Tuesday, December 16, 2008
We've been talking about the plane all week, and about how just he and I will go first, and then Daddy will come in a few days. I think Connor is a little bit nervous about it. A couple of times this week he's woken up crying. He doesn't really cry unless something is wrong; I suspect he's having nightmares.
He's always had an incredible bond with Jeremy. When he has a painful procedure or is scared by something, Daddy is the one he asks for. I think part of it is that he sees me all day, whereas he only sees Jer in the evenings or on weekends. Jeremy always plays with him for a while when he gets home, whereas I take him to doctors' appointments where he gets shots and therapist appointments where he's forced to touch things he doesn't want to touch, have his arms and legs manipulated into weird positions, and do all manner of unpleasant things. I've noticed that if Jer's been working late all week, Connor tends to be more crabby and harder to put to bed. I think it's because Jer helps give him that hard roughhousing time so that he's calmer and more likely to go to sleep afterwards.
We talk about where Daddy is several times during the day. Connor's first sentence was "Daddy work." Whenever the front door opens, his whole face lights up and he signs "Daddy! Daddy!"
I don't begrudge Jeremy's superhero status in Connor's eyes. Part of it is that I know when I leave the room, Connor immediately signs "Mommy" and looks around for me. Of course he loves me just as much. I am the constant in his life, and he doesn't need to sign for me most of the time because I am always there. He spends almost every waking hour of his day with me, but only gets to see Jeremy those few precious hours before bed and on those two weekend days-- and sometimes, not even that. He doesn't understand why Jeremy leaves for weeks-- just that his Daddy is gone. No wonder he gets nervous when we talk about leaving Daddy for a few days and flying to a strange place. To a two year old, a few days could be an hour or forever.
The night before last when he woke up crying, Jer and I brought him into our bed. He calmed down immediately, and he and I had a little conversation.
"Did you get scared?" I asked him.
He nods his head yes.
"It's okay to be scared sometimes," I said. "We all get scared. It's okay to cry. We all cry. Even Mommy and Daddy cry sometimes."
Yes, he nods.
"Are you ready to go back to your room now?"
No, he signs, no, and then he puts his hand on my arm and stares at me, lower lip quivering.
"Okay. You can stay with us for a while."
He heaves a big sigh and snuggles into Jeremy's shoulder. "Daddy," he signs, and smiles.
Saturday, December 13, 2008
Connor and I have started talking about the airplane we're going to go on. The kid is a veteran flier-- he's had eleven plane trips, but this will be the first one as a toddler, so it should be interesting. Hopefully I will not be forced to drive the other passengers slowly insane by repeating the ABC song under my breath 18,000 times in a row in order to keep him from screaming. This kid is obsessed with the ABCs. He especially likes the W. He is perfectly happy to listen and watch me sing and sign them until my hands cramp up. Somehow I'm thinking the poor person sitting next to us will not be so amused.
He's looking forward to seeing his relatives, I think. He's especially looking forward to seeing my father, his Papa, because the sign we use for "Papa" is very similar to the sign for "pony"-- his other current obsession. This could possibly cause problems. I'm wondering what exactly he thinks his grandpa looks like.
Connor's been a little harder to take out in public recently. There are a couple reasons for that. The first is the holiday season. Connor has some pretty severe issues with Sensory Processing Disorder-- he can't take in and make sense of a lot of sensory information coming at him all at once. The holidays are a nightmare for this sort of thing. People ringing bells in front of the grocery store. Holiday crowds. Loud piped in music. Holiday candles. Christmas lights and dangling ornaments. Dayglo toys and displays.
Connor copes with this sort of thing in one of three ways. The first is that he'll close his eyes. He does this in especially loud environments. He squeezes them shut, wrinkles his nose up, and buries his face in my shoulder. The touch and scent of my clothing is a familiar thing, so he's used to that, and if he closes his eyes too he only has to deal with processing the noise.
The second way he copes is that he'll stare his hands or at lights on the ceiling. He does this if there are too many visually stimulating things and strange smells in the room, but it's fairly quiet. By staring at the ceiling or focusing on a familiar thing (his hands) he's able to block out all of the other stuff going on and just focus on smell. This is a fun thing when I'm carrying him on my hip and he's leaning way back to see the lights.
The third technique that Connor uses is the one that makes me have to do my Christmas shopping in very small doses. If there are too many things to see, too many noises, and too many strange smells, Connor will squeeze his eyes shut and start screaming at the top of his lungs. If he makes a really loud noise that drowns out the other noises, and he blocks off the visual stimulation, than he'll be okay since he only has to focus on smells. This is about the time I start heading for the door. This kid has a set of lungs.
Guess which coping mechanism I'm seeing the most this time of year?
I'm doing my shopping in fifteen minute intervals.
Wednesday, December 10, 2008
Connor was much better this time about her being there and me holding her. He was very concerned about her crying, though I suspect that initially he just didn't like how loud she was being. He kept wincing and shaking his head no, and finally he pulled his hearing aids out.
Connor is generally very empathetic-- he used to cry when other little kids cried. When he first got his hearing aids, though, the noise sounded so different from what he was used to hearing that when a little one cried around him, he started laughing. Whoops. He eventually re-identified the sound, though. I think that his empathy in this case was tempered by the fact that this was the Stranger Baby and HIS Mother was the one doing the holding and comforting.
