Sunday, September 30, 2007

Camp Prime Time

Jeremy, Evan, and I went camping this past weekend. It wasn't the warmest weather, but we didn't care because most of the time we were snug inside a cabin. Our local Parent-2-Parent group was able to reserve a weekend at Camp Prime Time. This is a non-profit camp for children with serious illness or disabilities and their families. We had a great time talking with other parents, going on a pontoon boat ride (Evan's first boat ride ever!), hiking, collecting pine cones and twigs (supplies for a project I have in mind for his "rustic" room), sitting around the campfire--all the usual "campy" things. Evan thoroughly enjoyed the extra attention he received from his two new friends, Sarah and Rachel. Thank you to the wonderful volunteers who fed us this weekend and work hard to keep the camp running all year long. The only bad thing about the whole weekend was that we didn't get much sleep (Evan kept setting his alarm off multiple times through both nights--we aren't sure why, he does have some extra secretions, but doesn't seem to be sick really).

Here are a few of my favorite pictures from this weekend:

Look mommy--one hand!

What's going on out there?

Not sure I'm feeling up for a hike with all these extra clothes on.

Evan's first ride on a boat (a pontoon boat, even!)

View of Clear Lake. The snow up on the moutain in the distance was fresh fall from the night before. Luckily, we only got rain.

Jeremy, and our new friend Sarah, ready for a great ping-pong volley.

Rachel loved pushing Evan around in his stroller...maybe even as much as Evan likes being pushed.

Where to now?

Rachel, Evan, and Sarah (this was a lucky shot, as none of these guys sit still for long!)

Sarah rocking Evan (anytime the hat, hat, hat sign comes out, it's gotta be good)

Evan, Jeremy, Sarah and Anita (Sarah's mom). Roasting--or is it burning?!--marshmallows for smores

Last night's camfire

Thursday, September 27, 2007

Recent Pictures

Sleepy boys...(this was the sight that greeted me when I came home from work one day last week)

Hi mommy! (such an intense look for a little guy)

Saturday, September 22, 2007

Update on Reuben

Reuben tracheostomy surgery last Monday was a success. He has been weaned down to basically room air at this point (humidified at night, for comfort). Way to go Reuben!

Jenny McCarthy & Autism

Last night I was flipping through the channels and caught a segment of 20/20 featuring Jenny McCarthy. I stopped to watch it, because I remember reading her books "Belly Laughs" and "Baby Laughs" while I was pregnant. Coincidentally, her son's name is Evan also.

I was surprised to hear that her son Evan is autistic. I was even more interested to hear the story of her & Evan's journey because CHARGE kids are often described as having "autistic-like" behaviors. She has become a huge advocate for a controversial view that autism can be "healed." With major dietary changes--a gluten (a wheat protein) and casein (a milk protein) -free diet--and intensive therapy, she reports that Evan's autism is being healed. The idea that autism can be reversed is not accepted by mainstream medicine. Many doctors have told McCarthy that Evan must have been mis-diagnosed to begin with.

I have to say that Evan's initial symptoms (seizures) and behaviors sound almost identical to a case I saw on one of those mystery diagnosis shows on Discovery Health. This particular little boy was about the same age as Evan and started having seizures and becoming withdrawn. The doctors couldn't figure out what was going on--it was his mom doing research online that ran across the diagnosis of Celiac disease (gluten intollerance damages the lining of the small intestine, and the body can't absorb nutrients). Once the boy was put on a gluten-free diet, the seizures stopped and he gradually returned to normal. This boy was never diagnosed with Autism--just Celiac disease. And I have a friend who's son is profoundly autistic and also has a gluten intollerance. If he does inadvertantly eat something containing gluten, his behavior changes dramatically. But even though he has been on a completely gluten-free diet for several years, he is still autistic. Obviously, there is an underlying complexity to the relationship between gluten and autism.

On a personal level, I am inspired to see someone "famous" deal with special needs, and use her celebrity to advocate in such a positive way. I remember shortly after receiving (my) Evan's diagnosis, thinking that "this" never happened to anyone famous--movie stars and models and athletes always seemed to be blessed with perfect children. The statisitcs on the incidence of autism are alarming, and I guess it would be surprising if there were no celebrity family touched by it.

Jenny's story is touching--so many parallels to our story. Listening to her describe how betrayed she felt--because she thought some of the quirky behaviors were just unique to her son, but turned out to be caused by autism--I felt a little shiver...hand flapping, being obcessed with fans or other objects that spin--that's my Evan too. I learned at the CHARGE conference, these behaviors are common with multi-sensory impairment...but they are still a little disconcerting.

If you are interested I have posted the links to the 20/20 report, and also she was recently on Oprah as well.

Thursday, September 20, 2007

Big Moment!

Are you ready for this?--I'm serious--it's that *BIG*...

