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

Public Service Announcement

Did you know that prunes are "full of natural sugar and vitamins that act as skin soothers - especially well suited for stressed or sensitive skin?" This is according to Janet Cox at the Dole Nutrition Institute, which I'm sure is an excellent source as Dole has an entirely objective, unbiased opinion about prunes since they don't, you know, sell them or anything.

Did you also know that in addition to being excellent for the skin, prunes make this great noise when you spit them out of your mouth? And they make fantastic shampoo and furniture paint as well!

Thank goodness we have Connor to enlighten us on these matters. In these tough economic times, it's important to get as much out of our resources as possible, and he's determined to find as many uses for prunes as he can. As long as those uses don't involve actually eating them. Because that would be gross.

~Jess

Studying SEE During Military Deployment?

So leaving the building after sign class tonight, I made everybody wait in the dark by the door while I searched for my keys-- which turned out to be looped around my finger. Yeah.

The really sad thing is that this is not the first time this has happened.

We're slowly gearing up around here for Jer's upcoming deployment, and right now we're trying to figure out the best way for him to keep learning Signing Exact English (SEE). He's a little behind me because he has much, much less time to study, while I sit around the house all day signing for lack of anything better to do. At any rate, we're not sure how much time he'll have and what technology he'll have access to, but we'd really like to figure out a way for him to see someone signing in addition to just reading the lessons on paper. I'm thinking I might have to set up a video camera and sign all the vocabulary, and then either e-mail it to him or send it to him on DVD, depending on what he has access to. Anybody been in a similar situation?

We're also trying to get Connor ready for his daddy's deployment, and make sure that he remembers Jer while he's gone. Our current plan is to take a video tape of Jer reading and signing some of Connor's favorite books and singing some songs, and then Connor can watch it every day. We're trying to figure out the best way to explain Jer's leaving to Connor, too. We have a video, which involves Elmo's daddy deploying, but unfortunately at two years old Connor does not yet read closed captions, so it doesn't really help. I'm going to try to find a few books that are written for military families to help with this sort of thing. I'll also be looking for books dealing with going to preschool at the same time. Provided I can find my keys to get to the store.

~Jess

Loki Versus House Plants: Round 6,741

So in my latest desperate attempt to have green things inside our home for more than five minutes before they are completely decimated by our cats, I've resorted to enclosing everything in glass. That's right-- I'm making moss terrariums.

It seems kind of a stupid idea, honestly. I mean, I live in the Pacific Northwest, for God's sake. The gardeners here spend hundreds of thousands of dollars each year keeping moss off the lawn, roofs, sidewalks, and if they sit still for more than five minutes, cars and/or children, and here I am bringing it indoors and making a centerpiece out of it.

On the other hand, it's free. Also it's green, and I've gotten to the point where I'm so desperate for something green in the house that I actually found myself perusing the fake plant aisle at Michael's the other day. I know there are beautiful silk plants out there now, but I was raised in a family of serious gardeners and therefore look putting at fake plants in my home the way that gourmet chefs probably would look at serving discount store brand frozen pizza in their restaurants. If I'm considering buying those, I'm at the end of my rope. I want Connor to realize that plants grow leaves, and if they fall off you can't just snap them back on. Not that moss is really going to do that, but it's a start anyway. Plus, when it's raining outside for eight months out of the year and getting dark at 3:30 in the afternoon during the winter, you tend to spend a lot of time indoors, which is why I go a little crazy, I think, if I don't see some sort of growing thing inside my house other than the mildew that constantly tries to take over my kitchen and bathroom.

I might add that I'm also really cheap, and the thought of buying a more expensive substitute when I can grow the real thing for pennies really bothers me. Also those silk plants look real enough now that Loki would probably shred them anyway, just on principal.

So after Connor's therapy session yesterday, I ran by one of my favorite thrift stores and picked up a couple of neat containers. I went out into my lawn, dug up an appropriate patch of moss, plunked it in the jar, threw in a couple of rocks for good measure, and voila! Terrariums.

Loki immediately had to explore these strange things. That's my hand in the corner of the picture-- I was totally convinced he was going to take one look at them, think-- "Aha! Plants!" and swipe the glass containers off the counter. Instead he gave me a look of disgust and stalked off. I mean, how dare I think he's that stupid!

As if he's going to destroy them while I'm around. Of course he knows better. He'll wait until it's two a.m. on a night I've stayed up too late watching a horror movie and am lying awake in bed, convinced there's someone sneaking into my house wearing a ski mask and carrying a machete.


Crazy cat.



~Jess

First Meeting Heebie Jeebies

So our first meeting with the school district was interesting.

I say interesting because I'm not quite sure what to think of how things went, and I don't want to get too pessimistic before we've met any of the team we'll be working with. Basically we sat down with a coordinator, outlined the things that we wanted to do, set up an meeting for an evaluation, and then signed a piece of paper that said we'd been warm bodies in a room.

