Tuesday, December 30, 2008

The Drowning Gymnast

I can’t help but feel like I am drowning at times. It’s like the laundry, the dishes, my overflowing email inbox, the therapy and doctor appointments, and the uncertainty about the future are all going to suffocate me at once. Sometimes I’m so overwhelmed and feel like I can’t handle it all.

I’m like an Olympic gymnast, balancing on the beam between crazy optimism and trying to be realistic. Most of the time, I’m able to keep my balance. But, sometimes all of those things suffocating me cause me to fall to the ground.

If I land on the side of optimism, life seems good – often better than it really is. I seclude myself in Elijahland, thinking that everything’s going to be all right. Elijah will be just like his peers when he grows up, I tell myself. No one will even know what happened to him during his birth. I pretend that nothing is wrong; ignoring those emotions I’d rather not touch. I’m secluded, in my own world with my boys.

Then I find that I’ve fallen off my beam again and those emotions I tried to avoid have smacked me in the face. This time I’m on the side of reality and I ponder what my son’s life may entail. I wonder if he still won’t be talking or feeding himself when he’s 5, 10 or 15. What if…what if…what if…? It’s not a pretty place to be. I wonder how I’ll handle him when he’s older. What if he can’t understand me or communicate with us? How will we handle it all?

I know that we all feel overwhelmed at times, whether or not we have a “special needs” child. I’ve had this overwhelmed feeling before and it always subsides eventually. As I write this, I no longer have that drowning feeling. I’ve reminded myself to take it one day at a time, to not worry about my house (it’ll be here to clean tomorrow), people will forgive me for unanswered emails or phone calls (the ones that love me anyway), and to give the future up to God. I can ponder all I want, but only God knows what the future holds. There’s that scripture that says don’t worry about tomorrow. I know that God will take care of us and when I remember that, I realize that there is no reason to feel like I am drowning.

So, here I am, trying to stay on my balance beam. I’m apt to fall again, but hopefully I can be quick to get back on the beam. Being realistic about Elijah’s future (realizing that he’s going to have ongoing difficulties in his life) while remaining optimistic for him (not setting any limits as to what and who he can be) is exactly where I want to be. I’m not drowning, I’m swimming. I just wish it felt less like treading water sometimes.

***As a side note, it’s really hard for me to open myself up like this. I share because I do realize that we all have these feelings at times. For some reason, it’s difficult to share the negative feelings. I share because I want to be honest and real. Dealing with Elijah’s diagnoses is an ongoing process. Sometimes I’m completely okay with it. I remember how far he has come and I’m so thankful. And then other days I have to admit that I’m frustrated. My son’s life isn’t how I expected it to be or dreamed that it might be. Grief is an ongoing process, but sometimes it’s hard to share the journey. ***

Saturday, December 27, 2008

I Didn’t Know…

I didn’t know how much joy watching Elijah crawl would bring me. I could speculate, but I just couldn’t imagine it. He cruises around exploring his world as if he’d been doing it his entire life. He’s learning to touch the walls and feel and learn about the world around him. It’s amazing.

It makes me recall something I saw on TV when Elijah was still quite small. I was flipping through the channels and I stopped momentarily on a reality show. I’m not even sure what the show was and I honestly only watched it for a few moments. The show featured a baby and I watched with amazement at how easily she moved, gracefully shifting herself from the floor to a sitting position with ease and then taking a few crawling steps.

“Oh,” the mom said. “She’s never done that before.” I sat there in front of my TV in shock. Is that how parents react to their child’s first crawling steps? I wondered. No accolades? No excitement?

I couldn’t watch it any longer and so I turned the channel. At that point, I didn’t know if my son would ever crawl and I was disgusted by the nonchalant attitude. Isn’t it a miracle when any child learns a new skill –especially when it’s something as profound as crawling?

As I watch Elijah, I’m filled with amazement over the things he can do and I try to ignore the things he cannot. I’ve already become accustomed to some of the things he can do – sitting, transitioning…and I see myself having the same reaction as the mom on that TV show I saw long ago. “Oh, yep…he has gotten himself to sitting again.” I’m still amazed at his crawling skills, but at some point I suppose I’ll look at him and think, “Oh, there he goes again” with a nonchalant attitude. But, I don’t want to forget. I don’t want to forget all he has accomplished and the things he has overcome. I don’t want to forget that my son might have never gagged, cried, sat, or crawled. I don’t want to forget the parents who are still waiting for those things. I don’t want to forget and I hope I never do.

Friday, December 19, 2008

Famous Boy – Elijah is Featured in Another Newspaper Article!