Our cat Cricket was absolutely frantic, however. This is the cat that becomes Very Concerned whenever I sing in the house. I think she's convinced I've been mortally wounded and am howling in pain. She always runs up and desperately throws herself at me to try and comfort me-- not a very flattering reaction, I'm afraid. She has a healthy respect for babies (after Connor kicked her in the nose on their first meeting) and normally stays far, far away from them, but she broke her own rule and followed me around the house, head butting my ankles and wailing sympathetically. It was a noisy household.
Baby E is still adorable, though.
It's incredibly difficult to find a babysitter for a child with as many medical needs as Connor has. Our respite care worker, Katy, is fantastic. She only works weekends for us, however, as she has a full time job as well, so that means I need to ask around and see what I can find.
If we can't figure out someone to watch him, I'll go back to what I did last year, and have Connor's Family Conversations therapist bring the lessons out. It's not ideal, but it's certainly better than no lessons at all.
We've been learning SEE for about ten months now, and I have to say I'm really enjoying the classes. I've gotten to the point where I can hold a conversation without any real difficulty. Jer is a bit behind me, but this is because I have many, many more opportunities to practice SEE during the week than he does. We're going to have to figure out some way to let him keep studying while he's deployed. Maybe I can videotape lessons and send them to him or something. He's very, very quick at picking up sign when he does have a chance to practice, and I'm sure he'll continue to learn.
I've picked up some tricks to help me learn more vocabulary and become more fluid. I listen to country western songs in the car (though I don't particularly care for country western music) and Christmas carols this time of year so that I can sign along to the music at stop lights. It gets you some interesting looks from the cars next to you--especially if you are in the car by yourself-- but is pretty helpful. Country western music has the advantage of having a lot of very slow songs with very simple words, so that makes it easier for me to sign to them. I also have learned the signs to almost all the picture books in Connor's rather large collection. That helps me pick up words that don't come up in everyday conversation.
I try and set myself vocabulary goals based on what we're doing that day. If I'm making beef stew one night for example, in the morning I'll learn the signs of all the vegetables and kitchen utensils I'll be using, and that way I can talk to Connor about the stew in the evening as I'm cooking.
Once I become fluent in SEE, I plan to start taking classes in ASL. Despite that, we'll probably always use SEE for Connor.
Let me explain the difference between the two and our reasons behind that decision.
American Sign Language (ASL) is a completely different language from English, with it's own set of grammatical rules, slang, and proverbs. Structurally it's set up more like French, and it's impossible to speak and sign ASL at the same time. It's the predominant language of those who sign in the Deaf community.
Signed Exact English (SEE) is not a separate language from English. It's simply a different medium to portray English in, like writing. You speak and sign at the same time with SEE, and unlike ASL, all of the slang, saying, etc are exactly the same as English.
We use SEE with Connor instead of ASL for a number of reasons. Connor is HoH, and when he was first diagnosed his hearing loss was fairly mild, so he was already understanding some English. He deals with cognitive delays due to his wide variety of neurological issues, so we didn't want him to have to start over on learning language since it took him so long to pick it up in the first place. It would be very confusing and difficult for him to learn two languages when he struggles with just one.
Due to his poor motor skills, Connor will probably never be able to respond in correct ASL or SEE. He currently has about 40 home signs (signs that he has made up) that he uses with motions that his arms and hands can do, but he's not able to do the complex moves with his fingers needed to sign accurately. I would expect we will eventually transfer him over to using a computer and picture communication to give him a way to speak with a wider vocabulary than he has the motor skills to sign. We will use any method possible to let him get across what he wants to say. However, we will still need to talk with him by sign. SEE gives him three different ways to understand what we're saying-- hearing, lip reading, and sign. Even without his hearing loss, Connor would probably have been ataxic (non-speaking) and we began looking into teaching him a sign system long before we knew he was HoH. I think it should be considered as an important tool for not just Deaf and HoH children, but those hearing children with cognitive and motor skill delays-- especially those who are completely non-verbal or severely language delayed.
If we adopt another child who is Deaf or HoH and who doesn't have any cognitive delays, we'd probably talk with them by SEE until they reach school age to give them a good base in structural English, and then switch to ASL unless we're talking with Connor at the same time. From the Deaf friends we've talked to, it's pretty easy to learn ASL after you know SEE as it's much more conceptual and many of the signs are the same. I think that each system of language has it's own benefits. It will depend entirely on the child and their individual needs.
Tuesday, December 9, 2008
Monday, December 8, 2008
Sunday, December 7, 2008
That Elmo doll is sort of creeping me out, though. Every time I go in Connor's room at night, I can see these huge white eyeballs staring at me...
Loki spent a good ten minutes this morning bathing my nativity set.
We have this ceramic nativity set, and he apparently thinks they taste good, because he has started licking them. I checked the package and there's no lead in them, so that's okay. He's on a good diet with adequate calcium, so it's not a diet deficiency. I'm not sure what he thinks he's doing.
In some sort of crazy biblically related coincidence, he especially likes the lamb. He traps it in between his paws and washes the whole thing. I'm debating on whether or not I'll put them up before we leave for Texas, because otherwise I'll probably come back to discover he's eaten baby Jesus.
Saturday, December 6, 2008
Connor had his gastric emptying study set for 11:00 in the morning. He's not allowed to eat for four hours before hand, so I needed to get him up bright and early to eat something before we left.