The coordinator was very, very nice, but I still came out of the meeting with a sinking feeling. We've outlined two very specific items that we want to walk out of Connor's IEP with and absolutely will not take no for an answer. We've thought about these items for quite some time. We've discussed them with his therapists, special education teacher, and doctor and they all agree with us that we are not asking for unreasonable things and have very, very good reasons for wanting them. They are:

1) Connor needs to be in a Deaf and Hard of Hearing classroom. Ideally we'd like to split his time-- two days a week in the Deaf and HOH classroom, and two days out of the week in the Developmental classroom, but if we have to choose one, we'll choose the Deaf and HoH. Connor has to continue to acquire language, and he needs to do it in an environment where his peers all sign, even if they are learning things a little bit out of his range. We can supplement with physical and speech therapy outside the classroom if necessary, but he can't spend four days out of the week in a classroom where he doesn't understand what everyone is saying.

2) Connor needs to be assigned an aide. We'd ideally like this aide, preferably a nurse aide, to go to SEE classes and learn how to sign. Since he uses a wheelchair that he cannot direct himself, needs help going to the restroom, cannot feed himself, is visually impaired, will have a g-tube, and is at risk for seizures in which he stops breathing, heart failure, and stroke, we feel that someone who is there to help Connor is not too much to ask.

Once we had outlined what we wanted for Connor, the coordinator, who as I said was very nice, began speaking gently to us about "least restrictive environment." She said that having an aide would be the highest level of restrictive environment, and they need to start with the fewest restrictions and work up from there.

After having said this, she then told me that there were only two schools who had an RN and LPN on staff, and the Deaf and HoH preschool was not one of them. Because of Connor's potentially life-threatening issues she believed it would be best for him to go to the one that was only five minutes away from the hospital.

So essentially what she was telling me is that in her opinion, it would be best if Connor went just to the Developmental preschool without an aide.

Now, I have a few problems with this. Okay, I have a lot of problems with this, but I'll just outline the ones that center around the logic she was using to justify this opinion. In my understanding, the concept of least restrictive environment centers around the idea that a child be as included as possible with other children who do not have special needs. Now while the Deaf and HoH classroom does contain mostly children who are Deaf or HoH, it also contains children who are CODAs (Children of Deaf Adults) or have siblings who are Deaf. If Connor can participate in a classroom with typical children provided he has an aide, I would think that this would be a less restrictive environment than putting him in a classroom of only special needs children without an aid and, I might add, without any form of communication.

I would be able to understand the logic behind him needing to be at the school only five minutes away from the hospital if I didn't already know that the Deaf and HoH preschool is only seven minutes away from the exact same hospital.

I didn't go into any of my reasons why I was not happy with the initially expressed opinion at this meeting. I know that the coordinator doesn't actually have any say in what happens to my child at this stage in the game, though she might later as she is also a child psychologist and could potentially be on the evaluation team. I didn't want to get angry and start things off on the wrong foot right from the beginning-- I'd much rather have a great, mutually respectful partnership with the school, so I won't dig my heels in until we get to the meeting where it matters. They might be completely in agreement with me and immediately give us everything we are asking for. That being said, I absolutely will not take no for an answer on these two requests, and I can be very, very stubborn when I need to be.

We'll just have to see. It's just that this seems to me like a warning we may have a fight on our hands.

~Jess

IEP

We have Connor's first IEP meeting this morning.

I know all we're doing is going over paperwork and saying that our son needs an IEP. I know this meeting is not very important.

Doesn't matter. I'm terrified anyway.

I'll let you all know how it goes.

The Kissing Corner: Part 2

I have never been good at waiting.

I think it's because I'm a worrier. I'm the type of person who lies awake at night thinking up implausible scenarios in my head and outlining what I would do if I was put in those situations. When I'm in the middle of a crisis and I have something to do, then I'm perfectly fine-- but take me away from the action and make me sit on my hands, and I'll drive myself slowly, quietly crazy thinking up everything that could go wrong and feeling totally helpless.

Connor's surgery was supposed to last two hours. It took six.

We had a couple of books to keep us busy, but neither of us could concentrate. We didn't talk to each other. There wasn't anything else to say. We just sat and glanced nervously every five minutes at the phone that was our link to the operating room.

In order to begin the surgery, the doctors had to remove the IV line in Connor's umbilical cord and insert a central line. This line would enable them to quickly administer medication if Connor's heart began to fail, and also to safely keep him under anesthesia for the amount of time needed to conduct the surgery. Connor's veins were so small that they were having difficulty placing the line-- the needle would go right through the vein. After an hour of trying to get the line in place, they were finally able to get it to work, only to have one of their medical students accidentally pull it out when he was helping positioning Connor on the operating room table. They had to start over from scratch.

After two hours they brought in a special IV team, who would attempt to cut down to Connor's jugular vein and insert the central line there. Unfortunately, they chose his left side when they were doing the procedure. We later discovered that Connor is missing his jugular vein on the left side.

Every half an hour or so, someone in the surgical room would call the phone and let us know that nothing had happened yet. Then we would call out to my mother's cell phone and let her know the news. She and Jeremy's mother would then call everyone else to let them know, and we would all go back to waiting.

We had many, many relatives and friends that would have gladly stayed in the waiting room with us, but we had asked to be alone. I think that everyone handles this sort of thing differently. In my case, and I think it was probably the same for Jeremy, I was so physically and emotionally exhausted that the thought of being in a room with other people, even people I loved very very much, was unbearable. I couldn't make small talk, or even eye contact. Every shred of self control I had was needed just to keep breathing. I think if anyone other than Jeremy had been there and tried to comfort me I would have just curled up in a ball in the middle of the floor and subsided into incoherent weeping. After our initial breakdown, we just sat across the room from each other in silence. Anything else would have been too painful.

