Wake Up Call

It's an interesting adjustment traveling with Connor and staying at someone else's home now. For one thing, I have to kick my parents out of their ground floor bedroom because I don't feel comfortable carrying my super-wiggly child up and down the stairs several times a day. It's getting to be more and more of a hazard. There's also all the pieces of equipment we take for granted at home that are missing here: equipment like Connor's bath chair. I lay Connor down on the floor of the shower yesterday and used my parent's handheld shower head to wash him. It worked okay at the time. Unfortunately when I turned the water off and put the shower head back up, I neglected to pay attention to which direction it was pointing.

So this morning I crawled out of bed, opened up the shower door, turned the lever on with a quick jerk of my wrist, and got a blast of freezing cold water directly in the face. Sputtering and feeling around blindly I managed to turn the water off, but not before soaking the carpet, the vanity opposite the shower, the mirror, the ceiling, and of course myself. I dried everything off, carefully turned the shower head to face the back of the shower and turned it back on.

So apparently the handheld shower head has to be put back on the wall with the hose twisted in a certain direction. Otherwise, the water pressure when you turn the shower on causes the head to turn to face the door of the shower, as I discovered when I received another ice cold blast of water up my nose.

That's one way to wake up in the morning.

~Jess

Texas: Day 4

Connor didn't sleep very well last night; I think the heat is getting to him. He's always had a bit of a temperature regulatory problem, and the change from the 70 degree weather in Puyallup to 100 degree weather here has been pretty difficult for him. Any time out in the heat at all and he ends up flushed, sweaty and uncomfortable. He's reacted to the heat in his usual way-- he's breaking out in hives. He's also having some issues with reflux-- he's thrown up the past two nights in a row-- and he hasn't had issues with reflux for a long, long time.

We've had to come up with some creative ways to keep him cool. Someone goes out and turns the air conditioning on to cool off the car about five minutes before we put him in. He's been going shoeless and minus his back brace. We're sticking to the indoors-- I haven't been outside with him except to get to or from the car. He's asleep right now in our bedroom with the fan on high. I have to admit that the heat is getting to me a little bit too. It's great to see my family, but I'm sure looking forward to enjoying my Pacific Northwest summer weather when I get back.

~Jess

Texas: Day 3

I went down to the hospital and visited for a good long while today. My grandfather isn't able to talk right now, but he can nod yes or no and obviously understands pretty much everything that's going on. He was awake when I got there and stayed awake the whole time I was there.

It's funny, but since I have a child who is non-verbal I'm very, very comfortable with keeping up a one-woman monologue. I told him all about Jer leaving for Afghanistan, family news, how my garden was looking-- I basically rambled on about anything I could think of. I told him to blink or nod if he wanted me to stop. Occasionally he'd close his eyes and I'd think he was falling asleep so I'd stop talking, but then he'd open them up again and when I'd ask him if he wanted me to keep going, he'd nod. We're going to bring him up an audio book to listen to tomorrow; he nodded when I asked him if he'd like one and it's got to be terribly frustrating and boring being in there and not able to move around or hold a conversation with anyone.

This evening my mom was sweet enough to watch Connor again for me and I went out with my brother and his wife to sing some karaoke. We picked the wrong night and the wrong bar for it; I have no idea where these people came from, but there wasn't a single person who got up in front of the microphone that didn't sound like they could sing for a living and actually make money. It was terrible; not a single group of drunk women singing "Baby Got Back" or "I Got You, Babe"-- I got sandwiched in between the guy with a voice that was a dead ringer for Eddie Vedder and the chick who sounded exactly like Patsy Cline. I love to sing, but I get nervous even on a typical evening when I'm following the Baby Got Back Chicks, let alone when I'm by far the worst singer getting up on the stage, and being nervous never does good things to your singing. I have a decent voice, but these people were good. At any rate, we enjoyed ourselves (and listened to some ridiculously awesome people sing) but I think I'm more comfortable with private karaoke rooms and tiny little dive bars.

They did have this longhorn head mounted on the wall that blew steam out his nose when the DJ pulled on a rope, though. That was pretty cool.

~Jess

Texas: Day 2

Spent most of today taking it easy, which was nice. Connor's been much, much better as far as his comfort level on this trip when compared to the last one; probably because we haven't been nearly as busy right off the bat. He's eating well, which is good, and he hasn't degenerated to that screamy, crabby kid.

Walked around one of the big malls here today with him-- there's absolutely no way I can get any exercise at all outside, as it got to around 104 today and Connor just wilts in the heat. We stood outside for about five minutes talking to one of the neighbors and the little guy was already sweating, flushed and uncomfortable. The huge mall we went to actually has a full-sized carousel inside near the food court, and we took Connor for a ride. He wasn't quite sure what to make of it when he was on the horse-- I think the mirrors and the lights kind of hypnotised him-- but as soon as the horse slowed down and the music stopped he got really excited, so I think he was having a good time and didn't want it to end.

Saw my sister and her fiance briefly, and hopefully will get to see more of them this week. Mom and Dad watched the little guy while I went out with my brother and his wife to see a movie, which was fun. We got back at just past midnight, which is why this blog post is late. It's only ten o'clock for me because of the time zone change, so I figured I'd go ahead and blog.

I found out they're giving us 40 hours of respite care next month instead of our usual 25-- I am seriously excited about this. I'm not sure what I'll be doing with all of it, but no doubt I'll figure something out. Too bad they waited until Jer was gone-- we could have gone on a weekend away!

My grandfather is still doing well-- it looks like he'll probably be several weeks in the hospital, as they'll have to slowly step him down out of the ICU and get him hooked up with services. I didn't get the chance to go see him today, but I'm sure that we'll go tomorrow.

Well, I'm off to bed!

~Jess

Texas: Day One

We're here!

The flight was wonderful, or at least as wonderful as flights in these sort of circumstances can be. Connor behaved himself beautifully, though we did have one point just before take-off where he got really excited because he knew that Daddy had flown on an airplane too and so he thought we were going to see him when we got off the plane. I was telling him about all of the people that we were going to see when we landed, and he kept saying "No, Daddy! Daddy!" I had to explain to him that no, we weren't flying to see Daddy, because Daddy was in Afghanistan and not Texas. He got kind of upset. That was a whole lot of fun.

