Tuesday, March 31, 2009

As Time Goes By...

Tomorrow, Connor will be three years old.

How is this possible? It seems like just yesterday I held him in my arms for the first time. Now here he is, about to go off to preschool. I can't pretend he's a baby any more.













Where did the time go?
~Jess














Monday, March 30, 2009

Medical Monday: Aqueductal Stenosis

It's that time again: Medical Monday! I blog each Monday about a different condition Connor has and then post a link to it on the side bar as I go. This way people can get a better idea of what Connor deals with on a daily basis and his family and friends can understand what I'm saying when I call and spout ridiculously long medical terms.

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

Today's topic is aqueductal stenosis.
So in addition to your brain having that thick skull for protection, it's got this neat protection system to cushion it from damage-- kind of like a miniature Zorb ball. Basically, it produces a fluid, called cerebrospinal fluid (CSF), and the brain then "floats" in this fluid inside the skull, providing a buffer against damage-- in other words, preventing your brain from rattling around like a BB in a tin can.

CSF also brings nutrients to the brain and takes waste products away from it. The brain is constantly producing it-- around 500 ml a day, or a little less than 17 ounces. That's a lot of fluid, and it won't all fit in your skull. Instead, it constantly drains out a channel inside your brain and down into your spinal cord.

CSF is produced towards the center of your brain, in an area called the choroid plexus. It then flows into the third ventricle, from there down a little channel into the fourth ventricle, and then it has two channels that allow it to flow around the outside of the brain. Finally the fluid flows down the spinal cord. Here's a handy video to show what this looks like.

Now, the little passage way between the third and fourth ventricle is called the aqueduct of Sylvius, a name that sounds like it should refer to some river in Italy. This passageway is already a little bit narrow. In Connor's case, his passageway is stenotic-- too narrow. This could potentially cause him problems, because it's more likely to become blocked by swelling or a blood clot.

What happens if the aqueduct of Sylvius is blocked? Remember, all of the CSF is being produced near the third ventricle, and it is then flowing down the aqueduct and into all the other regions of the brain. Well, if the aqueduct is blocked, the brain continues to produce CSF, but it has nowhere to go. The third ventricle and the lateral ventricle above it fill up, and then the pressure begins to push the brain matter that forms the walls of the ventricle out. The problem is that the brain is surrounded by the skull, which isn't going to do a whole lot of stretching and giving. It can grow a little bit, but not enough. The brain ends up squeezed against the walls of the skull, and if the pressure isn't relieved quickly, you end up with, to use a technical term, mushed brain. This is not good.

So what can doctors do for aqueductal stenosis? Well, right now they don't have to do anything; Connor's intracranial pressure is normal-- in other words, he is not currently experiencing any brain mushing-- and so he's not having any problems with draining his CSF right now. If it were to become a problem in the future, then the doctors could install a shunt. This is basically a little pipe that would be inserted into his third ventricle and then down into his spine to drain the excess fluid off.

Right now, however, Connor isn't experiencing any issues from his aqueductal stenosis, and we're keeping our fingers crossed that it will stay that way. He has a neurologist who follows him, and once a year or so he has an MRI or a CT scan to see how things look in there. Other than that, it hasn't affected him in any way.

Here's some information about CSF and aqueductal stenosis:


~Jess








Sunday, March 29, 2009

Loki The Epicurean

Last night I got fourteen hours of sleep.

I feel much refreshed.

Connor is still rather under the weather, so we stuck close to home today. The cats thought this was great, as they had a number of issues they needed to bring to our attention. Loki is currently very concerned with the fact that I picked up the chicken flavored cat food and not the salmon. I alternate, as Cricket enjoys the chicken and Loki prefers seafood. Loki keeps going over to the completely full food bowl, meowing pathetically, and scratching at the cat food bag. I think he hopes that if he keeps asking, the bag will magically dispense his favorite flavor.

Loki also discovered Connor's giant balloon yesterday. In his endless quest to eat things Not Meant for Consumption, he chewed all the paper ribbon off the sides of it. Then he threw up a giant ball of ribbon and chicken cat food all over the middle of Connor's floor, which I discovered with my bare feet at three in the morning when I went in to turn off Connor's pump. While I am glad that the ribbon is out of Loki's system and not shredding his intestines or something, I kind of wish he had chosen a more convenient place to get rid of it. Or, baring that, that he had waited until it was Jeremy's turn to tend to Connor. Oh well.

Crazy cat.


~Jess

Saturday, March 28, 2009

We're Home

Connor was discharged from the hospital about half an hour ago, so we're back home. His cultures all came back negative, so thankfully RSV or some sort of resistant flu bug are out of the picture. While we're still waiting for the urinary tract infection culture to come back, signs point to this probably being an upper respiratory infection-- essentially a nasty cold.

