i was just on the phone with an old friend and realized that today
is gavi’s birthday.
six months old for heaven’s sake. already?!
to watch lukey play outside
to kick his chubby baby feets in the kiddie pool
to have nibbles of baby food
to hear his daddy’s voice
loud rockin’ franti music in the car
to be by himself
to not be able to reach me while he’s sleeping
that i like to go out to late night concerts
sitting in the bumbo seat
to go to bed at night
…or take a nap
lucas and i were looking through old pictures on the computer
and saw one of me big and pregnant.
“ohhhhh!” he said. “there’s baby gav when he was still in your belly”
six months has happened in a blur.
Today's local audiologist appointment went well. The reason why I'm referring to it as the local audi, is because it's not the same audi that we see for Lucas's regular audiological and CI needs. We travel 80 miles to CHOP to see him. We haven't been back to this local audiologist since we got Lucas's initial diagnosis on that fateful February day.
I felt pretty sick as soon as we entered the parking lot. Luckily, they've hired a new audi to work specifically with kids, so that was something different. But, she took us to the same room where Lucas had his first 2 ABRs. It really made me sick to my stomach to sit in that room.
I took advantage of the situation, and told her about our new support group and listserv, and asked whether she'd be willing to share the information with her pediatric families. She seemed excited about it. I also told her about the brochure we're working on, and she's also willing to provide that to new families.
I thought about it for awhile, then I did it. I told her about the most frustrating part of the whole initial diagnosis process - the fact that we didn't really understand that severe-profound hearing loss meant that he was deaf. I told her that even if it is hard, from her perspective, to share that with parents of newly diagnosed kids, I find it to be important and valuable. Of course, I think it's important for her to choose her words wisely, and be as sensitive as possible, but I feel that after using the term, severe-profound hearing loss, that it's appropriate and necessary to explain that it's the same thing as what's commonly known as being deaf. She told me that they tend not to use the word "deaf" at all, and thanked me for the feedback. It felt good to get it off my chest. And maybe she'll at least think about it next time before she hands over that heavy diagnosis.
On a lighter note, Lucas got fitted for 2 earmolds, and that was it. Easy appointment. We're going to try a skeleton earmold with his CI, to help keep it on his ear. If we don't like it, oh well. We also ordered the Phonak Naida in gray, to match his silver CI. Soon after the appointment, I got a call from Lucas's insurance company, stating that he'd been approved for the hearing aid. That was quick. Now we just wait until the earmolds return, which should be in about 2 weeks. Then, we'll see what kind of reactions we get!
Now, to finish up our rounds, we just have to head up to New York state to meet Nolan and Ben, up to Toronto to meet Ava, then over to Wisconsin to meet Peas and AJ, down to St. Louis to meet Danny, and way over to Northern California to meet little m and Landry. Oh yeah, and on our way back, we'll stop in Texas, to meet Baby K, Alabama to meet Gage and Brook, and Georgia to meet Shiloh. Is anyone up for another road trip? Is there anywhere else we should stop? :)
We start each appointment with a heart echo. The last 3 times, Lucas has laid there nicely, while the technician does an ultrasound of his heart. Not today. Thankfully, she was still able to get the readings that she needed, but he was not a happy boy. From another room, you might have thought she was cutting open his heart, but really, she was just rubbing ultrasound jelly on his chest. It's such a tough age, because he's old enough to have fear, but not old to understand what's going on, even with an explanation. Hopefully it will go better next time.
Anyway, his heart is really the same, which is great news. The size of the left ventricle has not increased anymore, and since Lucas has grown, the proportions are just barely above the normal range. The doctor didn't even bother to get out a new heart diagram and draw what Lucas's heart looks like compared to a normal heart, because it's the same as last time.
We were done in under an hour, which is record time. And we don't go back until April. Can't beat that.
we live right next to a big ‘ol empty field. it’s made of dirt and sagebrush. and it’s really hot outside. we were just talking the other day about how it’s probably home to all kinds of crazy creatures.
on monday, early afternoon-ish i got a call from andrey.
“i’ve got some bad news,” he said.
“i saw a mouse in the kitchen this morning.”
apparently he’d seen a mouse in the pantry – chased it through our bedroom where i had been sleeping soundly with gavin and into our bathroom closet. where only a few hours before this phone call i had dug through to find my other gray flip flop. like really DUG through. he then made the decision to go ahead and leave for work anyways.
and then the decision to not call and let me know until well into our day.
i grabbed my kiddos and left the house. we didn’t come home until andrey was home from work.
later that night we scrubbed this house. every.single. crumb. and by we – i mean andrey. while i stood on a chair and kept a good look out. a totally necessary task.
and set a few traps.
my call to andrey early this morning:
me: ummmm. babe? that trap we have in the laundry room – you know??? the peanut butter is completely gone. seriously! like completely! that beast licked it clean!”
andrey: what?! what the <<@!#$>> kind of mouse traps did you buy?
me: what the <<@!#$>> kind of mouse are we dealing with here?!
that teeny tiny thing has got me all freaked out. i will NOT be switching over the laundry today.
that RAT is ferocious!
what do i do?
i want my dad.
