Blue Sky July

Upon a recommendation from the Kidz Krew, I recently read a memoir entitled Blue Sky July: A Mother's Story of Hope and Healing, by Nia Wyn. Nia's story really resonated with me and I was able to read the book within a couple of days. Her words paint the story of her journey through her son Joe's first seven years (who has severe cerebral palsy), told in a style which is more like poetry than a memoir. Honestly, I've never read anything quite like it.

More than anything, it's a story about a mother's love and the lengths a mother will go through to give her child the best life possible.

This quote really stuck out to me and I loved it so much that I folded the corner of the page where these words were written (please don't tell the library, ha!):

As we pass the running children who hold up their heads so easily, I realize miracles are so commonplace we barely recognize them anymore,
and near the circles of mothers who anxiously comparing milestones at the
school gates, I see how we live in a time where normal is never enough,

and we are never full.

Joe gives me insights I could never have understood without him, and he gives me
heartbreak.
To separate these two responses would be impossible. He is
equally beautiful and equally terrifying(pg. 42).

So beautifully written. Miracles are all around us and we can't even see them most of the time. Be the one to see them.

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It's Complicated

When it comes to the brain, it's complicated.

And confusing.

We don't really know what Elijah experiences. We do know that he doesn't experience his life the same way the rest of us do. It leaves me confused, wishing that I could spend some time inside his little body to better understand how he experiences this world.

He can see, but we don't know how much or what or when he's seeing. I'm often amazed at his ability to navigate without running into things. And at other times, I'm amazed at how much he doesn't seem to see at all.

He can hear, but we don't know if his brain is processing the information as it should be.

He can feel pain, but his brain doesn't seem to know what to do with the information. That leaves Elijah with a seemingly high pain tolerance. Which, by the way, sounds awesome, but it's not.

He can process his food, but his digestive system is a lot slower than most of us. Elijah's brain doesn't tell his stomach to empty as fast as it should.

He can communicate, but not with speech. It's often in subtle, unconventional ways and you might miss it if you're not paying attention.

He can interact with kids, but he doesn't know what to do with them. He often scares them and my heart soars and breaks to watch him trying.

You see? It's complicated. Elijah has a lots of can-dos, but they're all complicated by the brain's inability to know what to do with the information, which frustrates me. The brain is always changing, forming different connections. That knowledge gives me hope. But, the brain in it's complicated-ness makes life frustrating. It affects every single aspect of a person's life, from digestion to speech, from mobility to vision to hearing. Every.single.aspect. Whatever you do, protect those little noggins.

Because when the brain is hurt - it's complicated. And confusing. And sometimes frustrating.

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Flagpole

I'm a bit concerned that someday we might be prying a little tongue from a flagpole.

Hey, at least he'll be cute while he does it.

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"I Know You Can Hear Me!"

I've found myself telling Elijah "I know you can hear me!" several times in the last week when he's seemingly ignoring me. It's a relief in so many ways - to know that he is indeed getting all the sounds he should be, that he doesn't have yet another thing stacked against him. He doesn't always respond, but it doesn't mean he isn't hearing me.

Hearing, listening, and understanding are all different things, of course.

The ABR told us that the information is getting to Elijah's brain stem. What he does with that information once it gets there is any one's guess. And of course, like any two-year-old, Elijah sometimes seems to have selective listening. Can he understand us? Yes-most definitely. What and how much, though, we're not really sure.

In hindsight, I'm glad we did the ABR. It really wasn't as bad as I thought it might be (thanks for the prayers!), but sedation is still not something we take lightly (especially when the anesthesiologist mentioned that kids with 'developmental differences' sometimes have a harder time waking up). Dealing with a 'drunk' two-year-old isn't exactly my idea of fun. Elijah was wobbly and grumpy for that entire day. But, he can hear and that knowledge is priceless.

P.S. Don't the pictures of him during his ABR look like he's just listening to an ipod? Pretty amazing what they can learn with technology these days.

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ABR Results - Good News

Thanks for the prayers and well-wishes everybody!

As I write this, Elijah is trying to 'help' me type. That's probably a good indication that he's doing well. I don't have much time, so this'll be quick.

Elijah did well with the sedation. He's been pretty irritable and sleepy today, but that's to be expected. The poor guy is pretty wobbly on his feet and requires extra vigilance in keeping my eyes on him.

The best news of all - Elijah does not have auditory neuropathy, nor does he seem to have any hearing impairment whatsoever. In the audiologist's words, "I couldn't ask for a better ABR."

So good news all around. I'll probably write more later, just wanted to let you all know the little dude is doing well and the test was good news. Thanks. Okay, I think it's time for Elijah's third nap for the day...

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We Could Use Some Prayers

Tomorrow morning we will be taking Elijah in to have an ABR hearing test, also known as a BAER. ABR stands for Auditory Brainstem Response and BAER stands for Brainstem Auditory Evoked Response, because I know you were totally wondering and are completely riveted with this information. ;)

In order to perform this test, Elijah will need to be sedated. SEDATED. Okay, so sedation completely freaks us out. You see, the one time Elijah was sedated he had some issues with it. I know Elijah was really young at the time and it should be easier this time around, but it's still scary. It's not something we take lightly. And, if I'm going to be completely open and honest with you all, in a lot of ways I know it's going to be psychologically trying for us. It'll bring us back (emotionally) to Eli's NICU days and I don't want to go there. I can hardly even think about watching him passed out tomorrow morning. It makes my heart hurt.

Andy and I have gone back and forth several times as to if we were even going to do this test. We've spent a lot of time weighing the pros and cons, discussing it, praying about it. We certainly don't want to put Elijah through a procedure unless it's absolutely necessary.

And here's where it gets confusing - we know Elijah can hear. So why, then, would we be doing a hearing test? The thing we're trying to rule out is something called auditory neuropathy. Supposedly, with auditory neuropathy, hearing can come and go, it can be mild to severe, and it could cause a person to have a hard time understanding speech. Basically, it would mean that the brain isn't receiving all of the messages it should be. Considering Elijah's history, it's quite possible that he might have some sort of hearing problems.

So, that's how we came to decide to do the test. There are possibly things we could do to help Elijah if he indeed had some hearing loss (such as hearing aids or cochlear implants). With that in mind, we are going ahead with the test. We really think it needs to be done to make sure we're doing everything we possibly can be doing for him.

