G.I. - Got Intestines?

This was taken in Aug., when Ethan was having the endoscopy and the impedence test done, to see what was going on in his tummy. The head wrap is covering 26 electrodes that were glued to his head for an EEG and sleep study. I love this picture because you can see him smiling through his pacifyer. Even with a probe down his throat, his essence shines through.

Here is Ethan getting his hair washed after the electrodes came off. He enjoyed it and charmed the nurses during the process.

So Today was G.I. Day for E-boy. It's too bad he's had to endure the pain, the tests, the meds, the inability to really enjoy food, the sleep deprivation, and the genral irritability that this has caused him. Yet despite all that crap, this little guy has such a sweet and fun little personality. That's a blessing.

The appointment went well, though we did miss our sidekick, "Aunt Penny". She has been through several Cincinnati visits with us and I always enjoy having someone with her attention to detail and intelligence to debrief each visit with. Especially big ones like this one.

Ethan is doing great, no changes were made to his meds or the doses. We're going to split up the prevacid and give him some at night in the hopes that he will sleep better. The doc suspects that reflux has been waking him up at night, and I hope he's right and we can manage it to a level that allows him (well, both of us) to sleep more than 2 hours at a time.

I also had the good fortune of speaking to a nutrionist, an unplanned and much needed experience. I'll spare you those details, except to say that Ethan is not considered a case that they would describe as "failure to thrive", in spite of the fact that he's at the 3rd percentile for weight. We all agreed that he started out small (4 lbs.) and it will take time to catch up.

{Related Tidbit} - the speech therapist has been working with him on oral motor/feeding issues, i.e. fascinating!

Random thoughts

There isn't much "news" to report from Ethan's world, but a little update seems in order at this time. And I wanted to post this cute picture :-)

Ethan continues to amaze us by tolerating his glasses and generally leaving them alone. He pulls them off 3 or 4 times a day, usually with the goal of manipulating me into some sort of action. He must really like the view (despite the bite marks) through his new lenses.

Ethan is mastering the art of imitation, like most kids his age I suppose. He has been repeating vocal patterns on a pretty consistent basis. For instance, he sort of hums the pattern that he hears, if we say "bop bop bop", then he hums "mmm, mmm, mmm". It seems like a logical first step toward speech, but I've never seen a child do this, so I wonder if it's unique to the implant, or if hearing children start talking this way as well.

E-boy has learned how to protest by way of tantrum-like behavior. Luckily, there is only one way to induce this behavior, and it's fairly short lived. The boy loves his bath, so when you remove him from the tub you better prepared to manage some serious displeasure! I have to look away as I'm wrapping the towel around him, otherwise he might see me laughing and that wouldn't be good. I can't help it, his mad face is the cutest and funniest expression he has. Someday he's going to be sitting on a therapists couch, and all of his issues will come down to the fact that his mother forced him to wear tons of head gear and laughed at him whenever he was upset.

Emily and Ethan

Just wanted to post this adorable picture of Emily taking care of her little cousin Ethan. Every time Ethan's implant fell off his ear (which is all the time when he's moving) his cousin was there to secure it for him. She's as sweet as she is beautiful.

Ball Pit Mania!

This is Ethan with his physical therapist, having about as good of a time as I think he's ever had! He's wearing the Benik body suit, but I didn't get any good shots of the bottom half. As soon as we get to PT Ethan crawls his fastest to get to that ball pit. The pit is supposed to be a sensory stimulating environment, and it obviously seems to make him happy. He can't get enough!

His PT's say that physically he has made huge strides. They are very pleased with how he has progressed, so now the focus is on his sensory processing issues. Between the cochlear implant and the new glasses he is experiencing a sensory explosion. The Benik suit is something that we've only been wearing in the evening, in the hopes that it will help settle his nervous system which never seems to regulate itself very effectively. We're also using melatonin before bed each night. He's been sleeping much better lately, which makes everyone happy!

He Can See!

Here he is in his new glasses! (Just ignore the milk all over his shirt, please) To our amazement, he wears them for several hours at a time without many attempts at removing them. Yesterday was his first full day with glasses and he only pulled them off 2 times. It's tough keeping the implant on over the stem of the glasses, but it does actually work. He pulls the implant off more than the glasses at this point.

We are also amazed at how poor Ethan's vision has been. He is really hard of sight! When I hold up his glasses and look through them I can barely see. The prescription is very strong, much stronger than in my own glasses. No wonder he leaves them alone, he can finally see!

I'm looking forward to seeing if having this new and improved vision will help him with balance or fine motor skills. He hasn't learned to stand on his own yet and I would bet that part of the problem has been his inability to really focus. His fine motor skills have slipped over recent months, for instance, he can't put pegs in small holes on a peg board. He probably hasn't been able to see those holes!

Growling and Glasses...

We reached a pretty big milestone this week. Ethan is making his first attempts at imitating sound. I had incorrectly assumed that he would start by making the "ba ba" or "da da" sound, or something along those lines. Instead we've got a Bear! Whenever we sign the word "bear", he attempts to make a growling sound. It's barely audible, so you really have to be quiet in order to hear it, but it's getting a little louder and more gutteral each day. Needless to say this is super exciting to witness only 3 months after getting his implant activated.

Ethan is getting glasses! He is farsighted and has an astigmatism in each eye but it's much worse in the right eye, the one that keeps turning out. He's going to look pretty adorable in them, when he allows them to be on his face that is. We only caught glimpses of him in them at the office. She assured me that he'll realize how much better he can see with his glasses on and will want to wear them. I hope she's right. I'm a bit stressed about trying to keep his implant on over top of the glasses. It will be trying, but we'll get it through it I guess.

Ethan had a wonderful Christmas. He got to spend a week with Grandma and Grandpa Snedeker in Virginia. He's really enamored with dad, a real grandpa's boy. He just lights up when they're together. Not to say he doesn't love all of his grandparents, but there is something special between those two. Santa gave him a scooter that converts into a walker and he has been pushing that thing all over the house. His physical therapist was really impressed with his new walking skills. It won't be long before he's just taking off on his own. Grandma Snedeker taught him how to give kisses and so far she's the only one he gives them to!

Christmas at the Innis ranch was really fun. We got to see all of Ethan's cousins and aunts and uncles. His cousins are all very good with him, but Emily won the award for having the most patience with the cochlear implant. She was always on the ready when his implant would come off and did a fantastic job of getting it back on his head and ear. Ethan got lots of fun toys and enjoyed all the attention from everyone. We were sad to have to go home as we only see our Maine family once a year. We're determined to change that by going for a visit this summer.

I'll post pictures as soon as they're available, promise.

xoxo
Heather