Now, I am a morning person. Connor evidently did not inherit that particular characteristic from me, because he it usually takes him a good half an hour to 45 minutes to warm up. First he lays in bed for a little while with his eyes closed and makes little noises, then he opens his eyes up, rolls onto his back, turns his lights on and keeps making little happy noises, and finally he decides it's really time to wake up and ups the volume, which is when I come and get him. Any interruption in this routine is a recipe for a good two or three hours of crabby, sleepy Connor.
I thought that maybe if I woke him up at 6:00, he'd be ready to eat by 6:20 or so, so I gently woke him up and stepped out of the room to let him start his wake up process. Silence. He immediately fell back asleep. I went back in, turned his lights on, turned his music on, gently woke him again, and waited. He rolled back over on his side immediately and fell back asleep. I picked him up out of bed, changed his diaper, got him dressed, gave him his medicine, and carried him into the living room. During the whole process, Connor had the huge pouty lip, was signing "no no no no no no!" and still had his eyes closed.
Lord knows what it's going to be like trying to wake this kid up when he's a teenager.
Connor decided that since I was rude enough to wake him up, he would refuse to eat any breakfast in retaliation. He clamped his lips together when I offered him his oatmeal and drank about three ounces out of his bottle before 7:00 rolled around and it was time to quit eating.
We left the house at 8:00 because I wanted to hit Pike Place Market before we needed to be at the hospital. It's a good thing I left early, because evidently all of the bad drivers decided it was grocery shopping day or something. After gassing up the car, it took us about an hour and 45 minutes to get to Seattle. Since we had to be at the hospital at 10:30 anyway, I decided to go to the market after Connor's appointment and drove through the city to Children's.
They were running late at the hospital, so I spent two hours in the waiting room with an increasingly hungry and crabby Connor. We finally got back into the room around 12:30, and our very nice nurse set everything up. First we gave Connor a bit of radioactive tracer in an oral syringe, and then he had some milk. He lunged for the bottle-- it was kind of funny. He was allowed to drink for about five minutes-- enough time for him to drink about three ounces. Then the little guy was strapped to a table and a camera the size of his entire body was positioned about three inches above him. It looked a little bit like he was in a Frankenstein movie. We had a television and some light toys, but the poor little guy was too small to see out from around the camera, so he had to stare at the gray plastic surface for an hour knowing his bottle was in the same room and totally inaccessible.
You can imagine how much fun this was for all parties involved.
After an hour we unstrapped him and the mysterious doctor (who we never saw) took a quick look at the pictures. Apparently there was still a bit of tracer in Connor's stomach, so we were told to come back in an hour and we would take some more pictures. Luckily Connor was allowed to eat.
Connor and I headed over to the crazy Barnes and Noble across the street and he scarfed down his bottle in the coffee shop. Afterwards we spent 15 minutes shopping, and I grabbed this version of The Night Before Christmas, which I like because the pictures are so high contrast-- good for Connor. It also has a really, really cool popup ending, which is probably not appropriate for kiddos who like to touch things as it's super fragile, but in Connor's case is fine. I also grabbed another book for myself-- The Good Husband of Zebra Drive by Alexander McCall Smith. If you are fond of in-depth characters, uplifting stories, and mysteries (an interesting combination) you will probably love The No. 1 Ladies' Detective Agency series, of which this book is the eighth. I highly recommend them.
We drove back across the street and were taken back into the Frankenstein room again around 3:00. Our nurse strapped Connor to the table again for more pictures-- thankfully for just a few minutes this time. Connor and I headed out the door at 3:30.
I wanted to go on a Christmas house tour with some of the girls that evening, so I skipped Pike Place and we headed for home. Alas, the house tour was not to be. It's normally about a 45 minute drive from Seattle to our house, but that night it took almost 2 and a half hours. It was stop-and-go traffic literally the entire way. About an hour into the drive, Connor decided he'd had enough and pitched a huge screaming fit. I pulled into the drive way already ten minutes late for the house tour, handed Connor off to Jer, threw the car in gear and drove to where I thought the reception was meeting, neglecting to check the directions. I went to the totally wrong place and missed the tour.
Jer was really sweet and got me some ice cream when I returned, totally defeated, twenty minutes after I'd left the house. He gave me a back massage, took care of the little guy, and made me some tea while I read my new book, so even though it was a lousy day, it ended on a pretty good note.
Jer's pretty good at turning days around like that.
Wednesday, December 3, 2008
We took a quick trip to the grocery store, but otherwise it was an at-home day until the evening. The cashier at the grocery store made a comment about how it was great that I was signing, but that I didn't need to "do it with her" because I could understand what she was saying. I didn't want to get into a big explanation in the grocery store line, but this has come up before, so I'll post my reasons here.
I know it looks kind of strange that I sign to hearing people. I know they can understand what I'm saying. I'm not signing for them. I'm signing so that Connor can understand at least half the conversation. If you think about it for a minute, it makes perfect sense. Those of you with kids probably have noticed that you have to watch what you are saying around them because even if it doesn't look like it, they are listening to your conversations with others. They learn all sorts of interesting words in these conversations-- oftentimes words you probably wish they hadn't. Nevertheless, every time you speak, they are subconciously learning rules about the English language.
