Thursday, July 30, 2009

Sleeping during a Sleep Study? HA! (Understatements and Good News)

Our son is an awesome little trooper! He did so well yesterday and last night for his Polysonogram (Sleep Study) and Esophageal Reflux Study.

I have to say, you all must have prayed hard for us. Elijah handled the whole ordeal like a brave little boy and was such a sweetheart.

Granted, it wasn't fun (that's probably an understatement). We are definitely glad it's over.

To start the day, the diagnostic technicians put a reflux sensor through little man's nose into his esophagus (that's what you see taped to his nose in the pictures). Elijah didn't like it (that's probably an understatement). He didn't like being held down, nor could he understand why I wouldn't let him down from my lap afterwards. He fussed...a lot (that's probably an understatement).
Eventually, the little guy resigned himself to the fact that he wasn't going to be able to get down from my lap. We spent all afternoon and evening in a rocking chair playing with toys. What a trooper! I was glad that we were allowed visitors (something we didn't know until the last minute). Aunt Karen dropped by for a couple hours and daddy came after work. All in all, the day went by pretty fast.

Then came time to sleep. Ahh...sweet sleep. Right before bed, they attached a whole bunch more tubes and sensors. Um, we didn't get very much sleep (that might be an understatement). Elijah, who has been sleeping through the night in his own crib more often than not, was up about 50 times (okay, that might be an exaggeration). In the middle of the night, they pulled a bed into our room so that Elijah could sleep with me because he was so restless. That helped, but neither of us got much sleep. Poor guy. I was having a hard time sleeping. I can only imagine trying to sleep with all that stuff taped to me.

BREAKING NEWS! YAY!!!!! I got a call from the sleep doc as I was writing this (we weren't expecting news for a couple of weeks).

There is good news and bad news...The good news? Elijah doesn't have sleep apnea! Woohoo. Happy dance time!

The bad news? Elijah has pretty severe reflux...which, honestly isn't that big of a surprise. The great thing is that his reflux isn't causing apnea, which is what worried us. So, there you have it. A test summary and results all at once. This is really, really good news. Now we just need to figure out what to do about his reflux. We'll be waiting for a report from the GI doctor.

Even with all that stuff attached, our little dude managed to give us a cheesy smile. What a sweetheart our boy is! Who can resist that cute little face?

Tuesday, July 28, 2009

Sleep Study - Tomorrow

I am so not looking forward to tomorrow. Tomorrow morning (the 29th), at 11 am, Elijah's sleep study starts. Yes, his sleep study starts in the morning. That's because he's having a Polysonogram Study AND a Esophageal Reflux Study. Sounds fun, doesn't it?

To start off the day, Elijah's going to have a tube (sensor) placed into his esophagus through his nose. I am feeling sad about this already. He's not going to like it (um, neither would I!) and I'm not going to like watching it either.

I just finished packing Elijah's and my overnight bag for the hospital. It's a weird sensation packing for a night at the hospital. I wish I was packing for a fun excursion - like a water park...Elijah would like that. The overnight excursion we are going on...I'm pretty sure Elijah isn't going to like it.

But, of course, I'm aching for some answers to his sleep issues. We need to get this resolved and so I'm anxious to get this study over with.

There's a lot of reasons that I dread this experience. The memories it stirs up is certainly one reason; I'm not exactly looking forward to seeing our little man attached to a whole bunch of wires, which will definitely remind me of darker NICU days. But, the thing that makes me the most nervous is the fact that Elijah won't be able to move very much. This little man loves to walk and he loves movement. If he's not walking, he'd like to be in a swing or in a stroller. 18 hours of watching movies, reading books, playing with toys (and hopefully sleeping) while sitting in a crib is not Elijah's idea of fun. Really, though, what (almost) two year old would find staying in bed all day fun? Add that to Elijah's visual issues and his fine motor delays and it seems kind of like torture. And mommy? She's not going to be able to save him. And that's going to see like torture too.

We covet your prayers for tomorrow. Keep us in your thoughts and prayers, because I'm pretty sure the only way we'll get through the next day and night is if God grants Elijah a calm spirit (and me too!).

Friday, July 24, 2009

Let Me Hand it to You

When it comes to gross motor skills, Elijah is basically on schedule. He’s walking, running and jumping all over the place. At first glance, he looks like any other 23 month old – something that causes us to rejoice each and every day.

He’s doing so well in his gross motor skills, in fact, that he’s not doing any physical therapy at this time. According to his therapists, Elijah is doing everything he should be doing at this age. That doesn’t mean he doesn’t still have gross motor delays. He’s doing everything he should be when you take into consideration his vision and fine motor issues, i.e. it’d be hard to climb playground equipment if you can’t really see it; it’d be hard to throw a ball (a gross motor skill) if you can’t hold onto a ball (a fine motor skill).

This brings me to one of Elijah’s biggest challenges: the proper use of his hands.

Looking back, Elijah has always been reluctant to use his hands. He’d prefer to use his feet or let his abs do the work instead of his fingers. Once Elijah could hold up his head, he wasn’t willing to lie down. He’d attempt to sit up without using his hands (do you have any idea how much work that takes?! Go ahead – try it – hold your head off of the ground for a few minutes at a time, you’ll have a six-pack in no time).

Recently Elijah has been using his hands much, much more. If you don’t understand what a struggle it has been for him, you won’t understand how significant this next statement is…
Elijah is picking things up from the floor.

That sentence is profound. We’ve been waiting for so long to see Elijah simply pick something up and now he’s doing it. It may not seem like much, but this has really been a breakthrough. I love seeing him walking around the house with various items. Rings, rattles, towels, a cloth book, his shoe. I even rejoice when he pulls down the curtains…well...maybe not

All I know is that things are changing in Elijahland and we couldn’t be more thrilled.

