Naked Baby

For obvious reasons, this will be a text-only post.

One of the new skills Evan has learned in the past month is how to take his shirt and pants off all by himself (he is getting close to being able to put them on also, but still needs our help).

Unfortunately, starting to take off one article of clothing (like a shoe) seems to initiate a strip-down sequence for him that doesn't stop until he's taken off everything--yes, everything. This is particularly alarming because although we're working on potty-training again, Evan is not potty-trained. Usually we find pee somewhere in the house following one of the naked episodes.

Evan has figured out nothing gets mommy or daddy's attention quicker than taking off all his clothes. So if we aren't paying enough attention to him, off comes his pants and pull-ups (and sometimes the shirt). This happened during Thanksgiving dinner...luckily all our guests were family!

Happy Thanksgiving

Here are our photos from the day. Grandma & Grandpa Key and Auntie Jen came over to our house. My dad's 60th Birthday also happened to fall on Turkey Day this year (in case you were wondering why there are candles on the pumpkin roll).

Drinking Fountain

Evan loves the drinking fountain at preschool. Jeremy says you can even hear him slurping up the water (background noise is too loud in the video).

Great Grandma Wilkins

Evan's Great Grandmother Miriam Wilkins (Jeremy's mom's mom) passed away on Thursday. She was an active, very sharp 91 years old. The week before, she had fallen and broken her femur. She lost a lot of blood during the 6 hour surgical repair, and that caused her kidneys to fail. Thankfully, Jeremy got to visit with Grandma Wilkins on his trip down to the bay area earlier this month. This picture of her with Evan is from July 2007.


One of the things Grandma Wilkins was passionate about was roses. She had been President of the Rose Society and had organized many rose shows. There is even a Miriam Wilkins rose--this is the picture of it I found on the internet!





Grandma Wilkins, you will be missed! XOXO

Halloween

Hey there--it's your friendly neighborhood Bat Boy, Evan.


Whaaahahahaha... Look out all you baddies!


Let's get this thing started up.


And we're off on the Batmobile!


Daddy and I are off to collect some goodies. We decided "on foot" would be a more efficient form of transportation.

The Crud

So we've all been sick this past week. It started with Jeremy feeling the beginnings of a scratchy throat last Saturday night. He felt pretty crummy until Tuesday, at which point Evan started looking pretty sick. Sore throat, fever, aches, chills, coughing... Evan was not ever seen by his pediatrician (he'd been in the week before for suspected sinus infection, & was on antibiotics for that already), but because Swine flu is the only thing really going around right now, he got put on Tamiflu as a precaution. By Wednesday night, I was not feeling well at all. I stayed home from work on Thursday (which I never do, well almost never). I went to work Friday, but could barely talk. I had a previously scheduled doctor's appointment, so I got the once-over for my cold also. My physician's assistant doesn't think it's Swine flu, and recommended we all get the Swine flu vaccine as soon as it's available.

This is a little tangent but right now the vaccine in our area is only being given to certain health care providers. I called the health department to inquire, but because I'm just an optometrist and I don't have to see people who are sick, they wouldn't give it to me. I tried the "people are like 8 inches from my face all day" and the "if I refused to see everyone with cold symptoms, I would have no schedule" and even the "I have a son who has major respiratory issues," but no dice. I was mildly annoyed too, because it didn't sound like they were out of vaccine. I don't see why they couldn't give all the providers they were targeting first dibs, and then open it up to other providers. But that's not what they are doing. The parting advice was to make people wear masks (which is what we're already doing for people with symptoms). Gee, thanks.

School Days

Evan had adjusted well to this year's routine of two pre-schools. Every once in awhile, he'll have a rough day at one class or the other but usually he does great on the days he goes to both (Tuesday-Thursday).

Sherri continues to be Evan's one-on-one aide at the Developmental Preschool. This fall, she is taking an ASL class--the same class and teacher Jeremy and I took last spring. We know the additional signing Evan sees from Sherri will help his receptive and hopefully expressive communication.

