Connor Meets Clifford, The Big Signing Dog

Our local Barnes and Noble had their Valentine's day festivities for kids today, so we stopped by to meet Clifford the Big Red Dog. There were cookies, various Valentine's Day themed activities, and pictures with His Fuzziness himself. Unfortunately I didn't realize that they were doing story time as well, or I would have brought Connor's FM system with me. I did an okay job of interpreting, though I did notice that most of the kids spent the story time watching me and Connor rather than looking at the book. Guess we were a bit of a distraction.

Connor was rather in awe of Clifford. He is a huge fan of dogs-- any dogs-- and so I got the impression that if he could have figured out how to stuff that poor girl in a Clifford suit into the carry-on space under his wheelchair, he would have finagled it so we could bring her home with us. Clifford knew a little bit of SEE, which was a pleasant surprise, but Connor had a hard time understanding her. It's really hard to sign when you have paws instead of fingers.

After Clifford left the premises, we shopped for a bit and found some books (of course) and then sat in the coffee shop for a while. "Clifford," sans the big red suit, came and found us and gushed over how well behaved Connor was and how well he listened. Connor, who had been completely enamored with her before, didn't want anything to do with her now that she wasn't a giant fuzzy dog. Oh well.

~Jess

Party Time!

We attended our first ever toddler birthday party today. Connor's friend AJ turned two this week, and five or six little guys and gals between the ages of 18 months and 3 attended the festivities. It was an experience.

I think everyone probably has a grasp on how the typical two year old thinks. Try to picture the birthday party from AJ's perspective. Here he is, an only child who has just been fed an obscene amount of chocolate cake and is therefore on a major sugar high. All of the sudden these six other children have descended on his house, where not only do they have the audacity to actually speak to his mother and father, but they are playing with his toys. AJ spent the vast majority of the evening screaming at the top of his lungs and running around attempting to wrest every toy of his out of the other kids' hands. Picture a scene out of the movie 300, only with more carnage and "MIIIIIIIIINE!!!" substituted for "this is Sparta" and you'll have a pretty good image of the festivities.

Connor and I sat in a rather bemused fashion on the sidelines and watched the drama unfold. Connor, never one to miss out on any great entertainment, laughed and clapped his hands whenever one of the children landed a particularly solid punch on their opponent. He seemed to have a good time, so the party was a success on that front, anyway. I got to eat chocolate cake and see AJ's mom and dad, so I enjoyed myself. Poor AJ, however, seemed to think it would have been much better if everyone had stayed home and just sent presents.

The really interesting thing, though, was watching the way all of the children interacted with Connor. AJ, though initially terrified of both of us, by the end of the party was actually wresting toys out of the other kid's hands and bringing them to Connor to play with. None of the kids screamed at Connor or hit him. All of them spoke to him nicely. One of the little girls was particularly fascinated with him and spent ten minutes or so showing him a toy dragon (See, Connor? The dragon goes RAWR!!!) and patting him gently on the hand. The dragon needed to wear hearing aids too, so we spent a lot of time pretending that my cell phone was a hearing aid and holding it up to the dragon's ear so he could hear what we were saying. Connor and the little girl both thought that was pretty funny.

Connor seems to bring out this reaction in almost all of the children he meets. They are mutually fascinated with each other. I think it might be because he's not a threat to them. He doesn't hit, he's not running around and trying to interact with their parents-- he's just sitting calmly and watching everything they do. Because he is gentle and quiet, they seem to instinctively react the same way around him. Connor, in return, doesn't ignore other children or bury his head in my shoulder the way he reacts when he meets new adults, but makes a conscious effort to stay in their world instead of retreating to his own.

Even Connor has his limits, however, no matter how tolerant he usually is. He strenuously objected to being called a "little kid" by one of the girls at the party. He is a big boy, thank you very much.

~Jess

Bragging Rights

I am married to what might just possibly be the sweetest man in the universe.

That's right, ladies. Sorry to brag here, but you will all just have to settle for whatever leftover men you can scrounge up, because I got the best one.

I was in a very bad mood yesterday, after having had a really bad weekend that involved a bout of stomach flu and in which I spent a good portion of the time lying in bed with Connor on one side and a bucket on the other. So I was grumbling to myself and trying to do something about the horrendous mess that had taken over the house when the doorbell rang. There was a package addressed to me from Jeremy.

Despite being out in the field and far, far away from anything resembling civilization at the moment, my husband sent me chocolates for Valentine's day. Chocolate covered ginger, to be exact. From Fran's-- which just happens to be my favorite chocolatier in the whole world for reasons of extreme deliciousness. I would share if I hadn't already eaten it all, but...wait, no I wouldn't. Get your own.