Now, imagine that your child is Hard of Hearing or Deaf. If you are speaking to someone in the noisy grocery store and your faces are turned away from that child, they get nothing. Either they can't understand what you are saying at all, or what they are getting is full of holes and misheard words. If your child's only way to acquire language is when someone is speaking directly to them, they are going to miss out on a lot of learning opportunities.
That's why I try and use Signed Exact English whenever I'm speaking to anyone and I'm with Connor. It may be a little bit slower sometimes, and I'm not fast enough to interpret what the other person is saying for Connor yet, but he is getting at least half of the conversation, which is better than nothing. Connor has enough trouble as it is acquiring new language without adding in the HoH issue.
I'll get off my soap box now.
Tuesday, December 2, 2008
And here's a blood glucose monitor:
So now apparently I look like I do undercover work for the ADA. I just need a trench coat and a fedora.
At any rate, Connor had a great PT and ST session. He is starting to recognize pictures as representations of objects, which is a huge step for him. Once he understands that pictures on cards can be symbols for things he wants, we can begin using a picture communication system for him-- possibly a modified version of PECS. He's already making choices between two pictures. He also did a great job standing up to play. We won't see Julie and Laura again until after Christmas as we'll be leaving for Texas soon-- it's crazy to think that our trip is that close!
When we come back from our vacation, Julie and Laura will begin administering the Bayley Scale of Infant Development to Connor so that we'll have that data for when he starts school in April. I'm glad that they will be giving the test to Connor so we'll have an additional set of data other than what the school's assessment will show. This is because Connor refuses to cooperate with developmental exams given by people he doesn't know. Connor reacts to strangers giving him developmental assessments like they are terrorists trying to get him to give up government secrets. In his case, name, rank and serial number are all represented by the sign "no," and that is the only thing the therapist will see him do during our two hour time together.
Therapist: Connor, can you see this ring?
Therapist: Let's touch the ring. Can you touch this ring?
What color is this ring?
And that's if Connor's in a good mood. If he's in a bad mood, he'll stare at a fixed point about three feet to the left of the therapist and pretend she doesn't exist. If she tries to move into his line of sight, he'll look in the other direction. He was in a bad mood at his last assessment, and they placed his cognitive level at three months.
For the most part, I could care less about what the developmental tests say. Anybody who spends ten minutes with Connor in a setting he's comfortable with knows that he's got a cognitive level way above three months. If anything, it's nice that they assess him that way because then we are certain we can get all the services he needs without a fuss. The problem with this being the only assessment the school sees, however, is that we want Connor to split his time between the developmental preschool and the Deaf/HoH preschool, and if he's assessed too low, than there's a chance they won't let him attend the Deaf preschool. So we'd really like to have some data that shows he will benefit from being in a school with Deaf peers who are not developmentally delayed.
Sunday, November 30, 2008
This morning was my "sleep-in" morning. On weekends, Jer and I usually alternate who gets to sleep in on what day. When I'm going to a church, Sundays automatically become Jer's sleep-in day, but since I'm between churches right now, we usually do some half-awake version of Rock, Paper, Scissors on Saturdays to see who gets the first sleep-in morning. I'm having a hard time finding a church that has a good balance of services for Connor and that I also feel comfortable with. Connor and I are Episcopalian, and it seems that all the Deaf churches I've found are of the Baptist megachurch variety. There's nothing wrong with that-- it's just not the way I like to worship. I'm sure I'll stumble on one eventually.
So anyway, I slept in until almost ten o'clock, and then had a cup of tea and a nice chat on the phone with my mother. Then it was off to the Olympia Farmer's Market. Since we aren't getting a Christmas tree this year, I have this overwhelming compulsion to fill my house with things that at least make it smell like Christmas. I picked up a very pretty Christmas wreath and some root vegetables (for making turkey carcass soup) and we headed back home.
The wreath looked very, very nice on my dining room table. I got to keep it on my dining room table for all of about five minutes before I had to relegate it to the back bedroom behind closed doors, which is where all of my plants and flowers end up. This is because my cat is insane.
We have two cats: Cricket and Loki. Cricket is about four and she rules the roost around here. She's way more intelligent and also has way more good sense. That's why this post is not about her. Loki is about two now, and he's named for the Norse God of death and destruction; a name that he has earned many times over by now. Having Loki around the house is kind of like having an extremely stupid dog. He's really overenthusiastic about everything, sticks his nose everywhere, and is forever trying to eat things that don't look even remotely edible. If he thinks that you aren't paying enough attention to him, he will come up alongside you, bend down, wiggle his rear in the air, and spring up in the air to chest height just in front of you before dashing off down the hallway. It's like living with a furry, demented jack-in-the-box. He found my Christmas wreath in about five seconds and proceeded to try eating the pine needles. When he didn't find them appetizing, he decided that maybe the branches would make fun toys and started ripping them out of the wreath with his teeth.
