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.