His fever is down, and while he's definitely not feeling chipper, he's breathing without any trouble and he's eating some, which is a really good sign. We did find out he was exposed to chicken pox yesterday, so now we're in the waiting period for that, but otherwise we'll just keep giving him Tylenol and hopefully he'll be back to his usual happy self in a couple of days.

In the meantime, we're going to just stay away from people, as this is not something we particularly want to pass along to anyone else, and we'll try to catch up on our sleep. Jer is on leave this week, so we plan to do a whole lot of absolutely nothing.

Thanks for all the well wishes. We're glad to be home.

~Jess

In Which I Call 911 Yet Again

Connor is back in the hospital right now, folks.

This has not been the best of weeks.

We woke up to him coughing last night about midnight, went into his room and could feel the heat radiating off of him. We took his temperature and it read 104.1. About that time he started having trouble breathing, turning blue, and making some rhythmic jerking movements. We called 911. By the time the ambulance got there he had stopped, was breathing easier, and had fallen asleep, but they still didn't like the way he was breathing, so in we went.

So here we are, seven hours later. Connor's temperature is under control-- they've got it down to 99.9, and he's breathing sounds better. They suspect that he had a febrile seizure-- he's had one in the past-- and want to monitor him to make sure he doesn't have another high fever spike that could trigger another one. They are pretty sure he doesn't have an infection in his incision or sepsis, thank God, but they're concerned that it might be some sort of flu or possibly RSV or another infectious disease, so all of the nurses are suited up and he's basically under quarantine. They thought it best to keep him under observation for a while, so hopefully we'll be released some time this afternoon if we don't have any more adventures. Right now he seems to be fine, if crabby, irritable, and running a low grade fever.

Jer's doing the first shift at the hospital, and I am now going to bed, as I have had two hours of sleep. I'll keep you all updated on Connor and how he's doing.

~Jess

Friday, March 27, 2009

Done In

Today was a better, but still exhausting day. We had our last Family Conversations playgroup, a trip to Olympia, a date for me and Jeremy, and said goodbye to relatives who were visiting this week. I'm kind of copping out of this entry by keeping it super short, but we got about two and a half hours of sleep last night due to Connor's pain medication wearing off at an inopportune time, and I'm so exhausted my vision is blurring. I'll write more tomorrow about what happened today, but for now, I'm off to bed.

~Jess

Thursday, March 26, 2009

Bad News: IEP Results

So we didn't sign the IEP.

I don't want to get into too many specifics right now, but essentially the IEP confirmed the worse-case scenario I'd hoped we wouldn't get into. We disagreed on some very major points, points important enough that there was absolutely no way we'd be signing the IEP as it is written. Thus we will be going to another meeting in a couple of weeks, and depending on that meeting will be attending mediation and if that doesn't work out, going through due process.

I have to say that I'm really, really disappointed, and actually very angry as well. I had high hopes for this meeting. Connor turns three next week, and he won't be starting school because we couldn't come to an agreement. I'm absolutely not willing to forgo the services that I know Connor needs, and will do everything in my power to assure that he receives those services. All the same, it's very frustrating to know that I'll be starting a long, drawn out process that never should have happened in the first place, and in the meantime Connor will be waiting in limbo for us to hash it all out.

To add insult to injury, Connor's insurance just denied his prescription for Entereal Pediasure, as they say that the diagnoses of his genetic condition, growth restriction, GERD, and failure-to-thrive aren't reason enough to make supplementary feeding necessary. I spent the morning on the phone with the insurance company, and we'll be starting the appeals process with that whole mess, too.

Let's just say it hasn't been the best of days.


~Jess

Wednesday, March 25, 2009

Burned Out

We all had a pretty quiet day today. Connor seemed to feel a little better, though he still doesn't want to drink much of anything (he only took seven ounces today, and three of those were by syringe as he'll swallow but doesn't want to suck) and he's slept a lot, but hopefully he's on the mend. His throat is still very, very sore, and so he's kind of hoarse. He's felt around his g-tube, and he knows it's there, but thankfully he's left it alone. The incision site looks good and it's not leaking at all, so that's a happy thing.

I went out this morning and bought him a ridiculous number of clothes, as the Babies-R-Us was having a big sale and we needed outfits he'd be able to wear to school without exposing his g-tube. I got two pairs of overalls, several zip-up footie pajamas that we'll cut a little hole in for feeding at night, a few onsie shirts, and some one piece outfits for the daytime. I also bought the kid six or seven new videos from Half Price Books, and a new toy. I might be feeling just a tad bit guilty for putting him through all this, despite how much I tell myself that it was necessary, beneficial, etc. It's hard to make myself remember that when it's obvious he feels terrible.

