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.