Evan is becoming more and more of an active participant in art projects at school. He will now place stickers, scribble lines, and sprinkle glitter. I used to look at "his" projects and admire the aide's handi-work, but it's pretty obvious now Evan's involved. He brought home a pumpkin face on a piece of construction paper--Sherri said that there were "x"s drawn where the eyes, nose, and mouth were supposed to do but that Evan stuck the pieces in the right places himself. He further embellished the piece with some attractively arranged Halloween foam stickers.

This past Tuesday was the class trip to the pumpkin patch. Sherri was sick that day, so Jeremy accompanied Evan. This was the first time Evan got to ride sitting in the regular bench seat (before he's always been strapped into one of those fold out child car seats). He loved it! He was belted in, but he just sat there looking out the window and having a great time. He was not as much of a fan of the actual pumpkin patch, but at least there was something redeeming on the field trip for him.

At Head Start, Jeremy has been Evan's "acting aide" while they've been looking. They just hired someone this past week, and she will be shadowing Jeremy and Evan next week. Her son had both a g-tube and trach, so she is very well-prepared to handle Evan's medical needs at school. We have met her before--this is one of those "it's a really small world" stories that requires some background explanation.

When Evan was an inpatient at Children's, the volunteers gave us several beautiful blankets. After he came home, I wanted to give back so I made some fleece quilts and donated them to Children's. A couple of years ago, we were at March for Babies in Yakima--and I saw one of my blankets on a child at the event. I went up to the family and asked them about the blanket. Sure enough, their son had spent a lot of time in and out of Children's and they were given the blanket by the hospital volunteers. As it turned out, this family was also from Ellensburg. And--you've probably figured out by now--this mom is going to be Evan's new aide at Head Start. Coincidence???

Short Cut

I know I've posted before about our hair-cutting technique: Jeremy does it at home, while Evan's asleep. Usually this works great. We lay him on a towel, roll him on his side, cut and clipper that half of his head, then flip him over and do the other. The next day Jeremy makes any necessary touch-ups.

This did not work for Evan's last hair cut--at the half-way point he woke up! So for a day, Evan looked pretty scraggly with one side basically finished but the other just had a few random clips. Thankfully, the next night he slept soundly through the remainder of the procedure.

Down by the river.

These are from out drive down to Vantage this afternoon.


Soccer may be in my future...






Time for my afternoon siesta.

School Days

Evan started back at pre-school this past Tuesday. He goes to Head-Start 3 mornings a week and to Developmental Pre-school 4 afternoons per week. There was some concern about him getting too worn out with both, but by the end of the week Evan seemed to be adjusting just fine. Here are a couple pictures of him at Head Start.

Cardboard Box

Grandma Anna mailed us some throw pillows earlier this week (they match a quilt she'd given us before; our bed looks so coordinated now--thank you!). Evan is not a fan of the pillows--he climbs up on our bed and throws them over board--but he was quite entertained by the box they came in.

He did it!

Evan, after being caught in our bathroom, up on the counter, splashing water everywhere...

Special Sherri

Every once in awhile you run into a person who is so kind and generous that you almost have to pinch yourself to make sure it's for real. Since Evan was born, I feel our family has been truly blessed in making connections with many people who are like this.

One of these special people is Evan's one-on-one aide from preschool, Sherri. Sherri has been working with Evan since January of this year, and they have a really wonderful connection. Sherri is learning ASL and has worked hard to implement his PT and OT goals into Evan's everyday classroom routine. She has even taken time to set up some playdates with Evan over the summer to keep up their relationship.

Thank you for going above and beyond Sherri! We really appreciate how much you care about our little guy.

Summer is winding down...