Today Elijah was featured in the Leader Telegram, a newspaper published close to our hometown. We’re so excited that Elijah is getting the exposure and that people will be hearing more about HBOT through his story. We are convinced (and it seems so are his therapists) that HBOT has helped Elijah. Simply too many things have changed since he received the therapy. If you’d like to read the news story, click here.
September 2nd
This is the photo they used in the article, Eliah in the HBOT chamber with daddy

I’m starting to get excited about the next round of HBOT as I’m looking forward to see what other changes may occur. What I ache for the most is improvement in his speech (i.e. any speech at all) and I wonder if perhaps that will be the next thing to come. He’s been using his voice more, experimenting with it. He likes to babble once in awhile, which is so exciting. After dinner he often says, “Gah-gah-gah-gah-gug” I think he’s trying to say, “Thanks for the grub, mom.” :)
Both articles about Elijah were very well-written. We feel very grateful and very blessed that he’s been in two newspaper articles in just one week! How thrilling! I don’t even know how to begin to express my gratitude to everyone who has prayed for and taken a vested interest in our little man. God’s involvement in Elijah’s life is undeniable. Since I don’t think I can ever say it enough: Thanks for everything. His “Elijah fans” are indispensible.
December 11th
This is a recent photo of Elijah in his walker and me (aka his mommy)

Thursday, December 18, 2008


I love words…well, most of the time.

I don’t watch TV all that often anymore and it seems whenever I do someone says something that gets my blood boiling. I’m thinking of one word in particular (I hear someone say it almost every time I watch a movie or turn on the TV)…

It’s seriously hard for me to say the word and since writing is also my voice, it’s honestly hard for me to even type it...You’ve all heard it a million times before. Some of you get just as angry as me when you hear it. Some of you probably use it on a regular basis, not quite understanding the pain it inflicts on parts of our society. Some of you don’t even know that it’s offensive. Have you guessed it yet?

It’s the “r-word.” Some of you are probably still thinking, “What r-word?”

Retard. There, I said it. I hate that word. Yes, I know that hate is a strong word. If there was something stronger, I’d use that. I abhor, despise, and detest that word. There, I think those words are strong enough.

Fortunately, I grew up in a household where the r-word was not allowed. To me and many others, the r-word is a swear word. I was taught that the r-word should never be uttered in reference to anyone or anything. I was taught it was hurtful. Am I perfect in my speech? Absolutely not (but more on my shortcomings later…).

Some of you may think I am overreacting, that I’m a policeman for the politically correct. (Um, I just called myself a “policeman” and that didn’t bother me). Some of you are saying, “What’s the harm?” or “It’s just a word, and besides it sounds funny.”

I’m not going to start trying to have words outlawed. I’m simply pleading with anyone who reads this to be extremely careful about the words you use. Do you know their history and where they come from? Are you inadvertently hurting someone with your speech? The r-word has an extensive history behind it and is never used in a positive manner. People with cognitive disabilities have been discriminated against – even killed – for simply being alive. Don’t get me started on the newest form of discrimination – abortion of those who might have a disability. When you call your friend a retard because they did something stupid, you’re disrespecting each and every person who has an intellectual disability.

In the past, I would have thought nothing of the words “pinhead”, “spaz”, or “spastic”…now those words stab me in my heart because I realize that those words are making fun of my son’s diagnoses. Sticks and stones may break bones, but the childhood rhyme isn’t quite accurate…words do hurt. We can ignore them, yes, but they still sting.

My Shortcomings
I’m not perfect and I know that I’ve said things I wish I hadn’t. I’m ashamed to say, I’ve even said things since Elijah was born!

Case in point…I remember almost saying the word “spaz” a few months back in reference to myself. I was about to say it when I thought, “Wait a minute…Spaz sounds an awful lot like spastic…maybe I ought to look into that.” Sure enough, a short internet search later and I discovered that Spaz was short for spastic. The tightness in Elijah’s muscles as a result of his spasticity is something he has to deal with on a daily basis. How can I describe myself in those terms and make light of his situation (and the situation of many others)?

More recently, I’ve found myself saying something else. As you all know, Elijah has developed temper tantrums. The words “he had a fit” have come out of my mouth in reference to his temper tantrums. When I’ve said it, I didn’t feel right. Another internet search and I found that indeed “having a fit” is another way of saying that someone had a seizure. It’s insulting and insensitive to make light of something as serious as a seizure. Elijah had seizures for two days straight and there are many families out there who have to deal with terrifying life-robbing “fits” each and every day.

I’m not sharing my shortcomings so that you can judge me. I’m sharing because I know that often we say things, not understanding the full implications and hurt behind them. I’ve done it too and no one is perfect. But when there are words that make fun of real medical conditions or disabilities and you use those words to describe yourself or your friends in a derogatory manner, it’s offensive.

I’m simply asking that anyone reading this will try to eliminate the r-word (and any other offensive words) from their vocabulary. It’s not funny to make fun of people with cognitive disabilities…and if that word comes out of your mouth that is exactly what you are doing…regardless of your intentions or who you are saying it to. I wouldn’t have intended to hurt anyone by saying “spaz” or “having a fit”, but that doesn’t change the fact that it is offensive.