Loki considers himself the guard of the household. Whenever the doorbell rings, this cat actually growls and races towards the door, just on the off chance a mass murderer is on the porch who has a fondness for petting cats. This cat pursues petting like some sort of guided missile. All humans are his friends, and he would never dream of hurting anybody. He has only two enemies. The first is our neighbor's cat. Our neighbors let their little grey cat roam the neighborhood, and she picked up this charming habit of capturing and killing the birds at my bird feeder and then leaving their heads on the porch for me to find. This cat would oftentimes come up to the window, where all 15 pounds of infuriated Loki bristled in outrage, and casually put her nose up to the screen, as if to say "Nah nah nah nah nah." Well, last summer the cat tried doing this when the window was open, and was unpleasantly surprised when Loki crashed through the screen and tore off after the bewildered animal. I was sitting in the office, happily typing away, and glanced out the window to see the grey cat frantically sprinting for her house, while behind her was a giant brown tabby blur that looked suspiciously familiar. By the time I managed to make my way outside they were halfway down the block. When I finally caught up with them Loki had this cat cornered under a bush and was reading her the riot act. Since then, while the grey cat still kills and eats my birds, she no longer flaunts it, but does it surreptitiously while throwing nervous glances at my windows.
Loki's other enemy, his true arch nemesis, resides within the house and is the constant bane of his existence. This enemy is my printer. Loki is convinced that my printer is the Antichrist.
He's already vanquished one version of this foe. We made the mistake of keeping the last printer up on the desk, and Loki finally killed it by shoving it off the desk and onto the floor, where it lay on its back, its guts exposed, emitting its last evil dying squeals until Loki eviscerated it just as I came back from the bathroom. But the new replacement, the HP Deskjet F380 All-in-One, which is apparently the name The Beast goes by these days, now squats on the floor like some nefarious toad and has thus far thwarted all of Loki's attempts to do away with it. It doesn't help that the people in the house Loki is attempting to protect seem to have been taken in by its innocent looking facade and actually try to protect it from all of his attacks.
Loki has developed a battle strategy for this printer. Whenever he hears it begin to contemplate some new terrible deed, such as printing out Mapquest Directions of Inequity or scanning Photos of Despair, he will drop whatever he's doing and sprint for the office. He then skids to a stop about two feet away from the printer, hunkers down behind my chair leg in an effort to render himself invisible, and squints. This is because he knows that I am armed with a spray bottle and, in some misguided attempt to defend the Incarnation of All Evil, will spray him with it. Loki then begins inching forward, paw by paw, in an attempt to get as close to the printer as possible before the dreaded spray gun emerges. Every time I put my hand near the spray bottle, he freezes and squints again. Finally, when he deems I'm not paying attention, he makes a final charge for the printer, claws extended, receives a face full of water, and backpedals abruptly before stalking off to the living room to nurse his injured pride and plot revenge.
I think he must have consulted with Cricket, because lately he's become smarter and is trying to assassinate the printer by stealth. He managed to rip the paper tray off the printer and so we are now unable to close it off from his grubby little paws. I tried to print something the other day and the machine began making this horrible noise. Loki was suspiciously nowhere in sight. I took the printer apart and extracted four of Connor's oral medication syringes, a pencil, a baby sock, and a catnip mouse from the interior of the machine.
I managed to get the thing working again, but I'm keeping my eye out for a newer model. Maybe they make something with a nice Kevlar exterior.
Saturday, November 29, 2008
Wednesday, November 26, 2008
This is the Oticon Tego. Connor has the "sunset orange" variety-- the third from the left. It goes with most of his outfits, and as an added bonus, is easy to find in the dark.
Connor's new FM system, also by Oticon, is just as cool. It's not a day-glo color-- it's silver-- but it does include one of those little lapel mikes for me like all the news anchors wear. I wonder if people will start thinking I'm surreptitiously recording them in the grocery store.
For those of you not familiar with them, an FM system consists of three major parts: the broadcaster, the reciever, and the boot. Two of them fit onto Connor's hearing aid, and one of them I wear. I wear a microphone that hooks into the broadcaster. Connor wears the wireless reciever on his hearing aid, along with an "FM Boot" that connects his hearing aid to the reciever. Basically, when I talk, the microphone picks up my voice and transmits it through the broadcastor directly to his the reciever, which transmits the sound through the boot and into his hearing aid, making my voice louder. This is great for situations where there is a lot of background noise, like the grocery store or the mall, or for places where Connor can't see my face or hands, like in the car. It will also be pretty essential for school, because the teacher will probably be moving around the room and there will be a lot of distractions.
So that was the good stuff for today. Let's move on to the bad stuff.
Apparently this morning, with all the craziness of Connor waking up early and being crabby and phone calls and what not, I forgot to give Connor two of his medications. This is the first time I've ever forgotten to give Connor a dose of anything, so I have a pretty good track record. He got his aspirin and his prevacid, which are both pills. I left his Reglan and his Keppra sitting on the counter and didn't discover this until this evening.
If we skip a dose of his Reglan, it's not a huge problem. His Reglan is for his acid reflux, and skipping one dose is probably not going to be a huge issue. His Keppra, however, is for his seizures. So I skipped a dose of his seizure med.
And this afternoon, he had a seizure.
This is his first one since he started on the Keppra. We called the doctor, adjusted his medication up, and were told to keep a close eye on him. It wasn't until hours later that I discovered his medication, still sitting on the table.
I now feel horribly, horribly guilty. Connor's seizures are a big deal, and by not giving him his medication, I may have actually caused one. Now I don't know if he needed his medication adjusted or not-- looking back, he might have had a seizure Monday as well, but since it was in the middle of the night and I only saw the super crabby aftermath, I'm not sure if he actually had one or if he just had a bad dream. At any rate, I'm going to have nightmares about this for a long, long time.
So all in all, a crazy, nerve wracking day.
