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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.
Hope
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.
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! :)
Written by Andy
As Lisa mentioned in a previous journal entry, we are considering hyperbaric oxygen therapy for Elijah. I have contacted many subject matter experts in the field of hyperbaric medicine over the past few weeks and have received an overall positive response regarding using HBOT to treat brain injury. I found this explanation of HBOT posted to an online support group by a medical doctor, some of which I’ve edited and added to for clarity.
There are two components to hyperbaric oxygen: increased ambient pressure and increased inspired oxygen concentration. The physics of hyperbaric oxygen in a nutshell is that under increased atmospheric pressure, more gas goes into substances.
This increased oxygenation, or hyperoxia, has several beneficial effects. First, the high level of oxygen in the blood allows improved oxygen delivery to tissues that are not getting enough oxygen at baseline (i.e. hypoxic tissues). Second, having times of alternating hyperoxia and hypoxia (as occurs during a series of HBO treatments) promotes the growth of new blood vessels into the hypoxic tissues, a process known as neovascularization.
In the case of a brain injury, whether from a traumatic brain injury, a stroke, a near-drowning, cerebral palsy, or any incident which causes lack of oxygen to part of the brain, there are some cells that have died.
It is thought that around the area of the dead cells or the "umbra" there is a surrounding area of damaged and dormant nerve cells--the "penumbra"--which can heal over time.
The theory--and there does seem to be considerable evidence to support it--is that when a patient is in a hyperbaric oxygen chamber and given 100% oxygen under increased atmospheric pressure, the oxygen dissolves not only into the red blood cells (as happens normally when we breathe) but also in much higher concentration into the blood plasma, the cerebral spinal fluid, the lymphatic system and all of the body's fluids, bathing all of the body's cells with increased oxygen levels.
The result is high levels of oxygen carried to the brain, bypassing the normal way the brain gets oxygen; by the circulation of the blood stream bringing oxygen rich red blood cells.
At least one study was conducted comparing the use of air, which has about 21 percent oxygen, to the use of 100 percent oxygen. The patients given room air were intended to be the "control" group, and they did as well as those with 100 percent oxygen. The conclusion, erroneously, I think, was that because there was no difference in outcome between the two groups, that hyperbaric oxygen was ineffective.
However, importantly BOTH groups improved. So the conclusion I believe is that the use of hyperbaric pressure does significantly help in healing injured tissue--in this case, the brain.
The KEY is the use of increased atmospheric pressure, so that increased oxygen dissolves into the cerebral spinal fluid to be delivered to the damaged brain tissue to speed up healing.I know that Dr. Harch and some of the other hyperbaric medicine physicians have found 1.5 ATA with 100 percent oxygen given either once or twice a day to be safe.
It appears--although it would be nice to have better studies--that any amount of oxygen from room air to 100 percent oxygen has a beneficial effect. We know that for prolonged periods, using 100 percent oxygen can be toxic, but those are under conditions of using 100 percent oxygen over days or weeks. The short periods of time used for hyperbaric oxygen chamber treatment don't seem to carry that risk--the exposure is much shorter.
I hope my comments help in understanding how this process works. I'm not an expert in hyperbaric medicine, but I am a physician, and I have been certified as a PADI scuba diver, and I've tried to put together my medical knowledge and what I know about the physics of this to help make some sense out of it.
It is way past time for the US government to sponsor controlled studies using a variety of protocols, with careful assessments using SPECT scanning. It is clear to many of us that there is a very great benefit from hyperbaric oxygen in treating a variety of brain injuries and many studies as well as individual case reports which prove this is true.
As you recall, Elijah suffered a lack of oxygen at birth, otherwise know as hypoxic ischemic encephalopathy (HIE), along with seizures shortly after birth. He has developmental delay and cortical vision impairment (CVI) as well as secondary microcephly (small head size) due to the lack of oxygen at birth.
I spoke with one certified neuroscience registered nurse (CNRN) who has been closely involved with clinical trials for many years using HBOT to treat acute traumatic brain injury. She told me in so many words that as a professional she could not recommend HBOT for brain injury as the studies to date have been inconclusive. She continued by telling me that as a mother, she would be doing what we’re doing.
I also spoke with a clinical research nurse involved in an ongoing clinical trial in Ohio sponsored by the Department of Defense involving 80 some children with cerebral palsy. She informed me of many positive initial results from the study An Evaluation of Hyperbaric Treatments for Children With Cerebral Palsy. Many children see a decrease in spasticity (tight tone) and increased attention span.
Bottom line – there are minimal serious side-effects and maximum potential for positive results.