I think it’s time we show some compassion for one another. Please pledge to not use the r-word and take the time to eliminate hurtful speech from your vocabulary.

I’ll try not to trip on the way down from my soapbox…Thanks for listening.

Sunday, December 14, 2008

Our Sixteen-Month-Old is Famous

Our little man is officially sixteen months old! And at just sixteen months, Elijah has made his newspaper debut in the Dunn County News, a newspaper from our hometown. (If you want to get technical, this would actually be the second time he’s been in the paper - as we also announced his birth).

It was pretty exciting to see the little guy’s picture and story in the newspaper. If you’re interested, you can read the story here. We feel quite grateful that they wrote this article about Elijah and included his life story in our hometown paper. [I did want to make one clarification to the story. It said that Elijah can say, “mama” and “dada” and unfortunately he is not able to say those two wonderful words yet. Believe me, if he were, I’d be shouting the news from the rooftop! While Elijah did say “mama” once, he has not said it since. I have to believe that someday we won’t be able to get him to shut-up…I smile just thinking of it!].

If you read the article, you may have noticed that Elijah now has a benefit fund…

A Benefit Fund
We recently set up a Benefit Fund for Elijah to help offset the cost of therapy. We are tentatively planning to do another round of HBOT for Elijah in March, possibly coupled with intensive OT, PT and Speech Therapy. HBOT isn’t covered by insurance and only part of the OT and PT would be. As Elijah’s parents, we want to do as much for Elijah as we possibly can while he is still so young and his brain is still forming. So, we are starting the process of asking for donations and thinking of fundraiser ideas. If you have any thoughts or would like to help out, please let us know. We’ve also created a flier to ask for donations, which you can see
here. If you’re willing, please disperse this flier as you see fit (i.e. put it on bulletin boards, etc). If you have nothing to give but prayers, that’s the most important gift of all. Please ask for success in our fundraising efforts.

Enough announcements - this is what happened in Elijahland last week…

Clinic-Based Therapy
Elijah’s PT was laughing about the fact that she practically had to chase Elijah around the room in the walker this week. “I’m going to have to take a nap after this Elijah!” she said in her loud, enthusiastic voice. And when we were leaving her for the day, his PT said something to the effect of, “He’s doing great!” and “He’s amazing!” I’d certainly have to agree with her. :)
Elijah is never as cooperative working with his OT as he is with his PT. Since he works with his OT immediately after his PT, he’s probably a bit tired from already working so hard. But, part of the issue is that he’s so focused on his gross motor skills (i.e. crawling and walking) that he doesn’t care much about anything else.

I was really excited by something his OT said this week. She mentioned that she thinks cognitively, Elijah is beyond the things we’re trying to teach him. He gets bored, he gets frustrated, and he decides that he’d rather do something else, namely jumping or walking. That’s really exciting as it’s says great things about his developing brain.

School-Based Therapy
Our lovely school OT encouraged me to get Elijah age-appropriate toys. Again, that’s so exciting! I have to remind myself to never underestimate Elijah.

Dr. Nice Guy
We also saw our Physiatrist, Dr. Nice Guy, for a follow-up appointment last week. He seemed pleased with Elijah’s progress and didn’t have anything to recommend other than to “keep doing what we’re doing.” Hmm, sometimes I wonder why we even visit doctors in the first place. Still, it’s nice to have uneventful appointments.

The Crawling Wonder
Finally, to end this extremely long journal entry…Imagine this…I take Elijah into our bedroom and set him on the floor so I can get dressed. He immediately starts fussing, bouncing up and down and has a mini temper tantrum. So, the next thing I know, he takes off crawling towards the door. Even though I haven’t been able to get dressed yet, I start to laugh. “Where are you going Elijah?” I ask. For some reason he doesn’t answer :) and keeps on crawling, takes a left and crawls down the hallway. He makes it to the top of the stairs, after being distracted by the power outlet. (I, of course, monitor him the entire time to make sure he doesn’t take a tumble down the stairs or electrocute himself). For those of you who are unfamiliar with our house, that’d be a good 15 foot crawl – woohoo! He keeps improving. He is our little crawling wonder, our newspaper star, our sixteen month little boy (where’d our baby go?!), our favorite snuggle bug. And yep, we sure do love him. I hope you’ve enjoyed my "novel"…

Wednesday, December 3, 2008

Elijah is an Explorer…

…and I’m his tour guide! He has improved so much in his crawling skills already…in just one day. He’s all over the place and I love it. He actually crawled over to his toy bin today and took some things out! I’m so proud, happy, and speechless…okay, maybe not speechless. :) The point is, we’ve been waiting for this for a really long time and now here it is. It’s kind of hard to believe and so thrilling. It hasn’t come easy, nor has it come naturally, but here he is…doing it! You know how I always say that “he’ll get there”? Well, in terms of crawling, He Got There!