After four and a half hours they finally managed to insert a central line. Now the surgery could begin.

By this point, Jeremy and I hadn't eaten for almost ten hours. We debated for a little while about whether or not we should go and find something to eat. We were both terrified that we'd leave and Connor would pass away on the operating room table while we were gone. We finally decided that Jer would go and find us something to eat and I would stay in the waiting room.

The cafeteria was on the other side of the hospital, in another building. By this point it was late enough that the normal doors leading to the building were all locked, so Jer had to come back empty handed. A nurse heard us trying to figure out what to do and offered to show us a passageway in the basement to reach the cafeteria. This time, I would go and Jeremy would stay.

The corridor was long and dark, and the cafeteria was mostly closed, but they had a cart of ready-made meals for the nurses and they let me take two. I hurried back down the corridor, which now seemed twice as long, and into the elevator. I walked through the open doors and saw the surgeon sitting in the chair next to Jeremy, their backs to me. The bottom fell out of my world-- the surgery was supposed to last at least another half an hour.

Then Jeremy turned and gave me an exhausted, elated grin, and I knew everything was okay.

Once the problem of the central line had been solved, the surgeon told us, Connor's surgery went like a dream. His heart had absolutely no problems, they had no trouble removing the kidney, and things went much, much faster than they expected. Connor was already being moved to a new room in the Cardiac ICU, and we would be able to see him just as soon as everything was set up.

We called out, told everyone the news, and then raced down to the Cardiac ICU. It was past midnight and we were so tired we were nearly delirious, but somehow hearing it from the surgeon wasn't enough. Before we could leave for the night, we had to see our son.

The receptionist at the desk told us that they were still getting Connor settled, but she'd let us know as soon as they were ready for us. We waited another two hours before we were allowed in-- the nurses forgot to tell the receptionist that they were finished. Finally we were buzzed through at around 2am and stumbled down the corridor towards his room.

He was still asleep, still intubated, swollen beyond all recognition, and covered in tubes and wires, and it didn't matter--he was the most beautiful thing I had ever seen.

Our son was alive.

~Jess

If you are looking for it, here's part one.

The Kissing Corner: Part 1

This is a serious, rather painful blog post. If you aren't in a serious mood right now, this is not the post for you.

I'm a frequent reader of Carrie's blog, Little Miss Hannah. Carrie writes about her daughter Hannah, who has recently been diagnosed with Gaucher Disease. She wrote a post today that made me want to share our own experiences with dealing with the knowledge that our son may have a shortened life span.

We were originally told that Connor would be stillborn, and I spent the last four months of my pregnancy waiting for him to die. Every week we would go in for an ultrasound, every week we would see him still moving, his little heart still beating, and every week Jeremy would drive us back to the house while I sobbed in the car, simultaneously relieved and terrified that he was still alive.

We didn't know what the future would hold for us, but the doctors told us that it would probably be bleak.

When Connor reached the point where he could survived outside the womb, we began to have more hope. Surely if he'd made it this far, he would be okay. When it looked like he was taking a turn for the worse, we went ahead and induced labor. Connor was born after 23 hours with his umbilical cord wrapped around his neck, blue-gray, unbreathing and totally limp. His heart was still beating, though, and five minutes later I held a tiny little bundle in my arms for an all too brief moment before he was whisked off to the NICU.

Everything was so confusing and it was all so fast that we didn't really know what to think. Connor had a whole host of life-threatening problems. He had about 25 birth defects, affecting almost every system in his body except for his respiratory system. His right kidney was so large it was cutting off blood flow to the rest of his body and displacing his other organs. His brain was missing a couple of areas and others were small or malformed.

On the second day they gave us the news. We were told that if he was to make it that he would probably have what they called brain stem function only-- that he would breath and his heart would beat, but that was about it. He would never know who we were, never interact with his surroundings, never laugh or move his arms and legs with purpose. I lay awake that night secretly wondering if it would be better for him if he didn't survive.

On the third day they let me hold him for the first time. It was a delicate and tricky maneuver-- he had so many wires, sensors and IVs that it was terribly difficult to transfer him to a chair without losing something, but Jeremy and the nurse managed and suddenly Connor was in my arms. He let out a little sigh and fell asleep. I remember bending over his head, and the smell of his hair hit me like a wave and I was utterly, completely lost. He smelled like a combination of every good, clean thing there is in this world. Fresh baked bread. Newly turned soil. Air swept clean after a thunderstorm. Home. That was it for me. It didn't matter what the doctors said. I was in love.

On the fourth day, we sat in a little room with seven doctors and a chaplain who asked us to choose the manner of our son's dying. Connor's kidney was causing his blood pressure to sky rocket, and they didn't think his heart could hold out too much longer. If they didn't do the surgery to remove the kidney, he was sure to pass away within the next few days. However, his blood pressure was also dangerously high for surgery, and they believed that his heart probably would not make it through the stress. They gave him between a five and ten percent chance of survival. What did we want to do?

