Tuesday, September 29, 2009

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...

Wednesday, September 23, 2009

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).

Sunday, September 20, 2009

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.

Sunday, September 13, 2009

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.)

Monday, September 7, 2009

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.

Friday, September 4, 2009

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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