I’ve been on cloud nine today, teary-eyed from happiness, and feeling so happy to watch Elijah move and play. This afternoon Elijah’s Early Intervention OT was here and she got teary-eyed too when Elijah showed off his new skill (I didn’t tell her he could do it, so it was a surprise). Needless to say, Elijah’s OT and teacher were very pleased with him today.

I can’t help but think back to the moment when we were told that Elijah had “severe brain damage.” We grieved and wondered what our little guy’s future would hold. If only I could have seen a glimpse of what he would be like today…I think I would’ve felt all right. All I know is…I’m never going to let anyone tell me that Elijah won’t be able to do something. Nor will I hold him back. He’s amazing, he’s a miracle, and who knows what the future holds.

If you weren’t convinced Elijah was crawling by yesterday’s videos, check out today's crawling video below.
There s no denying it…our boy can move! Thanks, thanks, thanks for all the prayers!

Tuesday, December 2, 2008

Yay! Woohoo! I See Baby-Proofing in our Future

Elijah is crawling! I think I can safely say that Elijah has officially started to crawl today. When something really interests him, he takes a few crawling steps, falls, gets up and takes a few more. It’s so exciting!

He did it for me this morning in pursuit of his switch toy, did it for his therapist today, and then did even more for daddy after work tonight. The more he practices, the better he’ll get at it.

Yay! Our little guy is mobile! Hallelujah!

Monday, December 1, 2008


Second Thanksgiving Already?
Elijah had a fantastic second Thanksgiving. This year he actually got to eat some of the food. Let’s see, Elijah doesn’t like cranberries or stuffing or turkey or…hmm, he didn’t really like any of it. I’m not sure if it was because he was tired, but he just didn’t want to eat any of the Thanksgiving food. Later, for supper, we gave him pureed leftovers of potatoes and turkey. I thought he’d like it since he likes potatoes, but he didn’t want anything to do with it. So, we put some pasta sauce in the mixture and he ate it all up. That’s my boy…I love Italian food too! Wait a minute…I also love Thanksgiving food...

The Dietician
The trip to the dietician last week proved to be helpful. She gave us a lot of suggestions and ideas as to how we can get Elijah to start eating more table foods… as well as things we can substitute for foods he can’t eat because of his allergies.

I got the idea to put the pasta sauce in the potatoes because the dietician said sometimes little ones want to have a lot of flavor in their food. Hmm, it’s not what I would have thought because baby food is so flavorless. And little Elijah loves his baby food. So, slowly, but surely, we’re trying to introduce Elijah to more and more flavors and textures. He’s not too sure about it as he’d rather suck down his easy to eat baby food, but we’re getting there. He doesn’t particularly like to chew, so we’ll keep working on that. He is, however, becoming better and better at drinking from a cup. It’s another one of those things that I feel like he’ll eventually get the hang of, he just needs practice. “He’ll get there”, as I like to say.

Oh, for those of you anxiously awaiting a nickname for our dietician (yeah right!) I decided not to give her one. It doesn’t sound like we’ll be going to her very often (if ever) and I didn’t want to put the effort into coming up with a nickname. All I could come up with was Ms. Food and I didn’t think that was very creative anyway.

This Boy Likes Weddings
Elijah attended the fourth wedding of his life the day after Thanksgiving. His mom and dad’s friend Jen got married to an awesome fellow named Bill. Elijah was a good boy and enjoyed dancing to “Play That Funky Music White Boy” despite the fact that he was a bit sleep deprived. The wedding was beautiful and we were really thankful we could make it (Congrats you two!)

Home Again, Home Again
So, it’s back to the daily grind after our extended weekend. I hope you all had a wonderful Thanksgiving. We sure did. We have so much for which to be thankful. God has been good to us. Thanks to all of you!

Check out Elijah’s Photobucket site. I’ve been in the process of reorganizing and uploading new photos and videos. I’ve organized it by putting folders on the left-hand side of the screen. Those folders have subfolders for each month, so remember to always check for subfolders. (Check for sub-subfolders too). Anyway, I’m not done or up-to-date yet, but check it out anyway. There’s new stuff in the 2nd Year Videos folder and 1st Year Videos folder. I’ve been working really hard on getting his videos edited and uploaded, so expect new stuff on his site soon. For the newest photos, check out the 2nd Year 2008-2009 folder. (I hope this isn’t too confusing. If you have any problems finding stuff, let me know).

Congrats to Elijah’s Uncle Andy and soon-to-be-Auntie Karen, who just got engaged this weekend.
A late congrats to Elijah’s Uncle Dan and Aunt Darlene, who will be giving Elijah a cousin next year.
And a later congrats to Elijah’s “Uncle” Ross and “Aunt” Shae, who will also be giving Elijah a cousin next year.
Lots of exciting additions to Elijah’s Life next year and he can’t wait!