Tuesday, November 25, 2008
Because I am a scheduling fiend.
All of those hours I've spent with my ear glued to the phone, killing brain cells by listening to elevator music while on hold with appointment lines over the past few years have apparently paid off, because I can now work the hospital's systems like a pro. I managed to, within a one hour time period, schedule SIX of Connor's eight appointments in the appropriate order, and the latest one is-- get this-- January 20th. Not only that, but the only reason I couldn't get all of them into December is that we'll be gone for the entire second half of the month.
Here's Connor's schedule.
Friday November 28th-- that's THIS FRIDAY-- we have an upper GI study. The thought of getting any outpatient appointment at a major Children's hospital within three days makes me dance around the room emitting high pitched squealing noises.
December 4th is Connor's gastric emptying study.
December 15th, the day before we leave for Texas, Connor has his swallow study.
January 13th Connor goes in for his GI appointment.
January 20th Connor has his neurology appointment.
That leaves just cardio, who will be calling me back by Friday with an appointment time, and the last appointment with the general surgeon before Connor goes in.
So what if I forgot to stick the memory card in my camera at Jer's Order of The Spur ceremony and the camera started emiting very loud beeping noises and stopped taking pictures right before Jer stepped onto the stage? So what if I also forgot that I still had my giant fuzzy day-glo color striped toe-socks on from Connor's therapy session under my nice outfit and I sat in the front row? At least I can schedule six appointments with six different offices in the time between Connor's nutrition appointment today and Jer's ceremony, while feeding the little guy with one hand and typing e-mails with the other.
I am woman, hear me roar.
Monday, November 24, 2008
Here's a quick outline of the tests we'll be doing and doctors we'll be seeing before the surgery:
Videofluoroscopic Swallowing Study: This will be done to see if Connor is aspirating liquids or foods when he swallows.
Gastric Emptying Scan: This will be done to see whether or not Connor's food is staying too long in his stomach.
Upper Gastrointestinal Series: This will be done to see how food moves through Connor's system and where his intestines, stomach etc are placed.
Gastroenterology: We're going to throw yet another GI doc into the mix to schedule all of the above studies. We'll also be asking if it will be possible to do a study where we try and feed Connor with an NG tube at night to see if he doesn't need the other two surgeries-- just the g tube. I am NOT looking forward to attempting to put an NG tube down this kid and keep it in a few nights in a row.
Cardiology: We'll be seeing Connor's cardiologist to assure that his heart looks good and his heart condition will not have an effect on his surgery.
Neurology: Connor will be unable to take his usual medication for his seizures since it can't be given by IV, so we'll have to find another method of treatment during his surgery and recovery. Otherwise we could end up with breakthrough seizures, which no one wants.
Anesthesiology: We'll be headed here to let them know all of the crazy things Connor has going on so they can be prepared in case something happens during surgery.
Once all of this is finished, THEN we will head back to the General Surgeon with all of the results from the tests and other doctors' appointments, and THEN we will schedule the surgery at the meeting.
When the surgery takes place will depend entirely on how fast I can get these eight appointments taken care of. We have a very specific timeline, since we'll be in Texas the last half of December, Jer will be gone for training for a month and a half in early spring, and he will be leaving for Iraq in the summer. I'm not sure that I'll be able to cram all these appointments in before February, so it looks like late March or early April may be the time for us. I'm really hoping to get it done before April, which is when he starts preschool, but we'll just have to see what happens.
This is why Connor is my full-time job, people.
Sunday, November 23, 2008
Then I ran by the house, grabbed Connor so Jer could start packing for his upcoming Spur Ride, and drove into Puyallup to see Nicole off. Nicole crammed about 10 billion baby items into my car to pass along to a certain pregnant friend who shall go unnamed on here until she's ready to share with the entire world. I dropped the items off at my friend's house, hit the grocery store, and came home to cook dinner. All in all it was a pretty laid back, uneventful day.
One big event I should mention, though-- Connor did his first standing with just us holding his hands for balance! Yay Big Boy Connor!!!!
Saturday, November 22, 2008
First, I talked with Connor's speech therapist, and laid out my case for why I thought a g-tube would be appropriate for Connor. She agreed with me and wrote a note to Connor's pediatrician.
Next, I had an appointment with Connor's pediatrician, in which I laid out my case for why I thought a g-tube would probably be appropriate. He agreed with me, but wanted an appointment with our nutritionist before he would consent to the referral.
Then, we had an appointment with Connor's nutritionist, in which I laid out my case for why I thought a g-tube would be appropriate again. She agreed with me and wrote out a referral.
Then, we had an appointment with Connor's GI doc, where I laid out my case for why I thought a g-tube would be appropriate for Connor yet again. The GI doc agreed with me, thought a Nissan would also be appropriate, and agreed that Children's would be the best place to do the surgery. He referred me there, which brings us up to Monday.
On Monday, we'll have an initial appointment with Connor's new GI doc, where I will lay out my case for a g-tube for the fifth time. He will probably want to do a few tests to determine whether or not he thinks a Nissan surgery is appropriate, which will be another couple of appointments. THEN maybe we'll get to schedule the actual surgery date.
Overall it was an interesting week. Connor has been really enjoying working on standing-- we've done some standing time every day. He gets really, really excited about being up on his feet, and he'll stand until his legs start shaking. You have to force him to take breaks.