Anyway, more encouraging news about my grandfather-- his stroke affected a fairly small area; a portion of the cerebellum and a tiny bit of the medulla oblongata. This means that there's a good chance his cognitive function has been pretty much unaffected. He'll probably have difficulty with things like swallowing, speaking (his speech may be slurred) balance and coordination, but these are all things that can be worked on. The doctors seem pretty optimistic that he'll continue to recover in the weeks to come. I got a chance to see him briefly this afternoon; he's still pretty heavily sedated so he wasn't really communicating, but I thought he looked pretty good.

Thanks, everyone, for the encouraging words.

~Jess

Update

I'm leaving this morning for my flight to Texas-- I'll be arriving in mid afternoon there. I should have Internet access, though I probably won't be posting pictures.

I haven't had an update about my grandfather yet this morning, but as of last night he was able to understand those around him and answer coherently questions put to him with gestures (though not with speaking) so all things considered he's doing pretty well. You can work of the physical issues related to a stroke-- it's the cognitive issues that are most worrisome because it's much harder to do something about those. We're not out of the woods yet, but things don't sound nearly as grim as they were earlier yesterday.

They were able to give him a powerful anticoagulant within the first hour after he had the stroke; something that's pretty helpful towards limiting more damage. He was driving when he had the stroke, realized something was happening and managed to pull over to the side of the road before it really hit. Luckily my grandmother had a cell phone with her. If my grandfather had been asleep in bed, as he usually would have been at that hour, he probably wouldn't have gotten to the hospital in time.

I feel much refreshed after having had some good uninterrupted sleep-- I was running pretty close to empty yesterday as I'm not one of those people who can go with two or three hours several nights running and function. At any rate, I'll keep you all posted from Texas and let you know how things are going.

~Jess

In Which Even More Fun Occurs

Well, good to know that God has an impeccable sense of dramatic timing. I'm running around trying to get things together here for a trip down to Texas; my grandfather took a turn for the worse but has rallied and is holding his own right now. I still feel like I need to go down there, though, so we've got plane tickets booked.

Anyway, I called up Connor's hospital to let them know that we'd be going on a trip. I do this whenever we leave the immediate area as a precaution so that if something untoward were to happen while we were in Texas the doctor would have already reviewed Connor's file and be ready to advise treatment, fax medical records, authorize procedures, etc.

Anyway, I'd called our insurance company, Tricare, about a week ago to see who Connor's new Primary Care Manager would be-- I knew that Dr. Adams, his primary pediatrician, was supposed to leave at the end of May but I hadn't heard anything regarding the new doctor he'd been assigned. They told me that no, Dr. Adams was still there and still Connor's doctor. I figured his timeline had just changed or something. Fast forward to today. I call up the pediatrics department and they inform me that not only did Dr. Adams leave two and a half weeks ago, but that they haven't assigned Connor another doctor. I have them transfer me to Connor's developmental pediatrician Dr. Aranda, who tells me that she is actually leaving the hospital in four days. They haven't assigned Connor another doc in that department either. This means that my son-- you know, the one with the twelve-inch thick medical file whom I periodically have to perform mouth-to-mouth resuscitation on-- has NO GENERAL DOCTOR WHO KNOWS HIS MEDICAL HISTORY.

Not cool, people. Not cool.

After I finished hyperventilating, Dr. Aranda (who didn't have any idea that we hadn't been assigned a new PCM) said that she'd personally ask one of the best doctors on staff to take us on. This makes me feel slightly better, though it still means that I'll be getting on a plane with no contact information for a doctor I don't know the name of who has never seen Connor before except on paper.

Gotta love military hospitals. This day just keeps getting better and better.

~Jess

Prayer Request

Just got the word that my grandfather's had a stroke. He was in the car driving and managed to pull over; luckily my grandmother had a cell phone with her and was able to call 911 right away. He's in the hospital on anticoagulants-- no real news on his condition. Please keep him and my grandmother in your thoughts and prayers. I'll keep you all posted.

~Jess

Deployment...Take Three

It's weird writing about Jer's deployment, because I'm used to writing about things while they're happening, and you can't really do that in this case. It's a security thing: the same reason that I don't write specifics about his job, where in Afghanistan he's going, when he'll be back, etc.

Anyway, so remember when I wrote about Jer leaving? About eight hours after I posted that, I get a phone call from my husband. Turns out their plane broke down and they'd decided after sitting for six hours on the tarmac that maybe they should just let everyone go home. He was supposed to report back in the next afternoon.

We show up dutifully the next day, having said our goodbyes again, and guess what? The plane was still delayed. We were told to come back at around two in the morning.

Okay, this is going to sound kind of callous, but here it goes. Saying goodbye once? All well and good. Saying bye twice? You start to sound like a broken record, but still okay. Saying goodbye three times? Awkward. It's not that you don't enjoy any additional time you've got with them; it's that you've already said everything that you can think of to say the first two times, and you're so emotionally exhausted that you just kind of wish it was over with. Our first goodbye spanned several hours and involved many tender declarations of love, a few tears being shed-- you get the picture. Our second goodbye was a considerably shorter clone of the first. The third time the entire farewell happened as he was getting out of the car. I believe I said something along the lines of: "Love you. Don't forget your wallet."

Not to mention the fact that Connor now believes "Daddy is going to work and he won't be back for a long time" means that Jer will be gone about twelve hours. No doubt this has really, really helped him understand the concept of deployment. Blegh.

At any rate, it's been a while now and I haven't received a phone call yet, so I figure one of two things has occurred:

Scenario One: Jer is in Afghanistan.
Scenario Two: Due to an overdose on those little packets of pretzels Jer is comatose on a still-broken plane. I figure those things are toxic at high consumption levels.

Maybe the third time's the charm.

~Jess

Keeping Connected

It was hard trying to figure out ways to not only prepare Connor for Jeremy's absence, but also to keep him connected with his Daddy during Jer's long deployment. Part of the problem is that pretty much all of the materials available out there explaining deployment to toddlers are not accessible to Deaf or HoH children. Sesame Street put out this great video for children between the ages of 2-5 about deployment called Talk, Listen, Connect. It's in both English and Spanish, which is nice. Unfortunately sign language or closed captioning are not options available, so to my son it's pretty much just a bunch of cute puppets bobbing around on the screen. Most of the books out there about deployment seemed to be aimed at children in the 5 and up category.

