Spin-crazy

Evan still loves anything that spins. The only thing better than one toy that spins? Two toys that spin, at the same time of course!

Photo and video editing at www.OneTrueMedia.com

Huckleberry picking

Today we went with Grandma & Grandpa Key to their top secret huckleberry patch (we've been sworn to secrecy--if we tell you where it is, we'd have to...well, you know). We were joined by Dennis & Gloria, long-time, secret-huckleberry-patch-worthy, family friends.

Evan did really well. He didn't actually do any picking, but he spent about 2 1/2 hours on daddy's back. As we finished up lunch, it started drizzling, and Evan started looking sleepy. So Grandma Key and mommy stayed behind in the truck (hoping to get Evan to go to sleep...the nap tease that he is never did) while daddy and Grandpa kept picking berries. By late afternoon, our family managed to pick about 2 gallons between us all. Not bad for a day's work.

Here are some pictures of today's adventures.

Daddy & Evan are ready to go pick some huckleberries



Mommy's berries


Fun with my reflection


Grandma dealing with a case of the "squirmy-wormies"


Daddy's hands after a day picking berries


Evan out-lasted daddy today!

New hat

Here I am, modeling my latest wardrobe acquisition. These "pilot" caps were recommended to us by the audiologist, as a way to keep me from being able to pull out my hearing aids. As you can see, I don't mind wearing the hat at all (this is sans hearing aids, because I'm still not 100% recovered from my latest ear infection).

If only there was a solution this easy to solve the problem with recurrent ear infections...

A new cousin...

My new (second) cousin arrived on Monday, August 13th. His name is Owen Lawrence Key. Congradulations to cousins Lisa & Daniel! I wonder if Owen will like puzzles and cars, just like me??

Ophthomology Appointment

Jeremy took Evan to go see his ophthalmologist, Dr. Epley, this morning. Dr. Epley has seen Evan since he was a tiny preemie in the NICU. He agreed with Dr. Preston's findings that Evan does have significant astigmatism in the left eye, and that eye is turning outward pretty much all the time. He also agreed that most likely Evan will need surgery to repair the turn, but he would like to get 3-4 consistant measurements of the magnitude of the turn before surgery. So he has one from today, one from Dr. Preston's exam in June, and will see him again in 6 weeks. Dr. Preston will see him again in September. We will continue with the patching and glasses (when they come in). The very good news is that Dr. Epley does have surgery time scheduled in Children's ER, so we have a good chance of being able to coordinate some other procedures (less anesthesia--yeah!)

What a mess!

This is just how I like it...all my toys spread out for easy access.


There's nothing better than a good toy mess. Tee-hee!

Glasses are broken :(

Evan broke his glasses this morning!

And it's not an easy fix like a gluing a cable temple back on or replacing a screw. He snapped one of the temples clean off. On Monday I will try to order another one (fingers crossed this frame has not been discontinued). I am also going to order some rubbery little kid frames to put Evan's lenses in. They won't be as cute, but hopefully they will stand up to all the abuse just a little bit better. (***Evan, if you are reading: this is not a challenge!)

Recent Pictures

"Oh Evan...Come out, come out wherever you are."


There he is...


"Hi mommy!"


Evan is starting to pay more attention to the cats...


"Snickers, come play with me."


"You silly kitty!"


"Look at what a big, strong boy I am."


New Favorite Bath Toy: Scuba Steve


"Scuba Steve's feet tickle!"

Great to be "Average"

Evan is feeling much better these days and sleeping through the night again. He had his 2 year old well-child visit with Dr. Oldham yesterday. Believe it or not, this is the first scheduled well-child visit he has had where he has actually been "well."

He received a Hep B immunization and he was weighed and measured. I don't recall the exact weight (it's around 27 1/2 lbs still), but he is 33 inches tall. This puts him right at the 50th percentile for both weight and height. I never thought being just plain, old average would feel so good!

Progress with the glasses is slow but on-going. We adjusted the glasses and put on some different cable temples so that they fit better (One of the temples had to be cut about 1 cm shorter than the other to fit around his ears properly--I would have never guessed he was that asymmetric!). So now they stay on unless Evan pulls them off.

Please continue to keep our friends Reuben, Caleb, and Marsha in your thoughts and prayers.

Feeling better?

Evan seems to be feeling better these days. He isn't spiking fevers. But his past few nights have been very restless (or so I hear...). Seriously though, I've been waking up at least once during the night with him. And if I'm waking up, you know it has to be bad! Evan is sleeping a lot these days--he's gone to bed for the night around 6 the past few nights. He has an appointment on Thursday for his "2 year well-child" visit with Dr. Oldham. We are doubtful we'll be bringing in a "well" child, but I guess we can always hope.

