closer. Today, he would roll and then get on his hands and knees and rock, roll again and then get on his hands and knees and rock again. Hmm, I guess he’s a rock n’ roll star! He is famous after all. :)

So, what if anything, would we contribute to the HBOT? Well, it seems to me that he is in the here and now more often than more. He is more apt to look at us without prompting. We also feel like he is looser in his shoulders and is able to move more freely. Most people don’t really see changes until later, so we’re hoping that sometime during this process we’ll be able to say that, “Yep, this is definitely a result of the HBOT.” We’re trying really hard to remain objective and not attribute things to the HBOT when it doesn’t deserve the credit, but I really feel in my gut that Elijah’s responsiveness has improved because of the therapy. Time will tell.

Check out the link to Elijah’s Photobucket in the next few days. There are new pictures in the ten and eleven month albums and I’ll be uploading new stuff soon. Hope you are all doing well. Thanks for thinking of us and for keeping us in your prayers. God is the one who created oxygen and He is the one who can use it to heal Elijah.

P.S. To answer the question in our guestbook...HBOT can be pronounced either H-BOT or H-B-O-T. I tend to say H-B-O-T, but I’ve noticed that a lot of people say H-BOT. So, I guess whatever strikes your fancy. :)

Tuesday, September 2, 2008

We've Started HBOT!

Hi Everyone!

Today we started HBOT and things are going well. We’re so excited to get this started and we hope that it does great things for our little Elijah. Elijah did fairly well and we have a feeling that this is going to work for him. It seems like he was a little more alert already. Of course, it’s too early to tell, but we have high hopes that God is going to make this work.

We’ll try to keep you all posted on his progress. Please keep us in your prayers.

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