Did I mention he bakes fresh bread for us every week? Also he doesn't mind changing a diaper at 2 o'clock in the morning. Also he gives foot rubs. Also he can have a really, really long day at work and then listen to me talk for twenty-five uninterrupted minutes in the car on the way home about dryer lint and he actually pays attention. The man isn't just a great husband and a fantastic father; he's probably a candidate for sainthood.

I miss him.

~Jess

Medical Monday: Cardiomyopathy (Updated)

Doctor Connor is in the house! Dr. Connor declares my glasses and stethoscope to be the height of hilarity. Also he demands chocolate pudding.

Because Connor has so many conditions and I refer to them all the time without proper explanations, I figured I'd declare Mondays to be Medical Mondays from now on. I'll blog each Monday about a different condition Connor has and then post a link to it on the side bar as I go. This way people can get a better idea of what Connor deals with on a daily basis and his family and friends can understand what I'm saying when I call and spout ridiculously long medical terms.

DISCLAIMER: I would like to emphasize for those people who stumble upon this blog that I'm not a doctor, and I have no medical experience other than the approximately 900 doctor's appointments I've been to in the past two years. I just know about these things in relation to how they apply to Connor and not anyone else's child, so if you want accurate info on this sort of thing, please please please ask your doctor or go to the medical library instead of looking it up on the Internet. The library is your friend.

UPDATE: As undeniable proof that you need to get your info from the doctor and not me, a very nice person from the HCMA let me know today that you can only have LVNC or HCM-- not both as Connor's diagnosis sheet from his coordinating care doctor reads. I went back through my files and then called Connor's cardiologist for a double-check. Evidently somewhere along the line one of Connor's coordinating care doctors read LVNC with symptoms of HCM in a report from one of Connor's cardiologists and interpreted it as LVNC and HCM, which then found its way into Connor's permanant records and will now be almost impossible to change. Thanks, HCMA. Post corrected.

So that's that. Today's topic is cardiomyopathy.

I was checking out the news today online and came across an article about the Williams family. Louise and her twin daughters, Katie and Lauren all have dilated cardiomyopathy: a rare heart condition in which the heart is enlarged and weakened. I'd encourage you to stop by their website and leave some words of encouragement.

While Connor does not have dilated cardiomyopathy, he does have a very similar condition-- left ventricular noncompaction. I'm no expert on this sort of thing, but here is how it's been explained to me by several cardiologists:

The condition called left ventricular noncompaction (LVNC) is very rare and little understood. The muscle of the heart, known as myocardium, starts out during fetal development as a very spongy and spread-out material. As the heart begins to develop further, this material draws closer and closer together, becoming the dense, extremely strong muscle needed to be such an efficient pumping mechanism. With LVNC, the myocardium stays spongy, especially in the left ventricle, and so the heart is weakened and can't pump as efficiently. The difference in the heart muscle causes very deep nooks and crannies in the wall of the left ventricle, known as trabeculations. Trabeculations cause issues because blood can pool and form clots in these nooks and crannies, greatly increasing the risk of stroke. Connor takes aspirin every day to reduce the risk of this happening, and also takes another medication to help his heart pump more efficiently.

Because of how hard it has to work, Connor's left heart wall has become thicker over time. This is a condition that can cause serious problems if the thickness of the walls cuts off the blood flow in the heart. However, in Connor's case, the atrial septum-- the wall that divides the left and right ventricles of the heart-- is not becoming thicker and so he has no problems with blood flow. Other than not being able to play any contact sports or be in the military (I'm just heartbroken over that, I tell you) his heart issues shouldn't otherwise limit what he can do as long as they're well-managed.

The nature of Connor's heart defects are one reason why he is considered to have a shortened life span-- we've been told somewhere between five to fifteen years. However, most people who have been discovered with LVNC are diagnosed because they are going into heart failure, and so understandably the mortality rate is pretty high. It's likely that there are many, many people walking around with LVNC who have no symptoms and live a normal lifespan-- they just aren't ever diagnosed with LVNC and so the statistics don't reflect them. It's also likely that if Connor didn't have so many other things going on, his heart defects would never have been found, as he shows no outward symptoms at all. Besides, the doctors don't exactly have the best track record on the whole Connor-kicking-the-bucket thing. They've already declared him doomed on four previous occasions, and he's still his happy little very alive self.

Like Louise, Katie, and Lauren, Connor's heart condition cannot be fixed by surgery. If he were to have issues with his heart, he would have to have a heart transplant. He is at risk for sudden death, heart attack, congestive heart failure, and stroke. Luckily, Connor's heart thus far has caused him no problems and we hope this will be the case for a long, long time to come.