I don't think Jer and I realized how exhausted we both were until this afternoon, when we put Connor down for a nap and promptly crashed ourselves. I'm not sure how long we slept, but I know for me it was at least four hours. Tomorrow is Connor's IEP, so with any luck we won't be so drained. I'll let you all know how it goes.


~Jess

Tuesday, March 24, 2009

We're Home!

We're home from the hospital!

I'll give you a rundown of the past couple of days, as I see that Jer was a little skimpy on the details. We got a phone call yesterday morning at about 8:00 letting us know that there'd been a cancellation and our surgery time had been bumped up so we should bring Connor in as soon as we could. We threw ourselves and Connor into the car twenty minutes later, and were at the hospital by about 9:30. Jer's mom met us at the hospital armed with a balloon the size of Connor's entire body, and so we paraded back into surgical services. In the surgical prep area we stripped Connor and Monkey down and they both received ankle bands, a wash-up and gowns. Monkey's gown was made out of a paper towel and not nearly as nice as Connor's, but since I have yet to find enough free time to sew hospital gowns for a stuffed animal, we had to improvise. Then Connor and Monkey disappeared into the surgical area and we headed off to eat some lunch and wait for the doctor to page us and tell us the surgery was over.
Connor, by the way, was not upset about the upcoming surgery. Connor was upset that he was wearing shoes but no pants. We'd put the shoes back on to keep his feet warm, and this was apparently Against The Rules. "Sad, pants! Sad! Please, pants, please!" he kept signing. Also he didn't like the nurse's paper hat. Given some of the wardrobe choices I've made in the past, I'm not sure how I managed to raise a fashion critic. Maybe it skips generations or something.

After about two hours they paged us to tell us the surgery was over. The doctor sat down with us in one of the little rooms off the surgical unit and told us that everything had gone very well, though they'd hit a couple of snags. The first was that they'd had a little trouble intubating him-- it took a couple of tries, so his throat was probably going to be pretty sore. The second thing was that Connor has what's called pectus excavatum, or funnel chest, and so his ribs fall in such a way that the doctor had to make the incision to get to Connor's stomach much closer to the place where the g-tube comes out than it would usually be. Other than that, everything went very well. Shortly afterwards, they asked for me to come back to recovery as Connor needed comforting. They only allow one parent back at a time per HIPAA laws, as the room is open and has a lot of patients, and also to reduce the risk of infection. I followed the nurse back to recovery.
Connor, still pretty out of it due to the anesthetic and the morphine, was trussed out in arm restraints on the bed. Apparently he was upset enough he'd decided that breathing was optional, and whenever they took the oxygen mask away from his face his saturation levels plummeted. I told them that I'd watch his arms, and so we took him out of the restraints (which, I might point out, are a sign-dependent child's worst nightmare as they render the child unable to say anything) and I sat down with him in a rocking chair and the combination of me signing, rocking, and another hefty dose of morphine eventually got him to calm down. Jer snuck in and we bantered back and forth about how a non-doped up Connor would enact revenge on us and all of the doctors and nurses who had perpetuated this outrage upon him. We figured it would involve hired packs of assassin ninjas, or baring that, a judicious application of teeth to any body part within reach.

The recovery nurse was kind of interesting, by the way. She was very nice, but she started asking me questions about how I was "feeling about all of this-- not just the surgery, but just dealing with everything" and expressed admiration and amazement that Jer and I had not divorced because of having Connor. I didn't really know what to say to that, because the implication was that having Connor should be a tragedy, the kind that ends marriages, and to us having Connor is a joy. She gave me a huge bear hug as I was leaving, which was a little awkward for me, but I kind of patted her on the back and shared a raised-eyebrow look with Jer over her shoulder. I suspect the nurse thought she and I had shared some sort of intense moment together and I needed comforting, which was a little strange given that Jer and I were not only completely calm the entire time, but cracking jokes. Oh well.

Since Connor still didn't want to breath without the oxygen on, we ended up with a nasal cannula and they moved us to a room. Once we were settled in, Jer headed off to the house and left you all yesterday's extremely detailed report. Connor began phase one of his revenge plan by becoming nocturnal and also periodically expressing how he was Very Sad by holding his breath and causing all of his alarms to go off as a result, and so his Mommy got very little sleep.

Jer drove back up to the hospital in the morning, and by the afternoon Connor was completely off the oxygen and morphine. He was also much more chipper and communicative, playing a little bit with his blue Gertie ball and periodically patting his tummy near the g-tube while shaking his head "no," whenever he thought we didn't look sufficiently guilty at doing this to him. Nobody asked for his opinion about whether or not he thought a g-tube was necessary, but he was making it unequivocally clear what his answer would have been had we asked. It's hard to be two. Nobody asks your opinion on any of the important stuff like that.