Evan took a couple steps by himself yesterday.

Now before your imagination gets all carried away with images of Evan toddling all over the place, I should explain the moment a little bit more, because it's not quite the traditional first steps. But they were definately steps.

Evan has been wanting to be "up" a lot of the time now. So he has been doing a lot of cruising along the walls, walking holding on to our fingers (or "finger"--he can do it one-handed too). He likes to climb up on us, pull himself up to standing on a table, chair, whatever surface is handy.

He was finger walking with Jeremy yesterday, and as an experiment, Jeremy decided to see what would happen if he just let go of Evan. We've done this many times before--Evan can ever so briefly balance himself before he starts to topple over and we catch him. So Jeremy gently steadied him with one hand on his chest and one hand on his back, let him find his balance, and then slowly pulled his hands away. This time instead of starting to just tip over, Evan took a step forward to try and regain his balance, and then a second step! By this time, he was sinking downward to his knees...but he did take those two steps by himself. Jeremy tried to get Evan to repeat the feat, but it must have taken a lot out of Evan because after that he was just a noodle-leg, and wouldn't even stand up any more.

Unfortunately, I was at work and missed the big moment (and couldn't get a repeat performance), but we are hopeful to see this again!

Monday, September 17, 2007

Pookie's New Room

Jeremy and I have been planning to move Evan to the front bedroom in our house once he was officially a "big boy." We are still not sure exactly when that transition will happen, but we decided to get the room set up and decorated in the mean time--it makes a nice playroom. We chose a "rustic" theme, and have lots of plaid and bears. We're still working on getting the rest of the artwork up, but here is a picture of it so far. The colors look much cozier and the wall doesn't look so bare in real life.

Rocking Chair

Evan figured out how to get into his rocking chair all by himself, and rock. I have some still pictures and a video of this new talent.

Yes mommy, I think I'll show everyone how this is done:

Here I go--whee!

All that rocking sure tuckers a little guy out...

Saturday, September 15, 2007

"Do those play music?"

Amy wrote a post a week or so ago about "Grocery Store Education"--essentially, the way she dealt with some of the more tact-less questions people ask about Max out in public.

Well, today Evan and I had "Yard Sale Education." Now that Evan is officially free of ear infections, Jeremy and I have been pushing the hearing aids hard. So Evan had been wearing his hearing aids at home most of this morning, and continued to do so when we went for a walk to the post office and grocery store this afternoon. Because he is quite adept at picking the aids out and then sneakily dropping them through the leg openings of the stroller, I attatched the safety cords to the aids and cliped it to the back of his shirt.

On the way to town, we walked right by a yard sale--and I can't pass one without stopping to look. As soon as I slowed down, Evan pulled out his aids. Wanting to be consistant, I leaned down and said/signed "no, you need them," and proceeded to put them back in his ears. The woman running the sale looked at me and asked "Do those play music or something?" (I'm guessing she thought this because of the "cord" they were attached to). I said "No, they are hearing aids." She shook her head and said "I'll be, hearing aids for a baby..." almost like what will they think of next...

By this point, I was seriously repressing the urge to say something sarcastic (and wishing I had just stuck to walking on our street, where everyone knows Evan and doesn't think twice about seeing him with hearing aids or glasses--they might ask questions, but it's more along the lines of "Are those new?" or "How are they working?"). One of the other customers chimed in "I bet that gets expensive, with losing or breaking them all the time." I'm thinking to myself: You don't have to be a senior citizen to have a hearing problem. Is there some unspoken age requisite to being allowed to hear and participate in verbal communication? And yeah, hearing aids aren't cheap (thank god for DSHS--our primary would have paid zero), but being able to take part in a verbal exchange, or to hear a blaring truck horn and then get out of the way...truly priceless.

In the end, I didn't say any of these things. I just quietly finished putting his aids in, and then we were on our way. I know that people don't ask questions or make comments to be rude or hurtful. But it's still annoying to think that Jeremy or I doing whatever we can to make sure Evan can hear is looked at by another person as a novelty--like "Oh, isn't that cute." It's hard to accept that a disability or a peice of adaptive equipment is what people see and think about first when they look at my child. I want him to be "Evan, the cute, blondish boy" not "Evan, the kid with the hearing aids."

Updates on friends

Caleb's thymus transplant went smoothly, and he is now back in "his" room on the floor recovering. It will take about 5 months before Drs. will know if the transplant "took" or not.

Reuben is stable, and his parents are coming around to the idea that a trach will be the best way for Reuben's throat to heal and avoid further damage from long-term intubation/ventilator use.

Jayden had a trach placed a couple weeks ago. He was able to breathe much easier, but his recovery was unfortunately complicated by a post-op trach infection and seizures (attributed to his body fighting the infection). After some strong antibiotics, he is doing much better and has finally been able to come home!