Here's some good links involving LVNC:

The Cardiomyopathy Association

The Internet Journal of Cardiovascular Research

Left Ventricular Noncompaction

Phoebe Willingham Muzzy Pediatric Molecular Cardiology Laboratory

American Heart Association: Rare Cardiomyopathies

~Jess

Loki Makes A Run For It

Yesterday Connor and I went and watched baby E again. That little chipmunk-cheeked girl gets cuter every time I see her, I swear. She was perfectly cheerful the entire time we were there, and absolutely fascinated with Connor. We had to turn so she could see him while she was eating, or she wouldn't take her bottle. I totally understand. Connor has that effect on me, too.

It was on the way to babysit that we ran into a bit of a snag. Getting out of our house has become a big production now. This is because every door out of our house has steps, and Connor, due to a previous traumatic event, will no longer sit in his wheelchair during any going up or down steps. This means I have to prop open the door and manipulate the wheelchair out with one arm while holding Connor with the other. There's a sharp turn the wheelchair has to take coming out the door, and on this particular occasion I ended up accidentally wedging the wheelchair in the doorway. I am balancing Connor on one hip and bending over while attempting to lift the wheelchair free using the other arm and hip when I see Cricket saunter into the room. "Stay, kitty," I grunt as I try shifting my grip to another spot on the chair while the little wiggly child I'm holding attempts to throw himself backwards out of my arms. "There's a good kitty."

Cricket looks at me struggling with the wheelchair for a long moment. You are an idiot and are embarrassing me, that looks says. I could do that better than you and I don't even have opposable thumbs. Then she pointedly turns her back on me and glances towards the entrance to the living room, where Loki has just appeared.

I don't have time to say anything to Loki. Loki takes one look at my helpless state and the open door, and his pupils dilate to the size of marbles. If he has a thought process at all, which is debatable, it could probably be summed up in one word: FREEDOM!!!!!!!!!!!!!!!!!!!!! He sprints towards us, jumps up onto the wheelchair, and launches himself out through the doorway, using my chest as a springboard to change directions in mid-air. Instinctively I let go of the wheelchair and clutch my chest to see how badly I'm bleeding. I drop the wheelchair on my foot.

Loki is not an outside cat. He has never been an outside cat. He is the type of cat who, if he were allowed outside, would probably manage to cause some sort of international incident-- you know, the kind that involves air raid sirens-- and because of his cuteness, still manage to get it blamed on me. "Irresponsible Pet Owner Causes Nuclear Holocaust," the headlines would read. I keep him indoors for the protection of all mankind.

From the few occasions in which he has escaped, he has learned that he should get as far away from me as possible before beginning his reign of terror. This is because the second I catch up with him, he is forced to go back inside where he is only able to exercise his appetite for destruction by shredding unsatisfying things such as all of our toilet paper.

On this particular afternoon he takes off in a beeline for the neighbors' yard, leaving me hopping on one foot after him and trying very hard not to curse (Mommy said Faulkner, Connor! Faulkner!). Our neighbors have recently put up a fence: one of those cheap removable types that is made out of chicken wire and is about three and a half feet tall. Keep in mind that this is the cat who regularly believes that the peephole on our door is a bug and manages to reach it without any difficulty by jumping four feet straight up in the air. He reaches the fence. Does he go around? Does he scale the fence? No. He skids to a stop, places his nose into one of the inch-wide openings in the wire mesh, and begins pushing.

He tried this for about three minutes, long enough for me to get the wheelchair out of the doorway, set Connor down in it, and walk over there. Loki glances back over his shoulder, sees me coming and makes a frantic decision in an attempt to prolong his freedom. He's not just going to push on the fence. He's going to push really, really hard. He knows deep down in his little kitty soul that if he exerts enough pressure, he will be able to squeeze through that hole. The fence was actually bowing in by the time I picked him up, and he had a little square shaped impression around his nose. I laughed myself silly, once my foot stopped throbbing.

So there it is. I now have unequivocal proof that Loki has roughly the intelligence level of dryer lint.

Crazy cat.

~Jess

Breakthrough!!!!!

Connor absolutely blew me away yesterday.

We've noticed a pattern in the way Connor makes progress. Typically he focuses on either his physical development or cognitive development. Usually he'll make big strides in one area while plateauing or even regressing in the other area. He'll have a brief period of overlap where he either improves in both or improves in neither, and then he switches over to the other area for an extended period of time. I'm sure there's probably some official term for this kind of learning, which is apparently fairly common, but Jer and I refer to whichever skill set he seems to be making strides in at the present time as Connor's "focus area."

For the past two months or so, Connor's focus area has been in physical development. First Connor's sitting (with assistance-- his balance is still all wonky) improved considerably. Then over about about a two week period, he began standing and sitting down with assistance. As long as someone is holding his hands so that he can balance, he's able to stand now for up to two minutes at a time. About two weeks ago, Connor began learning how to "jump." It's the cutest thing in the universe, and probably a game just about every parent with a typically developing kid plays at some time or another. We grab Connor under the arms, say "Ready?" and he hunkers down like a little linebacker, a look of intense concentration on his face. "1...2...3....JUMP!" I'll yell, and Connor slowly heaves up with this tremendous effort. He would go, of course, absolutely nowhere if I wasn't lifting him up off the ground, but it's really, really cute and shows big progress.