So we were discharged around six in the evening and are now home. Connor is fast asleep, hooked up to his pump for his first ever nightly feeding, and I'm looking forward to playing a half-awake game of Rock, Paper, Scissors at five in the morning with Jer over who gets to go turn the pump off when its finished.

The little guy is doing just fine.


~Jess





Monday, March 23, 2009

Surgery Update

This is Jeremy; not Jessie.

Jessie is staying the night with Connor tonight and since only one of us is allowed to stay I have been ordered to update the blog.

Connor's is fine. He has been moved out of post-op and into his recovery room. He was initially extremely sad/angry until adequate morphine was injected and is now in a state of calm awakeness.

He has not yet discovered the tube sticking out of his stomach, and hopefully will remain ignorant until we can cover it with a onesie to protect it.

All I got.

Out.

Sunday, March 22, 2009

Surgery Day Tomorrow

Tomorrow Connor will be having his g-tube surgery.

We'll be heading to the hospital in the morning-- we're supposed to be there at 10:15. We're not sure what time the surgery is scheduled for, but it should be over by early afternoon. I don't know who's spending the night at the hospital yet-- only one of us can stay the night-- but if I'm not coming home I'll ask Jer to update all of you on how it went.

We talked about the surgery tonight-- we usually wait until the night before to talk to Connor about major procedures so he doesn't have a chance to get really freaked out about them like he would if we told him several weeks in advance. Connor said he was scared, so we talked about how it was okay to be scared, but that he would be fine and we would both be there when he woke up. Connor's friend Monkey had his g-tube surgery tonight, and is now sporting a fashionable button. Monkey, by some amazing coincidence, has had all of the surgeries that Connor has had, and has the scars to prove it. He also wears orange hearing aids, though I'm not sure how functional they are as they're made of clay and his ears are stuffed with cotton anyway, which is probably detrimental to the hearing process.

Monkey will be accompanying Connor to the hospital and the anesthesiologist will make him go to sleep before Connor goes to sleep. He'll have his tummy bandaged up when Connor wakes up. Monkey has been to the hospital with Connor before, though at the time he was not sporting all of the same scars, and he proved to be a big help, so hopefully Connor will find him to be comfort this time too. The surgery shouldn't last more than a couple of hours, so hopefully he'll be installed in a room by late afternoon. He'll be staying at least overnight.

Hopefully Connor's surgery will go smoothly with no complications, and he'll have a quick recovery. Please keep him in your thoughts and prayers tomorrow!


~Jess


Saturday, March 21, 2009

In Which A Book Attempting To Explain G-Tubes To Children Creeps Me The Heck Out

Connor had a good time on W, his pony today. Yes, we named his pony "W." He likes the letter, okay? Anyway, I had to share this picture with you because it was so cute. It has absolutely nothing to do with anything else I'm going to talk about, which is probably a good thing, as I don't want to post pictures of what I'm going to talk about. They might give you nightmares.

Yesterday Connor went to his nutrition appointment, where, among other things, we were given a children's book entitled Why Eat? which details the adventures of Pinky, the "Tubie" alien, who comes from a planet where all the people don't chew. It's published by Prince Productions, and I couldn't find anything to link to about it on the Internet. There's probably a reason for that-- if I was a kid getting a g-tube, this book would scare the bejeezus out of me. It, in an attempt to make g-buttons cool, refers to them as "piercings," and then apparently Pinky the alien hooks himself up through this piercing to your internal organs, sucks up liquid food, and pumps it through his hollow squishy body into yours. Does anyone else find this image extremely disturbing? I mean, I know that they're trying to put a good spin on things, but...eww.

The pictures make it even worse. They're done in clay, and have super bright colors. Pinky looks kind of like a cross between a worm and a length of intestine. There's one particularly disturbing picture on a page attempting to explain supplements in which he is swallowing a huge green apple and green liquid is dripping out his other end into a glass. I'm all for preparing Connor for surgery, but I think I'll stick to the play-acting and the more general hospital books, because I don't think my child is ready for Pinky. Heck, I'm not ready for Pinky.

This book is not actually the scariest book for children I have ever read. That dubious honor belongs to a book by Renee French called The Soap Lady. The inspiration for this book, and I am absolutely not joking about this, is a (warning: extremely disturbing picture behind that link) mummified woman displayed in the Mutter Museum in Philadelphia whose body had saponified, or turned into soap. Apparently Ms. French thought that a mummified soap corpse who comes to life and befriends a young boy would be a wonderful plot for a children's book. I won't give all the details away as you'll have to read the book yourself to see all of the playful antics the boy and his reanimated friend get up to, but the end of the book reveals him playing in the bathtub with her severed arm. That sounds like a GREAT book to read before bedtime, huh?