We could certainly use some prayers. Prayers for a safe and uneventful sedation experience and for the test to show that Elijah doesn't have auditory neuropathy. Thank you to each and every one of you who care about our little Elijah. It means so much to us.

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Temper

It's been a bit of a rough week. Our little man has been having a lot of temper tantrums, which we think we can mostly attribute to teething (Elijah is getting his second set of molars).

The good news? He only needs three and a half more teeth. The bad news? You guessed it - He only needs three and a half more teeth (he's been working on that 'half' for a few weeks now).

Mealtime has been particularly rough. He wants to eat, but once I start to feed him he freaks out - biting and banging his head on the high chair. Not pretty. We finally figured out that he's in pain (the poor guy).

When Elijah first started to have temper tantrums, we were thrilled. It was during his first set of HBOT dives that he started to tell us that he didn't like getting his diaper changed and that he didn't really appreciate getting put in his car seat. Over a year later and he still doesn't really like those things and still lets us know.

Having to come back inside after playing outside also sets him off - as does not letting him go somewhere he wanted to go.

A lot of this stuff is just typical two-year-old stuff. While some of the ways he deals with his frustration isn't so typical (i.e.-biting his hand to the point of causing it to bleed), a lot of it is your run of the mill temper tantrums (and from what I understand - some self-injurious behaviors can also be considered 'normal').

I remind myself that there is a reason that "they" call these the Terrible Twos. Elijah does have disabilities, but more important than any of his diagnoses is this fact - he is a two-year-old. There is more that makes Elijah similar to his peers than what makes him different. And I believe that statement is true when it comes to every single child, no matter the disability. We are all linked by a human connection. It is so important for me to remember this.

The temper tantrums this week got me to thinking...what causes your kiddos to lose their tempers?

I'd love to hear from Elijahland readers who are parenting or have parented (special needs or not) a child who has temper tantrums. What gets your child upset? How do you deal with it? And, if your kiddo has never had a temper tantrum, what do you wish they'd get mad about? Because, I know when you're parenting a child with special needs, there are things you never thought you'd wish for. I never thought I'd see temper tantrums as a blessing, but I do. The blessing is in never taking anything for granted. Write a comment and we can share stories (you don't have to have a blogger account to do so...just post it anonymously and sign your name at the bottom). I'd love to hear from Elijah-fans (yes, you!). Okay, so is that a totally pathetic attempt to get comments or what? :)

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Memories of Cold Weather Days

After watching Elijah playing in the snow this week, I got a little nostalgic about his past two winters - his cute hats and snowsuits from days gone by. I decided to take a trip down memory lane via pictures. Care to join me?

Elijah at three months old, during his first snowfall ever.

I'm including the smiley photo because he's just so cute. Both photos were taken on the same day - December 1, 2007. I love the smiley boy picture and yet it fills me with sadness to see the deep ridges in his head from his hurt brain. Joy and sadness are so interlocked that sometimes they are carried in the same envelope. But, I digress...back to our regularly scheduled programing.

Elijah wearing Uncle Dan's hat - 4 months old

Wearing his cute penguin snowsuit - 4 months old

Adorable sweater and hat combo - 5 Months old

Elijah's first snowman - 7 months old

(he wasn't that impressed)

Just when we thought winter was over...a spring snowstorm - 7 months old

"Watching" the deer in the backyard - 7 months old

In his winter gear - 15 months old

On the go during his second round of HBOT - 19 months old

I can't help but wonder...where did that little baby go? Ahhh, nostalgia.

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Snow Day

When I was a kid, winter was my favorite season. I loved to make snowmen, walk in the woods after a fresh snowfall, build forts and have snowball fights. As the years passed, however, winter became less enjoyable to me. (I think my enjoyment of the season is directly correlated to how much I needed to drive on snow covered roads).

We got our first real snowfall of the season yesterday and today. Thankfully, all of our appointments came to us instead of the other way around. (So today, I'm liking winter).

Even though we had the day at home, I wasn't sure if I wanted to take Elijah outside. Our thermometer said it was 8 degrees and it was windy. It didn't look fun to me. (What happened to that little girl who loved the winter?)

Just before dark, Andy said he was going to take Elijah out to play in the snow. Andy had "commuted" to the basement for work this morning to avoid a long drive to work, so all he had to do to get home was walk upstairs. I quickly got Elijah bundled up and followed my two men outside with the camera. I wanted to capture Elijah's first time playing in the snow. Even though this is Elijah's third winter, it's the first winter he's been mobile and it feels significant.

I've been excited to see how Elijah would react to snow this year. True to his outdoorsmen nature, snow (or cold) doesn't bother Elijah a bit. In fact, the little man loves the snow.

Andy even had Elijah sledding down our little hill (which honestly amazed me that he was able to stay on the sled and maintain a sitting position. Pretty impressive, if you ask me).

At one point, though, Elijah did fall off of the sled and face planted in the snow. We thought for sure he'd be done with playing outside. He didn't even care much about having the snow in his face. He didn't even cry. He just looked a little annoyed.

Soon, it was time to go inside. And Elijah was not happy. Once inside, a major temper tantrum ensued. In Elijah's opinion it wasn't enough time outside. But, Andy and I were cold. And, I'm still a bit of a paranoid parent. Remember - this is a kid who had temperature regulation issues for quite some time after his birth. I don't think about it much, but the paranoia about him getting too cold lies deep in my soul. Besides, did I mention Andy and I were cold? Elijah must've been too. Especially after his face planting episode.

Eventually, Elijah calmed down and was okay with the fact that it was time to be inside. Which left a couple of things on my to-do list:

1- Buy snow pants for Andy and me.
2-Find that little girl who loves the winter. I know she's in there somewhere and I have a feeling we're going to be outside a lot this winter. Might as well decide to love it, right?

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A Man of Few Words

The hardest thing for Andy and I is to yearn for speech. Something, anything, any words at all, please-just-let-him-talk-to-me speech.

It's not that Elijah hasn't said anything. He has. There have been times when I've walked in a room, Elijah has given me direct eye contact and he's said, "Mom."

"Yes!" I say, "that's ME! I'm Mom. Mmmmomm, that's right, Elijah, Mmmmooooommm."

Most of the time, Elijah doesn't refer to me at all, but once in awhile, I'll hear an "Ahm" and I know he's saying my name.