Labor Day Weekend is here, so that makes it official--Summer is Over :(

This past week, there has been a definite chill to the air in the morning. In our garden, the tomatoes are (finally!) ripening and I'm finding our neglected zucchini plant is producing progeny the size of baseball bats. We've got invitations to back-to-school "nights" for Evan--two in fact. He will be returning to the Developmental Preschool four afternoons a week. Evan is also going to be going to Head Start three mornings a week, which happens to be very close to our house. We are excited to see the growth and development that will come from this additional time in class. School starts 9/22.

Today, Grandma and Grandpa Key came over and we all went to the fair. Fortunately, it was not hot. Unfortunately, it was because it rained the entire time we were at the fair, ranging from a slow drizzle to all out pouring. Early on we were able to stay pretty dry, ducking in and out of the exhibit halls. I skipped pictures this year because it wasn't long before we started to look like drowned rats. Jeremy and I got drenched when we went on some rides in the carnival (had to use up the tickets we bought for Evan, who only made it through one round on the carosel).

As an aside, I think you are officially "old" when rides go "too fast." We went on this one spinning roller coaster ride that went forwards and then backwards...all I can say now is my own personal image of what Hell must be like includes a never-ending version of that ride. I overhead someone sitting a couple cars ahead of us saying it was the 3rd time he'd been on it that day. You've got to be kidding me--my stomach and head have still not fully recovered.

I put Evan to bed about 45 minutes ago, thinking he was pretty tuckered out. I can hear him kicking the wall next to his bed so I guess that was not the case. Hopefully he will give in to sleep...I know after today I'm more than ready to.

Healthcare Reform and Evan

I started this post a few weeks ago, thinking I might use part of it in a letters to our Congressman and Senators. I still may, but it needs some work. In the mean time I thought I'd share my thoughts...

I've been reading a lot of other people's stories about our current health care system--mostly about how "broken" the system is right now, and how it fails the people who are seriously ill. As much as I complain about insurance and the current system, I am very nervous about change.

As a "non-MD" provider, I am afraid that whatever change happens, my profession as a whole will get written out of the insurance loop and will have to start from square one fighting to get on insurance panels again, fighting to be paid the same amount as an MD for providing the exact same service. Even though the reimbursement rates from insurance companies are not the greatest, being on a provider panel does bring patients in the door. Very few patients are so loyal to a particular doctor they'll go regardless of insurance coverage. Loosing this would be a big blow to my ability to support our family.

But mostly, as a parent of a special-needs child, I am very afraid of what the future holds for my son, Evan. Evan was born with CHARGE Syndrome. He has a very tiny genetic error that has resulted in some very serious birth defects. In his short four years of life, he has spent about 6 months in the hospital (including his first 4 months) and has had at least 10 different surgeries. Evan receives all his nutrition via a feeding tube because he can't swallow liquids or solids without aspirating. He has severe sleep apnea and uses a CPAP machine at night. He is profoundly deaf and does not speak or sign, despite 3-4 years of speech an occupational therapy. He makes a lot of grunting noises and displays a lot of behaviors that are best described as "self-stimulating" or "autistic-like." Needless to say, Evan's health care needs have been (and continue to be) substantial. He has not yet reached our insurance plan's lifetime maximum, but I have concerns that could potentially happen.

I worry when I hear or read about people not wanting to pay for "someone else's" health care. I worry if (when) there is not enough funding to pay for the care all of us need as a whole, choices are going to be made as far as who receives what care and the people who are seen as weaker or requiring the most expensive care will be be denied it. I worry--in a society where something like 90% of mothers carrying babies with Down Syndrome chose to terminate the pregnancy--that my son will be seen as less worthy of care than someone who is developmentally "normal." Evan, and other people with developmental disabilities like his, cannot fight for his rights. What happens when his father and I are not there to stand up for him? As unfair as it is to expect someone battling cancer or some other terminal illness to navigate the bureaucratic maze of the health care system, it's even more ridiculous to expect it of those with developmental disabilities.