There's also the problem that Jer is much more likely to be able to telephone home than to chat front of a video camera-- web cam times may be few and far between, and with the time difference there's a likelihood that most calls will fall while Connor is asleep.

We ended up making an hour-long videotape, broken into several segments, of Jer sitting with Connor and signing his favorite stories and songs. That way Connor can "see" his Daddy talking to him every night before bed, and that will hopefully help keep him connected. Jer signs and talks with Connor about the deployment, says that he'll miss Connor and will think of him every day-- pretty much what's on the Sesame Street video, only with SEE and without the giant fuzzy monsters. It's not the best solution in the world, but it's a start. Anybody else have any suggestions on we can keep Connor connected to his daddy?

~Jess

Leavetaking

Yesterday, Father's Day happened to fall on the longest day of the year. For me it was not nearly long enough.

We spent the day quietly at home, enjoying each other's company. And when the day was over, we loaded Jer's things in the car and drove him to his meeting point, where he kissed us goodbye. And while the rest of the world slept, my husband donned a uniform, boarded a plane and left for Afghanistan.

Stay safe, honey. We love you. We'll be waiting for you when you come back home.

~Jess

Getting My Priorities Straight

I've been slowly, slowly getting back into an exercising routine. I used to be really in shape, but in the three years since Connor joined us my exercise has been put on a back burner and I've gradually gotten out of the habit. Part of the problem is lack of time-- a constant stream of hospital stays, doctors appointments and therapy sessions makes me want to spend what little free time I have sprawled on the couch instead of getting up on a treadmill. Logistics come into play too, as in the past it's been tough to find exercises I can do with Connor in tow, and doing the same five exercise videos in front of the television (as we don't have TV reception, videos and DVDs are what I've got to work with) gets boring after a while.

These are all just excuses, though-- the truth is, and many of you can probably relate to this-- it's really easy to get so wrapped up in taking care of my son that I put my needs and health on a back burner. If I have a conflict and am required to make a decision between canceling say, my dentist appointment or Connor's, I know which one I'd choose every time. The same goes for a therapy session for him or time with friends for me, and so on and so forth. It's really easy to feel guilty about indulging in something like, for example, a manicure, when I know that I could be doing yet one more round of play therapy with my son instead.

I finally woke up one morning a while ago and realized that if I neglect my health and something happens to me, all of the sudden it's not just me with the problem. With Jer being in the military, I end up being an on-again, off-again single parent. If I get too stressed while my husband is gone and have a nervous breakdown, or I don't take care of myself and end up sick, who's taking care of Connor and the now invalid me? No one.

So I've learned to be a little selfish again. I'm setting aside money in the budget for a monthly massage. I'm trying to stop agonizing over taking some time for myself, even if it means that Connor isn't getting quite as much of my attention during the day. I'm eating healthier and sleeping longer. And I'm slowly, slowly getting back in shape. It's true that Connor and Jeremy will always be my first priorities, but now I remember one important truth: if I want to continue to care for my loved ones, first I have to care for myself.

~Jess

photo for this blog post is by the lovely Lucie over at LZH photography

Pool Time!

Jer and I thoroughly enjoyed our date. It's so nice to have a chance to kick back and spend time just the two of us-- the respite care really has been a Godsend.

We took Connor down to the swimming pool today for the first time this year. Last year when we tried this it was an unmitigated disaster. For starters, pools in the Pacific Northwest never really get hot. Rather, they go from dangerously cold in the winter to seriously freezing in the summer. With his temperature regulatory issues, indoor pools are really the only pool Connor is able to enjoy here without some sort of tiny wetsuit, and I'm pretty sure they don't come in his size.

I take that back. I googled it and apparently they DO come in his size. Because if there's one thing your three year old needs to add to his summer activities, it's scuba diving. Right.

Anyway, last year when we tried the indoor pool near our house on Fort Lewis not only was it still too cold, but the echoing noise from all the other screaming kids and the splashing was way, way too much for him sensory-wise, and he had a complete meltdown within about five minutes. The acoustics in swimming pool area, especially indoors, are really, really bad for people who are Deaf or HoH, by the way, which probably didn't help any. That was our only swimming expedition of last year.

This year we walked down to the indoor pool in our apartment complex. It had been raining earlier in the day, which meant less people at the pool-- though if you think about it this is kind of silly, as not only is the pool indoors but you're going to get wet anyway. Oh well. At any rate, we pretty much had the entire pool area to ourselves. This pool was much warmer than the one we tried last year, and Connor actually seemed to enjoy himself-- he even did some kicking on command! We spent about 45 minutes there practicing standing, doing some therapy exercises (such as the kicking) and playing games that I remember playing in the pool with my parents when I was a little kid, like the "Motor Boat" game. I'm thinking that we'll be coming back soon.

Best of all, Connor crashed immediately after we came home and took an hour-long nap. Anything that will get my child to sleep during the day is a good activity by me!

~Jess

Writing For Hopeful Parents!

Connor did some fingerpainting this morning! We saran wrapped his g-tube so he wouldn't get it all messy. Rolling your child in saran wrap is kind of fun, by the way.

Um, yeah.

Anyway, just wanted to let you all know that once a month I'll be writing an article for Hopeful Parents. You can find my first one up over here.

Never fear-- I'll be blogging here as usual, though my post may be a little late tonight as Jer and I have a date!

~Jess

Bear Hunt!

Connor enjoyed his Toddler Treasures storytime today! Here he is touring the children's library. They have LED stars on the ceiling that twinkle, and he was fascinated by them. He's looking at them and using his home sign for "light" in this picture. It was pretty darn cute. I gave him a couple of choices in reading material for the week, and he picked out a book about bears to bring home, which was a lucky coincidence as the theme for Toddler Treasures was also bears. We read a couple of books about bears, played rhythm sticks along with the "Going On A Bear Hunt" song, and colored a bear picture with crayons, among other things. We made a definite commitment to come back next week, as Connor had a blast! He especially liked the part where we climbed up and down the tree once we'd seen the bear because you had to hit the rhythm sticks together really fast, which is apparently hilarious.

Later in the afternoon Connor accompanied me to our apartment complex's gym for a workout. I was a little nervous about it, as this was our first trial run together and I was afraid he'd get bored and start protesting at the top of his lungs after five minutes or so, at which time I would feel obligated to leave. I couldn't take his favorite toy, the Spin and Sing Alphabet Zoo, as I have no doubt that the "bloop bloop bloop" of the jellyfish would probably cause the other gym patrons to snap me to death with their towels.