And then nothing. I won't hear it again for a long time. For the most part, Elijah communicates in crying, whining, screeching, laughing, growling, and "dolphin-boy" squealing. He does babble occasionally and if he's feeling really cooperative, he will even mimic some noises (that, however, is exceptionally rare).

And then something amazing will happen. These moments are few and far between. I don't really mention them because, well, it doesn't happen very often and I usually chalk them up to my imagination.

Flashback to this morning...Elijah has just woken up and Andy brings him into our bedroom. Elijah sees me and leans his body towards me, which indicates his desire to be held by me.

"I love you, Elijah," I say when he's nestled in my arms.

And then comes a distinct, "Ahh-vooo." from Elijah.

"I heard it," Andy says and we both smile. Our boy said, "I love you" and we know it.

This isn't the first time. In fact, the first time Elijah said his version of "I love you" he was less than a year old. Andy was saying love you - love you - love you -over and over to Elijah. And Elijah said, "laboo" a couple of times...and then nothing for a really long time.

A little over a week ago Elijah said a version of "I love you" to Andy at the dinner table... and now this morning and I'm starting to let myself believe that it's real. Elijah is trying to say, "I love you."

It's not like he's never heard it before. The poor kid is probably going to move out when he's a teenager...that's how much he's heard it. He probably won't let me touch him once he's three, I've used up my allotment of hugs and kisses (Nah, there's no such thing as too many hugs or kisses). Let's just say he gets a lot of lovin' (can you really blame us?).

If there is one thing I want Elijah to know, it's that we love him...no matter what. He may be a man of few words, but he certainly chose the right ones to say. Because, when I think about Elijah's speech, "I love you," is all I really want to hear and I don't doubt that he is trying to tell us. And let's be honest, he doesn't really need words to tell us how he feels. We know.

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Did You Know It's Already Been

a week since Thanksgiving?

Does anyone else sometimes feel like life is passing by in fast forward? My weeks seem exceptionally long and yet they pass in the blink of an eye. Am I the only one?

At times, I feel so overwhelmed by life. Is it just me? I mean, there's always so much to be done, so much I'd like to do doing. So much therapy, teaching, hoping to do for Elijah. There's always something to do, from housework to therapy, to writing emails (I'm so behind) to updating this blog (which I love to do). Where is the time to just be, to just sit and read and be together without thoughts of what needs to be done?

Thanksgiving gave us a chance to do just that: relax, to read, to sit with family and talk and do...nothing. I like nothing sometimes. I took a several day break from the Internet. Sometimes it's nice to get away. With that said, I'm thankful for this crazy life of ours. I'm thankful for family and friends who've been so helpful and supportive over the past two years. I'm thankful for people who cheer Elijah on, who watch him with a smile on their faces. I'm thankful for people who see the miracles when they see our son. I'm thankful for acceptance and for hope. I'm thankful for my bloggy friends.

I write Elijahland posts in my head often. I wish I'd get them on "paper" more often, because I'd intended to write a post about how thankful I was for Thanksgiving...and a week has already passed me by. Can someone tell me where the slow-mo button is? I can't seem to find it.

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In Their PJs

One morning this weekend, Elijah sidestepped around his shoes very carefully to get to our back door.

He touched the door, looked down at his shoes, and walked a few feet over to me. He backed up into me like he was going to sit on my lap, but missed and sat on the floor next to me - his feet kicking, his face looking expectantly up at me.

It was clear what he wanted. "Mommy I'd like to go outside please. Could you help me get my shoes on?" he said without moving his lips. I looked down at our pajamas and the temperature gauge which read 30 degrees fehrenheit. What to do?...he'd asked so nicely.

So, Andy grabbed his coat and Elijah's coat and they got all bundled up. They went outside to play while still in their pajamas. I watched from inside making breakfast with a smile on my face thinking that life is good.

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I Get the Distinct Feeling ...

that this little boy will teach me more than I'll ever teach him

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Mr. Independent

Tonight, we ate chicken stirfry with sticky rice. Oh yeah, and then Elijah fed himself for the first time ever!

Elijah's a little confused about the difference between a toothbrush and a spoon, but he's getting there. The z-vibe is what gave him that little push he needed to do it. Usually he tries his best to not hold onto a spoon. Why hold a spoon when mommy (or daddy) will feed you?

In the following video, the food Elijah feeds himself falls out of his mouth...but he did actually eat and swallow some of the food he got in there tonight. So we're definitely calling this his official first time self-feeding. This is a big deal folks! We might've done some happy dances around the house and we might be really excited about this. Did I mention that it's a big deal? Because it's a big deal.
Hmm, now we just need to figure out how to make his sippy cup vibrate...maybe that'd give him that extra push to give himself something to drink. Ideas, anyone? ;)

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Sometimes Negative Things are Positive Things in Disguise

A lot of changes have been occurring for Elijah lately. It's funny sometimes, the things that make us happy.

-When Elijah plays with our mini-blinds and we tell him "no" he moves on to the next window and starts to play with a different window's mini-blinds. He's problem solving and that's a good thing.

-We've always fed Elijah in his high chair next to our table. The temper tantrums that were accompanying every meal last week were solved by pulling his high chair up to our table. Seems the little guy was getting mad that he wasn't sitting at the big boy table and he had no way to tell us (well, other than arching, screaming and biting). He's definitely communicating, so that's good.

-Elijah wants to touch his food and is getting more interested in what we're eating, sometimes trying to stick his hands in our food. We're thinking this means that our diet will soon have to be completely milk, egg and nut free. I like milk, eggs and nuts, so boohoo. But, I think that'll mean we'd lose some serious weight, so yay! (We haven't committed to this change...yet)

-Since I'm home (and I use the term "home" loosely) with Elijah all day, Andy usually does Elijah's bedtime routine. Lately, Elijah hasn't wanted anything to do with reading books at bedtime, until we determined that he just wanted mommy to read them to him. (Daddy isn't too pleased about this, but really it's a fantastic developmental step).

-When we're out and about driving, Elijah "drives" with his steering wheel toy. His toy falls off of his lap often and when it does, he whines. It's kind of annoying, but I love it because he never used to care about such things.

-Often, when Elijah is supposed to be going to sleep, he does a lot of babbling. Elijah doesn't babble much, so even though it's bedtime it's nice to hear those "babababas" coming from his cute little mouth.

See? Sometimes things that seem negative are actually positive. Sometimes things that are difficult to handle are developmental steps in the right direction.