Monday I completely forgot about PT and ST until Laura called me. We rushed down there 20 minutes late and weren't able to see Julie, but Laura managed to fit us in. My brain malfunctioned or something. I don't know what happened. At any rate, Connor got to stand on a swing, which was apparently the most exciting thing ever to happen in the history of the universe.
Tuesday we had the big Let's Talk About Deployment meeting, in which we got Jer's tentative schedule for deployment and all received free DVDs so we could discuss deployment with our kids. I watched this DVD Wednesday morning, which was a bad idea as Wednesday was also the start of That Time of The Month and the DVD involved Elmo's Daddy having to go away for a long time and all the Sesame Street characters singing about it and crying. This is not a good video to watch at a time when I tear up at food labels with cute babies on them, people.
Wednesday Barbara, Connor's Special Education teacher, came over and Connor played in the corn meal bin-- an activity he generally reacts to like I'm attempting to get him to play in broken glass. Connor is convinced that touching things, especially things with gritty, slimy, or sticky textures, could prove to be lethal, and is at any rate an extremely hazardous activity. We make him do it anyway, and I'm sure he probably thinks we're mean and horrible, but tough cookies. You know he's been having a great time when I tell him that it's time for Barbara to leave and he starts laughing and clapping his hands. Poor Barbara.
Thursday we saw Patti, Connor's Family Conversations teacher in the morning, and halfway through the lesson Gloria stopped by with baby E so I could do a little babysitting for her. Baby E is seriously cute-- she's eight weeks old and has these little rolls of fat all over her body-- and Connor was pretty okay with her until I picked her up. Then we had issues. What was HIS mommy doing holding that STRANGER BABY? Obviously E was muscling in on his territory. After some negotiations it was finally decided that I could hold E as long as Connor got a constant stream of praise about how great he was doing and what a big boy he was. I had one tense moment when Connor was on the potty, E started crying and the phone rang, but for the most part things went well. The best part was when Connor went down for a nap, E fell asleep on my shoulder, and I got to sit, read a book, drink some tea, and snuggle the baby. Ah, bliss!
Katie, Connor's Deaf Mentor, showed up at about the same time Gloria did to pick up the little one, and we had a good session. Anna stopped by and picked up the next book in the Twilight series by Stephanie Meyer. Then Kami, a vision therapist, came over and did an evaluation on Connor. She wants to send him to a developmental optometrist. I'm not convinced we need to add yet another specialist to Connor's list (which currently stands at 10 doctors and 4 therapists) and I'm not convinced that a developmental optometrist would be able to do anything for Connor since his issues are nerve-related and so I don't think any amount of muscular exercises are going to do a thing for him, but we'll see. At any rate, I don't think that appointment is exactly at the top of my priority list right now.
Friday morning Connor had his Family Conversations play group, and I got to take a much needed break to hang out with all the other parents of the Deaf and HoH kids in the program while the therapists work with the children. This week Ann shared a very moving and private story I'm not going to repeat here about her son, which, since it's That Time of The Month, not only made me tear up, but when it got to be my time to share about Connor, I totally lost it and started bawling so hard I pretty sure I was nearly impossible to understand. I'm all about sharing our feelings and all of that, but I really wish we'd picked a week to do it when my hormones were not totally ruling my mind. Oh well. At any rate, I probably shared way more information about Connor and his medical conditions than anyone was comfortable with, and then afterwards everybody had to start taking me aside and giving me little pep talks about what a strong person I am and how lucky Connor is to have me while patting me on the back, which is what usually happens in situations like these. I know people mean well, but I've never been one to enjoy compliments, and I really, really hate those speeches, which is why I usually don't share that sort of stuff about Connor in the first place. Hopefully the two weeks of Thanksgiving break will give people a chance to sort of forget about all of the awkwardness and start treating me like one of the girls again instead of some sort of martyr or saint. Blech.
Gloria, Anna and I hit the movie theaters on Friday night to watch Twilight. I can understand why they thought it would be a good idea to make this movie, but here's the deal. What do you get when you take a couple of extremely introverted characters and a plot that relies heavily on internal dialogue and throw the whole thing up on the big screen? You get 122 minutes of awkward silence, that's what you get. The movie was horrible. We laughed in all the wrong places. Then we went out for ice cream and listened to the Cold Stone Creamery girls ring a cow bell and sing a little song for every group of adolescent males that came into the store. Teenage mating rituals are bizarre to behold.
Anna and I headed up to Pike Place Market this morning for some Christmas shopping, and for a Saturday, it was dead. The lady behind the counter at Market Spice said that their sales are down by 30%. It was sort of a shocker-- I forget we're in a recession because we aren't really worried about Jer's job going anywhere and we haven't had to change the way we live at all. It was kind of a sobering reminder that things aren't going so well for a lot of folks.
We have a busy week coming up. Connor has that GI appointment on Monday. On Tuesday, we see Connor's nutritionist and will be finished with that just in time to hit Jeremy's Spur Ride ceremony http://en.wikipedia.org/wiki/Order_of_the_Spur. On Wednesday, Connor gets his FM system. (Here's a link explaining FM systems for those of you not familiar with them: http://www.babyhearing.org/HearingAmplification/AidChoices/FMSystem.asp) Thursday is Thanksgiving. Hopefully we'll be able to use the weekend to sort of kick back and relax after all of the craziness.
