Saturday, August 30, 2008

KItt Kat, Where are you?

One of our cats has been missing since Tuesday. Kitt Kat is extreamly friendly (borderline obnoxious), and he likes to make his rounds of the neighborhood for attention and possibly a snack. He has been gone for a night before--usually because he was accidentaly shut in the neighbor's garage--never this long. We went out looking for him yesterday afternoon, but no luck.

Baby Kitt Kat


Come home soon...we miss you!

Saturday, August 23, 2008

It's Official...We Have a "Walker"

Evan has been cruising along the walls and furniture, intermingled with a few "hands free" steps for some time now. Today, Grandma and Grandpa Key were babysitting and he decided to take a few series of steps with just a little wall or table touch in between to steady himself. And he's just kept doing it all afternoon long. Daddy is working on getting some video to post. We are super thrilled!

Children with CHARGE Syndrome start walking on average at 3 years. Evan is 37 months. While we had been working with his PT and OT, hoping he would walk sooner, he is pretty much on target. Considering all the abnormalities in his vestibular (balance) system, the fact that Evan--or any child with CHARGE, for that matter--can compensate and learn to walk is absolutely amazing.

Evan, you just gave mommy the best birthday present ever!

Incredible Developmental Strides (otherwise known as Troublemaking)

Look at the stregth of this impressive gross-motor feat--standing on the back of the couch (this is how Evan got himself in trouble with the bread box)

Very nice fine motor--that finger is ready to start pointing Evan! (this was the last light switch in the house that hadn't been turned on-and-off-on-and-off about 50 times--it's definitely broken in now)

Understanding "inside" vs. "outside" the dryer. If we could teach him folding, we'd be set.

Demonstrating riding "on" the vacuum cleaner.

Wednesday, August 20, 2008

Oh No...Evan!

Tonight was another first for Evan...unfortunately, not one of mommy's favorites.

At approximately 6:30 pm, a loud crash was heard coming from the kitchen. Upon entering the room, Sarah Storrs encountered the shattered remains of the lid from her ceramic cherry breadbox (a discontinued breadbox, mind you). She observed an approximately 3 foot tall white male slinking down from the couch and leaving the crime scene on all fours. The suspect, Evan Storrs, age 3, was later apprehended in the living room. Choosing to invoke his Miranda rights, Mr. Storrs' only answer when asked what led to the vicious breadbox attack was "Aaarrrrgggghhhhh!" Investigators at the scene have concluded his MO was climbing onto the back of the couch, reaching over the half-wall separating the living room from the kitchen, grabbing the breadbox lid and throwing it onto the kitchen floor. The suspect is being held without bail, pending the determination of an appropriate punishment--most likely loss of Sit-n-spin privileges for one day. Any information leading to a replacement breadbox lid is appreciated by the victim's family.

The victim:

The suspect (doesn't he look guilty!):

Saturday, August 16, 2008

Struttin' Our Stuff

This morning Evan and I marched in the Junior Rodeo Kid's Parade in Downtown Ellensburg. This was Evan's third parade, and I was hoping it would be the first parade he would actually walk in. I decorated Evan's walker with ribbons and signs with the fair theme this year "Strut your Stuff" (it seemed so appropriate!).

Evan had his own ideas, though. Thinking he would get tired and not walk the whole route in his walker, I pushed him to the start in his stroller. He wouldn't walk in the walker at all. It was really bright and hot, so I can't say I blamed him. I ended up pushing him the whole way in the stroller, "wearing" his walker on my hips. About every 10 steps I had to stop and pull the walker (and my shorts) up. I'm sure we were a sight.

He did pose for one picture (in the shade, off the parade route). I'm thinking unless Evan can walk or ride a bike next year, we'll probably skip the parade. It wears mommy out!

Cochlear Implant Update

Thursday was supposed to be our "parents" psychologist evaluation for Evan's CI candidacy. Unfortunately, we were a little bit confused--Jeremy thought this was the appointment the psychologist would be evaluating Evan, and he also thought there was a second appointment at 9 am. It turned out, Evan was only scheduled for one appointment (at 3 pm!). Luckily, the psychologist was flexible and able to see Jeremy in the morning.

So only one parent was available to be evaluated. I felt bad, because I did want to be there. But even if I had known, I probably would not have been able to take time off work (it's been a slow summer, and I can't afford to lose any cash flow by rescheduling patients). I hate having to make that choice, but I guess someone--whoever chooses to work outside the home--always has to make it.