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Do You Know?

As I carry Elijah over to the floor to change his diaper I ask: "Do you know I love you?"

He snuggles his head into my shoulder (which is his way of hugging) and he answers without uttering a word. He knows.

I love you too Boo-ba, I love you too.

Elijah kisses, kind of like bites :)

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Isn't He the Cutest Monster You've Ever Seen?

I love these pajamas! :)

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His Teeth are Clean

For much of his life, Elijah has been unable to bring things to his mouth. He can get his hands in his mouth (which is where they live), but getting an object in his mouth is another story. He would do it once in a great while, but the skill hasn't solidified...until now. Andy has been working with Elijah to try to teach him how to brush his teeth...and Elijah is getting it!

This is amazing because it's been hard for Elijah to hold onto anything for an extended period of time. The vibration from the toothbrush seems to remind his hand that he needs to hold onto it. It may not seem like much to some, but this is a HUGE breakthrough!

We ordered Elijah a z-vibe with attachments and are waiting for it to arrive on our doorstep. A z-vibe is a tool sometimes used by speech therapists to awaken, strengthen, and de-sensitize the mouth. I'm so excited to see if the vibration with the z-vibe will help motivate Elijah to feed himself. I see some amazing things on the horizon! I feel like perhaps we're at the cusp of something really fantastic.

---By the way, thanks for all of the nice comments on my last post! Sometimes it's hard to post things that are so raw and real, but I'm always glad when I don't sugarcoat over the difficult times. Knowing that others can relate and offer support means the world to me.

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He Can't Tell Me

At times, a blind rage overtakes our boy. He screams and he cries and he bites his hand until it's red. Welts and scabs form from his continual abuse. I hold his hands and urge him to calm down. But his anger is in control now. He arches backwards to hit his head on his highchair because he can no longer bite his hands and mine are out of reach. He must get the anger out.

"What do you want?" I ask. But he doesn't answer. He can't tell me. And he doesn't know why I can't understand.

My insides grow cold and I want to cry, but I've used up all of my tears and have none to spare. I'm dead inside at this moment, my eyes drifting out the window so that I can pretend that I'm somewhere else. Anywhere, but here in this moment, watching my child hurt himself.

I try to understand, solve the puzzle of his anger. "This isn't what you wanted for lunch?" I ask. And yet, I know how he feels. I want to punch holes in the walls and slam my head against the table. The rage visits me too. Because he can't tell me. And I can't understand.

***

I wrote this this afternoon after a really difficult lunch with Elijah. Tonight, I went to a local event featuring a speech pathologist named Teri Kaminski-Peterson, author of The Big Book of Exclamations. She said some things I've heard before, gave me some new ideas, and most of all, reminded me that there's no such thing as false hope. There's just hope.

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Adventures in Autumn

I was pregnant with Elijah when Andy and I started house hunting. I kept re-emphasizing the fact that I wanted trees. "I want TREES!," I'd say. And, well, I got my trees.
In the fall, that means we have a lot of raking to do. Unlike a lot of chores, I really like raking. There's something satisfying about being able to look behind you and see all of the work you've done. Besides, it only has to be done once a year, and most importantly - those leaf piles provide all sorts of opportunities for fun!
This past Sunday, we spent the day raking as a family. Andy and I raked and Elijah helped by walking through the leaves and doing his best to spread the leaves back out on the ground.

By the way, Elijah is in the above photo. His little head is peaking through the leaves. Can you find him?Now do you see him? He's in there... Needless to say, we had a lot of fun!

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Stress

I've spent the last two years trying to convince myself that I don't have any more stress than anyone else. Yes, I'm stressed at times, but everyone is stressed in different ways, right? I know if Elijah was developing typically, there'd be plenty of things that would cause us stress. Back talk, potty training, sleep deprivation, and temper tantrums – all those "typical" parenting things are certainly stressful.

But, here's the difference…when it comes to Elijah, we can't take anything for granted. I hope that Elijah will one day speak, but there are no guarantees that he will ever say anything more than what he's said already (which, if I'm honest with myself, is basically nothing). I'm pretty positive that at some point we'll be able to teach Elijah how to feed himself, but he may never pick up a spoon and feed himself all of the calories he needs. I can dream of a day that includes no more diaper changes, but it's possible that our little man may never be aware enough to know when to use the potty. Do I believe in my heart of hearts that he'll do all of these things? Yes, I do. But, there are simply no guarantees that he will learn any of these things.

I know what you might be thinking…there are never any guarantees for anyone.

And you'd be right, there are no guarantees. Any one of us could drop dead tomorrow or get ill or become disabled. But those are the "what ifs." Andy and I are already living in another realm – a world where the "what-ifs" have already become a reality. And you know what? It's stressful to raise a child who has disabilities.

I suppose that's not a profound statement. It seems kind of silly to even write it, but I don't often let myself admit that our road is a hard one...that many don't envy the shoes that we must wear. I know what has brought this on: it's having more than one doctor ask Andy and I recently, "How are you guys doing?" We say we're doing okay and we are. We're managing this special needs world the best we know how and learning as we go.

Today we saw Elijah's neurologist and he asked us if we make time to get away, just the two of us. We said that we do get away occasionally, but just like any other parents it'd be nice to get away more often. "Yes," he said. "Most parents would like to have more time away, but you guys also have more to deal with than most parents." And there you have it. Acknowledgement of something we already know, but don't often admit even to ourselves…parenting a special needs child is tough sometimes.

I can't help but notice the parents everywhere I go and think, "Wow, they seem so calm." I can't help but notice the parents having conversations with their kids. Con-ver-sa-tions, people! I can't help but notice that parents can sit and relax at a gathering while their children play nearby – at the same time Andy or I are constantly watching Elijah to make sure he doesn't walk off a curb or run into a tree or....(fill in the blank). Relaxing isn't really part of our vocabulary when Elijah is awake. And while I'd like to think that we don't have more stress than other parents, I'm kidding myself. I'm constantly wondering if I'm doing enough, constantly wondering is this "just Elijah" or is it a symptom of his hurt brain? Is that movement "just" his cerebral palsy or did he just have a seizure? Speaking of seizures, the neurologist reconfirmed that Elijah will always be at a high risk for seizures. We don't think he's had any seizures since his NICU days, but Elijah will always be at risk. We'll never be able to fully relax. And yes, we're stressed. But you probably already knew that. I guess I just needed to admit it, for me.