Luckily my death was averted as I found an alternative toy to keep Connor busy. He has this yellow spiky worm toy-- one of the ones we bought for his sensory therapy. I'll try to take a picture of it later. Anyway, the way Connor plays with this toy is pretty simple. He picks it up, extends his arm, and drops it off his wheelchair tray, at which point I'm supposed to pick it back up again so he can pick it up and drop it off again. Well, the worm has a loop at the top of his head, probably so you can hang him from something, and I threaded Connor's shoulder harness through it.

I was able to spend an incredible half an hour on the treadmill while Connor attempted to get this thing off his tray. He tried pulling it. He tried sweeping it with his hand. He tried banging it on the tray to see if maybe it would go through. After about six or seven minutes of working at it one way, he'd stop and stare at his hand for a while. You just see the little wheels turning in there. Then he'd try a different way. He didn't yell once during that whole time and not a single fellow gym-goer tried to maul me with their towel.

As soon as I was finished working out, I unhooked the worm from Connor's shoulder harness. He immediately got very excited. "Want want want!" he signed, staring at it. I laid it carefully on his tray. Grinning from ear to ear, he immediately picked it up and dropped it off the side. Victory was his!

We'll go for round two tomorrow.

~Jess

Library Storytime In Sign!

Tomorrow, Connor and I will be heading down to the Puyallup Public Library for our first Toddler Treasures Summer Storytime session. We'll sit and listen to a book being read, learn rhymes and songs, and do a craft. I thought it would be a really great activity for Connor (especially because it involves books, and you know how I feel about books) and that it would help continue to prepare him for preschool.

That's not the really cool thing about these sessions, though.

The really cool thing is that not only are they going to let me come in an hour early and meet with the children's librarian so that I can go over the book and song selection for the day to make sure I can sign it for Connor, but they plan to hire a SEE interpreter just so he can participate in storytime.

All I had to do was ask.

Actually, I just asked for the time to go over the book and if they would wear his FM system. They offered the interpreter entirely on their own. It took me a visit and a couple of phone calls to track down the right person to talk to, but once I got a hold of the children's librarian it was smooth sailing from there. She said it might take them a few weeks to find someone, but that once they do they'd keep them on as long as Connor wanted to participate in the story times.

I've been amazed time and time again by the lengths people will go to in order to make sure Connor is included as long as I work up the courage to let them know what he needs. Sometimes I have to force myself to do it, because my pride gets in the way or I don't feel right asking for special treatment-- I just have to remember it's for Connor's benefit and not my convenience and then I feel better about asking. Results like these remind me why I do it! This is a totally free program the library offers, and they're doing this entirely on their own merit. What a great library-- yet another affirmation that moving was the right choice for us.

I'd say my mood right now is somewhere around dazed glee. Bring on the stories!

~Jess

Grow Little Grow Worm, Grow!*

Connor's been doing some major growing around here!

As you all probably know, Connor is a really little guy. And when I say really little, I mean little as in "he fell off the bottom of the growth chart when he was two months old and hasn't been back since" little. Disregarding the whole heart-defects-and-missing-kidney-and-taking-blood-thinners-and-poor-muscle-control thing, I would be destined to suffer disappointment if I had dreams of him pursuing a professional basketball career. I mean, up until about three months ago, my cat outweighed him. Granted, Loki is a pretty big cat, but that's still kind of ridiculous.

At any rate, I'm not sure how it happened that I managed to give birth to a child who can literally sit around all day eating and still not gain any weight, whereas I can merely glance at a bowl of ice cream and it flings itself across space and gloms directly onto my hips. Connor has been this way since the very beginning. When the little guy was born, he weighed 5 lbs, 14 oz, and when we brought him home almost six weeks later, he weighed exactly 5 lbs, 8 oz. During his hospital stay he dipped as low as 5 pounds even. Granted, he was on a diet for three weeks of nothing but IV fluid and TPN Lipids, but he didn't ever catch up once he switched to more substantial fare; he wore 12 month clothing from the time he hit 18 months old until he was two and a half for goodness sake. As to why exactly he's so small: maybe a crazy metabolism or some issue with pulling nutrients out of his food-- who knows?

One of the big reasons we got the g-tube was that in the past few months while Connor was still gaining weight at his usual plodding rate, he'd sped up a bit on how quickly he was growing upward, so his length-for-weight proportion (the only growth chart he's ever been on barring his first two months of life) was slowly edging towards the ominous blank space below the 1st percentile line. I don't care how tall he is or how much he weighs, but I do want him to be proportionate. Not only did this imbalance make it impossible to shop for shirts (all the ones long enough for him made it look like we dressed him in brightly patterned cloth sacks) but he was starting to take on a bizarre appearance undressed as well-- his round pinchable cheeks and chubby legs and arms are part of his genetic condition, so he loses fat there last. Picture the torso of one of the kids in those brochures about starving children in Africa meshed with a Pillsbury Dough Boy head, arms, and legs. Yeesh.

At any rate, Connor's g-tube has allowed us to put him on a diet with an insane amount of calories for a three year old of his activity level without me having to spend every waking moment feeding him. It's taken a lot of the stress out of getting him to eat, too; I know that if he doesn't finish every meal it's okay, as we can make up the lost nutrition through the tube at night. He's on a 1300 calorie diet. A typical running, jumping, hyperactive three year old needs between 1000-1400 calories. A kid as sedentary as Connor? That's a pretty crazy amount of food. At any rate, now we're finally starting to see some results!

We drove down to our hospital for a weigh-in today, and Connor tipped the scales at exactly 25 pounds. That means that in the past 48 days he's gained a pound and a half! Now that might not sound like much, but keep in mind that his typical rate for the last year or so has been only 5 grams a day. There are a little over 453 grams in a pound. That means that in the past, it would have taken him about four and a half months to gain the same amount of weight! This represents a huge increase in his rate of growth. He's also grown an inch and a half in that same amount of time, and is measuring a still-tiny-but-more-respectable 2 ft, 10 inches tall. He's pushed his length-for-weight percentile back up from the 4th percentile to somewhere around the 12th percentile, and he's now hovering just below the bottom line on the weight-for-age chart. In the next couple of weeks, he might just make it back up on those lines for the first time in well over two years.