Wednesday, July 22, 2009

The Fourth, the Fifth, Camping and Cousins

We've been having a lot of fun in Elijahland lately, which is the main reason for the lack of updates lately. I wanted to share some highlights from the month of July: The Fourth, our Fifth Anniversary, our week camping and a trip to meet Elijah's new cousin, Eden.

The photo is from our first day camping, which was also the day Elijah turned 23 months old. The photo is indicative of our boy these days - always moving.

We had a fun Independence Day, celebrating with sparklers and a campfire in our backyard. Elijah wasn't so sure about the sparklers.

July 11th was our fifth anniversary (hard to believe it's been that long)! To celebrate, we spent our first weekend away from the little dude (Elijah hung out with Grandpa Dennis and Grandma Kathy). It was really good for us to get away and reflect on the last five years. We stayed at a bed and breakfast (a first for us!), pretended we were kids again, and talked about Elijah - a lot. Mostly, though, we just relaxed and got some much needed sleep.

After our weekend away, we packed up for a week of camping with family. We all had a blast.

Daddy and Grandpa got to go fishing...

Elijah went swimming...

Elijah, Grandpa John, Grandma Teri, and cousin Henry.

Elijah, his parents (that's be us!), aunties, uncle, and cousin Henry.

It is possible that Elijah got lots of love and kisses.

After our week of camping, we took a short trip to meet Eden, Elijah's two week old cousin...
The happy family of three :)

Andy, me, Elijah and cousin Eden. She's so cute! (Oh, and excuse my cheesy grin. Thanks).
We've been busy lately and having a lot of fun. I think we might stay home for awhile, though.

Saturday, July 11, 2009

Five Years Ago...

Wednesday, July 8, 2009

I See You!

As promised, here is a video of Elijah playing peek-a-boo. It is so exciting to see him doing this. He is using his hands much more often, mostly picking up cloth things (anything hard or heavy is hard to pick up). I LOVE this video. It makes me smile every time I watch it. I hope it brings all of you a smile as well.

P.S. Yes, that's an owie on his forehead. Poor fellow fell outside - it's all healed up now...except he has an owie on his knee at the moment. Being a boy in the summer is fun, huh?

Sunday, July 5, 2009

The Second Thought

When Elijah accomplishes something new, my first thought is overwhelming joy. My second thought is usually full of fear and grief.

When Elijah crawled, I was on cloud nine for about a week…and then I started to wonder if he'd ever be able to walk. Elijah's first steps were so amazing. I was beyond thrilled. I knew how miraculous his steps were. My second thought was, "Will he ever learn how to read?" It's kind of irrational, isn't it?

Recently, Elijah learned how to play peek-a-boo with a wash cloth. It's so incredibly cute and so exciting to see him interacting with us in this way (I hope to post a video of it soon). But, my second thought was, "A six month old can do this."

I'm actually ashamed to admit these second thoughts, but I think it's important to share. The highs and lows of parenting a child with special needs are intense. When you don't know what your child will be able to accomplish, each and every obstacle they overcome is thrilling and amazing. But, there is also a deep sadness – a grief over what they should be doing.

We, of course, love and accept Elijah for who he is. But, like all parents, we will continue to push him to be his best self. I hope someday my second thoughts won't be thoughts of fear over the abyss that lies ahead, but instead – something like, "Hmm, I wonder what I'm going to make for dinner." I hope at some point I can embrace my joy without having it wrapped up in grief. Somehow, I'm not sure if that is possible. But, then again, my second thought is that anything is possible.

Friday, July 3, 2009

Aqua Man

Aqua Man sounds kind of like a superhero, doesn't he? Shhh, don't tell anyone. We don't want everyone to know of Elijah's other idenity do we? I know his secret is safe with all of you, right? (I'm totally comic book illiterate, so if there really is an Aqua Man, feel free to enlighten me).

In totally unrelated news to Aqua Man (wink wink), Elijah really loves the water. Andy had the day off work for the holiday, so we decided to head to the park.

Last year, we tried swimming lessons. Elijah was all smiles before getting in the water, but screamed once lessons began. He screamed so much that he put himself to sleep. Poor fellow. We decided enough was enough and after a couple of sessions of screaming, decided to never come back for the rest of his lessons.
June 12th June 12th
The water when we went camping a couple months later was a little better, but Elijah still wasn't so sure...
Camping! - July 14th
So, when we headed to the beach today, I wasn't so sure that Elijah would have a good time. He was a little apprehensive at first...
7-3-09 7-3-09
...after a few moments he decided he wanted to go deeper. Turns out that he really likes the water and the beach. I got a bit wet. I was totally unprepared for an Aqua Man and hadn't brought a suit for myself or even a towel (we dried off with a blanket). He had so much fun. It was an absolute joy to watch.
7-3-09 7-3-09
When we got home, we decided to see if Elijah wanted to play in his swimming pool for the first time. The water was cold, so we didn't think he'd want to get in. Turns out, he did want to get in and had a blast splashing in his pool. He cried when he had to come inside.
7-3-09 7-3-09
Then, it was bath time to get clean and warm. And off to bed. Enough water for our Aqua Man -(er, I mean Elijah) today? I think so.
Have a great Independence Day!

Thursday, July 2, 2009

Sing us a Song...'re the piano man! Sing us a song tonight! (Billy Joel, anyone?)

Elijah's favorite toy at the moment is a piano that was given to us by our friend Barbara. It's so fun to watch him pound on the keys - and it's helpful in that I know where he is when he's playing (and can therefore get some things done).

The video is a bit on the long side - what can I say? - I couldn't edit out much of our little man's recital. Plus, there's a moment where I tell him to do something and I know he understands me. It's a reminder that he probably understands more than we give him credit for.

With no further ado, here is the piano man...
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