***

I just can't write something so overall negative without reminding everyone that it is an absolute privilege to be Elijah's parents. He's so easy to love! And while we are stressed, we are as equally blessed. I never forget that.

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Think Before You Speak

I've always hated those leashes that parents use for their small children. I've silently judged parents who've used them. This was before I had a child, of course, but after having Elijah I was still determined to never use a harness for my child; I didn't want people silently judging me as I had done so many times before.

Well, before leaving for our Texas trip, I broke down and bought one. "We'll be flying and airports are busy," I reasoned. My dad had mentioned on more than one occasion, "You should get him one of those harness things." Elijah runs now. He runs fast. It takes a lot of supervision to keep him safe because while Elijah does see, he doesn't see well.

With parenthood comes wisdom and I now see the merit in such a product. It's about safety, not about laziness or demeaning a child.

Elijah loved his new backpack harness. He was able to help us by carrying some of his own toys, plus I could hold the handle on the top and give Elijah a sense of freedom. I always hold his hand when we're in public so he thought he was on the loose – and he loved his new found freedom (or at least the perception of it).

We hadn't used the harness (which attaches at the bottom of the backpack and isn't visible in these photos) until we got to the airport for our return flight. The airport was busy and it seemed the perfect time to try it out. My parents offered to take Elijah while they took a walk around the airport, which allowed Andy and me to eat our dinner.

After a short time my dad came back and told us how a man had come up to him and said, "I suppose you have a cage for him at home too." Yes, someone actually said that to my dad.

My dad, without missing a beat, said, "Sir, this boy is almost blind." The man, not knowing what to say, walked away. My mom said firmly and loud enough for the man to hear, "Wow. That was rude!"

It wasn't too long before the man came back and apologized. I have to give the guy credit for having the guts to come back. I don't know if I would if I were in a similar situation. My dad, again being fast on his feet, accepted the man's apology and gently chided, "You know, perhaps you should think before you speak." And that was that. Elijah wore his harness for less than an hour (probably only a half hour) and we were criticized for it. It's no wonder I was apprehensive to use it.

I'm not trying to pick on this man, this stranger I'm sure we'll never see again. (Okay, scratch that... I am picking on that man. I can't imagine having the audacity to say that to a complete stranger!). The point is, I think this is a valid lesson for all of us. We're judgmental creatures. I'm as guilty as anyone else. But, if Elijah has taught me anything, it's that you really can't judge someone or something just by looking at them. You cannot look at a person who cannot walk or talk and know their IQ. You can't look at a person and know everything there is to know about them. And you can't look at child wearing a harness and judge their parents (or grandparents). Think before you speak.

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Another Day – Another Doctor - Another Diagnosis

I think I'm becoming numb to doctors at this point. We've seen so many of them that we definitely know what to expect. Elijah knows what to expect. I'm sad to think that this is Elijah's normal. He doesn't know a different life - a life without clinics and nurses and height and weight checks.

Elijah met a new doctor today – a developmental pediatrician. We wanted to talk to a guy who specifically works with kids who have developmental disabilities. We also wanted to know if this doctor had any more advice for us in terms of what we can do for our little guy. We're happy we went to see this doctor. He was really nice, he knows his stuff, and I think the visit proved to be beneficial.

The doctor went over Elijah's history with us and showed us charts correlating to his development (based on worksheets we'd filled out ahead of time). The doc told us what he was going to write in his report – that Elijah has cerebral palsy, that he has global developmental delays (meaning he's delayed in every single area of his development), and that if he were to give Elijah a median age it would be about 14 months...Some areas of his development (gross motor – walking, running) are much higher and closer to his actual age of 26 months and some areas (such as his speech) are severely delayed. Yes, these are things we mostly already knew, but it's still hard to hear it from an expert. It's still hard to see your child's development charted so far below his peers.

The doctor also mentioned that he thought Elijah is exhibiting signs of Pervasive Developmental Disorder – Not Otherwise Specified (or PPD-NOS), which means that Elijah exhibits some of the behaviors of autism, but not all of them. Honestly, this one took me a little by surprise. We weren't expecting to walk away from this appointment with another suggested diagnosis. Does that mean Elijah has autism? Nope. Does Elijah officially have this PDD-NOS diagnosis? Not yet, but the doctor recommended filling out some pretty extensive paperwork to determine if PDD-NOS fits Elijah's behaviors. Am I shocked? Nope. When you've already been told that your child has brain damage and that the damage is severe, well, not much can sound as bad as that. The doctor also mentioned that about 3/4 of the kiddos he sees - that have a history like Elijah's - show signs of PDD-NOS.

Other recommendations:

The doctor mentioned re-doing an MRI. Elijah's last MRI was performed when he was 8 days old. An MRI at two years would look much different and might give us some more insight into how Elijah's injury has affected his brain and how his brain has developed. Would it change Elijah's therapies and interventions? Probably not. Might it help us understand him better? Maybe. We'd have to sedate Elijah for this study, so we don't take this decision lightly. It's something we're definitely going to think seriously about before having it performed.

The doctor also mentioned testing Elijah's hearing. Elijah's hearing was tested when he was still in the NICU (and he passed), but this doc wants to know if Elijah's brain is receiving and interpreting the sounds. Just as Elijah has an issue processing what he sees (and has been diagnosed with CVI), it could be possible that he has an issue processing what he hears. We'll definitely be performing a test called Auditory Brainstem evoked Response (ABR) (also known as a BAER), which tests both the ear and the brain. We know that Elijah hears as he's very sensitive to sound. But, is he able to understand what he is hearing? Is his brain receiving the information? That's a hard one. We don't know and hopefully this test will give us some answers.

I know it may not seem like it, but overall it was a really good appointment. We liked the doctor and feel like he's already giving us some answers and help instead of just saying, "You're doing great!" or "Just keep up what you're already doing." While those things are nice to hear, it's helpful to get the most information we can about our little dude. And while we certainly don't want any more diagnoses, they simply are labels that explain what our child is experiening based on the injury that's already happened. It's never anything new. The doctor was sweet to Elijah and he mentioned more than once how well Elijah is doing. He just stopped at one point and said, "Wow, he is doing really well." And Elijah is doing really well. Adding more diagnoses to his list won't change anything. It certainly won't change how much we love this little guy. All we can do is keep on trying to see the world how he sees it...not only so we can understand him a little better, but because I think if we could we'd make the world a happier place.