I'm sure all of these families would appreciate continued thoughts and prayers (a link to Caleb's web page is on the right; I have not posted links to the other websites, because I don't have permission from the parents to do so). All three boys are such strong fighters!

Pictures from last weekend...

Here are the pictures of Evan and his cousins (I tried posting these 2x before, and had issues, so that's why it's taken so long).

Evan and Owen (3 weeks old, technically a 2nd cousin)

Evan and Brandon (4 years old, technically 2nd cousin as well)

Inside Owen's playhouse (Owen is learning to share at such a young age!)

Evan with his Great-Uncle Larry

Friday, September 14, 2007

Evan likes...guacamole??? AND other neat tricks

I haven't posted much recently about Evan's VitalStim and oral feeding progress...mostly because we've reached a little plateau and not much had been happening. But Mr. Pooks is always full of surprises for us. Earlier this week, Jeremy worked with giving Evan some whipped cream from a can (he has liked this in the past, but more recently refusing any attempts at oral feedings). Low and behold, he started putting his hands in it, licking it off his fingers, letting dad put the spoon in his mouth, and even sticking his tongue out to lick the spoon. On Wednesday night, Jeremy and I went to the new cantina Mexican restraunt in town. Jeremy got a side of gucamole, and decided to try it with Evan. He did the same thing--opened his mouth like a baby bird for the spoon, licked it off his hands! He has also done some terrific work on his biter biscuits too. The road to oral eating is a long one--with lots of steps forward and back--but it's nice to see some little bit of progress.

Going to town on a biter biscuit!

Evan has several new tricks: 1) He can get into his rocking chair, turn himself around, and push himself with his feet, 2) He can get to a standing position using only a vertical support--the wall--and then cruise along the wall, and 3) the past couple of days Jeremy has noticed when Evan has his hearing aids in, if we call his name he will turn towards us. Huge!

Wednesday, September 12, 2007

Prayers for Caleb & Reuben

Please keep our CHARGE friends Caleb and Reuben in your thoughts and prayers this morning. Caleb went into the operating room this morning for his long awaited thymus transplant. Reuben's parents and doctors are considering a trach (he is not able to be extubated after his heart surgery). Our family has been thinking a lot about both these families--we hope and pray all goes well for both of these strong, tough little guys.

Monday, September 10, 2007

Weekend Update...

The Storrs family had a busy weekend. Mom & Evan went to cousin Stacie's wedding in Kent, and dad stayed home and did some construction projects. I will post pictures from the wedding later today--I got some cute ones of Evan with his second cousins Owen and Brandon.

The glasses wearing is NOT going well. The new frames are not fitting well--because of Evan's short nose bridge and long eyelashes, the lenses mash his eyelashes in. So understandably, he's not wanting to wear them. I tried building up the bridge with some stick on pads, but they don't stick well to the plastic frame (and end up stuck on various places on Evan's face when he pulls the glasses off!). Hopefully tomorrow, Jeremy can bring Evan into the office and we can brainstorm some ways of making the glasses fit better (they are all one piece, so adjustments look kind of limited, but we'll see).

Friday, September 7, 2007

Max's Mommy in the News

The following article was published in the Bellingham Herald today:

Sep, 7, 2007

Mother of disabled son advocates change
Training will help families navigate political process

BELLINGHAM — A new leadership development program aims to help families of people with developmental disabilities turn their frustrations into political action.

Having a child with a developmental disability usually results in an unexpected crash course in working with schools, doctors and the government to get the services the child needs, said Amy McKinley, coordinator of the program.

But the 15 participants who join the “Real People, Real Lives, Real Power” program will also learn political advocacy skills that could help them fight those battles more effectively, McKinley said, and help make changes for the larger community.

The 12-month leadership program, open to people with developmental disabilities and their families, is partially funded by a $13,500 grant to The Arc of Whatcom County from the state Developmental Disability Council.

In addition to the training, the program covers respite care during the sessions.

From nursing services to special education programs, much of what disabled people and their families rely on depends on state and federal policies, McKinley said, but those services typically fall far short of what the families really need.

The training is designed to make people feel more comfortable making those calls and writing those letters — and encouraging others to take action, too, she said.

McKinley learned about the state grant program as she was beginning to care for her 2-yearold son, Max, who was born with physical and developmental disabilities.

She learned plenty about shortfalls in the system, McKinley said, but she wanted to learn how to help change it.

“I didn’t want to become one of those frustrated parents who only complain about the system and doesn’t do anything about it,” she said.

McKinley worked in politics in West Virginia and Washington, D.C., for several years before she had Max, including time as a press secretary and with a communications firm, so she knows how the political system works.

But navigating the system for developmental disabilities is still overwhelming, she said, and many parents are intimidated by the political process.