I'm so relieved that his crazy high calorie, high fat diet is paying off! Now we just have make sure we don't overshoot and turn him into a butterball.

Grow Connor Grow!

~Jess

*To the maybe two other people out there reading this who are also Lilla Cayley Robinson or Mills Brothers fans or at least know who they are: my apologies for the bad title. I couldn't resist. Also, I would like to state for the record that Connor has turned on both the AC and the DC. Um, yeah. Sorry.

In Which I Get Myself Worked Up Over Things I Have No Control Over

Well, son of a gun.

I'd intended to return you all to our regularly scheduled Medical Monday program, and I was doing research to that effect, when I stumbled on a couple of crazy articles linking Usher Syndrome Type 2 to not only the 1q gene, which I already knew, but 15q as well.

Here's a blurb about Usher 2 I pulled right off the NIDCD's website:

Type 2

Children with type 2 Usher syndrome are born with moderate to severe hearing loss and normal balance. Although the severity of hearing loss varies, most of these children can benefit from hearing aids and can communicate orally. The vision problems in type 2 Usher syndrome tend to progress more slowly than those in type 1, with the onset of RP often not apparent until the teens.

RP is retinitis pigmentosa, by the way. Now, obviously Connor doesn't have Usher syndrome-- you have to have no issues other than the hearing loss and RP for that to be your diagnosis. For that matter, Connor's hearing loss isn't presenting like Usher syndrome Type 2 as the loss has been progressive, and I'm pretty sure that particular type of Ushers has nonprogressive hearing loss. He shouldn't have a gene mutation in a gene that is missing entirely, as is the case with his first chromosome. However, it does make me wonder whether or not we need to worry about Connor's vision in the future, and whether or not it might not be worth calling up his geneticist to see what she has to say about it. After all, basically what that tells us is that something related to the way your ears and eyes work is based on that specific stretch of genes.

So I've gotten myself all worked up again about something that:

a) probably has no relevance to Connor
b) isn't something I can do anything about
c) isn't something a doctor can give me an answer on anyway.

This is one of the hazards of doing this kind of research when you have a kid who is one big unknown; you can end up scaring yourself with all of the possibilities. Sometimes I wish I had a kid who came with more of a guide book. When I go to the bookstore and browse the shelves, there are lots of books that give information about all sorts of genetic issues-- outlining things to watch out for, giving resources and contact info for support groups... other than Chromosome Disorder Outreach (CDO), there's nothing out there for Connor, and the only thing we really have in common with pretty much all of the kids in CDO is that we don't have any answers.

In some ways this is a good thing, as it leaves us without a gauge of how much Connor could potentially do, so we're not going to underestimate him. Sometimes it's nice to set expectations aside. We're also more likely to have opportunities open up with doctors and therapists who want to see him, as he's a medical novelty.

In other ways, it's really really scary being a trailblazer.

~Jess

Play Day!

We drove down to Bradley Lake Park this afternoon to enjoy the cool weather and the wonderful playground-- which has a wonderful story to go with it. This is a fully accessible playground, with a wheelchair ramp up to the slides, a special swing, plenty of ground-level activities and easy-to-manipulate toys (such as the giant maracas Connor's got his hands on here) and a wheelchair-friendly rubber play surface. A woman named Karen Vindivich, the mother of a special needs child, petitioned the city for a playground that her daughter could use. She raised 90,000 dollars for the project, the city contributed 75,000 dollars more, and Savannah's Place (named for Karen's daughter) became a reality. Puyallup is not a huge town; it has about 33,000 people, which makes it a modest suburb, so for it to have such a beautiful inclusive playground is especially surprising.

It just so happened that while we were at the playground, the Outdoors For All Foundation was out at the park doing one of their demo rides with adapted bicycles. They provide outdoor recreational experiences for people with a wide variety of disabilities-- everything from rock climbing to kayaking to snowboarding. All sorts of different people with different adaptive needs were hitting the (also fully accessible) trails around the lake on various types of bikes-- the only thing they all had in common were the huge smiles on their faces! Tons of kids too small for the bikes were also walking, crawling and wheeling around on the playground equipment and having the time of their lives.

To me Savannah's Place is more than a wonderful place for our son to play. This playground is a testament to what the parents of special needs children can accomplish when we put our backs into it. Without Karen's tireless efforts, this playground would not exist. It makes me wonder what I could be doing to improve Connor's life and the lives of other special needs children. If Karen could raise 90,000 dollars for special needs children in a town with 33,000 people, what's holding the rest of us back?

I think that every town in America should have a park and a story like this.


~Jess

You've Got A Little Something There...

I'm blogging during Connor's nap again; we're all taking it easy today. Connor is fully recovered from his sunburn and he didn't even add to his freckle collection! Well, I say "collection," but really there's only one- a tiny little dot on the side of his nose. You can just barely see it in this photo. I'm convinced that every child has one of these freckles; it's the obligatory "looks just like dirt so your mom gives you multiple spit baths you don't need in an attempt to wash it off" freckle.

You know the one I'm talking about. I have one just under the right side of my mouth, and my mother, after twenty some odd years, is still to this day convinced that it needs to be rubbed off.

Remember spit baths? That's what we called them in our household, anyway-- where your mom would lick her thumb and then use it to wipe off imaginary dirt on your face, especially in public areas like church. I, no doubt like many other children, made a fervent vow that when I was a grown-up I would never, ever subject my child to such indignity and embarrassment. Now I find myself doing it all the time. Connor hates it just as much as I always did. I also utter phrases, albeit a bit modified for our HoH son, that I was certain I would never use. "Look at my hands when I'm talking to you!" comes to mind.

Anybody else do this, or is it just me?

~Jess

Look Out-- Connor The Fireman Riding Through!

Connor got a bit of sun today, so I think we'll be staying cool and indoors tomorrow. We caught the second half of a birthday party, and I neglected to bring any sunscreen for the little guy. I borrowed some once I noticed he was getting pink, but he burns in about five minutes, so it was already too late. He didn't burn too badly, though-- mostly he was just tired and ready for bed when we got home. It's so cloudy around here most of the time that it's easy to forget about things like that.

He picked up this spiffy fireman's hat at the party. Doesn't he look handsome?