Earlier this week, I saw a message being posted on Facebook by people who believed(something to the effect of) no one should be denied health care because they couldn't afford it and that no one should have to go broke because they got sick. If you substitute "have a child with special health care needs" for the "got sick" part, that's happening already. The intervention and therapies necessary to maximize the potential of a child with developmental disabilities is huge. The cost to provide even an "adequate" level is substantial. If they had to pay for it alone, I don't believe any middle-class family could afford it. Adding on top of this the cost of medical care (almost always much higher than for a typical child)--it's a formula for financial hardship. I worry that it's only going to get worse. You shouldn't have to declare bankruptcy because you have a child with health or developmental issues...but it happens.

I don't know what the solution is. I wish my worrying would lead to an answer...for Evan, for everyone.

4 years, 1 month

At 4 years, 1 month you...

Can open doors--both lever and round knobs.

Are good at asserting your opinion, even without any words or signs--"I don't want to go to bed now," "I want to wear blue jeans and not shorts," or "I want daddy to walk with me around the coffee table...for the next 30 minutes."

Appreciate the difference between "big" and "small"...you will find two items that are very similar except for one is big and one is small and carry them all over the house with you. Yesterday it was my big heart and little Fleur-de-leis paper punches; today it was your big and tiny porcupine balls.

Know that the food/milk we feed you through your g-tube is "supposed" to get to your tummy by a different route. You eagerly wait for daddy or mommy to fill the vent tube with food and then dip your hand in so you can lick a taste from your fingers.

Have mastered the punching balloon. You've been working on swinging the balloon around by the rubber band for a couple weeks now, but as of today can make a steady sequence of punches.

Can climb up onto the kitchen table, stand up, and walk around in circles on the table top before mom or dad is hardly aware you've made a break for the kitchen.

Can take off your diaper, can pull on pants or put arms in shirt sleeves with assistance. Attempts to brush your teeth by yourself. Futile attempts to avoid bathing when daddy signs "bath time" include running the opposite direction, becoming a human noodle, stiffening body so it's difficult to maneuver you through the doorway, grabbing onto the bathroom door jam for dear life.

"Drink" small dribbles of water from a sippy cup.

Will clear all the baskets of toys from the second shelf of you cupboard, lay down on the shelf, and close the doors on yourself. This maneuver required daddy to anchor the bookcases to the wall.

Get up on your spring horse without any help, grab on, and start bouncing away.

Like to walk between daddy and mommy--daddy on the left, mommy on the right. If we are on the "wrong" side, you will stop walking and make us switch!

Know the "usual" place for things. You will try to close the baby gates behind you, close doors, put things back in the refrigerator, will pull the tabs off aluminum cans (guess you've seen us do that a few times).


* I "blog-lifted" the idea for this post from our friends Catherine and Reuben--we love your blog!

Grandma Anna!

Grandma Anna has been visiting us. Sadly, tomorrow is her last day (and I can't believe we didn't start taking pictures until today...). We drove up to Cle Elum and Roslyn today for something to do. There was a car show in Cle Elum, and we went to all the little shops on Main Street that I drive by on my way to the office every week but never have time to go to.

I haven't been to Roslyn in ages. Originally the plan was to eat at Village Pizza, but Grandma Anna can't eat cheese...so that was out. We ended up going to the Roslyn Cafe instead which was really good. Then we checked out the shops in Roslyn.

Checking out Village Pizza...


If this mural looks familiar, Roslyn is where "Northern Exposure" was filmed. Evan was not being a good waiter inside the cafe, so Jeremy had to help him walk off some extra energy.


Walking with Grandma Anna (and, yes, that is a toilet seat on the pole in the background).


Evan at the Coal Miner's Memorial

Cochlear Implant Confusion

It seems that the declaration we received from Evan's would-be CI surgeon, Dr. Sie, last spring was a little bit...premature.