It wasn't scary enough, so she threw in a ventriloquist doll too. And don't even get me started on the pictures in this one. The Soap Lady looks like, well, a mummified dead woman. But to make sure the book wasn't too scary, Ms French drew hidden bunnies and sheep on every page! That makes it ALL better.

So what's the worst children's book you've ever come across?


~Jess




Friday, March 20, 2009

School Visits

We visited two schools yesterday. One school has beautiful amenities, handicapped accessible everything including THREE playgrounds, a fully equipped therapy room with sensory swings, mats, climbing stairs, etc, and a great special needs class. It also has no SEE-- the aid Connor would possibly be assigned knows ASL, which might as well be Greek to him. The other school has a non-handicapped accessible playground, a gymnasium for a therapy room with all of the stuff piled behind a couple of tables, outdoor walkways between buildings (which means Connor will be out in the rain a lot) and a great class where everyone except the peer mentor (who has a deaf sibling), including the teacher, is Deaf or HoH and SEE or PSE is used for all teaching. Everyone in the class (except for Connor, if he goes there) is otherwise a typical kid without special needs.

So we have a hard decision to make. Do with go with the school with great facilities and a classroom with curriculum more suited to Connor's current development but no SEE? Or do we go with the school with poor facilities but typical peers and Connor's form of communication?


~Jess






Wednesday, March 18, 2009

In Which I Worry Over Nothing And We Torture Our Son With Horrible Things

So we had that school meeting this morning, and they immediately changed Connor's IEP date to next Thursday. No fuss about it at all. That makes me very happy-- guess I got all worked up about it for nothing.

I still have some concerns about what will be offered at the IEP meeting, but I don't want to jump to any conclusions as it hasn't happened yet. I'm hoping I'm just being paranoid; with any luck we'll have a fantastic IEP meeting and Connor will get everything out of it that he needs without any fuss. I guess I subscribe to the "prepare for the worst and hope for the best" philosophy. I'll keep you all posted.

After our school meeting, we met with Connor's Special Education teacher for some sensory play. I thought that the sensory box was filled with Easter grass, but apparently in Connor vision it was filled with huge, venomous snakes. Also possibly broken glass. He reacted as if we were killing him when we made him put his feet in it. Then we made him touch all sorts of things-- things with bumpy parts and squishy parts and, God forbid, sticky parts. Horrors.

We're so mean.

After we were done torturing our son, we drove up to Seattle Children's for his anesthesiology appointment. This went about as it usually does-- they ask us a billion questions related to Connor's heart condition and then have us sign some paperwork. Sounds like we're all set up for Monday's surgery, provided Connor doesn't get sick or something before then. This week is really flying by-- I can't believe Connor's having surgery in five days! It doesn't seem possible.

Tomorrow we're getting up super bright and early to take Jer to work, and then Connor's respite care worker is picking him up and I'm visiting the schools. Then I'm picking up Connor and making preparations for that reception we're throwing tomorrow. Another crazy day in the making!
~Jess


Tuesday, March 17, 2009

IEP Woes

So we've hit a bit of a snag in our IEP process.

I called our liaison at the school yesterday to let them know that we would be unavailable on the 23rd, 24th, and 25th, because Connor has his surgery on the 23rd and will spend either one or two nights in the hospital. I hadn't yet received any word about Connor's IEP scheduling, but I wanted to make it easy on them, as we could do any other dates in March EXCEPT for those three days.

I received a call back later that evening. Was I absolutely sure that we couldn't do the 25th? Um, yes, I was sure. Well, they only schedule IEPs on Wednesdays, and April 1st was over Spring Break, so they'd just schedule us for April 8th. No problem, right? I told them that the day would work for me, but I'd have to check with his Birth-to-Three therapists as Connor's third birthday is April 1st.

So the last Birth-to-Three therapist called me back today. NONE of them are allowed to come to the IEP meeting if it is after Connor's third birthday. Also technically it's illegal to hold the meeting after Connor's third birthday. I called back and left a voice message for our liaison's office telling them that we really needed the meeting done before April 1st, and that ANY other day in March except those three, including weekends, we could make. I haven't heard back from them yet, but we have an informal meeting up at the school tomorrow morning (with an unspecified number of people to apparently let the IEP team get a better feel for Connor) so I'm sure we'll talk to them about it then.