I think our expectations are reasonable. The joke between Jeremy and I is that we would consider the CI a failure if it didn't cure Evan's CHARGE Syndrome. All joking aside, we understand Evan is really Deaf-plus. And we know the "plus" part complicates the outcome. Even a little improvement, if he could just hear some enviornmental sounds, we hope would benefit him.

One decision that was made at the psychologist evaluation was to postpone Evan's psychologist eval and meeting with the surgeon until after the MRI and BAER under anesthesia are obtained. This was going to be September 23rd, but will probably be sometime in October now. Evan's AWESOME urology surgeon, Dr. Lendvay, agreed that both these tests should be done under the same general anesthesia as the urology surgery (to minimize the number of times Evan has to "go under"). The bad news was the surgery has to be pushed back until Dr. Lendvay has a big enough opening in his OR schedule. So we won't have any more CI candidacy appointments until later this fall.

Tuesday, August 5, 2008


A popular result for Evan, Monday's behavioral test in the booth was once again inconclusive. He cried the whole time.

He is scheduled for a repeat try in another week or so. Jeremy is going to try bringing a booster seat from home for him to sit in (he had to sit in one of those restraunt-style highchairs, which aren't very supportive). The audiologist will also defer looking inside his ears until after the test next time--this never fails to elicit a good rise out of Evan, and it's hard to calm him down after.

Plan B is to obtain a BAER with Evan's hearing aids and also with a bone conduction aid. This would be done while he is under general anesthetic, at the same time as the MRI and urology surgery. An "aided" BAER is not routeinly done, but it would be some kind of baseline to have in the event we never get a conclusive behavioral test.

I wish there was a way to make Evan understand the "hows" and the "whys" of these tests. But if we could communicate that to him, we probably wouldn't be considering a CI in the first place...

Sunday, August 3, 2008

Hot Off the Press...Elmo Sprinkler

These are from this afternoon. Enjoy :)

Link to Deaf Village

I added another link to our "Favorites" list. Deaf Village is a blog of blogs (if that makes any sense). You can view posts from all different blog authors about all different topics relating to hearing loss and deafness. I submitted our blog last week, and was surprised to find one of my posts made it onto Deaf Village (it wasn't even the one with all the information about the CI!). Anyhow, if you haven't seen it yet I encourage you to visit Deaf Village and read some of the blogs. It's a really great source of information from people who have been there.

Cochlear Implant Progress

In case you haven't been through it (and I realize probably a larger percentage of Evan's blog readers have, vs. the general population), getting a cochlear implant is a long process.

There are a lot of appointments as part of the evaluation. If Evan is determined to be a good candidate and we proceed with the surgery, there will be appointments associated with the surgery (pre- and post-op). Then there will be lots of appointments afterwards to "map" (adjust) the CI and lots of therapy appointments to help Evan maximize his use of the implant.

Tomorrow, Evan and Jeremy are going to Children's to have another hearing test done. He's had quite a few already, but they want to attempt another behavioral one as part of the evaluation. This is the test where Evan is in the booth, and they condition him to look at a moving animal when he hears a sound. The very first time Evan did this test (about a year and a half ago now), he was somewhat cooperative and the audiologist got some results that indicated a moderate hearing loss with one of the aids on. The results were not super-reliable.

Unfortunately he has never performed better on a behavioral test since then. Usually the test is scheduled on a day he has other appointments. So either he's cranky from being poked and prodded during an appointment before the test, or upset because he's just been in the car for two hours. We have tried taking him in for just the hearing test, but he didn't do any better (and that's frustrating for Jeremy--to drive two hours both ways and leave feeling like nothing has been accomplished. At least if there is another appointment, it feels like the drive wasn't a complete waste of time). Evan doesn't like being in the booth--Jeremy has tried sitting in there with him, leaving him in his stroller, we've even tried getting him used to the booth at Hearing and Speech in Yakima as "practice" luck.

Fortunately, Evan does have a history of objective hearing tests (BAERs mostly) that consistently show hearing loss at the severe and severe to profound level. The CI program director looked at the most recent BAER (this was the one that had shown possibly Evan might have better bone-conduction hearing), and felt that the difference was just noise in the data. We can move forward without a good behavioral test result, it's just nice to have one to confirm what the BAER is telling us. Sometimes a person's hearing loss is not as "bad" as it looks on a BAER--behaviorally (subjectively) they can perform better than would be expected. That's why audiologists always say that we don't know with certainty Evan's level of hearing until he can tell us.