Try to look at this picture and not smile. I dare you.

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What's Your Profession?

Picture: Texas in October; Eli swimming in the pool with mommy We recently switched all of Elijah's therapy to a different clinic. I'm excited about his new therapists and we now have all of his out-of-home therapy in one place. It's a lot nicer for me not having to drive to two different locations and it makes it easier for his therapists to keep in contact (and therefore on the same page when it comes to his therapy).

This morning we had Elijah's first OT session with his new therapist. We'd met her once before when she performed Elijah's OT evaluation, but this was our first actual session with this new therapist.

Therapists, especially when they don't know Elijah, ask me a lot of questions about what he can and cannot do, his history, etc. I expect this and I'm happy to answer. This morning, out of the blue, his new OT said, "What's your profession?" The question caught me a little off guard. I wondered why she wanted to know. Sometimes people tend to look down upon people who "just stay at home" with their kids.

"Uh, I'm a stay-at-home mom," I told her. But that's not what she was getting at. "Oh, you just seem to know a lot about child development," she said. "I thought maybe you had a medical background." I had to laugh. Andy gets that all the time, but this was the first time anyone has asked me specifically if I had some kind of medical background. And, you know, it felt good. :)

So what is my profession? I'm an "Ahm" as Elijah would say. It really is my dream job.

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Torture Take Two

Yesterday Elijah had his second Upper-GI study. This time, they put an NG tube down his throat to get the barium into his system (there just was no way he was going to drink that stuff!). Just like last time, it wasn't fun. This time, however, they were able to do a complete study.

Everything looked fine; the barium moved through like it's supposed to. The only negative comment the radiologist said was that Elijah's stomach empties really slowly. Elijah hadn't eaten for three hours before the study and yet his stomach was still pretty full of food. His stomach remained distended even after they had removed the food from it. This isn't really surprising to us as he'll spit up hours after he's had anything to eat or drink.

In some ways I was hoping for a structural problem. Not that I would want there to be something wrong, but then we'd have a definitive answer and something to fix. Now, we're left with not knowing what to do to help our little guy digest his food. All we can do is to continue to hope that his reflux and digestion will improve over time. And, we can be grateful that there isn't something structurally wrong because that would mean he'd need surgery. Overall, the test is good news, but it leaves us not knowing where we should go from here.

I'm glad it's over. It definitely feels like torturing our child. So, we'll wait to hear from the GI doctor to see what he thinks. And we'll keep hoping and praying for improvements.

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World Traveler

Two weeks ago, our little world traveler took his first airplane ride. He was such a trooper.

You see…last week, we were in Texas celebrating the Feast. We had a grand 'ole time and we've been busy getting back into our routines (which would explain the lack of updates about our little explorer). It's seriously taken me three days to tackle "Mount Washmore" and I'm still not caught up on all of our laundry. Say it with me now, "Down with GERD!!!" Yes, there was a lot of laundry.

Now onto the fun stuff: Flying!
Um, What are my parents doing to me?!

I was a bit worried about taking a two-year-old on an airplane, not to mention a two-year-old who just so happens to have special needs as well as severe food allergies. As with most things that we worry about, everything turned out fine.

On our first flight, we had to wake up really early and Elijah started to complain once we got to the airport. We were getting sympathetic looks and smiles from people, but their eyes were also saying, "Oh, please tell me they're not riding on the same plane as me." Once we got situated on the plane, Elijah started to cry inconsolably. A flight attendant kindly offered us some juice to calm Elijah down, but I showed her the bottle that he kept rejecting. He had no interest in drinking anything. I think he was tired and a little bit scared, but once the plane started taxiing down the runway he calmed down and was quiet for the rest of the flight. He even seemed to like the turbulence and took a nap!

On the flight home Elijah seemed to think flying was old hat. He sat quietly in his seat taking it all in and seemed excited as I explained that we were flying again. I couldn't believe it when I looked over a few minutes after we got on the plane and saw that Elijah had fallen fast asleep before we had even left the ground. He was an experienced and well-behaved traveler for the second flight and we were quite proud.

As we made our way off of the plane, a flight attendant stopped us. "Hey you guys were on my flight down," she said. "He did so much better this flight!" It was the same flight attendant that had offered us the juice. I guess we'd made an impression. J Let's hope it was an overall good one.
Well, our first flight with a small child is under our belts and we feel like world travelers. Last week as we lugged all of our stuff through the airport, we discussed that we weren't anxious to be world travelers again – anytime soon that is.

-Up tomorrow: Torture – Take Two…We're going to attempt a second Upper-GI study tomorrow at three. We could definitely use some prayers that the study would be conclusive this time so that we can stop torturing Elijah (and ourselves).

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The Sound of Laughter (and Progress Updates)

I know, I know... I've been a blogging slacker lately and I suppose you all want to know what Elijah has been up to. Well, he's been getting into trouble...and that's a good thing! Who woulda thunk that'd be a good thing?!

Elijah's eyesight has defintely improved. Yes, he's still visually impaired, but he's looking up more and giving more eye contact than he ever has in the past. Exciting stuff.

With better eyesight comes improved ability to learn about the world around him. He plays with the blinds on our windows, pulls down the curtains on our entry door, gets himself behind our couch, and plays in the dirt in our potted plants. If he could figure out how to open the door to our bathroom, he'd be playing in the toilet bowl (yep, he did that once). Just today I was thinking I might have to do a better job of baby-proofing our house. The boy is two and I haven't really had to worry about him getting into things (this much) until now.

The other thing that has been improving is Elijah's hands. I see him spontaneously opening his hands more often. And, every once in awhile I'll see him crawling with his hands all the way open. Let me emphasize this point...crawling with his hands open is so awesome! Why? Because keeping his hands open while he weight bears will strengthen his little hands and will help him do even more with his hands in the future (at least I hope so!).

Speaking of the future, I see speech as Elijah is making improvements in this regard too. He's doing better chewing and eating and does mimick sounds occassionally (usually with his speech therapist). Last week his therapist was saying all of these sounds (Mamamama, mooomomoomooo, baabaabababa) as Elijah watched her face intently. His little lip quivered like he wanted to say something too, but didn't. We moved on to something else. But a minute later, Elijah started saying all the sounds she had made. I know it's just sounds, but it gives me hope that he will indeed talk. My hope is that by the time he is three we could have some consistent words from little dude. Let's hope!