Monday, November 24, 2008

Appointments Update

Dr. Positive
Last Thursday, Elijah had his fifteen month check-up with his Pediatrician, Dr. Positive. It was a pretty uneventful appointment, which is definitely nice.

So are you wondering about his stats? For those of you who are interested in such things…Elijah now weighs 21 lbs. 3.5 oz., which puts him in about the 10th percentile in the weight-for-age category. This is an improvement from his last appointment, where he was getting close to the 5th percentile and causing us some worry. He is 32 in. long, which puts him in the 75th percentile in the length-for-age category (a tall fellow, indeed!). His head circumference is still at about 42 cm, which is of course in the negative percentiles. He is following his own curve, however, and his head seems to continue to grow. Oh, how we ache, though, to see his head measurement fall into the curves for “normal”. We’ll keep giving that one to God to take care of.

At the end of our uneventful appointment, Dr. Positive (staying true to his nickname) said, “He’s doing great you guys.” And he is.

Dr. Loafer
Elijah saw his D.O., Dr. Loafer, on Friday. Elijah dislikes lying down to have his head manipulated, but he’s fairly cooperative. At least he’s not screaming at the top of his lungs the whole time! I don’t know if the manipulations are helping at this point (it’s certainly too early to tell), but Andy and I both feel like the shape in the back of his head has improved and become more round. Either way, we think it’s worth the time and the effort to try it out. And, Dr. Loafer, now that we see him every other week, has struck me as a kind, considerate, quiet, unassuming man. Those are good qualities to have when you trust someone to work on your child’s skull.

A New Nickname
Tomorrow we’re taking Elijah to a dietician for the first time. (Uh-oh…another nickname?!) We thought it might be wise to get some advice as to what we should be feeding Elijah. We want to make sure he’s getting everything he needs and his situation does complicate things. For one, he doesn’t pick things up or feed himself yet. Secondly, while he can chew, he’s inconsistent and chokes on his food often. And third, he’s allergic to milk, eggs, and peanuts. I find myself a little overwhelmed as to what he should eat. Honestly, he’s probably one of the healthiest 15-month-olds there is. He mostly eats fruits, veggies, rice cereal, and some meats…all organic. He doesn’t know that there’s a world of junk food out there…yet.

In Summary…
Outside of the world of appointments, Elijah is doing well. He wants to walk, he’s incredibly close to crawling, and he likes to stay up in the middle of the night like a rock star (okay, so the sleep part isn’t going so well…). He’s a joy and we’re forever grateful that he’s ours. I hope you are all having a good (short!) week.

Love, Lisa and her boys

Tuesday, November 18, 2008

Falling Down

Have you ever fallen down?

I know; it’s a silly question. Walking on two limbs can sometimes be unstable and we’re all apt to fall at some point. But, can you imagine falling and not trying to stop yourself from doing so?
I’m sure you’ve all had the experience where you’ve taken a fall and you end up hurting your hands in the process. I can bet that one of you reading this has even broken or sprained a limb in this way. Our natural reaction to falling is to protect ourselves. It’s better to injure a hand or elbow than a head. Did you know, however, that we’re not born with this reaction? It has to develop.

So where am I going with all of this? Am I trying to explain how Elijah has taken a big fall and hurt himself? No, I’m trying to illustrate how excited we are that Elijah has finally developed this falling reaction, called Protective Extension. In the past, he would fall over and would do absolutely nothing about it. Now, he is more consistently using his hands to catch himself when he goes forward. It’s one of those things that we all take for granted. Had I ever heard of protective extension before I had become Elijah’s mom? Nope, but it’s another thing for which I am feeling really thankful. Obviously, we wouldn’t want him walking around without it.

So, the next time you fall (oh, let’s hope it’s not anytime soon!), think about how blessed you are to have protective extension. And as you rub your sore wrists; be thankful that it’s not your head you’re rubbing.

Friday, November 14, 2008

Elijah is 15 Months Old Today!

Elijah is keeping me really busy, which of course is a good thing. He loves to walk around and since he still needs my assistance to do so, I’m walking around our house a lot. Every day Elijah gets stronger and gets closer to walking unassisted. He does great in his walker and has learned how to hold on with his hands. He loves it and gets this “I’m doing it!” expression on his face. It’s so great to see and is pretty amazing since he’s had the walker for less than two weeks.
In therapy this week, the clinic based PT said she thought Elijah was close to crawling. And when I showed our school OT Elijah’s walking skills in his walker, she said, “Lisa, I’m so impressed!” Needless to say, his therapists are happy to see all of the progress he is making. I expect to be chasing a little man around my house soon and I can’t wait!

Family Fun Night
Last night Andy, Elijah and I went to a Family Fun Night for families involved in Early Intervention. It was really nice to talk with some other parents and meet some new people. Plus, Elijah was the center of attention as he barreled through the gym in his walker. He is such a miracle.