I called the CI team to see what needed to be done to get things rolling for Evan to be implanted this spring. After review of Evan's chart, there were a couple tests that somehow didn't get done and so his candidacy has been temporarily revoked. The additional tests are tentitively scheduled for September. One of the "missing" tests was the psychologist eval of me (and I seem to remember her meeting with Jeremy, and then exchanging some emails with me in lieu of a face-to-face meeting). I guess they've decided the in-person meeting is not optional. Another missing data piece is aided and un-aided hearing tests in the booth. I tried to explain the reason they don't have any results is because Evan frieks out every time they put him in the testing booth (and they've tried it with him probably 5 or 6 times now, at least). I don't forsee this next time being any different, but we'll try again.

We had some renewed interest in pursuing a CI because Evan seems to be more interested in the little bit of sound he does receive. He really likes something we call "head talking"--he pushes his head (behind his hear) up against our mouth, and likes it when we talk right on his head. Maybe it's the vibration or maybe it just tickles, but it really seems like he's hearing something.

This response has also made us wonder if he would get any benefit from a bone-conduction hearing aid. We did have a loaner bone conduction aid for a short time when he was around 2 years old, and it didn't appear to do much for him. But we want to try it again. His audiologist at Children's has another loaner one to set him up with at his next appointment in September. Obviously, if the bone conduction aid is successful, Evan won't get a CI.

Sunglasses!

Evan has decided that sunglasses are not nearly as evil as he first thought. Jeremy noticed that Evan was more frequently grabbing his sunglasses, putting them on, and then leaving them on for awhile. He bought Evan a pair of Cars sunglasses, and Evan will actually wear them :) Sunglasses today, tomorrow his prescription!

Horribly Neglectful...

I admit that I have not been good about keeping Evan's blog updated the past couple of months. Work has been very busy this summer--the other Dr. in the practice is phasing out (which means I'm working more) and we're much busier than we were this time last summer. It's great for cash-flow, but not so great in terms of wanting to do things after I get home from clinic at the end of the day. And by "things," I mean activities other than crashing out in front of the TV or mindlessly clicking the mouse button to advance my way through Mafia Wars or Farm Town. I guess also another reason I'm not on here as much anymore is because I don't need it the same way I needed it when I started blogging.

The only thing to do is try to post a couple updates on the highlights for the past couple of weeks, and then move on with the promise to do better.

Second Half of July Update

Evan is so funny when it comes to jeans. He doesn't really like shorts or pants unless they are denim. If he gets dressed in something other than jeans, he'll wear it for a few hours but sooner or later he sneaks off into his room and gets a pair of jeans--out of his drawer if he has to--and brings them to you to help him put on. He will also pick them out of the (clean) laundry pile, and sometimes the pair he gets is not his. Jeremy took these pictures of Evan getting into daddy's jeans...mister, you are way too silly sometimes!


Evan has leaned how to drink from a sippy cup! I use the word "drink" loosly, because very little water is actually being imbibed. But he has the idea of what the cup is for, and understands the process. Gotta start somewhere, right?

Testing with a lick first.


Wait for it...


Sucess!


Evan's actual birthday was July 15th, but we had his party last Sunday (OK, so this is technically August now...). We tried to keep it small, because Evan gets over-whelmed with lots of people around and kind of shuts down. So we invited over a few of the neighbor families to enjoy the wading pool. The wading-pool ended up not being such a great idea because we filled it on our back porch next to 3 fairly active wasp nests. Luckily our neighbor Scott is handy with the wasp killing spray and had a slip-n-slide that we set up instead. While all the drama was going on outside, Evan got up on the table and into his birthday cake!

Jeremy, Scott, and Neal--Benton Street buds.


The cake before Evan got to it...


...and after.


The horrors of singing "Happy Birthday" (or maybe it was the open flame).


Smooshed or not, McKenzie determined the cupcakes were still edible.

Vacation!

We're back from our trip to the Oregon Coast earlier this week. The pictures are in reverse order (the ones at the end are from the first part of our trip), and I don't have captions yet. But here are the best pictures. Enjoy :)