Other big news today-- we went out and bought him his first tricycle and a helmet to go with it. It's a shiny red Radio Flyer with streamers on the handlebars: everything else had Dora the Explorer or various Disney characters plastered all over it, and you know how I am about that sort of thing. (I haven't had a television that gets reception-- not even basic channels-- for over ten years now, to give those of you who don't know me personally some idea of what I'm talking about. I do have an entire room devoted to nothing but books, however. My children are doomed to be hopelessly uncool.) We'll be taking Connor's new wheels down to Good Samaritan some time next week to have them modified so he can eventually ride on his own. I can't believe that he's big enough to even fit on a tricycle, let alone ride it on his own-- it doesn't seem possible that he's growing up that quickly!

Now that he has both a fireman's hat and transportation, he can dash off to help whenever he deems the cats need assistance, such as when they're sleeping in the middle of the floor. We barely managed to restrain ourselves from getting him the really loud squeaky horn, too, but ended up figuring that him running over the cats' tails repeatedly would probably be torture enough for them-- no need to add extremely loud scary noises to the mix. Sound the alarm-- Connor's coming to the rescue!

~Jess

Photo Time!

Every year for Father's Day, Connor and I go and get a picture taken with the two of us, which becomes a present for both Jeremy and my father. This year with Jer leaving, I decided we needed to have some pictures taken with the whole family, as we haven't had any done of the three of us since Connor was three weeks old.

One of our friends recently had pictures taken, and she recommended an awesome photographer to us: Lucie Holloway. She's also a military spouse based in the area, and she has fantastic rates and was really flexible and willing to work with us. It's hard to find a photographer that works well with a special needs child, but Lucie was really accommodating, and we ended up not only getting some great shots (over 200 photos-- crazy!), but having a blast in the process. She's got a bunch of them posted up at her website which you can go check out, but here's some of my favorites:

I think that with Jer leaving it becomes even more important to document all those little moments-- Connor will be completely different by the time his Daddy gets back. I'm so glad we went and had this done, and it was so much fun that we might have to make it an annual affair!

~Jess

Test Driving!

Today was another very fun day-- we headed over to the Children's Therapy Unit at our local Good Samaritan hospital to test drive some therapy equipment. As Connor gets older and heavier we'll be needing different adaptive equipment to help make our house more accessible. We're looking for a bath chair, a toilet chair, a stander, a feeding chair, and a floor-level chair for play. We also took the time to try out some adapted toys-- a tricycle, which he enjoyed immensely, and a switch-adapted car.

The floor chair is the coolest thing ever. Basically it's a giant beanbag, which you shape into whatever position you want around your child. Then you use a pump to suck all of the air out of it, which makes it hard and frozen in that shape. It's incredibly versatile; you can use it as a chair, side prop, wedge for tummy time, etc. Here's Connor sitting cross-legged and otherwise totally unsupported on it while the whole thing sits on a swing. How cool is that?

Connor had a lot of fun with the car, as is evidenced by this video. Maybe a little too much fun. He was not as enthusiastic about the stander, which he apparently thought should be a leaner. The one we'd order wouldn't allow him to do that. It was towards the end of our two hours there, though, so he was getting kind of tired.

We'll continue making extremely slow progress on adapting a Powerwheel car so that Connor can have a similar toy at home, and we already plan to purchase a tricycle and have it modified so he can use it.

He had a very good time, but we definitely wore him out-- he crashed and burned at my friend Anna's house in the afternoon. Silly little guy.

~Jess

Best. IEP. Ever.

So remember that whole IEP drama thing where we decided to uproot and move to an entirely new town in the hopes of finding a school district that would give Connor what he needed?

Yeah. Totally worth it.

We had Connor's IEP meeting today with the Puyallup school district, and not only were they friendly, courteous and completely unhostile (unlike our previous district) but they went above and beyond to make sure that all of his needs are being met. Connor will have a paraeducator who knows sign language assigned to him during classroom hours. He'll have a PT, OT, ST, and an audiologist working with him as well. They'll provide adaptive furniture and an FM system. They identified him as qualifying for services and wrote goals for social/emotional/adaptive, cognitive, communication, fine motor, gross motor, and sensory issues. He'll be in a special needs classroom that will have an awesome adult-to-student ratio-- this past year there were eight students in one class and nine in the other with the teacher and three paraeducators. The teacher seemed fantastic, the administrators were great, and everyone seemed excited about working with Connor in the upcoming school year. Nobody acted like we were asking for something completely irrational or inappropriate-- we didn't even have to bring it up, as they already had the aide written in on the IEP! The document ended up being over thirty pages long, and we're confident they covered all the bases. Not only that, but they're okay with adding other services as needed.

We'll continue to stay in contact with the teacher and the therapists over the break, and Connor will start school up in the fall. This meeting has taken a huge weight off my shoulders and made Jer and I confident that we made the right decision. We're going to meet again in the fall and make adjustments to Connor's IEP as need be, and it sounds like they're willing to meet whenever we feel like it needs revision. What a huge difference from our last IEP meeting! This is a good thing, too, because now I won't have to homeschool. I love Connor dearly and I'd do it if I needed to (I even set his room up with that in mind), but homeschooling wouldn't exactly help Connor's trust issues with other adults, now would it? Also that two hour stretch of alone time four days a week is starting to look really good.

I think if we had to do it over again, we'd make the same decision in a heartbeat. Now Jeremy doesn't have to worry about the education that Connor's getting while he's gone. I'm so glad we chose to be proactive and make a decision that may have been difficult for us in the short term, but so much better for Connor in the long term.

Now we just have to wait for school to start!

~Jess

Riding Therapy!

We just got back from our first riding session, and I'm blogging while Connor's down for a well-earned nap.

That's not the horse he was riding, by the way. I would have been a wee bit leery of putting my child on a horse that size.

This is the horse, or rather, pony, he rode. His name is Thunder, and he's a very sweet and gentle boy. Connor spent about fifteen minutes total actually riding-- he was a little unsure of himself and also tired pretty quickly, so we didn't push him. I didn't get any pictures of him actually riding because I was walking alongside Thunder helping hold Connor on. Maybe I'll bring a friend next time so I can get them to take some action shots. Thunder was very patient with Connor, who was lurching around in the saddle in what must have been a rather alarming manner. We rode first, took a break and met some of the other animals, and then rode again. The second time went much better-- Connor seemed more comfortable in the saddle and even took the time to look around as he was riding, so that's good. I'm pretty sure he's going to be sore in the morning, though.