Tuesday, November 4, 2008
I can't emphasize enough how important this program is to our family. I intend to get more information and to begin writing letters to make our government aware of this problem. It is essential that this program continue. I'll let you all know as I get more information.
So after a stop at the office, we headed down to Anna's to pick her up. We headed off and ran some errands, grabbed a quick lunch, and then went to Connor's therapy. Connor used his braces to stand up on a swing-- fun times! Julie made us up some sign cards to use with Connor's switches, which is exciting.
Then it was off to Ross for some shoe shopping, and then to the bookstore so Connor could have a snack. Of course, I was unable to resist picking up a couple of books-- the next one in the Amelia Peabody series by Elizabeth Peters for me (that woman writes addictive books) and Todd Parr's It's Okay To Be Different for Connor. It's a fantastic book for talking about tolerance and differences.
We're off to the GI doc's this afternoon for an initial appointment about Connor's g-tube. I'll let ya'll know how it goes!
Sunday, November 2, 2008
I give myself two weeks before I give up.
Connor had a good Halloween! We sat at the door, passed out candy, and listened to spooky old radio stories. Good times! Of course, since it was kind of foggy we didn't get as many kids as last year, so now I have half a basket of candy to eat. Of course they picked out all the Twix bars, dang it. Oh well.
Anyway, things have been kind of crazy around here lately, so let me fill everyone in on the latest. Jer's unit has received its tentative deployment orders-- e-mail me if you want to know more about that. It' s nowhere in the immediate future, for which I am grateful. I'm really, REALLY not looking forward to his leaving, but it's one of those necessary evils that comes with military life. We'll deal with it when we get there.
Connor has been doing pretty well over the last few months. He's signing more than ever and his receptive language skills have dramatically increased. He'll follow simple commands, help with things like putting his clothes on, and is starting to lip read. I think a big part of his improvement is due to our friends Katy and Kevin. Katy is our Deaf Mentor and also Connor's respite care worker, and she and Kevin have a son about Connor's age who is a CODA (Child of Deaf Adults). Connor and their son play together and it's great for him to have that interaction. Also Katy has a service dog, named Rowdy, who Connor is in LOVE with. It's really cute to watch them together, and he never wants to leave when it's time to go. I think once we are in a house of our own a few years down the road, a service dog will be in our future.
Our latest news on the medical front is that Connor will be getting a gastric feeding tube sometime over the winter. For those of you not familiar with a g-tube; it's a port that will go directly to his stomach so that we can give him nutrition even if he refuses to take it by mouth. Here's a good website that explains them: http://surgery.med.umich.edu/pediatric/clinical/physician_content/procedures/gastronomy_tube.shtml Whenever he gets sick, he just stops eating-- not a good situation for a kid as tiny as he is. We're hoping we'll be able to feed him as much during the day by mouth as he will take, and then feed him the rest at night while he is sleeping. I'll keep you posted as we set a surgery date.
Jer and I are taking Signed Exact English (SEE) classes and slowly getting better at signing. We use SEE with Connor instead of ASL because it gives Connor three ways to understand what we are saying-- his residual hearing, lip reading, and sign. Here's a website that explains the difference between ASL and SEE: http://www.listen-up.org/sign2.htm
I've become more and more fascinated with signing-- ASL is a beautiful language and in many ways is much more expressive than English. I've also found that signing is very convenient in the hearing world-- Jer and I can talk to Connor and each other in meetings, church, noisy rooms etc without disturbing anyone else or having to yell. Once I become fluent in SEE, I plan to begin ASL classes. I'd eventually like to become a teacher and teach English to Deaf and Hard of Hearing (HoH) students and ASL to hearing kids. Deaf and HoH children often times have a lot of difficulty with English and there is a big shortage of teachers, so it would be great to be able to make a difference in these kid's lives. ASL is a totally separate language from English-- the grammer is based more on French-- so imagine if you will growing up in a culture where you speak and understand Spanish but have to read and write in German and you'll have an idea of the difficulties these kids face.
Jer and I have decided, by the way, that since we are going to become fluent in signing and already have one child who is HoH, we would like to adopt another Deaf or HoH child, perhaps with some other special needs as well. We want to adopt a slightly older child, between the ages of 1-4, so that our kids will be close in age. We plan to begin the adoption process when Jer returns from his deployment sometime in 2010 and are considering either Korea or Ethiopia. We'll keep you posted!
We'll be coming back to Texas for Christmas! This will be the last Christmas we are back before Jer deploys, so we'd love to see everyone who can make a trip to the Dallas area. Connor and I will be in town from December 16th to January 6th, and Jer will be in town from the 20th of December to January 1st. Drop us a line if you want to get together!
Thursday, May 8, 2008
So here's a little background info, and tomorrow we'll plunge right in.
I am Connor's mom.
So far, so good. Maybe this blogging stuff isn't so hard, right?
Anyway, Connor, in addition to being the cutest known being currently in existence, is also a special needs child. He was born with a genetic issue that, so far as we know, he's the only one in the world with, and has about 25 birth defects as a result. I spend a whole lot of time in doctor's offices as a result.
I'm also Jeremy's wife.
Jeremy is the awesome guy I was lucky enough to marry. In addition to making me the happiest woman on earth, he also made me a military spouse.
This will be a record of the daily craziness that is our lives.