We knew that kidney ailments are excruciatingly painful, and that Connor had probably been in constant agony for the last three months of my pregnancy. We felt like if Connor was going to pass away, it would be better to do it on the operating room table where he would feel nothing and his passing would be quick rather than a lingering painful death. There was the feeling, too, that Connor had fought so hard to make it this far, that we couldn't allow him to not have that chance. We calmly explained our reasons, and told them to do the surgery. Then we asked for a moment alone, and when everyone had left, broke down in each other's arms.

We baptized Connor that afternoon. The chaplain was excited: it was his first baptism, and he was very honored to be present. He smiled as he told us that normally they don't do these things unless it looks like death is near, but he'd talked with the doctors and thought that it would probably be a good idea. Then he realized what he'd said, turned a little pale, and suddenly became very busy looking up a passage of scripture.

On the fifth day, we said goodbye to our son. I remember waking up that morning and being shocked that the sun was still shining. It didn't seem right, that the sun should be shining on the day my son would die. And all of the people walking around on the street-- didn't they know that the world was over?

We took a roll of pictures of him. We sang him a lullaby. We caressed his forehead. We walked in silence next to his isolette as we headed down towards the surgery room, and with every step it felt like I was walking in a dream. None of this should have been happening. I wanted to snatch Connor out of the isolette and run.

The men who transported him down to the operating room didn't know about his prognosis. We reached a corner and stopped.

"We call this the kissing corner," one of the men said. "We call it that because this is where you kiss them goodbye."

And I looked at my son, and touched his hand through the glass, and I said goodbye. I tried to throw as much of myself into those words as I could so that he'd know I was there with him and he wouldn't be scared. And I watched them wheel him around that corner, saw a last glimpse of his hair through the glass, and I thought, that's it. That's the last time I will see my son.

We managed to find a private room, stumbled into it, closed the door, put our arms around each other, and felt our hearts break in our chests.

~Jess

For part 2, click here.

Scary Day.

As I'm typing, Connor's asleep in the next room, listening to one of his favorite CDs: Heartbeat, Kodo's 25th anniversary album. Kodo is a taiko band-- Japanese drumming-- but they combine all sorts of world music elements in their CD. It's not exactly what I would call relaxing, but Connor seems to love it. I think one of the reasons he enjoys it so much is that he can hear some of the drumming and feel the vibrations even with his hearing aids off.

He and I both had a rough day today. We had to sell our little car, as the clutch is broken (to the tune of 1300 dollars or so) and to fix it would be almost more than the car is worth. Since Jer will be deploying at some point in the relatively near future, there's not really any point in buying a new car only to have it sit for a year. So we sold the Hyundai to a very nice man who was looking for a safer car to drive his eight month old daughter around in, and just happened to be an Hyundai auto tech, so he could fix it up for much less.

At any rate, Connor and I went by this gentleman's place of work to sign over the title. I had Connor's wheelchair with me as I wasn't sure how long we would be there and it's very difficult to hold and sign paperwork when you have a 20 something pound wiggly kid in one arm. There was no wheelchair ramp to get to the service station-- my choices were between walking all the way down the parking lot to the outside of the center and going around through the car entrance, or to try and take the wheelchair up a really short flight of stairs with a couple of steps, a big landing, and then a couple more steps. I've taken Connor up steps like these in his stroller probably 8,000 times, so I didn't think the wheelchair would be any different.


A very nice man at the dealership had seen me assembling Connor's wheelchair out the window and offered to lend me a hand, which I accepted. He lifted the chair up on to the wheelchair base for me. Unfortunately while I heard the click of it snapping into place, and jiggled it to make sure it had caught, I failed to look up under the wheelchair to assure that the front hooks were fully engaged. You can probably see where this is going.


I took Connor up the first two stairs with no problem, stopped on the landing for a moment, tilted the front wheels up to go up the next stairs, and then watched in horrified disbelief as the entire chair lifted off the base in what seemed like slow motion, pivoted up, and landed face-down on the concrete stairway.


I frantically turned the chair over and inspected a very, very scared and very, very sad Connor. I grabbed my phone out of my back pocket as I turned the chair over, expecting to have to call 911, especially since Connor is only secured to the chair by a lap belt and so should have hit the concrete head first. I was absolutely amazed to discover that though he was scared, he wasn't bleeding at all. Apparently the chair had fallen so that Connor's head was in between steps instead of on them, and the frame of the chair had protected the rest of his body. We sat down on the steps and I cautiously inspected him from head to toe. Miraculously, not only were there no broken bones or head injuries, there wasn't a scratch on the kid. He calmed down pretty quickly, and signed back to my questions that he was scared but he didn't hurt anywhere.


I think Connor's guardian angel deserves a serious pay raise.

So after we finished up with selling the car, we drove home, Connor went down for a nap, and I had a short shower and a fit of hysterics. I learned two basic lessons about Connor's wheelchair from this experience. I will never, ever ever ever attempt to take Connor up any stairs in his wheelchair ever, ever ever again. I will always, always always physically check under the chair to make sure that all of the hooks are engaged that should be, even if I've heard the click of them engaging and checked the chair by feel.

Connor also learned a lesson about his wheelchair. Connor learned that wheelchairs are scary, evil demons that make you fly up into the air and fall down with no warning. Connor is now (and rightfully so) absolutely terrified of his wheelchair and doesn't want to have anything to do with it.

Thank God he's okay.