“People are just so scared to talk to their representatives,” McKinley said. “No, they’re there for us. They want to hear from us. They need to hear from us.”

In its seven meetings throughout the year, including a trip to Olympia, the group will learn about the history of the developmental disability movement, how to testify before governing bodies and how to promote awareness among friends and family.

They’ll also select and launch a community service project.

“This is a unique opportunity for parents and self-advocates to take their experiences and turn it into action,” McKinley said.

Way to Go Amy! We are so proud of you for your amazing, incredible ability to not just make the best of "non-ideal" situations, but do something that truly will make a difference in the lives of so many others!

Thursday, September 6, 2007

Glasses, Take 2

Evan's new pair of glasses came in today. I didn't get a chance to get a picture of them on his face today, but here is what they look like. I will keep everyone posted on how it goes this time around.

Gabe is a big brother!

Congradulations to Julie & Jasen (Evan's friend Gabe's mommy & daddy)! Kaia Marie was born on Sunday, September 2.

Gabe has already taken it upon himself to inspect all the baby equipment, and make sure it is safe for little sister. Safe cradle--check, safe baby swing--check! We also loaned him Evan's doll baby, so that Gabe has a baby to feed and change too. Julie put the baby doll in the car seat, and Gabe covered it with his special blankie. What a caring big brother!

Tuesday, September 4, 2007

Anonymous Comments

I know some of you have had difficulty logging in and leaving comments on this site.

I have enabled the "anonymous" option, so you don't need a gmail account to leave a message. Just type in your comment, and select Anonymous. It should post without requesting a log-in (you still might have to type in the number/letter codes).

Don't forget to add your name, so we know who's saying what though!

Saturday, September 1, 2007

The Fair, Part 2

We did try the fair again this evening. It's amazing what a nap and a clean shirt will do...

We have pictures of Evan on the rides. First daddy took him on the carousel--sitting on the bench. He loved the lights & he enjoyed it enough that mommy decided to take him on a second ride, and give one of the horses a try. I sat him down straddling the horse, and he immediately started trying to squirm around and stand up. I thought he might want to try riding "side-saddle"--not happening. I tried moving him to one of the smallest horses on the inside, no better. At one point, I was holding him by his shoulders almost horizontally--he had himself fully extended, pushing off the horse with his feet. That's when I gave up and just held him. And it's not easy holding a squirmy toddler with one arm and steady yourself with a pole that is moving up and down with the other. As we got off the ride, the operator said "He didn't do so well that time." Really.

The next ride we tried was the giant slide. Evan rode on daddy's lap. That was not his favorite experience either, but we thought it was probably because the sun was in his eyes. I took him down it again after dark, and he seemed to like it better.

The favorite ride by far was the car track. Evan actually sat in my lap and seemed to enjoy himself!

PS For those of you keeping track, Evan wore his glasses and patch after waking up from his nap and into the fair. Since he kept throwing the glasses over-board (I actually ran over them with the stroller once--it's a good thing I know how to adjust frames that have been badly mangled), we thought it best to remove them before going on the rides.

Glasses, the patch, AND hearing aids--Oh my!

Hmmmm. I thought when Evan let me put the patch, then the hearing aids, and finally his glasses--without immediately pulling them off--it was just a little too good to be true.

Yep. It was. This was 5 minutes later.

Evan's Faux-Hawk

Evan used to love taking baths. Well, maybe I am exaggerating a little bit--he might not have loved them. But he certainly didn't hate them. Just in the past couple of weeks, he has developed a phobia of getting into the tub.

At first we thought he had a sore behind (from the latest round of antibiotics), and that was why he would scream and hold on to your arm for dear life when you put him in the bath. Then Jeremy made the discovery that if he got in the tub too, there was no yelling or mad flailing--Evan would sit between his legs and play with his toys. Either this is just a "stage" or Evan has made the connection that his vestibular deficiencies could potentially cause him some trouble in the water. At any rate, we have opted to not force the issue (and take turns bathing with him instead).

This morning, we had some fun experimenting with a new hairstyle for Evan. His hair is so curly, it even flops over when we try to spike it.

So Un-Fair

We took Evan to the Kittitas County Fair this morning. Jeremy and I thought we were being very clever, by going early (while most of the fair-goers were in town watching the parade). Evan seemed to like the animals last year, and we were looking forward to going through the barns, taking him on the merry-go-round, and maybe even the giant slide.

We weren't there long before Evan started fussing and just acting miserble in general. We don't know if it was gas, allergies, a headache, or what...but it was obvious he was not having a good time. We managed to make it through a couple of the animal barns and get something to eat, before calling it a day. Evan is napping right now--we might try to go back early this evening.

These were the only pictures I was able to take (in between visits from "Mr. Cranky"). At least the goat posed for me.