Fifteen months going on two?
Apparently, our 15-month-old miracle thinks he is two. He’s been having temper tantrums on a daily basis. At first, I was so thrilled. Here he is doing something so typical, that I’d usually just smile to myself with sheer joy. Now the novelty is starting to wear off since he throws a temper tantrum whenever he doesn’t get his way (which is often). It’s like he’s finally discovered that he can move and he doesn’t want anyone to stop him. I can’t say I blame him, but it’s impossible for him to be mobile whenever he wants. Inevitably I need a break sometimes, he needs diaper changes, and he needs to ride in the car. I hope he’s able to understand that he can’t always get his way soon because the full blown screaming episodes are getting old. Most of all, though, he is the same little joy he’s always been and I’m glad that he’s getting frustrated. It means that his cognitive skills are developing and for that, I am grateful.

News Story about Hyperbarics
NBC 15 in Madison, WI published a story yesterday about a family doing hyperbarics at the same clinic we treated Elijah (Wisconsin Integrated Hyperbarics). Andy added the video to his blog, so check it out at
www.cptreatments.blogspot.com. You can see the chambers that we took Elijah in and see a little of what we experienced while we were there. It’s a tear-jerker, so grab the Kleenex.

Have a great weekend! Love, Eli and his folks

Thursday, November 6, 2008


I feel like I am running around in circles and sometimes I am…literally. Elijah still loves to walk and he’s getting stronger (and smarter) it seems each day. We spend a lot of time walking around in circles and when I think about complaining about my back hurting, I remind myself that it’s a miracle that he’s doing any of it. I have absolutely no right to complain.

We have therapy two times a week now (once with the school district and once at a clinic) and we see an osteopath every other week, which is a big part of me feeling like I’m running in circles. It seems like we always have something to do and somewhere to go, but I’m so grateful to have wonderful people who are helping Elijah grow and develop. I feel like Elijah has a awesome team and I’m the co-captain (with Andy as the other co-captain of course!).

School Therapy
Our Early Intervention PT came this week and brought us a walker for Elijah. He had tried one during his clinic based therapy, but now we have one at home for him to learn how to use. Each day, Elijah gets better at using it. At first, I would have to hold his hands on the handlebars. His right hand is stronger than his left, so he would hold on with only his right hand. Today I was able to get him to walk without any help from me for about five feet! He’s holding on with both hands and he’s learning how to use it. That means he could be mobile independently soon! At this point, I don’t think he quite understands that if he lets go, he’ll fall down, but I’m sure that’ll come. And, he has no clue about steering, but I’m sure that’ll come too.

Clinic Therapy
This week during our clinic based therapy, Elijah tried out their walker and the PT said that she was impressed with the steps Elijah is taking. She liked to see how far he could step and that he usually kept his legs apart. That led to a conversation that Elijah doesn’t have a lot of the typical problems that affects children with cerebral palsy.

“Well, he sure is determined,” I said. She nodded, but I detected disagreement. “You can have all of the determination in the world, but if your brain is telling your body to move incorrectly, your determination means nothing.” It was another one of those moments where I realized that God has undeniably intervened on our son’s behalf.

Later, I was talking to the OT and she mentioned that she didn’t think that they could get things past Elijah, meaning they think he knows a lot. This only reaffirmed what I already think…that Elijah can understand a lot more than he can communicate with us. Understanding comes before the ability to communicate and I think that Elijah can understand a lot.

Gaining Abilities
Elijah just seems to be making so many gains lately. The walking is obviously huge. But, also his understanding and his ability to move is amazing. He’s become so much more interactive with toys and is trying to move on the floor now to get them. He’s not crawling yet, but it has to be soon. When I set him on the floor, he’s all over the place. He’ll get on his hands and knees and rock and then get himself up to sitting, roll somewhere else and then side-sit. He side sits a lot now, which, to me, is a great sign of how good his tone is these days. Each week he’s different and sometimes each day I feel like I have to meet him all over again.

A Long Road
Of course, I know that Elijah has a long road ahead of him. For all the things he can do, there is probably a list just as long for the things he can’t. We’ve tucked that list away for now and focus on the positives. The thing he could use the most prayers for at this point is his fine motor skills. While he seems to be plugging along in the gross motor skills, it’s the fine motors where he’s the most behind. Thankfully, he keeps developing in that department as well. He purposefully can turn on toys by batting at them, but at this point, he is still unable to put things in his mouth (other than his hands). He drools a lot too, which also has a lot to do with motor control. We know he’ll get there, as he keeps improving (he holds onto his walker!) but he has a long way to go. Please keep him in your prayers.

On a Completely Separate Note…
A few weeks back, I found a book in a bookstore called
My Stroke of Insight by Jill Bolte Taylor. I thought it sounded interesting, so I picked it up and read the book jacket. The book is the true story of a brain scientist who had a stroke at the age of 37 and it gave her a completely different perspective of the world. I am aching to read this book, because I feel like it could give me some insight on what is going on in that little head of my little man.