Evan is also going to see his urologist (Dr. Lendvey) in clinic. Evan has one last urology surgery we would like to coordinate with the MRI he will need as part of the CI evaluation. Evan has more of a risk with anesthesia than a typical kiddo because of his airway and swallowing issues, so we try to get as much done each time he goes under as possible. Some surgeries can't be combined, but an imaging study is "clean" so it should not be a problem.

The MRI will help the CI surgeon get a better look at the soft tissues around his auditory system. Evan has had a CT scan done previously, which shows his cochleas are not completely normal (they are flatter than they are supposed to be), he also has some abnormalities in the tiny bones that transduce sound from the eardrum to the cochlea (some of the bones are fused or missing). Of particular interest is the path of the facial nerve. In CHARGE Syndrome, it is common for the facial nerve to run an unusual course. It is critical for the surgeon to know where the facial nerve is, because accidental damage during insertion of the CIs could lead to a complete facial palsy on that side (meaning no facial expression). Evan already has a partial palsy on both sides--we do not want to make this worse.

In the next month, Evan has an appointment scheduled with the surgeon and an evaluation with the psychologist. We will continue to update as we learn more.

Over-Due Update

Life since we returned from vacation has been, well, life. I can't put my finger on exactly why I haven't's not that we have been overly busy. Enough with excuses. On to the important stuff: news about Evan!

This past Friday and Saturday night, Grandma Key stayed at the house with Evan (all by herself!). This is a huge milestone--up to this point Evan was not always predictable in having "good" nights, where he doesn't set off his oximeter alarm. Grandma Key did not feel very comfortable watching him alone. Evan was a perfect angel this weekend, and did not have a single gagging episode while Grandma was on duty. Mommy and daddy spent some quality time together at Indian John Hill rest area serving coffee and cookies for a Lions club fundraiser (12 midnight to 6 am Saturday morning and then 6 pm to 12 midnight Saturday night--what was mommy thinking??? She admits it was much easier to stay up that long when she did the rest stop to raise money for the Chemistry Club in college!). Grandma Key, the entire Lions Club says thank you!

Evan continues to build his confidence on the slide and in the pool. He is an active and willing participant in sliding down the big slide at the elementary school by our house. Evan climbs up to the top with assistance from daddy, sits down, and then pulls himself forward to begin the descent. He prefers to slide laying down on his back--fine by me because I don't completely trust his sitting balance just yet. When I catch him at the bottom he has a big half-grin and giggles. I might get a quick kiss in, but within seconds he's squirming to get down and start walking towards the ladder again.

Grandma and Grandpa Key just gave us the old swing set Auntie Jen and I used to play on when we were little. We are planning on giving it a coat of paint (I'm pulling for red), getting a new slide and some swings for it. I'm sure Evan would love having a slide of his own at home.

We took Evan to the city pool last Sunday, and plan to go again this afternoon. It takes less and less time to "transition" him into the water. Last week, I was able to walk around the shallow end holding him, without Evan yelling and grabbing onto me for dear life (we haven't been able to do that in over a year now). I am hoping by the end of summer he will be able to walk in the shallow end holding our hands (or the pool edge), will sit on a step in the water with us close by, and will let us take him into the deeper side (4 feet) of the pool. I think those are reasonable goals.

In other news...

We have some updates and more appointments scheduled for the Cochlear Implant (CI) evaluation. I have put all of this into it's own post.

I turned in a school district transfer request for Evan to attend Ellensburg School District. I have been assured my request will be denied, and that our home district just needs the denial to proceed with the plan for next year (our district will be paying Ellensburg so that Evan can attend the developmental preschool).

Please keep two of our friends in your prayers: Quinn and Casey. Baby Quinn was born last week at 34 weeks. He is slowly making progress in the NICU with his weight, feeding by mouth, and requiring less oxygen support, but his mom and dad don't yet know when he will get to come home. Casey (18 months) is recovering in Seattle Children's after emergency surgery on Wednesday for a ruptured appendix and bowel--he almost didn't make it. Casey is still critical--he currently has a serious infection (from the contents of his digestive tract bathing his abdominal cavity--not a good situation), but is expected to recover.

I will leave you with some pictures of Evan and Grandma Key playing one of Evan's favorite games: Bucket Swing

Wheeee Grandma! This is great vestibular (balance) input for me--you always know just what I need.

Just sitting in the bucket is nice too!