The Year in Review

For those who don't know this about me, I have a "moderate" scrap-booking habit. I say moderate, because I'm not nearly as into it as some of my friends (Amy & Julie come to mind...). But, Evan does have an alphabet-themed scrapbook of his first year (with a page built around each letter), and I did finish it shortly after his first birthday last year. That's a bit more than a casual scrapper...

This year, I really scaled back. Aunt Jessica had put together a book with a "months of the year" theme--one page a month. I just had to add pictures and journaling. Since July just wrapped up, I'm finishing up the last pages for this book right now. I used a list format for the journaling, and included the topics "Fun Stuff We Did," "Some of My Favorite Things This Month," and "New Things I Can Do." I'm amazed how much progress Evan has made over the past year, particularly in the latter two categories.

August
Favorite Things: Baby Noah DVD, Exersaucer
New Things I can Do: say "na-na-na" and "ah-na," mom or dad can pull me up to a stand

September
Favorite Things: Bed bug, Panda bears (I'm over them already), Baby Signs and Trucks board books
New Things I can Do: "help" take my shirts on/off and wear shoes, sit unassisted and stand leaning against something, creeping

October
Favorite Things: Halloween maracas, Mardi gras beads, "signing Time" DVD
New Things I can Do: stand up/sit down, take steps behind something I can push/use for support, sign "more" (copying mom or dad)

November
Favorite Things: feet, measuring cups and spoons, play-doh (I do not like)
New Things I can Do: move all over by rolling and/or belly crawling, play "pat-a-cake," turn light switch on and off, copy things mommy or daddy do

December
Favorite Things: cornstarch and water foop, green beans, my shadow
New Things I can Do: ride my rockinghorse and little tykes trike, eat "real food" through my tube and by mouth, cruise along furniture, climb into mom or dad's lap for hugs, crawl (1st time Christmas morning)

January
Favorite Things: Rachael Ray, Music & Learning Chair, spotted dog
New Things I can Do: stand up in my crib, get on my trike all by myself (just keep it from rolling away), walk with the push-cart 4-6 feet without help

February
Favorite Things: baths, spinning in circles...on my trike or on my back, basking in a sunny spot on the floor
New Things I can Do: stack a tower 3 or 4 blocks high, walk with the help of a walker, took my first bite ever

March
Favorite Things: puzzle and block table, Mother Goose Rhymes & Sounds "book"
New Things I can Do: go down the slide, "read" my books...hold them right side up and turn pages, play "So Big" and the pointing/flat hand copy game

April
Favorite Things: monkey beach ball, my indoor swing, chewing on my shirts with a thumb
New Things I can Do: my lick/like kisses, make the "mmmm" and "ma-ma-ma" sound

May
Favorite Things: grape sucker, puzzles, rocking chair with big-eyed farm animals
New Things I can Do: sign "Daddy," put all the pieces back in my shapes puzzle, drink "thick milk" from a sippy cup, stand (leaning against a leg or tree for support)

June
Favorite Things: fuzzy snowflakes in my Frosty Friends book, the set of stairs daddy build for me, the "wall of gears" at Children's
New Things I can Do: give "high fives," sign "hat" when I want my hat...and just about everything else, too, wave to somebody

July
Favorite Things: Leap Frog Shapes & Colors pop-up--I can open and close all 4 doors now, Baby Noah DVD (I guess some things never change!)
New Things I can Do: Climb up on top of people and give hugs, sign "light" and "want" in appropriate context, pull up to a stand using a pants leg, turn around, and holding hands "lead the way"

Keep leading the way Evan! I'm already excited about all the fun things you will do next year, that I'll get to scrapbook.

Sinus infection

Evan was diagnosed with a sinus infection yesterday. The culture of his nasal secretions was positive for a bacteria that he has supposedly been vaccinated for (I believe H. influenzae). Because he also had a temperature of 102, he got a catheter urine sample as well (to make sure there was no bladder/kidney infection, which there wasn't). Evan has been put back on Cefprozil for the sinus infection.

It's been a rough week, with lots of coughing, secretions, and infant tylenol drops. We had to cancel his sleep study scheduled for this Sunday. At least all of the recent eye poking is making sense now (due to sinus pain).

Feel better Evan!

PS Please say special prayers for our CHARGE friends Reuben and Caleb, and for our regular grown-up friend, Marsha. May they all continue to heal and come home to their families soon.

Patching Progress: A new use for "no-nos"

So if I said that the patching and glasses was going really well...that would be being a little too optimistic for the circumstances. He will occasionally keep the glasses on for short periods of time.