I guess I could probably just go to the IEP meeting by myself, but the truth is that I'm a little intimidated, especially since I've only met one person from the IEP team (and they had NINE people at the last meeting, so Lord knows how many will be at the actual IEP) and I'd feel better having advocates along that know the law backwards and forwards and sideways and are on board with what we feel would be the goals and accommodations needed for Connor to get an adequate education. I also have kind of gotten the vibe in the last few phone calls from the school that they'll be pushing for Connor to go into the Special Ed classroom instead of the Deaf and HoH class, so it's especially important for us to have someone there from his Family Conversations team as we feel without an interpreter the Special Ed classroom would be entirely inappropriate for him. I don't want to start off the school year by being antagonistic, but I really feel like his team needs to be there and I'm kind of the opinion that, well, the school had three months in which to schedule their IEP meeting, and it's not MY fault they left it until the last possible Wednesday, so what can I do? I don't think I'm being unreasonable by asking for his IEP meeting to happen before his third birthday, though maybe I'm making a mountain out of a molehill by wanting his birth-to-three therapists there. I'm sure they have busy schedules, so I feel kind of guilty. What do you all think? Am I asking too much?

We'll see what the school has to say tomorrow. Wish us luck!


~Jess

Monday, March 16, 2009

Medical Monday: Inferior Vermian Dysgenesis

It's that time again: Medical Monday! I blog each Monday about a different condition Connor has and then post a link to it on the side bar as I go. This way people can get a better idea of what Connor deals with on a daily basis and his family and friends can understand what I'm saying when I call and spout ridiculously long medical terms.

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

So today we're diving back into the brain. We're going to be looking at a portion called the vermis.

First we have to talk about the cerebellum, though. The cerebellum, which is found at the very back of the brain, is the steering mechanism of the muscles. It helps regulate body movements, eye movements, balance, and the processing of sensory information. I've drawn you yet another happy brain picture here to show you where it is.

Now the cerebellum has two hemispheres just like the larger portion of the brain does ("cerebellum" in Latin actually means "little brain") and each of these hemispheres control a side of the body: the right side of the cerebellum controls the right side of the body, and the left side of the cerebellum controls the left side of the body. These two hemispheres are connected in the center by the vermis, which acts as a communicator of information and also has a role to play in directing balance and posture.

The vermis is divided up into a number of different pieces, each acting as a communicator for a different portion of the cerebellum. The part of the vermis we are interested in is called the inferior vermis. This part connects the two lower halves of the cerebellum. It is further divided into the nodule, the uvula, the pyramid, and the tuber vermis. Fun names, huh? Each of these pieces connects to a different part within the cerebellum. The vermis is kind of like the meat in a cerebellum sandwich, so in this picture I've pulled the two pieces of the cerebellum apart so you can see the vermis in the center. Otherwise it's hidden from view.

In Connor's brain, the inferior vermis is underdeveloped and very small. This is a condition called inferior vermian dysgenesis. Basically the parts are there, but they are malformed. So what does this mean for him?

Keep in mind that scientists still don't have a good grasp on how the brain functions, and also a lot of Connor's conditions could be caused by several different things. Here's the basics, though, of how Connor is probably affected by his inferior vermian dysgenesis.

First of all, the two hemispheres of his cerebellum probably have a hard time communicating. As a result, Connor has a tough time moving the right and left sides of his body together. This makes activities that involve this coordination, such as walking, very difficult.

Secondly, one of the parts of the inferior vermis, the nodule, along with it's corresponding part of the cerebellum, the flocculus, is at least partially in charge of balance and posture. There's also some evidence that these parts help control body awareness-- knowledge of where body parts are in space. This is what lets you close your eyes and touch your nose. Because Connor's nodule is small, his balance is very poor. Also he has a difficult time doing activities like feeding himself, because he's not sure where his head is in relation to his hand. We've noticed that when Connor is eating (we have him hold the spoon and we also hold the spoon and his elbow) that if we have him direct the spoon he jerks his arm around in space and seemingly has no idea where his mouth is. If we help him touch the spoon to any part of his face, he's able to guide it down or up to his mouth. However, he seems to be able to put his fingers in his mouth without too much trouble, so it's tough to tell if he really can't figure out where his mouth is, or if he just doesn't want to direct the spoon there.

On a rather scary note, a lot of people with schizophrenia have vermian dysgenesis. Hopefully this will not be the case with Connor. The kid has enough going on as it is, thank you very much.

So what's the treatment for this sort of condition? Once again, since the problem is neurological, there isn't really a treatment or cure. The parts aren't going to grow any larger in relation to the rest of the brain. We'll just continue to try and make new connections that help Connor bypass some of the issues, and we'll continue to make adaptations so that Connor is able to function as independently as possible.