~Jess

Primal Scream Day

I've been trying to do more interpreting for Connor in areas such as meetings, parties, doctor's appointments, performances, and conversations. I feel like he gets left out of a lot of things that could be learning opportunities for him, plus it's a good way to work on my interpreting skills. The problem is that I'm still pretty slow while signing, so I get way, way behind and have to paraphrase to catch up. I'm sure this probably drives Connor nuts, but the only way I'll get faster is to keep practicing, and we can't really just have an interpreter follow us around all day, so I'll keep doing it.

As a consequence, I've developed a list of pet peeves. Since Ellen over at To The Max has declared it Primal Scream day, I'll be sharing them with you. I know we're supposed to do it in all caps, but I can't bring myself to do it. Oh well. This isn't really a primal scream, anyway-- more like a list of whines.

PEOPLE WHO TALK REALLY REALLY FAST: I know it's in your nature, and you shouldn't have to slow down for me, but I'm still on your first sentence and you're already done talking and impatiently waiting for me to reply to you. Slow down a bit, for the love of God.

PEOPLE, ESPECIALLY DOCTORS, WHO USE REALLY REALLY BIG WORDS: Your sentence involved the words sphygmomanometer and photoplethysmograph, when you could have said blood pressure cuff and oxygen saturation levels. We all know you are really, really smart-- you made it through medical school, after all. But do you realize I have to finger spell all of these words? Do you realize I can't spell most of these words? It makes for really slow going.

PEOPLE WHO WORK WITH SPECIAL NEEDS CHILDREN WHO HAVE BEARDS: My son cannot lip read if you look like Santa Claus. I know there are lips in there somewhere and it is your personal style choice, but if you work with anyone who is having to lip read, shave.

PEOPLE WHO LOOK AT ME WHEN THEY ARE TALKING TO MY SON: Sure, I'm the one telling him what you said. But he's going to think that eye contact is not part of a conversation. If you want to ask him a question, ask him, not me. I'm going to start giving you his answer while looking at that potted plant over there.

PEOPLE WHO THINK I AM DEAF BECAUSE I AM SIGNING TO MY SON AND START TALKING ABOUT US TO EACH OTHER VERY LOUDLY IN THE GROCERY STORE: Yes, I can hear you. I am not Deaf. And yes, I can shop in the grocery store all by my very own little self, bless my little heart. Watch me start talking very loudly and signing to my son about how rude you are for saying those kinds of things about people when you think they can't hear you. Also about your weight problem.

Ahem. Rant over.

~Jess

New Layout!

So I have a new blog layout, probably because Jer has the car today and I don't feel like cleaning. And believe me, the house definitely needs cleaning. Jer's getting ready to leave for training so every article of army gear he owns is in the middle of entryway, I just finished cleaning out Connor's closets and have yet to make it over to the recycling center or the thrift store, so there's a big pile of the stuff to take there in the middle of the living room floor, and I'm doing a bunch of laundry. I don't even have Connor to use as an excuse because he's not making any of the mess since he's not mobile. Lord only knows what the house would look like if he was. As it stands, his room is about the only clean one in the house.



We had a guy from the FBI stop by today. NOT FOR ME-- he was doing a background check on someone to give them higher security clearance. I haven't been up to any illegal shenanigans, I swear. Anyway, he took a look around my living room and asked us to what state we were moving. Ouch. Guess he thought we were packing and that's why the house was so messy.



Guess I'd better go do something about it now.


~Jess

School Worries

So we're just starting to really gear up for Connor's transition to school. I have to admit: I'm totally, completely, NOT READY for him to be in school. I've been in denial for the last few months. Surely my BABY won't be three that soon?

But here we are less then three months away, and suddenly whether I want to or not I have to start getting him ready. It's IEP time.

For those of you who aren't teachers or parents of special needs children, an Individualized Education Program, or IEP, is a contract with a school that outlines the educational goals of the student, any aid, programs, or supports to be provided by the school, and any other accommodations needed. Every special education student is required by law to have one.

Now in Connor's case, we feel that we should do a little something extra for his teacher or teachers. After all, if I was a teacher and received an IEP for a child that included the kind of medical report and evaluation Connor's folder will likely have, I would be very intimidated and a bit at a loss about what to do with the child. I want to let Connor's teachers know what his strengths are and the most effective teaching methods for him without making them defensive or having them feel like I'm overbearing or interfering. I think a friendly, not antagonistic relationship would be the best for all parties involved.

So here's what I'm thinking. I'd like to make a notebook for Connor's teacher. It would be a three ring binder (easily updated) divided it into three main sections: About Connor, Communication, and Medical. Here's what would go in each section:

About Connor:
Personality
Areas of Interests and Favorite Games
Likes And Dislikes
Strengths and Areas of Difficulty

Communication:
Connor's Signs
Vocalizations and Their Causes
Other Methods of Communication (eye-pointing, picture communication, etc)
This section would also include a DVD of as many of Connors signs as we can capture on tape, and me or one of Connor's therapists signing the rest. We'd also try and film some of Connor's games and common behaviors as a resource for the teachers.

