Elfed

Cedie's mom posted this on their family blog. I had to do one for us, too.

http://www.elfyourself.com/?id=9572152503

Thankful

Our family has a lot to be thankful for this Thanksgiving. We are thanful for Evan's continual improvements in health and development--it seems like he is doing something new almost every day. We are thankful for all the love and support we get from both sides of our family. We are thankful for all our wonderful friends and neighbors--those we have known for many years as well as newer friendships. We have met so many incredible people not only in the CHARGE and special-needs community, but also as close as our own street.

Our thoughts are with families who have recently lost children, or are battling serious illness, or frustrations with transitioning to life at home after a long hospitalization (Thanksgiving 2005 for us was full of worries about that last one).

First Snow of 2007

It started snowing this morning, and hasn't stopped yet! Grandma Key brought Evan some snow pants and boots yesterday--just in time for today's weather. It's a wet snow, and not much fun to play in. But we went out and took some pictures anyway (would you really expect any less from us?).

Not so sure how I feel about standing up in these new boots. I think I'll just hang on right here.



Julie took this picture of mommy & I all bundled up (I'm a little more bundled than mommy--she always complains about something called "hat hair." Glad I don't worry about stuff like that.)


Finally home again. Time to get out of these wet clothes!

The Bee Movie

Last night we took Evan to his first movie...The Bee Movie (just like Mighty Max!). We went to a group showing that was a fundraiser for some friends, and it included dinner right before the movie. Jeremy and I really didn't expect Evan to last much past the credits...especially since he had to hang out for about an hour before the movie even started because of the food. But Evan has a way of always surprising us. As soon as the lights went out and the previews started, he was enthralled. He watched about 45 minutes worth of the movie before he quietly fell asleep in the theater. Every time a situation comes up where we aren't sure how Evan will do, he always comes through and surprises us!

A pre-show snack



Evan made a new friend--this young man was very interested in Evan's style of eating.



Finally...the show is getting ready to start!

Two Bottles

Kids come up with the darnedest things to play with sometimes. Evan is a great example of this...he has all these fancy toys, and what are his favorites right now? The Sit-n-spin that I bought him at a yard sale for a dollar, and these two bottles from the pantry--Sweet Baby Rays BBQ sauce and maple syrup from Trader Joe's. He likes playing with the bottles so much, if the pantry door gets left open I can almost promise these two will be scattered across the kitchen floor.

A few nights ago, I thought he should see what was in the bottles. So we had a little taste test. He liked the maple syrup. Not such a fan of the Sweet Baby Ray's (means more for mommy--this is the only brand of BBQ sauce I've ever liked). The sad thing is now he can't play with the syrup bottle anymore--it has to be refrigerated after opening. But the BBQ sauce is still there. The sample came from an open bottle in the fridge.

Washoe

The first chimpanzee to learn sign language passed away earlier this week. Washoe (along with three other chimpanzees who also sign) had lived on the CWU campus in Ellensburg since the early 1980s. She was 42 years old.

I had the opportunity to see Washoe and the other chimpanzees signing, many years ago now. I took psychology 101 my very first quarter of college, and attended a "Chimposium" as part of the class. I remember thinking how amazing it was to see an animal not only understanding receptive communication, but also able to use expressive communication in return. Humans are "wired" for language right? It's what separates us from animals--yet here were some able to learn and use ASL in context. When Washoe died, one of the other chimps signed "hurt." And they taught each other--Washoe was also the first chimpanzee to teach ASL signs to her adopted son.

I never would have imagined ASL would become important later on in my life, or how it would feel to see a similar progression of communication with my son, who faces barriers of his own to learning language.

If you would like to read more about Washoe's life, here is the address for an article: http://www.spokesmanreview.com/breaking/story.asp?ID=12331

Remember when you had this much energy?

Make an on-line slide show at www.OneTrueMedia.com

Evan ate three times today!

Yes--you read that correctly. Evan ate three oral "meals" today (and wore three different outfits because of the mess--bibs just don't cut it at our house!). I already posted on the carrots for breakfast. Here is what else he had:

Lunch was chicken-tomato noodle soup. I made a big pot of soup for Jeremy and I to work on this week, and I had some for lunch. Since Evan has already tried most of the soup ingredients separately and done fine, I figured what the heck. A big ladle-full went into the Vitamix, and came out looking like...baby food. At first, Evan was not in the mood for sitting down to eat and kept trying to wiggle out of the high chair (I know what he was thinking: "Mom, we've done this today already!"). But after a few bites he settled down and let me feed him about 2 oz. It felt really...normal--so this is what it's like feeding a typical kiddo. Very messy, too--you have heard of Mr. Noodle? Well, here is Mr. Chicken-Noodle!