There's not a whole lot of information on the internet about inferior vermian dysgenesis, but here's a few links:


National Institute of Neurological Disorders and Stroke: Joubert Syndrome (note: Connor does NOT have Joubert Syndrome, as he is diagnosed with his chromosomal issue. However, he does share the vermian dysgenesis that defines Joubert Syndrome.




~Jess






Sunday, March 15, 2009

In Which The Weather Does All Manner of Crazy Things

This morning we woke up to two inches of snow on the ground. It snowed until about 11:30, and then began raining. It rained until 3:00, and then we had blue skies and sun until about 4:00, where it abruptly became gloomy and rainy again. It's supposed to snow again tonight.

I have no idea why the weather has become so wishy-washy, but I'm sure it's somehow Loki's fault. He's been disgustingly smug today. No doubt he's built a weather machine out of stolen printer parts, dryer lint, and drinking straws. I think he has it hidden under my refrigerator-- he's always fishing around down there. I can think of many reasons why he would want to control the weather, but the top one is probably so he can cause a volcano to erupt or something on all of the days when he's supposed to have a vet appointment.

Crazy cat.

During the brief period of sun, we drove down to Solo Point, a little military-access only beach just south of post. I was hoping to show my sister some of the neat brown and orange starfish and the little purple crabs, but the starfish were in hiding, and the only crabs we saw had already shuffled off this mortal coil. Dead crabs, while still purple, are not nearly as amusing to watch.

While it was sunny and pretty outside, it was also extremely windy. Connor thinks this is highly amusing. He loves hair dryers, too-- he kind of leans into them, squinting and with a huge grin on his face: the exact expression he has on his face in this picture, as a matter of fact. I think he likes the noise the wind makes whooshing past his ears. If I could find one, I'd hold his third birthday party in a wind tunnel. He'd have a great time, though I don't know about the other kids.

I have no idea what we're doing tomorrow, but it probably won't be something outdoorsy, as the weather is supposed to be about the same as it was today. We'll figure something out.

~Jess




Saturday, March 14, 2009

Schedule of Doooooooom!!!!

Connor would like to inform everyone that there are many, many ways to recycle. Shoes, for example, when outgrown, can become very fashionable hats. Don't be afraid to accessorize daringly!

Right. Today was the day that my sister and I planned to do a whole lot of outdoor activities. Today was also the day it started raining again. Figures.

Jer and Connor stayed home and had a Daddy Day. My sister and I ended up driving down to one of my favorite little cafes in Tacoma and playing Scrabble for two and a half hours. I got my rear handed to me on a platter. Apparently I'm a little out of practice. Then we drove down to the Tacoma mall and wandered around for a while, observing the bizarre ceremonial dress and mating habits of the local teenagers.

We stopped by the store on the way home, after determining via a phone call to Jeremy that the chicken I had thawing in the refrigerator still bore a closer resemblance to a rock than it did to any sort of bird. I made spaghetti with sausage, and we watched Hook after dinner. Well, my sister and I watched Hook. Jer played World of Warcraft and Connor alternated between playing with his Gertie ball (which he highly adores and I would recommend to anyone with a child who has gross motor issues) and screaming with glee over nothing in particular. I love that little guy.

The next couple of weeks are going to be even crazier than usual. Monday and Tuesday are pretty free other than my sister leaving, sign class, and scheduling a bunch of appointments, but then things go kind of insane. Here's a quick run-down of my to-do list:

Wednesday: Connor's special education teacher comes and we have an appointment with anesthesiology at Children's Seattle. Buy food needed for party on Friday-- the party for 30-50 people I was informed by my husband yesterday that I would be throwing. I love the army.

Thursday: Visit the possible schools Connor might be going to (this will take about 6 hours as I will visit a morning and an afternoon preschool at two different elementary schools). Go get Connor's three year vaccinations and an updated copy of shot record, then comfort screaming, irritable child while making last minute preparations for the next day's party.

Friday: Go to Connor's nutrition appointment. Rush from there to Jer's office to set up for party. Attend army function. Host party. Rush home and frantically begin cleaning for guests that arrive the next day.

Saturday: Run around shoving everything into my closets. Mother-in-law and aunt arrive and pretend not to notice dangerously bulging closet doors and my totally frazzled appearance.

Sunday: Prepare for Connor's surgery, try and cram in as many touristy things as possible, as feel guilty for all activities occurring during relatives' visits. Lie in bed at night thinking about all the ways surgery could possibly go wrong.

Monday: Connor's surgery. Fight with husband over who gets to stay at hospital. Either spend the night on uncomfortable chair in hospital room, or at home on comfortable bed wishing I was on uncomfortable chair in hospital room. Sleep poorly either way.

Tuesday: Recovery from Connor's surgery. Resume touristy things. Possible frantic preparation for IEP meeting, which they won't call us about until the day before it happens.