Lucas tested well in the booth today, responding to speech at 20-25 dB. Our audiologist tweaked his program a little bit, but mostly left it as it is. Unfortunately, he had to turn off 2 of Lucas's 22 electrodes, because they were misfiring. I'm very disappointed to hear that. However, with them turned off, he can probably hear better now, than with the electrodes misfiring. Our audi didn't seem concerned, although I was. He said sometimes they come back, so we'll wait and see.
We are officially getting a hearing aid for Lucas's left ear. Because CHOP is not a durable medical goods provider, they can't order and process a hearing aid for him, so we will be doing that closer to home. We will probably go with Phonak's Naida, a very high powered digital hearing aid. Although it will not give Lucas access to spoken language, it may help him with localization, and loud sounds. Again, I would rather be getting him a 2nd implant, but since that's not an option right now, we're doing the next best thing.
But, we took it off to splash in the pool with his cousin. We were taking no chances!
Part of the secret is wig tape. Landry has been doing this since the beginning! We'll see how long it lasts though. We may be back to the babyworn soon. It works well for us too. I just wanted to try something different!
We got to meet Jodi and Jordan, Tammy and Aiden, Marny, Jen and George, and a few other great families! Jodi is definitely as cool in person as she is on her blog, and so are her kids! She had a special connection, and all of the kids got to meet Batman, Robin and even the batmobile! Lucas wasn't too sure about Batman though.... Thanks for that, Jodi!
After the picnic, we spent the rest of the day with Tammy and her family. I swear I felt like I've known her for a long time, and we just had the best time together. We've been in touch since last June, when we found each other's blogs through blog networks. Aiden is just a few months younger than Lucas, and we've been going through this whole process together. Our little men finally got to meet, and boy did they have a blast! Our hubbies got to meet too. What a great guy Tammy is married to! We thoroughly enjoyed both of their company.
They're so much alike. They have the same hair color, same eye color, they're about the same age and height/weight. Aiden's sister did a double take at one point, because she thought Lucas was Aiden for a second! They also are both into everything, and climbing everywhere. And they're both so outgoing and full of personality.
Isn't Aiden such a cutie?
Last summer, Tammy and I talked about how one day we would have a toast to our boys, with a great tasting Dutch beer (in honor of the poem, Welcome to Holland, which helped us get through the beginning stages of our journey). We settled for Belgian beer... close enough.
Thanks for a great day, Tammy! I hope we can get together again soon!
Our meeting at the park was really fun. All 3 kids are at different stages of the journey. Allison is 6, Lucas has been activated for 6 months, and Lily will be implanted in just a few weeks. We shared our experiences of diagnosis, and the milestones and challenges we've encountered so far. Lily's mom and I got to see a real live, very successful older CI child, and it was really amazing.
Ultimately, we met for the same reason that we read each other's blogs and offer support. We just get each other, and there's no explanation needed. As Nate said when we left the park... "You guys really acted like you already knew each other." Our experiences bring us together as if we've known each other for years.
Thanks for a great day. So glad we could meet you all!
I held the rope nervously as a man twice my age with four times my courage ascended the runout face climb.
John Bachar moved with a delicate grace. His feet transitioned smoothly onto each rugosity of Hammer Dome's classic 5.10c Shadow of Doubt. At each bolt, he stopped, leaned into the wall and mimicked the stance that he would take if he had been the first ascentionist hand drilling the route on lead. John climbed the route with a casualness and poise I had never seen.
On Sunday, July 5, while climbing on the Dike Wall in Mammoth, John fell. It is unknown what caused his fall or where exactly on the wall he was. John laid in a pool of his blood, breathing but unconscious. The rescue team moved as quickly as possible, carrying him across a boulder field to a nearby lake, where they loaded him into a motorboat and brought him to Mammoth Hospital. John died in the hospital, due to the severity of his injuries.
John Coltrane belted into a funky solo on his sax as John scrolled through his slideshow and dozens of photos of soloing in Joshua Tree. There was John bouldering on Up 40, sticking it out on the line on More Funky then Monkey, and being cool and composed on Father Figure. Hearing the voice of Johnny Rock describe soloing touched me. He spoke about slow warm ups, about taking a fresh approach to soloing everyday. Cool and calculated emotions controlled his ropeless climbing; when he felt off or insecure in his movement he simply stopped. Soloing was an integral part of the climbing experience.
A few days after John’s slide show, I found myself at the base of Joshua Tree’s North Overhang on Intersection Rock. Four and a half years earlier, I fell from the top of the formation while free soloing. My body flew seventy feet before hitting a ledge. I rolled off and fell another thirty feet to the ground. I laid in a pool of my own blood. It was a lonely place. I had 8 surgeries, spent 81 days in the hospital, and returned to climbing 381 days later. John inspired me to return.