Here is a picture of Evan taking his glasses off:

And here is a picture of him keeping them on (although we did have to resort to some drastic measures):

We are hopeful that this is just like wearing his hat. Persistence over a few days will pay off.

Maxwell, CA

Yes--it really does exist. A town with the same name as our friend Mighty Max!

Slideshow of CA Trip Pictures

So I finally sorted through all of the pictures from our trip (I never realized how many pictures 400 really is...). The best ones are here. Apologies to CHARGE friends--I didn't realize how many pictures I did not take during the conference until now (unfortunately, most of the time I feel like playing photographer interfears with being an active participant. So if I am really interested in something, I forget about snaping pics).


CA Trip & CHARGE Conference 2007

New Glasses!

Finally, my new glasses have arrived (well, they have been at mommy's office since July 25th...but we had already left town). As promised, here is a picture of me in them. Mommy & daddy say I look very handsome. Unfortunately, compliments only go so far in terms of motivating me to keep them on. I lasted about 10 minutes today (and that was with me ripping them off 6 or 7 times AND being distracted by Baby Noah). In my defense, I'm still not feeling great from my ear infection and I didn't take a nap today either.

Tomorrow daddy and I are going to start fresh, and try the patch over my good right eye (mommy predicts this is all going to go over really well with me...but on the bright side at least she can tell her patients that she wouldn't prescribe any treatment for their kids that she wasn't willing to do for her own child).

I'll keep you posted on how it goes, and I'm sure mommy will take lots of pictures.

Love, Evan

Joyce

I know I was just complaining about being too tired to post much tonight, but I have to share this one story about a very special lady we met on our way home.

Last Friday, we stopped at the mall food court in Redding, CA for lunch. As we were eating, an elderly woman in a motorized wheel chair ordering at one of the counters caught my eye. She was having an animated conversation with the person behind the counter. Jeremy and I finished eating, and fed Evan at the table (btw, this is a new thing for us: we decided that Evan is not eating any more of his meals in the bathroom; we don't want him growing up thinking his g-tube is something to be ashamed of--if it bothers people, then that's just their problem). We all made one last "pit stop" at the restrooms, and I was waiting outside for Jeremy and Evan.

The elderly woman was wheeling towards me--I assumed she was headed for the bathroom so I stepped out of her way. She stopped and started talking to me. I had a very hard time understanding her speech (she had a unilateral facial palsy), but realized she was asking about Evan. She wanted to know his name and how old he was. Jeremy and Evan joined us right about that time. The woman told us her name was Joyce and she was 76 years old. Joyce was born with Cerebral Palsy. She was very proud that she had just graduated from college this past spring--it took her 5 years, but she finished her degree. We told her a little bit about Evan, and how we were just passing through on our way home. Joyce asked if she could pray for Evan (of course we said yes, although I wish now I would have asked her instead to pray for our CHARGE friends Caleb and Reuben). As she left, Joyce said that she saw us with Evan and thought that we looked like people that would be nice to know.

As we drove on that afternoon, I thought about Joyce and about Evan. Because of Evan, I come in contact with people I probably would not have otherwise. I don't want to say that B.E. (before Evan) I wouldn't have talked to Joyce, but I probably would not have had the patience--or the very personal motivation--to really listen to what she had to say. How many 76 year olds graduate from college, let alone someone with so many physical challenges and barriers to communication? How did Joyce know right at that moment we really needed the encouragement and hope that came from her story?

We're Back...

Sorry I haven't posted any recent updates. I didn't feel comfortable saying we were going to be out of town for two weeks (and I didn't know how I would talk about the goings on without making it pretty obvious that we were in fact away from home).

We made it home on Saturday afternoon, after quite a road trip. We drove from home to the San Francisco Bay Area, stayed there for 5 days, drove down to Costa Mesa (LA Area) for the CHARGE Syndrome Conference for 4 days, drove back to SF for another 4 days, then home. Evan was a good travel buddy, but that being said, I don't think any of us are anxious to jump back in the car anytime soon. It was good to spend time with Jeremy's family--many of whom had never met Evan in person until this past week. We also got to meet Cousin Jack. We had some car trouble and a flat tire. We all have mild colds and Evan has an ear infection--word on the CHARGE list is that this was a common "souvenir" to come home with.

I will try to summarize some of our adventures in future posts. I'm just too tired to do it now--I'm actually looking forward to going to work tomorrow so I can rest up from vacation!

PS Pictures from our trip are coming (I took almost 400 during the 2 weeks! The vast majority are from before or after the conference...sorry to disappoint our CHARGE friends). I'm uploading pics to a slide show as I type this.