Please pray that we make the right decision regarding the use of HBOT for Elijah.
One year ago tonight - at 10:58 pm - Elijah came into this rough world. Unbeknownst to all of us, it was going to be a rocky start. And while today holds some pretty bad memories, I’m feeling an overwhelming sense of peace today. Thank you so much for all the prayers and well wishes you’ve all sent us this past year. With God’s help and all of you cheering us on, who knows what Elijah will be able to accomplish in the years to come!
I wrote the following a couple nights ago when I couldn’t sleep. Here’s to Elijah...
Mommy’s Silly Little Poem
Dear Elijah,
My boy, my boy you’re growing so fast
Is it possible that a year has now past?
Did you know I loved you before you were born?
From the moment I saw those two lines one early morn?
On second thought...
It was earlier than that...it was before I knew
that inside of me your little body grew
Someday you will see all you’ve overcome
You’ve had your fair share of trials...and then some
If I could I’d certainly take your place,
But you handle it better than me...with a smile on your face
Your one year has been much more amazing than my twenty-six
You’ve taught me so much; some things I just can’t fix
It sure hasn’t happened the way I thought it would
I’ve learned life is clouded by thinking about “should”
I try not to remember the things I want to forget
So much was washed away the moment we met
Oh, forgive your cheesy mother with her silly little poem
Someday you will be older and away from me you’ll roam
But, today, my boy, I’ll hold you dear
And make sure I tell you loud and clear
I love you my boy more than you’ll ever know
And no matter what, I can’t wait to watch you grow.
I love you my little “Boo-ba.” Happy First Birthday!
Today, we celebrate your LIFE!
Love,
Mom
The Big One is Coming Soon!
Tomorrow (the 14th)...um, in less than an hour, is Elijah’s first birthday! Can you believe it? (I can’t...I think I’m in denial.J) How did a year pass us by already? One year ago at this time I was in labor...I don’t want to ponder it, so instead here are some new developments from our life lately...
Chewing is Amazing!
Do you ever think about chewing your food? Lately, whenever I eat, I think about how I’m chewing my food and how amazing that is. I suppose it sounds silly, but chewing is amazing!
The great news is that Elijah has been chewing on a more consistent basis now. We’ve been working on this lucrative skill with him for a long time. We’ve been giving him puffs (little cereal things that easily dissolve) for a while now. Just a couple of days ago, he was able to eat several of them. It’s really neat to see that mouth working.
Temper Tantrum
Andy, Elijah and I went shopping this past Sunday. We turned our cart down one of the toy aisles and decided to show Elijah some of the trucks. All boys love trucks, right? Well, we placed this little police truck on Elijah’s lap and pushed the buttons. He absolutely loved the noises and the lights on the top. We decided we’d buy it for Elijah, as it’s not often he shows interest in toys. Then something really neat happened. As Andy started to put the truck in our cart, Elijah started to fuss and cry. Andy gave it back to him and Elijah calmed down. He took it away again and Elijah started to cry again. Andy tried this probably about six times to see what Elijah would do and each time he cried. It was a little temper tantrum because a toy was taken away.
Andy and I were so excited. I suppose that sounds strange to get excited to see your child have a tantrum, but it’s another developmental thing that was “supposed” to happen by now. It’s really cool that Elijah took note. I hope he gets mad about more things! (There are so many things I’ve wished for as a parent that I never thought I would!)
OT
Our OT was here today and she said Elijah keeps making changes every week; he has definitely not hit a plateau. She also said his shoulders seemed less tight. All good news. :)
HBOT
Andy and I are seriously considering trying Hyperbaric Oxygen Therapy (HBOT) for Elijah. For those of you unaware of this treatment, (which I’m sure is most of you!) it involves going into a pressurized chamber and receiving 100 percent oxygen. The oxygen has many healing effects and has been shown to do some incredible things for those with brain injury. Basically, it works by increasing the amount of oxygen that goes to the brain and can “wake up” dormant cells. It’s not a miracle cure, but if it could help Elijah, we want to try it.
Andy really does his homework and has been doing a lot of research on the subject. He’s contacted several people who are involved in some groundbreaking studies. I’m sure I’ll talk more about this in the future, but for now we’d ask that you’d pray along with us that we’ll make the right decision for our son. (Perhaps I’ll have Andy write a bit about HBOT at some point, as he’s much more knowledgeable in the subject than I am. If you’re interested, there is a book called The Oxygen Revolution by Dr. Paul Harch, which explains the science a bit more.).