And my favorite update...We play this little "I'm going to get you game" together. I say "I'm going to get you" and he curls up and smiles at me. I grab him and tickle him and he laughs. Then, I'll lie on the floor and Elijah will come up to me and fold himself on top of me with this mischevious look on his face. He's "getting me!" So fun!

Phew! I know I haven't updated for a long time, which means a long post. Sorry. :)

It's going to be a little hectic here for awhile, so to tide you over, here's a video that was taken at little man's birthday party. Notice how dirty the little guy is. He had so much fun that day.

This one's for you, Grandpa John...

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The Hardest Thing

I'm sure some of you are wondering how Elijah's GI study went on Monday. Well...let's just say it wasn't fun. Elijah wouldn't drink the barium from a bottle, so the nurse had to syringe the liquid into his mouth while he stayed on his back. Elijah hates lying on his back. And he doesn't really like having things shoved in his mouth either (Uh, I wonder why). The doctor looked at Elijah's insides via an x-ray, but it was too difficult to get a good picture because Elijah was so upset. The poor little man was screaming his head off and it was so sad that I almost started to cry. I was pondering punching the doctor and nurse, grabbing Elijah and running out the door when I remembered this was all our fault that he was having this study done. Besides, the doc and nurse were really nice. So, I held back my fists and my tears and told Elijah it was all going to be okay. And it was.

The doctor was able to see some things via the x-ray, but it wasn't a complete study. From what the doctor did see, he didn't think there was anything structurally wrong. So, that'll have to be good enough. Little dude leaks…hopefully (eventually) the stuff that should be in his belly will stay there.

Hmmm, I hate torturing my child; it feels like the hardest thing when I can't save him. (Oh, and don't worry, I wouldn't hurt a fly. Well, a fly -maybe. A doctor or a nurse - no way).

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Things that Give me Hope

It's been busy here in Elijahland! We took a trip to Ohio recently to attend Elijah's tenth wedding. Yes, you read that right – tenth wedding and he's only two! I love weddings (Congrats Mitch and Dana!) Elijah's favorite part of our trip? Getting to swim in the hotel's pool (see pictures)...

Little man has had appointments almost every day since we've been back, sometimes two in the same day. And we've been preparing ourselves for my favorite time of year – the Fall Holy Days. Did I mention we're BUSY?!

Last week, we had two doctor appointments I wanted to write about: the gastrointestinal doctor and his optometrist.

Dr. Tummy
Early last week, we took Elijah to a GI doc; let's call him Dr. Tummy. J

Elijah likes doctors. He hardly noticed the nurse when she was talking to us, but when Dr. Tummy entered the room, Elijah's eyes lit up and he walked over to the doc. He stood right next to the doctor with his hands on the doc's leg while Dr. Tummy spoke with us. I asked the doctor to tell me if having Elijah standing there touching him bothered him. He was in the middle of telling me that it was okay, when Elijah leaned over and bit him! "Okay, back to mom!" Dr. Tummy said. Elijah has never done that before and I didn't really know what to do. We apologized of course and the doc seemed un-phased, although he didn't want Elijah anywhere near him after that. What's a mom or dad to do?! The only thing I can think of is that Elijah was trying to get the doctor's attention because Dr. Tummy was ignoring him. Who knows, but I think we have trouble on our hands.

Dr. Tummy went over Elijah's Esophageal Reflux Study (the one we did in correlation with his sleep study a couple months ago). Elijah, during the study, refluxed 15% of the time (it's normal to reflux up to 4%). For seemingly, the millionth time, Andy was asked if he had a medical background! Hilarious…apparently if you know things about your child's condition, you must be a doctor - right?

Reflux in children with neurological issues is really common since the brain has to communicate with the body in order for the body to work properly. So, it seems, Elijah's brain isn't telling his body to process his food fast enough, so it comes back up. That combined with the fact that he doesn't have the best posture (partially because of his vision) cause reflux to occur.

Just as we thought, there really isn't a good solution to reflux. Drugs or surgery are basically the options the medical community suggests. Neither seem like a good option if you ask me, but doing nothing isn't a good option either (reflux, if untreated for a long period of time, can damage the esophagus and can lead to a greater risk for cancer). Drugs reduce the acid in your body and acid is important to carry things throughout your body – and specifically important for brain-building nutrients to absorb into his system. Since Elijah already has issues with his brain, that doesn't sound so great either. And surgery, do I even need to say why that's not so great? We've tried some natural methods, which haven't seemed to help, and his diet is already so limited I'm not sure we could really change it. It definitely feels like a catch-22 kind of situation.

So, this Monday (tomorrow) we'll be doing an upper-GI study to check and make sure there isn't anything structurally wrong that is causing Elijah to spit-up. Once we get the results, we'll have to make some sort of decision as to how to proceed. (Some prayers for a calm boy tomorrow would be much appreciated. Drinking barium and being strapped into a seat doesn't sound fun).

The good news? I asked if Elijah could grow out of the reflux and Dr. Tummy said that he could. He mentioned that it's perfectly normal for kids to spit-up until the age of 18-months. Since Elijah is behind developmentally, hopefully his brain will get better at communicating with his body and the reflux will eventually be a thing of the past. It's definitely something that gives me hope.

Dr. Optimist
Late last week, we saw Elijah's Optometrist. Elijah's eye doc holds fast to his nickname…he's so optimistic and I love that. We weren't supposed to see the eye doc until November, but Elijah has been spontaneously covering his right eye for over a month and it was causing us some concern. Thankfully, Dr. Optimist isn't worried about the fact that Elijah will cover his eye. He doesn't do it all the time and while his eye does cross, it's minor and the doc thinks it will only improve over time.

The reason the doctor is optimistic is that Elijah's vision does continue to improve. So much so that the doc thinks that at some point Elijah may not even need glasses! (This, unfortunately, doesn't necessarily mean that he'd no longer have cortical visual impairment...which is a completely different issue. But, that can change too, and it has). Based on their tests, Elijah got a new prescription for his glasses – which is half as strong as it used to be! We should get his brand new glasses this week and I'm really excited to see what kind of difference the new prescription could make in his development. Exciting stuff and something that definitively gives me hope.

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Things I NEVER Thought I Would Say to My Child

Have you ever told your child, "Good Temper Tantrum"? I have.

