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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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?

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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!).

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