Wednesday, October 28, 2009


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.

Friday, October 23, 2009

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.

Wednesday, October 21, 2009

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.

Monday, October 19, 2009

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.

Saturday, October 17, 2009

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.

Thursday, October 15, 2009

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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