For dinner, Evan had some strawberry-banana yogurt and a piece of Zwieback toast (the toast he basically just threw on the floor--no interest in eating that what-so-ever). He ate maybe an ounce of yogurt, before having a mini-meltdown. Here is a picture of dinner just prior to the toast going overboard for the third time (someone needs to tell Evan he is not at The Rocky Horror Picture Show).


Hal (VitalStim therapist) is going to be super excited tomorrow!

Carrot Snot

I ate an entire 1/2 jar (2.5 oz size) of carrots for breakfast this morning. Mommy thinks she has figured out I like my food runny--yesterday she thickened the carrots with some rice cereal and I was done after a few bites. Today we had to take a couple rest breaks, but I ate it all.

Mommy is very proud of me, especially since swallowing for me still looks like it is a lot of hard work and quite a bit of food comes out of my nose. How pleasant could that be? But I'm a trooper--she shovels it in, and for the most part, I move it to the back of my mouth and swallow. I make a little sucking sound when I swallow, so she knows air is going down too. Hal, our VitalStim therapist, has assured her this is something that will only improve with practice.

Excuse me mommy--Do you have a Kleenex handy?


Look: The carrots are coming! The carrots are coming!


And here they are...


This is how much toilet paper we went through for me to eat less than 2 oz of food--crazy, huh?

November is Prematurity Awareness Month

Our house will have a blue porchlight (if mommy can find the bulb--she thinks she remembers where she put it) and Evan's blog will be blue for the rest of this month. We are observing March of Dimes' Prematurity Awareness Month. Least we forget, amongst all things CHARGE Evan is also an ex-32 weeker (8 weeks early).


We will never forget all the great care Evan received very early on from the doctors and nurses in the NICUs at Swedish and Children's (this picture is Evan at 4-5 weeks old--still preterm!--in his isolette, on CPAP, after receiving some of this care). As annoying as some of the hearing/ear infection/stenosis issues are to deal with now, remembering back to the early days puts it all into perspective--without the intensive medical interventions to overcome prematurity, Evan might not be with us today, to have these other problems to solve.

Night Party

Wednesday night--or more properly, very early Thursday morning--Evan decided he had all the beauty-rest he needed and it was time to wake up. At 1:30 am, Jeremy found him turning circles in his bed. So rather than risk Evan getting out of bed and pulling all his paraphanalia with him or getting into all his toys, Jeremy just unhooked him and took him out into the hall. He closed all the doors (except our bedroom), put up the baby gates, and let him wander the hall. His point was to show Evan how boring being up was and it was just better to go back to sleep.

I woke up at about 3 am to Evan-noises and banging on the bedroom door. I was suprised to find Evan laying in the bedroom doorway, vocalizing as he softly banged his head against the door. I realized Jeremy was gone, and found him trying to sleep in the middle of the hall with Evan's comforter and pillow. He explained his plan to me. I went back to bed, Jeremy shortly followed and we let Evan wear himself out--what else can you do???

Eventually, Evan did go back to sleep (sometime before 5:30 am--that's when Jeremy found him asleep and put him back to bed). But not before he expressed displeasure at being baby-gated out of the livingroom. At one point, he was standing up rattling the gate and making a bunch of noise. I heard Jeremy (and can image the ASL signs to accompany) saying "Daddy is not happy. This is time to sleep, not time to play. You need to go to bed." If it were only that easy!

BAER Results

Basically stable--it's bad in both ears. Interstingly enough, Evan did show some improvement with bone conduction, which he has never demonstrated before. So his unaided threshold with bone conduction is at the level of a vacuum cleaner, as opposed to a lawnmower with air conduction. So we are back to trying the bone conduction hearing aid (we tried a loaner one with him a few months back--didn't seem to make any difference although he was battling ear infections at the time).

With these new results, Evan is not a candidate for a cochlear implant. Just like that--nothing about his hearing has really changed. We just got this unexpected result and suddenly the ENT who does CI wouldn't want to do it. Not that we were pushing to get him implanted, but we would like to put the idea to rest one way or the other. Evan's hearing loss has him borderline as a candidate, and the lack of progress with hearing aids could have been a factor. Now, suddenly, we have this whole new category of hearing aid to pursue before we can finally decide yes or no on the CI.