Medical:
A brief explanation of Connor's medical issues in layman's terms
How these issues will affect Connor in the classroom
Medications Connor is taking
Special Dietary Issues and Allergies
Emergency Contact Guide
Emergency procedures in the event Connor has his g-tube pulled out, has a seizure, goes into heart failure, etc.
Instructions for all of Connor's equipment-- hearing aids, FM system, wheelchair, g-tube, oxygen, etc.

So I'm kind of wondering whether or not this is really a good idea or would be useful to a teacher, or if it would be totally overbearing. Some of this info will probably be in the IEP-- I figured it might be a little easier to wade through if it was organized like this, though. What do you all think? Am I being silly?

~Jessie

Happenings.

Connor had a neurology appointment yesterday, which went pretty well. We upped his Keppra dosage because he's gained a little weight, and just talked about potential problems with Connors upcoming surgery. We can give his seizure medication by IV, so there shouldn't be too much trouble with breakthrough seizures or anything of that sort. The doctor was pretty impressed by Connor's standing and following of instructions, so that was nice. We always like to impress the doctors.

The little guy didn't sleep very well last night and was feeling kind of punky this morning, so we skipped our therapy session. He perked up in the afternoon and now I'm pretty sure he's not getting sick-- just feeling under the weather from lack of sleep.

I attempted to make all kinds of appointments today, with very little luck. I want to get all of his 3 year appointments out of the way before he actually turns three so I don't have to keep pulling him out of school. Unfortunately everyone seems to have decided to get sick at the same time I am making these appointments, so everything seems to be full. I'll just call at seven in the morning every morning for the next couple of weeks until I'm able to make all five of the important ones (Ophthalmology, Developmental, Primary Care, Cardiology, and his dentist). The others can wait. Maybe I'll have better luck tomorrow.

On a completely different topic: I'm wearing my new blue sweater today that I bought over the Christmas holidays. I love this sweater-- it's a gorgeous color and it's very soft and warm. The problem with it is twofold: it has a tendency to pill and Connor also loves it. Specifically, he loves to rub his face and hands all over it while I'm carrying him. The result looks sort of like if they made an episode of Sesame Street entitled Grover Discovers Nair. Connor is covered with patches of very short, very blue fuzz in unexpected places all over his face, hair and hands. Oh well.

~Jessie

Wheelchair Shenanigans

The cats weren't originally sure what to make of Connor's new equipment, but Cricket finally figured it out. Apparently Connor's wheelchair is actually a new cat tower for her.

Silly me. I should have known this was the real reason we needed a wheelchair.

We took it the stroller base out yesterday for our first trip to the store to see how it would handle. This thing is great! It turns like a dream and is surprisingly easy to maneuver around tight areas. The only problem is that once you get it in the trunk, nothing else is going to fit in there. Oh well-- we'll get a wheelchair adapted car someday to solve that problem-- but hopefully no time in the near future.

I'm trying to figure out now (because I'm ridiculous and I worry about this sort of stuff) what we would do if we ended up adopting another wheelchair-bound kid. Hopefully the other kid would be able to push her wheelchair herself, but we are going to have NO room in the car. Oh well. Something we don't even remotely have to think about any time in the next two years, but I'm crazy like that.

On a totally different topic-- Happy MLK day, everyone!

~Jessie

Do You Smell That?

I apologize in advance if this post is rather scatterbrained. I made truffles today, and am currently on a major sugar high as a result of the massive quantities of chocolate I consumed during the cooking process. The fact that some of the truffles contained espresso probably did not help.

Anyway, I spent a lot of time in the kitchen today, which brings me to my topic for the evening-- using your spice rack as a therapy tool.

As you all know, Connor has Sensory Processing Disorder. His mostly manifests in a reluctance to touch new objects and in an extreme sensitivity to texture, but all of the senses are connected. What we've discovered is that if we work on one sense-- sound, or smell for example-- after a while he's able to tolerate more stimulation of his other senses as well. So about once a week or so, I choose some selections from my spice rack, bath products box, and tea collection, and we spend about twenty minutes experiencing different smells.

It's very funny to watch which smells Connor enjoys and which he can't stand. He really likes smells that I use often in my cooking-- he particularly enjoys cinnamon, nutmeg, oregano and rosemary. He hates almost all floral scents. My lavender tea makes him act like I've shoved offal under his nose. He doesn't care for citrus. He also hates spicy scents, even though he loves spicy food.

Surprisingly enough, despite his hatred of all things floral, his favorite scent is jasmine. He LOVES the smell of my jasmine tea. Who wouldn't? That stuff is amazing. He will attempt to shove his entire nose into the jar to get closer to the smell. I have to save it for last, because he will sometimes refuse to smell anything else after it, but will just sit there whining and pouting until I let him smell it again.

During the spring and summer we venture out into the garden, and while I'm working I crush herbs and stick them under his nose. I'll rub them on his hands as well, and he spends a lot of time holding them to his nose, taking them away and looking at them, and then holding them to his nose again.

I've never been a big believer in aromatherapy, but in recent months I've changed my tune. I've found that if I have Connor smell some of his favorite scents before we go to a noisy, crowded place, he's less likely to have difficulties while we are out. I'm seriously considering getting some essential oils of his favorite scents and carrying them in my diaper bag to have on hand if he gets worked up about something. In the meantime we'll just keep making due with my less portable (but free!) garden herbs and spices.