I’ll leave you with a pretty incredible clip from the Montel Williams Show about a mom who tried HBOT for her daughter and it did wonders. Again, it’s not a miracle cure, but it’s pretty exciting. Here is the clip: http://www.ihausa.org/video/montel.html. Enjoy!
Words hurt
A couple of weeks ago, while I watched an episode of Seinfeld, I was taken aback a bit by something that was said. I know I had seen that particular episode years earlier because I vaguely remembered the plotline. George, because of his own stupid shenanigans, had to find the hat size of everyone who would be coming to the baseball stadium where he worked. “What if a pinhead walks in? Then what’ll I do, Jerry?!”
I blinked and stared at the TV. Did he just say pinhead? Yep, he did. He was making fun of people with small heads. For those of you unaware, pinhead is a derogatory term for microcephaly. Elijah has microcephaly, meaning that his head size is much smaller than average for his age. Obviously, I took offense to this comment.
I don’t consider myself an overly sensitive person, I really don’t. But, it’s never easy to hear someone mock a loved one based on things outside of their control. I guess I notice things I didn’t notice before. Like I said, I had seen that particular episode before and I thought nothing about the comment. It’s different now.
To give you some background about me (Elijah’s mommy), I grew up in a household in which both of my parents worked with people who had cognitive disabilities. At a young age, I was informed that it wasn’t nice to make fun of others based on their limitations. “Retard” was a swear word to me and was not to be used under any circumstance (in fact, it was difficult for me to even type it right now). And while I knew these things, it’s become a whole lot more personal. It’s not nice to make fun of others and now it’s become so much clearer to me.
Not to say that I’m perfect by any means. I’m sure I’ve said hurtful things to others without realizing it. I’m sure I’ve described myself as a “spaz” in the past, not knowing what it meant. Spaz is short for spastic, which means that a person has tight muscle tone (which is what Elijah has).
Yes, sticks and stones may break your bones, but words hurt. Why is it that we use such hurtful words towards those unable to defend themselves? It’s not funny. Words can cause such pain and aren’t worth a few laughs.
The little dude
So, how is the little guy doing? Well, pretty fantastic. He seems to continue to improve. He’s a very happy baby and seems to be more aware of his surroundings. In the past, he wouldn’t turn to someone to take note of their presence. The other day Andy was leaving for work and Elijah was sitting in our family room. Andy and I were standing about ten feet away and said, “Elijah, daddy’s leaving for work!” It took him awhile, but he did turn to look at his daddy. We were pretty excited to see him take note.
Elijah is also getting more vocal. He seems to talk to his daddy the most. He sort-of babbles, but he only does it when he’s mad. He’s made some ma-ma-ma sounds when he’s complaining and he still says the ba-wa-ba-wa noises...also only when he’s angry. The coolest thing he does is “talk” to his daddy. Andy will say “I love you” over and over. One morning, Elijah said “laboo” and another morning he said, “lah”, which were obviously new noises. I try not to get too excited, because he’s not very consistent with the noises, but I continue to believe he’ll get there.
Words hurt, part two
Can you believe that Elijah is nearing that one year mark?! I really can’t. At this age, people start to expect that a child is starting to do some “cool” things. I’m getting the innocent question “Is he walking yet?” a lot more now. I usually reply with, “No, not yet” and my heart breaks a little. He’s obviously still in the range for what is considered “normal” to start walking. What happens when he is past that? Sometimes I don’t want to deal with it. Everyone assumes, of course, that he is crawling all over the place. How I would love to write an update saying Elijah was crawling, but alas I cannot. He’ll get there. :)
It’s hilarious when we take Elijah out in public wearing his glasses. I’ve had people literally turn and point at us. “Look at that baby! He’s wearing glasses!” Of course, everyone finds him adorable. Sometimes, though, the questions and naive comments of strangers hurt a little. “He sure looks down a lot.” “Is he being shy?” I know that these people are simply making conversation or trying to be friendly, but the comments remind me how Elijah is different. I know this is only going to become more difficult as he gets older, so I’m trying to prepare myself. I am trying to script the right answers that are kind and that don’t make people uncomfortable. I figure how I talk about things gives others an example of how they are supposed to react. If I’m negative others will be negative. So, I continue to remind myself to be positive. We do have the cutest, sweetest little boy after all. What is there to be sad about?
Busy times
I know, I know, I should update more often. We’ve been extra busy lately. I don’t know if it’s going to slow down since we’ll be having lots of doctor appointments soon to “celebrate” Elijah’s first birthday. Ha! Ahh, the joys of life. We hope you are all doing well. Don’t let my comments about words fool you. We really are doing great and love to hear words from all of you. :)
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