The four-runner bumped, shaking its black frame side to side, as Public Enemy belted heavy, old-school beats. The SUV parked on the side of 120 between Tenaya Lake and Tuolumne Meadows. The bass kept booming as John, Lucho, Linh, and I fell out of John’s rig.
We marched a long thirty minutes to South Whizz Dome, wheezing from the high altitude of Tuolumne. We skirted a small marsh, then hit a small slope of granite. Just around the corner from the start of the dome came the wall- a hundred fifty feet of technical steep edges and knobs. Kurt Smith and John established many of the hard, run-out, ground-up test pieces. John made the first ascent, on top rope, of a beautiful black streak in the middle of the wall. From a ledge sixty feet off the ground, Blackout follows a series of walnut knobs for sixty feet. Kurt onsighted the route, drilling two bolts on the lead, snagging the first lead ascent, and solidifying the 5.11 route as a serious undertaking. The route with its old bolts, and scary old-school vertical climbing is the definition of a “museum climb.” John flaked out the rope, grabbed two quick draws, and a couple of cams.
After fifteen feet of delicate climbing, John clipped a quarter inch rusty bolt. Another twenty feet passed before John clipped another rusty quarter incher. He moved slowly, placing his feet, shifting his hips, and transferring his weight onto the overhanging knobs with the elegancy of a ballet dancer and the funk of Flavor Flav. He danced his way, unprotected for thirty feet, to the top.
A few years prior, John crashed his car while driving back from the Outdoor Retailer show in Salt Lake City. The vertebrae in his spine were fused and he had limited mobility in his neck. We talked extensively about recovery, about the best ways to deal with trauma, and return to climbing. John told me my recovery was impressive. “You’re one of my heroes,” he said. Watching John climb Blackout, to fight his injuries and return to climbing as bold as before, made the metal in my spine become a little more pliable.
I free soloed the North Overhang. It was a cathartic experience for me. If I had fallen again, I would have wanted to die. Trying to fight through the pain would have killed me-if not physically, then emotionally and mentally. John’s candid talk about soloing invigorated me, and reminded me how precious those ropeless moments are. His talk planted a seed in my mind to return to Joshua Tree.
A week before he died, we talked about meeting up this summer to climb some more scary routes in the meadows. I wanted a ropegun and John’s passion for climbing was insatiable. He wanted to get his granite legs underneath him before heading to the meadows. John always climbed so solidly. It pains me to think of him falling. John was a legend. A man made immortal not just by his deeds but by who he was. He will be missed.
the 3 months old baby elephant, Beca
a week old baby silver langur, born orange
Lucas posed with a few animal statues...
And went on a boat ride like a big boy.
Then he zonked out and we headed back to my Aunt Ruey's house, who we're visiting in Columbus.
What a day!! I highly recommend this zoo!!
<<this years summer shoes - my version of the ruby slippers>>
friday night lucas had a break-down. we were on day eight of a trip that was supposed to only be four days long. he missed his dad. sobbing. he missed his house. more sobbing. he missed his ice cream truck. sob, sob, couldn’t catch his breath sobbbbbbing. my mom visited us in the yellow bedroom snatched up my crying little gavi-baby so i could snuggle lucas in his heartbreak. once they all quieted down we hustled through the late night hours and packed up the green passat after deciding to leave the broke-down (sob, sob, sniff, sniff) gray passat behind.
Lucas practiced his walking too. He's almost there, by the way. Yay! Finally! He's taking steps, even up to about 10 on his own. I'm pretty certain he will be really walking on his own by the end of the summer. It will be a very exciting day for me! This morning he was even trying to stand up from the floor without anything to hold on to. You can tell he really wants to walk, at the very least. Go Lucas!
The Children's Zoo is especially fun there! It's more than just a petting zoo! Lucas got to sit on a tractor with Aunt Kristin... oooooh!
And lastly, no trip in southeastern Pennsylvania would be complete without some plain people. The Amish like to visit the zoo too!
bears, oh my!
Lucas learned the sign for monkey while we were there, yay! Tomorrow we're off to the Philadelphia Zoo. We got free teacher passes for the summer, so we're taking advantage of it!
So, we played inside instead. Lucas quickly found his sand toys (thank goodness Aunt Kristin cleaned them before we left the beach). As soon as he picked up the orange shovel, he crawled over to the cat food. Then he came back, got the gray shovel and went back. "Hmmm," I thought, "what could he be doing?" And this is what I discovered.
Yep, he was digging with his sand shovels in the cat food. Lovely. We really need to get this boy a sandbox.
I decided that I needed to find something else for him to dig in, so I got out a big plastic storage container and some cheerios.
You can tell by his cat-food-eating-grin, that he's pretty excited by this. But, with only one container, he wanted to transfer the cheerios with his shovels into the cat food dishes. So, I got out a second container.
Much better. So, we spent a good 1/2 hour shoveling cheerios back and forth between 2 plastic containers. It was a great language opportunity too... shovel, scoop, pour. The cheerios make great sounds in the container too. Lucas got sick of the shovel after awhile, and...