~Jess

The Cats Shall Rise Again

As I write this, Loki is sitting in the middle of the kitchen counter meowing at the top of his lungs, and Cricket is shredding my printer paper with her teeth.

My cats are on strike.

They are citing unreasonable working conditions as their reason for wreacking havoc on my household. Specifically, their food bowl is empty.

They have been out of food for a grand total of six hours. Therefore they are on starvation corner and Something Must Be Done.

I have tried telling them that Jeremy is dropping by the store on his way home and that there will be food this evening. I have tried pointing out that since it has only been six hours and they ate an entire bowl of food this morning, there is no possible way that they could be starving. The cats see right through all of my flimsy excuses.

Here's what this looks like:

Cricket: Uh oh. We're out of food.
Loki: Something Must Be Done!
Cricket: Maybe our servant doesn't realize the appalling condition of the food bowl. Let's stand right by it and meow really, really loud.
Loki: Good idea
cue 10 minutes of yowling
Me: I have no food for you. Sorry.
Loki: This doesn't seem to be working.
Cricket: It is so difficult to get good staff these days. Maybe she's just gotten lost on her way to the kitchen again. I'll go remind her of where the food bowl is.
Cricket begins to twine around my legs, meowing. Runs three feet towards the kitchen and stops. Runs back and meows again. Repeat 22 times.
Cricket: Heeeeeeeere peonpeonpeonpeon. Heeeeeeere peonpeonpeon. Who's a good little peon? The kitchen is THIS way. There you go. Very good! Now, get the cat food. Good, good, good...no that's the teapot. CAT FOOD. You want CAT FOOD over-- wait! Come back! Dang it.
Loki: I say we fire her.
Cricket: And hire who, the little noisy one?
Loki: Well, let's dock her pay, anyway.
Cricket: I quite agree. Would you prefer shredding toilet paper or breaking crockery?
Loki: Toilet paper.
Cricket: All right. I'll take the couch pillows.
Loki: Vengeance will be ours.

Thus my house has been torn apart today by two small whirling dervishes of death and destruction. Jeremy will be home in about an hour, so Connor and I have barricaded the door of the office in a desperate attempt to keep the cats from eating us before he returns.

Luckily my cats are active enough to keep themselves relatively in shape, because the day I attempt to put them on a diet will be the day that my cats decide maybe shredding the toilet paper isn't effective enough and more drastic measures must be taken. I imagine they'd leave my twitching corpse near the foodbowl as a warning for the next owners to keep it topped off.

Crazy cats.

~Jess

The Chariot Has Arrived!

So on Monday, Connor's wheelchair was delivered.

I spent a total of about two hours readjusting Connor's wheelchair seat to fit him properly and figuring out exactly how to fold, unfold and put everything together. Here's a shot of Connor in his newly put-together wheelchair with the stroller base. The quick chassis and jogging stroller are hanging out in the background.

He has to have one for school, there's no question about that. All the same, this thing is... huge. I mean, HUGE. Connor looks like some sort of doll perched up in the top of the thing. When we first received the chair, they had to screw a big wooden block onto the footrests so that Connor's feet didn't dangle in mid-air. I'm going to look like I'm just too lazy to carry him.

We are using the EASyS system. Basically, we have one chair and a number of bases that go with it. There's the "stroller" base, which is the only one that is okay for use in a vehicle. Then there's the "quick chassis," which is what our physical therapist termed a "high-low" base. This base has a hydraulic system in it that allows us to raise and lower Connor's chair to the appropriate height for whomever he's interacting with. This is also the base that we are most likely to be using in school. We also have the jogging stroller base, for when I'm looking for a bit of masochism and banging my head against the door jam just isn't going to be enough for the day. Ever tried pushing a twenty three pound kid in a fifty pound stroller up a hill? Loads of fun, I tell you.

After Jeremy got home we switched the chair over to the quick chassis base and lots of fun in the middle of the living room ("...and NOW you're UP, Connor! And NOW you're DOWN!! And now you're UP again! And now...") which is pretty typical of Jer and my maturity level. Trust me, if this thing didn't have a 110 pound weight limit, we would have been hitching rides.

At any rate, they are in the house now and ready for school, which is looming on the horizon in the next few months. Now there's just the problem of where the heck I'm going to store these things when not in use, given that I have a grand total of four closets in my house, none of which is more than two feet deep.

Sigh.

~Jess

WARNING: This Post Discusses Poop

Hi! We're back from the holidays and finally settled in again. "Settled in" meaning there's still a huge pile of luggage sitting in the middle of the office floor, but at least I have the laundry started. It's only been a couple of weeks since we got back. We emulate sloths around here.

I could tell you all about our travels, Christmas holidays, (which were great, by the way) etc but I'm not going to do that. Instead, I'm going to talk to you about poop.

That's right. Poop. If you are at all squeamish, this post is not for you.

We had an appointment with the GI doc today to finally, finally figure out what surgeries Connor is going to need. After reviewing the approximately 8,000 tests (maybe a slight exaggeration) the little guy has had to this date, the doc came in and gave us the good news and the bad news.

The good news was, well, good. Fantastic, actually. The doc told us that not only will Connor need to just have the g-tube and not the other two surgeries, but that also in his opinion we'll be able to start working Connor down off the reflux meds once the g-tube is in place, as he probably doesn't need them anymore. This is awesome news. This means that more than likely they will be able to do the surgery endoscopically or laparoscopically, which in practical terms amounts to a much, much shorter hospital stay and risk of infection. This was exactly what we had hoped to hear.