Yes, those words have actually come from my mouth recently.

Here's the deal...when your child doesn't develop on the "typical" time frame, sometimes you rejoice over things that other parents wouldn't notice or might even take for granted.

Elijah self-bites when he is happy and even more so when he isn't getting his way. The self-biting is the bane of my existence at times. Sometimes he bites so hard that he breaks the skin. He has a perpetual wound on his right hand that never heals because he always reopens it.

So, when he recently had a temper tantrum and did two really awesome things I told him "good temper tantrum"; I couldn't help myself. One - he didn't bite himself! Two - he stomped one of his feet on the ground. Might not sound like much, but think of the physical balance it takes to stomp a foot. It was exciting for a multitude of reasons and much more appropriate than biting oneself. So, good temper tantrum, right?!

It makes me think of all the things I've said and/or hoped for Elijah that I never thought I would. Sometimes when he chokes on something, I'm silently thankful that he can gag. There was a point in time when we didn't know if he ever would. When he's whining, I can't help but think about the fact that we didn't know if he would ever cry. And, though he cannot yet speak, I continue to believe that he will one day find his voice, just as he found his cry a little over two years ago.

And I think that's the beauty of parenting a child with special needs. We notice things that most people wouldn't. We rejoice over every accomplishment, no matter how small it may seem to others. And, yes, sometimes we say things that are seemingly as ridiculous as "good temper tantrum!"

(Oh, and just to be clear...I don't plan on continuing to praise temper tantrums. I'd like to eliminate them altogether, but right now I think it's good to encourage a more appropriate way to express his anger.)

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Flashback: A Dad's Love

Two years ago, we'd only had Elijah home for a few days. We were getting accustomed to caring for him full time. We were (are!) madly in love with the little guy. I wanted to share this early picture of Elijah and his daddy. Elijah was less than a month old...

























So precious isn't it? Such a sweet little moment between father and son.

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Flashback: Two Years

Two years ago we took Elijah home from the NICU/ICC. He was three weeks old. I don't think any words can express the joy of those first moments after we'd walked in our front door. I'm forever grateful that Andy thought to capture this moment...

My face says it all. I was crying tears of joy and feeling absolutely overwhelmed with peace and joy. Looking at the photo two years later, my eyes still fill with tears. It definitely ranks as one of my favorite photos of all time.

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Dr. Nice Guy

We visited Dr. Nice Guy tonight, Elijah's rehabilitation medicine doctor (also known as a physiatrist). The doc was pleased to see that Elijah continues to improve in his motor skills.

We're looking into getting new hand splints for Elijah. He has outgrown his old ones and since he still keeps his thumbs abducted, the doc thinks new braces might help him as he's now exploring his world more. We asked again about Surestep and Dr. Nice Guy doesn't think Elijah needs any foot orthotics. "His feet look better than my six-year-old's feet!" he said.

We had read in Elijah's medical records that Elijah has spastic quadriplegia cerebral palsy (spastic meaning the muscles are tight and quadriplegia meaning all four limbs are affected) and I wanted to know what Dr. Nice Guy thought. So, before we left I asked the doc the million dollar question: "What type of cerebral palsy does Elijah have?"

The doc chuckled. "That's a good question." He went on to describe the different types of cerebral palsy and how depending on which doctor we talked to, we'd probably get a different answer from each one. He mentioned that he rarely sees kids like Elijah –usually if they're walking as well as he is, their hands would be looser too. The doc thinks that Elijah's motor skills will continue to develop as he gets older, which is obviously great news.

He talked to us about a newer way of classifying cerebral palsy, called the Gross Motor Function Classification System (which we had heard of before). He mentioned that any doctor we talked to would agree that Elijah is a level one, which is the mildest form of cerebral palsy in that classification system. Dr. Nice Guy didn't want to commit to a specific CP type, so I guess Elijah is a level one and we'll leave it at that.

This is good news, so why am I not happy?

I have to say, I left the appointment with such mixed emotions. On one hand, the doc seemed to think that Elijah's motor skills will continue to develop so much so that at some point his cerebral palsy might not even be apparent (!!). Amazing, right? Awesome! Physically, he really is doing so, so well.

But (and isn't there always a but?), he foresees Elijah's disabilities as being more cognitive than physical. I suppose we've known this for awhile now, but it's not an easy pill to swallow. I'd be lying if I said that I'm okay with this. I'm not. What I wouldn't give to be able to have a conversation with my child, even if that meant Elijah told me how much he disliked me. Is it horrible for me to say that I'd trade in some physical stuff for ABC's and 123's? Does it make me a horrible parent to admit that? I've known for almost two years that anything Elijah was able to do would be a miracle. He is a miracle - no matter what. I'm mad at myself for even feeling sad about it.

The future is scary sometimes. I wonder what we'll be able to teach Elijah and what he'll be able to understand. I get weary thinking of school and how we'll probably have to fight for him to get him the things he needs. I worry about his seemingly fearless attitude and how he doesn't seem to grasp personal safety. And, yet, I feel incredibly stupid even saying these things. How can I be sad when we weren't sure he'd even be alive? How can I be sad when he's running around our backyard? Have I forgotten how far he has come? Have I forgotten the parents who would probably kill to be in our shoes?

It's at these times that I step back and remember what's important. What do I want for my child? I want him to be happy. And he is. He loves his life. I want him to know God. And I'll do my best to teach him. By no means am I giving up on him. Nothing is new here. Elijah acquired a significant brain injury at birth. That injury, for whatever reason, affected him more cognitively than it did physically. He has come a long way in the past two years. Who knows what he'll be doing in two more. Perhaps once he conquers all the physical stuff he'll be able to conquer the world. I'm a firm believer that with God, anything is possible and that prayers work. That, however, doesn't mean it isn't hard sometimes.

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Birthday Boy (Lots of Photos)

Here is the two year old on his birthday...

A couple days later, we had a small party to celebrate Elijah's two-ness. He ate sloppy joes for the first time and like most little kids, he liked the wrapping paper more than his gifts...

Hmm, I wonder where Elijah and I get our silliness from?

I made dairy-free, egg-free, and gluten-free Elmo cupcakes for Elijah's birthday party (well... mostly "free" - the frosting most likely had some "hiden" gluten in it). The cupcake wasn't received quite as I had hoped...
















But, after playing outside for a bit, Elijah was ready and willing to destroy his cupcake. Good times indeed.

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