We also met and got to touch a miniature pig, some silkie chickens, a miniature donkey, a couple of full size horses, a baby doll sheep (they're tiny!) and the cutest little dwarf goat ever. That goat is full grown, and about a foot and a half tall! He was very affectionate, climbing into my lap and standing up on his hind legs to be petted. Very cute.

Greg, the man with Connor in the pictures, was fantastic-- turns out he was a special education teacher for many years before he opened the stables with his wife. He took a liking to Connor and told us that we could stop by and see the animals any time.

I'm definitely looking forward to bringing Connor back again soon-- I think he could benefit tremendously from this. What a great trip!

~Jess

Hi Yo, Waldo Away!

Connor's faithful steed Waldo will be put out to pasture for a while. This is because tomorrow morning, Connor will be heading over to Spirit's Party Barn and spending half an hour on a real horse-- a miniature horse, that is. This will be the first of what will become a monthly experience, and we may go more often if he seems to really enjoy it and benefit from it.

It won't technically be hippotherapy, as we won't have a therapist present for most of his riding. We do, however, have a number of exercises to do on the horse that we've been given by our wonderful PT, Laura, and we also hope to haul her along with us for a session or two every once in a while to receive further instruction. There is significant evidence that hippotherapy, or therapy with horses, can be extremely beneficial to children with severe motor skill and vestibular delays. The movement of the horse activates the muscles used for walking and helps improve muscle strength and torso control, posture, and balance. The list of "general indicators for hippotherapy" off the AHA website, by the way, reads like a laundry list of Connor's diagnoses.

Though we won't be doing the kind of extensive therapy that an experienced PT and horse trained specifically for that purpose can provide, riding a horse should still give Connor a good workout. If nothing else, just the contact with animals is probably a good thing for the little guy, and since he loves horses and ponies I have no doubt he'll be extremely excited about it. There's also a petting zoo, and they have bunnies. Connor loves bunnies. I'm thinking it's going to be a good day.

It's only twenty dollars for thirty minutes on the horse, which is a really reasonable rate. We may eventually bump it up to an hour, but half an hour on a horse is a really long time for a three year old, so we'll work up to that. I'll be taking my camera, so expect some super cute pictures tomorrow night!

They also have a llama, by the way. Nothing that involves a llama can possibly be anything less than awesome.

~Jess

Well, It Works...

This is what happens when your child gets bored with spinning his animal ball with his hands and decides to improvise.

Silly kiddo.

~Jess

Baby Shower Fun!

I saw Connor for a total of about an hour today-- he and Jer had a Daddy day. This was because I helped throw a baby shower for my good friend Anna. We all had a blast!

The girls and I had decided on a tea party theme for the shower, which due to my insane obsession with tea was right up my alley. We decided to go with a sort of mixed casual and formal eclectic look, with mismatched silver and china.

I spent a few weeks collecting china tea cups from thrift stores all over the area. The cups were our party favors-- everyone got to pick their favorite and then take it home with them in the end. Finding them was immensely fun, they got a good reception, and they were pretty cheap as favors go (I paid between fifty cents to three dollars for each teacup). The teacups were all so neat, I almost just went out and bought other favors so I could keep them all. Now I want to collect tea cups. Oh well.

I also picked up a bunch of mismatched silverplated serving dishes and teaspoons. Fresh flowers and honey came from the farmer's market. Fun!

We had a good time planning, cooking and presenting a yummy menu-- and an even better time eating everything! So first, of course, I picked out the tea; we used Tea Forte for the occasion. It's a little pricey, but it's high quality tea and the presentation is just so darn cute that it's perfect for parties. Then we made a wide variety of finger foods. My contributions were miniature quiches, lemon bars, and some cherry raspberry truffles of my own invention. Here's the recipe for the truffles, which are pretty simple and are to die for:

Jessie's Cherry Raspberry Truffles

1/2 cup creme

1 package frozen raspberries

20 fresh cherries, pitted and halved

8 oz bittersweet chocolate (preferably high quality)

12 oz semisweet chocolate (ditto)

unsweetened cocoa for garnish

1.) Dump the frozen berries into a saucepan. Stir over medium low heat until the berries soften and release their juice. Pour the raspberry puree into a strainer to get rid of the seeds. You want anywhere between 1/2 cup and 2/3 cup raspberry juice-- however much is released (it will depend on the raspberries).

2.) Pour the creme into the raspberry juice until you've made one cup of liquid total (i.e. if you have 1/2 c of raspberry juice, use 1/2 cup creme, 2/3 cup raspberry juice, use 1/3 creme, etc.).

3.) Melt the 8 oz bittersweet chocolate. Pour creme/raspberry mixture into chocolate. Stir to mix. Then refrigerate until set-- about an hour.

5.)Take chocolate ganache (what you just made) out of fridge. Working quickly, roll into balls the size of your cherries. Mash each ball of ganache into a cherry half. Return ganache and cherries to fridge and let firm for 30 minutes.

6.) Melt semisweet chocolate. Let cool until at room temperature, and then reheat (this will temper the chocolate: make it shiny and prevent it from "blooming," or separating out when chilled) Using fork, dip cherry/ganache balls into melted chocolate until thoroughly coated. Place on wax paper cherry side up- it makes a nice, smooth dome this way.

7.) Sprinkle lightly with cocoa to garnish. Put in fridge five minutes to set, and then remove from fridge and serve at room temperature, if you can wait that long.

Makes 40 truffles, unless you can forgo the rolling, dipping, and garnishing entirely and simply eat large spoonfuls of ganache directly out of the bowl. Then it makes one huge bowl of ganache with cherries on the side. Yum.

Everything turned out beautifully, overall it was a big success. We're already coming up with reasons to have another tea party. It was so much fun!

~Jess

To Market!

Today was a pretty busy day!

Jer didn't have physical training this morning, so we got to sleep in this morning until almost 7:00 am-- whoo hoo! After a week of getting up at five in the morning, seven seems like a real luxury. It's all in your perspective, I guess.