The bad news was that Connor did have some issues with food staying in his stomach too long. The reason, however, was probably not because Connor has too small of a pyloric valve. The problem is that he is constipated.

See, Connor currently subsists on a diet that is composed chiefly of whole milk, carnation instant breakfast, and cooking oil. This apparently is not so good for keeping the plumbing moving if you know what I mean. To be frank, it produces poop like small boulders. Action must be taken. Which leads me to the topic of the day...

Enemas. Yep. Fleet Pediatric Enemas, to be exact. Two of them-- one today, and one tomorrow. In addition to that, we will be feeding our son a teaspoon and a half of MiraLax (their slogan: Restore Your Body's Natural Rhythm!) for the next year, and then we'll go from there.

So when we left the hospital, I went straight across the street and shuffled-- head down and with sunglasses on-- into Safeway. If I'd had a trench coat and fedora, I'd have been wearing them. I have to admit, as laid back as I usually am about these things, these are not products I was comfortable buying.

I was really hoping they sold MiraLax in a container that said PEDIATRIC-- WHICH MEANS NOT FOR ADULTS-- THIS LADY IS NOT BUYING A HUGE JAR OF LAXATIVES FOR HERSELF in three inch high letters, but unfortunately they didn't think to put that on the label, so I had to buy two or three things and hope to kind of slip the Miralax in and pretend it's I don't know, vitamins or something. I sidled up to the counter, praying from the bottom of my heart that I wouldn't get a chatty clerk, while desperately trying not to blurt out those five little words that doom you to shopper's hell: "those are not for me." Cashiers automatically don't believe you when you say those words. Those are the words that the shifty looking guy with the red eyes uses when he buys that big bottle of vodka every week "for his cousin." If they weren't paying attention to what you had in your cart before, they sure as heck are now, and you can bet it will be discussed in the break room and, depending on the contents of said shopping cart, possibly posted on the Internet at a later date.

Luckily, I got a clerk who was obviously towards the end of his shift and was therefore in the "zone"-- you know, the kind with slightly glazed eyes who asks you how you are and then says "Fine, thanks!" when you ask them for today's date. Good fortune was with me only so far, however, because they did not carry pediatric enemas at Safeway, so I had yet another embarrassing shopping trip to look forward to later in the evening.

After my sign class, I ventured out yet again to scour the stores. The first place I tried was sold out-- who knew there was such a demand for enemas--but I was able to grab the last two off the shelf at the local Walgreens.

This time I was not quite so lucky in my choice of cashiers. I got the super optimistic bored teenage guy-- you know-- the one who really, really wants to know how your day was. Really. Our conversation went something like this:

Him: Hi! How are you?
Me: smiling nervously Fine.
Him: How was your day today?
Me: Um. Interesting.
Him: He has his hand on the first package of enemas but has yet to ring anything up. Interesting good or interesting bad?
Me: thinks: Oh God. I'm Doomed. Um. Just interesting.
Him: So what happened? Looks at package, sees the word enema, turns bright red, suddenly becomes extremely interested in the buttons on the cash register.
Me: Those are not for me.
Him: Okaywellnicetoseeyouhaveagooddaybye. Shoves package and receipt at me, has a whole lot of urgent things to do on the other side of the store.

So anyway, I did finally get home around 8:30 at night, and Connor was still awake. We decided that now was as good a time as any.
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If you are at all squeamish, this is the part where you stop reading my blog and go look at pictures of kittens or something. You've been warned.

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First things first. We read the directions, which involve placing your child in one of two positions, both butt up, and, well, we won't get more specific on the rest of the directions but we decided based on one key phrase that it was going to be best to start out in the bathtub. I quote: "keep child in position until urge to evacuate is strong (usually one to five minutes.)" So what we essentially had here, folks, was a game of poop explosion hot potato.

Naturally, since I had been to the doctor's office and heard the instructions so this whole thing was apparently my idea, it was somehow decided that I would get to be in the line of fire, holding the boy in position while Jer did the honors.

We were prepared for Extreme Sadness, but Connor took the whole thing surprisingly well. I waited about 30 seconds after Jer pushed the plunger, so to speak, and then got out of the bathtub (which, given the events to follow, is something that I am still extremely, extremely thankful for), leaving Connor on his side on a towel. Here's a loose reconstruction of my conversation with Jer in the moments that followed:

Jer: Wow. He's not upset at all.
Me: Yeah. Crazy. I guess those years of rectal thermometer use have kind of jaded him to this sort of thing.
Jer: Yeah. Guess so. How long has it been now?
Me: About a minute. How are we supposed to know when it's time to move him to the toilet?
Jer: I don't know. Maybe we should go ahead and HOLY CRAP DID YOU SEE THAT? HOW MANY FEET DO YOU THINK THAT WAS, ANYWAY?
Me: Oh. My. God.

Ever seen a kid erupt like a geyser? Well, if you never, ever want to see it (and believe me, you don't) please don't show up at my house tomorrow around seven in the evening, when we will be staging a repeat performance. Joy of joys.

And that was my day today. How was yours?

~Jess