Now, I of course realize that a stroke is different than what happened to Elijah, but I do feel like the more we (as Elijah’s parents) know about how the human brain works, the more we’ll be able to help and understand what Elijah is going through. Anyway, for those of you interested,
here is a link to a speech Ms. Taylor gave about how her stroke impacted her. She gets a little too “new-agey” for me near the end, but I thought it was very interesting and that it was worth sharing.
Hope you are all well!

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: http://cptreatments.blogspot.com/. 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.

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 thoughts...it’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.

Thursday, August 28, 2008

A Note from the Crazy Optimist

Great news!
Elijah does not have Celiac Disease. We’re excited about that, but still uncertain as to why he isn’t gaining more weight. Our pediatrician doesn’t seem too concerned, (perhaps a little) but we believe Elijah’s head size has a lot to do with his weight. It’s frustrating to say the least. We can fill him up with lots of milk and food, but we can’t make his head grow.

We keep getting conflicting information about how much impact the head size has on weight. To me, it only makes sense that his head would make a difference in how much he weighs. I keep looking at him and I see his little chubby belly and think to myself that he’s healthy and happy, so who cares if he doesn’t keep up with the percentages? It’s hard to think that way, though, and very easy to worry about our baby. What if we’re not giving him enough? What if he isn’t getting the amount of calories that he needs to make his head grow? I try not to worry, but we do worry. I suppose that’s just a part of the job description for being a parent. For now, we’ll keep feeding him a lot and hope that he continues to gain weight.

Moving Along
We got Elijah a new toy yesterday with his birthday gift certificate. It’s a shopping cart push walker. If we hold his hands on the bar and push it, Elijah will take steps! We were very excited to see that. He falls over easily, but it once again tells us that he’s getting there. I truly believe that our little guy will walk one day; it’s just a matter of time.

In the crawling department, Elijah can maintain a crawling position for probably about five minutes. He likes to bounce in that position and he even rocks back and forth at times (which I know is what kids do before they take off crawling!). His hands are still fisted in that position, but I’m hopeful that his arms will continue to get stronger and he’ll start using them more.

Time is Flying
We’re starting HBOT on Tuesday. Isn’t that crazy? I’m kind of nervous, overwhelmed, and definitely excited. We’re trying not to get our hopes up, but we are expecting that he’ll experience some sort of change. At least I hope so. Yep, my hopes are definitely up...I can’t help it! We’ve read so many wonderful stories about what HBOT can do for kids like Elijah. How can we not get excited about it? With that said, it doesn’t work for everyone and it may not do anything for our little guy, but it’s definitely worth a shot. It’s one of those things that we don’t want to be wondering in ten years...“what if we would have tried that?” Now we’ll know, either way. Please keep those prayers coming. Keep asking for a complete recovery.

I’m a crazy optimist. I know that. At a year old, Elijah is quite behind developmentally. He doesn’t put things into his mouth, he rarely reaches for things, and he’s not mobile. No, he’s not doing those things...yet. I can’t give up that hope for a complete recovery. I just can’t. I think there are three main reasons for my crazy optimism... One: I know that nothing is too big for God. He created the universe and can fix one baby’s little brain. Two: Elijah doesn’t have a disease or a genetic disorder. He has an injury. Yes, it’s the worst kind of injury, but people can recover from injuries. Three: Elijah is doing so well. He has never given up and he has a stubbornness that I love and hate all at the same time.

I’m very well aware that Elijah’s cards don’t look so great. But, I’m not so keen on odds or percentiles. What do they really mean anyway? And, so I hope. I hope for a wonderful future and keep my feet grounded in reality. I know that either way I have my son with me, who is an absolute and complete blessing. Life is really, really good.

Now I also know that part of the grief process is denial. I think that I’ve been through all the stages over and over again....denial, anger, bargaining, depression, and acceptance. The thing with grief, though, is that it doesn’t just leave. I’ve gone through the stages more than once. I accept what happened to Elijah. I accept that others may never see him as “normal.” I accept that I may never see his complete recovery in my lifetime. But...I refuse to give up hope and I expect to always feel that way. Call it denial if you want, but my boy will tell me he loves me, he will walk and he will exceed any expectations set on him. He is amazing and with God, anything is possible.

Friday, August 22, 2008

A Party and Appointments for Our One-Year-Old

Party Time
This past Sunday we had a party to celebrate Elijah’s first year of life. Of course, he had no idea that we were all there because of him; all he knew was that he got to spend time with a lot of people who kept hugging him, talking to him, watching him, and kissing him. Not such a bad deal, hmmm? J He got some pretty neat presents too, loved sitting outside surrounded by family, and got to eat chocolate cake (milk-free, egg-free of course!)...which he loved! It was a lovely day and best of all...Elijah was really happy and showered us all of his smiles and giggles.