Anyway, usually when we get up at five we put Connor into the car with as little fuss as possible-- in his pajamas, with no shoes, hair combing, etc. This is so that hopefully he'll just sleep in the car and then go back to bed when we get back home. It usually works pretty well. Unfortunately I forgot to tell Jer this morning that we wouldn't be coming immediately back to the house, so when I asked him to put Connor in the car, he did so in the usual fashion-- in his pajamas, sans shoes, hearing aids, and attention to personal hygiene. I didn't discover this until I glanced into the rear view mirror several minutes down the road. Whoops

I had an hour in between the time I dropped Jer off at work and the time I had to be at a ceremony honoring one of our close friends, so I rushed over to Target and bought a comb, a toothbrush, toothpaste, a pair of socks and some shoes. I slapped Connor's emergency extra outfit on him(I carry one in the car at all times-- a habit from Connor's days of horrendous reflux), brushed his teeth, ran a quick comb through his hair, and then we were off to the ceremony.

From there we took care of a few errands-- the farmer's market for flowers, cherries, honey and bacon, the food coop for cream and onions, and the farm for our first weekly pick-up from our CSA (this one included lettuce, mustard greens, beets, rhubarb, asparagus, and garlic scapes). Then Connor and I picked up Jer and we headed back for our first night out courtesy of our new respite care worker.

Remember how I wrote that whiny post about not being able to pick a respite care worker because none of them really stuck out as perfect? Well, we held our last interview a couple of days later and found our Mary Poppins-- a medical massage therapist and former nursing assistant who is just plain awesome. Connor has connected pretty well with her, and she and I get along really, really well, so it was pretty exciting to have a chance to spend the night out on the town and leave Connor in her more-than-capable hands. Jer and I got ice cream, went to see a movie (Up-- and for Pete's sake, go see it, as it's wonderful), and then ate at a great Greek restaurant afterwards. Connor apparently was pretty good for her, and he even ate a few bites of food for her, which he won't do unless he's pretty comfortable with someone.

We're looking forward to our next date on Sunday. I could get really used to this!

~Jess

There's A New Cat in Town

My cats have a new arch nemesis.

They'd finally settled down into their usual happy relationship and were getting along fairly well when, a few nights ago, my slumber was interrupted about four o'clock in the morning by someone sacrificing small children in my living room. At least, that's what it sounded like-- high pitched screaming, snarling, and something that sounded like drumming. I threw open the bedroom door and rushed down the hallway towards the unearthly noise. Here's the scene that met my eyes:

In the center of the room, Cricket stood spitting and skipping sideways in a pose that looked exactly like one of those cats you see in all the Halloween decorations. I always thought those were exaggerated parodies of cats, but evidently not. Periodically she'd stop, crouch down, and emit another blood-curdling screech, the volume of which was vastly out of proportion to her body size, in the direction of our sliding door. Then she'd arch back up and starting another series of hissing sideways hops.

My view of the sliding door was partially obscured by an enormous snarling mass of fur, teeth and claws. Loki, who somehow had managed to triple in size-- an impressive feat for a twenty pound cat-- was hurling himself at the door in some sort of berserker rage, creating the rhythmic thumping noise we'd heard from the bedroom. His entire body vibrated with the most extraordinary baritone growling. This was especially surprising coming from a cat who usually has a ridiculously falsetto meow.

On the other side of the sliding door, maybe a foot away, a tuxedo long-haired cat sat on his haunches, evidently unperturbed. If anything, he seemed to be enjoying the entertainment. Whenever Loki or Cricket looked like they were winding down, this cat would twitch a paw towards the door and send them into new paroxysms of fury.

Well, this would not do at all. I marched towards the sliding door, and the stranger cat glanced up, saw me, and sauntered off, waving his tail in a nonchalant taunting fashion as if to say "I'm leaving because I want to and not because you tell me to."

Since then the cat has appeared on a couple more occasions, each time prompting Armageddon in my household. While Loki seems more or less unscathed by these incidents, Cricket now has a bad case of paranoia and transferred aggression. She slinks around corners, growling and hissing at me, Loki, and any inanimate objects that look at her funny. I'm assuming she'll get over it eventually, but in the meantime we're learning some interesting life lessons, such as the fact that listening to periodic blood curdling screams in the middle of the night gives you some really, really weird dreams.

~Jess

Yes...We Have Internet!!!!!

After a long and unnecessarily convoluted process, at last resolved when our Internet provider realized after two weeks of troubleshooting that they'd forgotten to turn some switch on at their end, we finally, finally, FINALLY are online again. I've got some catching up to do! Everybody here is fine-- no earthquakes, volcanoes erupting, etc. The only tragedy is the utter mire my e-mail has become during those two weeks-- I have over 800 new messages, most of which seem to be addressing my need for lengthening and enhancement of certain body parts that I don't possess. It's going to be fun sorting through all that. Oh well.

We have had a lot go on in those two weeks. Let me sum up.

My parents came up, Jer and I went to Astoria for vacation, we did our final walkthrough of our old house and are now officially 100% moved in (if you don't count the ten boxes we have left to unpack), Connor got his horrendous Frankentube replaced with a cute little Mic-Key g-tube, he'll have his first IEP meeting with his new school district next week, and we are borrowing a walker for him until his is ordered-- though he's using it more like a "stander" right now. Oh, and our cats are still trying to kill each other. Whew!

Now back to our regularly scheduled programming.

It is hot here. Really, really hot-- 85 degrees today. And as I'm saying this, I know that I've officially acclimated to the Pacific Northwest and all of my family down south will laugh at me when I whine about the heat, because back in Texas 85 degrees around this time of year means that there's a cold front moving in. Of course, in Texas they also have air conditioning and fans in every room-- conveniences which are sorely lacking in our apartment. They seem to work on a "coast through most of the year and suffer terribly for the week or so it's actually hot" system here. Rather than go out and do something productive, such as buy fans, I've developed my own ingenious plan to keep cool. Here's how it works:

Step 1: Get up in the morning and discover how hot it's supposed to be. If it will be above 80 degrees, proceed to step 2.

Step 2: Wait until 8:45 in the morning, and then jump in the car with Connor and all of his supplies.

Step 3: Race down to the bookstore and wait outside until it opens. Buy one book for me, and one for Connor.

Step 4: Sit in the adjoining coffee shop with Connor, tea, a cookie, and the aforementioned books. Read books. Eat cookie. Drink tea. Enjoy air conditioning. Repeat for the next twelve hours or until the temperature outside drops to a reasonable level.

I like this system, as not only do Connor and I stay comfortable, it gives me an excuse to buy books. Because if there's one thing we need around here, it's more books.

~Jess