It reminds me of a situation with a young adult with Down's who was receiving services because of "mental retardation." To qualify, the IQ has to be under 70--it had been in the high 60s several times throughout life the test was administered. In high school, the student scored a 72, so all of a sudden didn't qualify for some of the same services. The mother was incredibly frustrated--it wasn't like the person's level of functioning was any better with an improvement of 5 IQ points, as the student was still on the life-skills track. Just as she matured, had become better at taking the test (things like recognizing patterns--that didn't have direct bearing on daily living).

We are also continuing to pursue a CT or an MRI to really look at Evan's nose and rule out choanal stenosis (narrowing of nasal passages on one or both sides). Choanal atresia (failure of the passages to open into the back of the throat) is very common in CHARGE--one of the diagnostic criteria in fact. Often, a child will have either choanal issues or a cleft palate--so since Evan had the soft cleft we always figured he didn't have any stenosis (we know he doesn't have choanal atresia because he's had tubes passed through both sides of his nose too many times to count). The reason why we are so interested, because the list of signs and symptoms reads like an exact description of Evan--constant goopy nose, recurrent ear infections, fluctuating hearing.

Evan's team at Children's is supposed to discuss this on Monday--it would be nice to get this diagnosed and hopefully treated so we can finally feel like we have a plan. The past year seems like it was nothing but waiting--very frustrating!

The "Opposite" of Eating...

If Evan was demonstrating eating skills last week, well this week is a 180 degree turn-around. Two steps forward, one step back...

An analogy: Front is to back, as eating is to this...


Instead of eating star puffs today, I learned that they stick to other things when they get wet


Quick! Wipe that food off on the high-chair cover while mommy isn't looking...she'll think I swallowed it!

BAER Hearing Test Today

Evan is scheduled today for a repeat BAER test under general anesthesia. Behavioral testing in the booth the past few months has not given any useful results, and it was suggested by the audiologist (the ENT had suggested it several months ago, but we put it off hoping to combine it with another procedure--no such luck).

We are hopeful for some meaningful results--in the past, results have always been qualified with the "but there is fluid present, so the real result is probably better." I am not sure how (or if) these results will change what we are doing in terms of communication. Stay tuned to find out...

An update on the big boy bed--Evan loves it! In two nights, he has only woken up in the middle of the night (ie very early morning) once. He burrowed himself down next to the side rail and went back to sleep. So far, he has been good about staying in the bed until it's time to wake up. We have changed his feeds so that the night one ends early in the morning and we can unhook him before he wakes up and starts moving around. I admit that I had some second thoughts about whether we were moving him out of the crib too soon, but it seems to be working out fine.

An update on oral eating--or lack thereof... Evan has discovered he has some control over this aspect of his life--and he likes it! When he feels like eating, he does a pretty good job. But when he doesn't, watch out. I attempted to feed him some applesauce yesterday. He spit out pretty much every bite I gave him, the little turkey! His new trick if he doesn't like it is to turn his face to his shoulder and spit the food out on his shirt (or the high chair cover). I have some pictures from yesteray yet to post--it's quite a mess.

So keep our little Pookie in your thoughts today. In the scheme of things, this is a really minor procedure but with kiddos like Evan any anesthesia can be unpredictable.

First night in the big boy bed...

Evan...you are growing up before our very eyes. Earlier this week we installed some temporary side rails to Evan's bed. Tonight was the first time we put him to sleep for the night in his big boy bed. He looks so grown-up, yet so small and fragile at the same time.

I know what you are thinking. It seems early to transition him from his crib to us, too. But we both have concerns about him learning to climb out of his crib with his feeding tube, oximeter, CPAP all attached--not a safe situation. It's a much shorter distance to the floor in his big bed, if he were to tumble over the side rail.

Tomorrow morning is going to be interesting. I put him in bed already asleep, so I'm sure he will wonder where he is. And he knows how to turn around and shimmy off the foot of the bed backwards. Life as we know it now is never going to be the same...

Great Day at PT

Today was a "make up" PT (physical therapy) day. Evan normally goes once a month, and his last session the therapist was sick. Jeremy rescheduled it for a Friday afternoon so that I could go this time. Evan was a PT super-star! Usually, this appointment is right after an hour of speech therapy with Kat, so he's a little worn out. Today he climbed stairs and swung and cruised on furniture to play with toys--the therapist saw all kinds of progress with him.

After therapy, we went to visit Grandma & Grandpa Key--Evan had lots of fun playing with his grandparents.