Now, all of the sudden, he's switched gears. He's gone over a month without learning any new signs, and then in the past week he's learned three. He now signs "shoe," "jump," and my personal favorite: "please." He uses home signs for these of course-- for "shoe," as an example, he takes his right leg off the ground and waves it back and forth. But he gets his point across, so we're super excited.

As exciting as that is, however, I have some even better news. Four days ago, I bought some flashcards with pictures of animals on them, thinking that maybe I could teach Connor to recognize some of the more familiar ones. I know his new school will probably rely heavily on flashcards, so it's important for Connor to get used to them, and we've been having some more success with the PECS system, so I thought that maybe he was ready for them. I then spent the next few days holding up the picture cards one at a time and sounding like a complete and total idiot. "Cat. Cat. Do you see the cat? Here is a cat! The cat says meow!" I got bored after a while and started making up little stories, none of which were probably entirely appropriate. "Do you see the cat? The cat says meow, and it likes to shred Mommy's houseplants into little bitty pieces! Do you see the alligator? This is the animal Mommy thinks about getting for a new pet when she sees her destroyed houseplants. Alligators do not eat houseplants. Can you guess what they do eat?"

Connor did not seem terribly interested in these cards. He'd kind of look at them for a second, and then go back to studying his hands or the table lamp or something infinitely more interesting then these stupid little squares of cardboard his mom was shoving in his face and babbling on incessantly about.

Yesterday I decided that instead of just showing him the cards, I'd hold up two together and see if he could eye-point to the correct card. I didn't expect him to really be able to do it consistently, but it beat making up any more stories. I held up the horse and the cat, and asked him, "Connor, where is the cat?" Wouldn't you know he looked right at that cat? Okay, I thought. That was probably just luck. I switched the cat out to the other side, switched the horse out for a goat, and asked him again. And I'll be damned if he didn't look at the cat again. Okaaay... I thought, that was probably still just a fluke. One more time. I'm the eternal optimist. I switched the goat out for a spider and tried again. Connor looked at me as if to say Seriously Mom? and then looked at the cat for a third time and watched in bemusement as his mother sprang up off the floor and started dancing around the living room like a lunatic.

So after further testing, I've determined Connor can now identify the spider, horse, cow, rabbit, butterfly, bee, and kitty correctly five times in a row.

Next on the list, algebraic equations. Okay, Connor, where's the x?

~Jess

Bittersweet Goodbyes

This morning, Jer left for training. He's still in the US, but due to the nature of the training we won't be in contact with him for the rather significant time period he's gone. We sat down last night to talk to Connor about his daddy leaving.

The conversation went something like this (all of Connor's answers are signed):

Me: Connor, tomorrow Daddy has to go on a trip for work. We're going to get up very early and take him to work, and he won't be coming back for many, many days.

Jer: Connor, I won't be able to talk to you on the phone while I'm gone, but I will miss you very, very much and I will be thinking about you.

Connor: No.

Me: I know you don't want Daddy to leave, but he has to go. It's okay to be sad about Daddy leaving. Are you sad?

Connor: Yes. (He leans against my chest.)

Me: I will miss your Daddy very much too, but he will be coming back. We can talk about him every day and mark off the days on the calender until he is home. Do you want to do that?

Connor: Yes.

Jer: Can I have a love butt? (These are Connor's substitutes for hugs and kisses, which would involve way too much Connor-initiated touching for his comfort level. Basically, he gives you a very gentle head butt.)

Connor: Yes. (gives his Daddy a love butt)

Me: Do you want your daddy to give you a hug and a kiss?

Connor: Yes.

Now, it's pretty hard to tell whether or not Connor is actually understanding what we are saying or if he's just answering yes or no randomly to what sounds like a question. This morning, at around 3:45, we woke up, put everything in the car, and dropped Jer off at the office. Connor was too groggy to really respond to anything. We drove back home, cat-napped until about 8:45, and then woke up, ate a quick breakfast, and drove to our Deaf and HoH play group.

At the end of playgroup, we always sing the "Bye-bye"song. It's the kind of children's music that toddlers absolutely adore. It would make Sergei Prokofiev slam his head against a wall. The song has these fantastic, thought-provoking lyrics:

Bye bye (insert child's name here)

Bye bye (insert child's name here)

Bye bye (insert child's name here)

It's time to say bye bye!

Anyway, when Connor's turn came around, he listened carefully to everyone singing his name, and then signed:

"No. Bye bye Daddy."

Guess he was paying attention after all.

~Jess