Neurosurgeon and Plastic Surgeon Appointment
We met with some of the doctors on Elijah’s “team” this week for a one-year check-up. These two doctors monitor Elijah’s head shape and make sure that his skull isn’t fusing prematurely. Since Elijah’s head does continue to grow (albeit slowly), they still don’t think his head is fusing before it should. The center does seem to have fused, but that isn’t abnormal to happen between six and twelve months. They want to see us back again in a year and we hope and pray that his skull will continue to remain open to allow his brain to grow.

Pediatrician One-Year Check-up
We saw Elijah’s pediatrician today for his 12 month check-up and it went really well. We made an evening appointment to allow us extra time to talk and we ended up talking to him for an hour! What a great doc. The nickname I gave him previously in these journals was “Dr. Positive” and that name continues to ring true. He is such a great doctor and we are feeling so blessed that he is the one to look after Elijah’s growth and development.

It’s not all great news, however. We are once again worried about Elijah’s weight. He now weighs 19.9 pounds...which puts him in the seventh percentile (or so). His height is 31 inches...which puts him in the 90th percentile, which means he’s a tall and handsome fellow. J His head circumference is 41.1 centimeters, which is some growth, but not a lot. We don’t like to get caught up on percentiles, but as his weight continues to drop on the charts, we get more concerned.

Dr. Positive wants Elijah to be tested for something called Celiac Disease. It was too late tonight to perform the test since the lab was closed, so we’ll be getting blood drawn on Monday to find out. So, here’s the mystery...Elijah seems to eat a lot, so why isn’t he gaining more weight? Celiac disease would explain why. The disease would mean that Elijah is intolerant to gluten. Here is a little synopsis of what happens to a person who has celiac disease taken from the
Celiac Disease Foundation’s website...

When individuals with CD ingest gluten, the villi, tiny hair-like projections in the small intestine that absorb nutrients from food, are damaged. This is due to an immunological reaction to gluten. Damaged villi do not effectively absorb basic nutrients -- proteins, carbohydrates, fats, vitamins, minerals, and, in some cases, water and bile salts.

So, what would that mean for Elijah if he has CD? It would include a strict diet and avoidance of more foods on top of the foods we’re already avoiding for allergies. Yipes, it seems a bit overwhelming. Of course, we’re hoping that he doesn’t have the disease, so we could use some more prayers. One – that Elijah isn’t diagnosed with Celiac Disease and Two – that we can figure out why Elijah’s weight continues to be low so that we can help him gain weight. In some ways, it would almost be a relief to find out he has CD, so that we’d know why he can’t seem to put on weight. But, the lifetime implications are scary. To think of all the things he’d never be able to eat is kind of sad, overwhelming and scary. I suppose I’m getting ahead of myself as we do not yet know the answer, but my heart is telling me that he has it. I hope I’m wrong.

Here’s the interesting thing...I’ve been hearing a lot lately from the autistic community on the subject of gluten and casein (milk protein). To me, if Elijah is also intolerant to gluten as well as his food allergies, it can’t be a coincidence. I know that autistic children are benefited by adhering to strict diets and perhaps this will be the case for Elijah too. The cause of autism hasn’t been found, but it has something to do with the brain. I hope Elijah isn’t found to have autism as a result of his injury, but perhaps we can learn something from the autistic community. Right now, though, it’s a situation we’ve become more than used to...wait and see.

You all must be wondering by now...”I thought she said it was a good appointment?!” Well, it was. It was nice to have the time to get all of our questions answered and we also had the time to discuss HBOT with Dr. Positive. We were expecting negativity since using HBOT for brain injury isn’t yet standard, but that isn’t what happened at all. That’s what I really love about this doctor. Most doctors seem to immediately discount things they don’t understand, but he didn’t. He said, “I never thought of using that before to treat brain injury” and listened to us. He seemed fairly indifferent about it and basically said it couldn’t hurt, so go ahead. I suppose it didn’t hurt that Andy had printed out research studies and articles for him to look at if he wished. On another note, I hope you all enjoyed Andy’s explanation of HBOT. He’s so much better at describing it than me.

I think Andy and I feel at ease now about moving forward with HBOT and we are going to be starting treatments soon. We’ll be starting in early September. I’m feeling excited and nervous, but it feels right and everything seems to be falling into place. I hope God blesses this and makes it work. We know it is God who will provide the healing.

Other good things...as the doc was checking Elijah’s tone, he said, “This is not a tight kid.” He did say Elijah has some tightness in his hips, but didn’t seem to think it was that bad. Elijah was giggling at the doctor and Dr. Positive loved that. He said something to the effect of, “This is why I love my job so much, because of kids like Elijah. You take a situation that looks not so good and to see him do so well is great.” He also said something about us getting our happy ending yet. I suppose our happy ending might not look the way I might have once imagined, but I think I agree with the doc. We will see our happy ending.

We hope this finds you all well, thanks for the prayers.. and if you’re still with me after this long post...thanks! :)

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