Wednesday: Possible IEP meeting. Forget everything that I wanted to discuss due to extreme exhaustion. Realize later that have agreed to have invisible gremlins help Connor in classroom, which will be paid in bowls of milk left outside the shoe cupboard. Develop nervous twitch.

Thursday: Have Connor's last meeting with Family Conversations and his Deaf Mentor. Cry.

Friday: Connor's last Family Conversations play group. Cry some more.

Saturday: Mother-in-law and aunt leave. Continue to feel guilty over number of things they are either dragged to or times they are left at completely loose ends.

Sunday: Collapse in exhaustion. Vow to never leave bed again.

So as you can see, we have a busy couple of weeks ahead. If I survive, I may need a bit of a vacation. I'm thinking Bermuda. Think my bed will fit on the plane?


~Jess

Friday, March 13, 2009

Pike Place and Surgery News

This morning we took off bright and early for Pike Place Market. We arrived around 10:30 or so, and wandered around for a few hours just taking everything in. My sister enjoyed the neat little kitschy shops, Connor enjoyed the ramps and going up the stairs, and Jer enjoyed scaring the crap out of me by taking Connor up and down said stairs and letting go of Connor's wheelchair at key points on the ramps. I enjoyed gasping in horror at the boys' antics and getting us lost in downtown Seattle while pretending I knew where I was going. Overall it was a successful trip, especially since I got to take a picture of Connor with a yeti. I would like to point out that Connor and the yeti have identical facial expressions, and both of them look like they are not exactly having a good time. I figure this is on Connor's part because I have just forbidden Jeremy from pushing Connor up any more ramps, and on the yeti's part because he doesn't have anyone to push HIM up ramps and it sure looks like a lot of fun.

Every time we come to Pike Place Market we always swear we're going to eat somewhere new and different for lunch, and then we always go immediately to Post Alley and east at Pike Place Chowder. We've been to Pike Place probably 30 times now since we moved to the Puget Sound, and every time we end up munching on delectable Market Chowder, sourdough bread, and those tasty little oyster crackers. There are probably many, many other fantastic restaurants in Seattle, and I'm sure we'll try something new next time. Or...someday. Right.

After lunch we took off for the hospital and Connor's appointment with the general surgeon. He told us that due to Connor's prior abdominal surgeries they wouldn't do the surgery endoscopically. However, they shouldn't have to make a huge incision either, which is good. Here's basically how things will go:

The surgeons will make a small incision in Connor's abdomen and find his stomach. They'll make a small hole in his stomach and thread his initial tube through-- a tube called a malecot tube. This is a long, flexible tube with a mushroom-shaped end that prevents it from falling out of the stomach. Here's some more information and a picture of it, if you'd like to see it. They'll then sew his stomach to the abdominal wall to keep it from moving around, and they'll sew up the incision around the tube. This will then allow us to put food directly into his stomach at night while he is sleeping. We can then assure that he's getting enough nutrition and we can also start working him down off the bottle and get him to use cups instead.

After about six weeks, they will replace Connor's malecot tube with a Mic-Key Button. The Mic-Key button is very low-profile-- the port sits right up next to the skin instead of having a long tube like the malecot. It has a balloon inside that you inflate with water to keep the button in the stomach. Here's more info about it if you want it.

He'll probably stay a night or two in the hospital, but no longer than that. It's a very common procedure and it's also temporary-- if he gets to the point where he can get enough nutrition by mouth in the future, then we can take the g-tube out. In the meantime we'll have to replace it every four to six months, but he won't need any more surgeries for that-- we can just take the old one out and immediately put a new one in. If you leave it out for more than an hour, the hole closes up. Crazy how quickly the body heals itself, isn't it?

The crazy thing is when they scheduled the surgery for-- March 23rd. That's only ten days away! I had no idea that they would be able to do it so soon. Looks like Connor will have his g-tube before school starts after all. Who would have thought?

We're going to have a busy couple of weeks ahead of us!


~Jess


Thursday, March 12, 2009

In Which My Sister Arrives, And Loki Makes A Pest of Himself

My sister's plane arrived a ridiculous 40 minutes early, so there was a mad scramble to the airport this afternoon. She arrived intact however, and thus far has not opened any of my closets, so she has remained that way. We picked up Jer, had a quick snack, and then left him and the little guy at the house while we tootled down to Olympia for some window shopping and to pick up a strawberry-rhubarb pie from Boston Harbor Pies, which has expensive but ridiculously tasty fare. Than we stopped off at the Food Co-op and Top grocery for some supplies. Finally we headed back home and I began making one of my specialty dishes: Buffaloaf.

It was that or Buffalacos, but my sister wanted Buffaloaf, so Buffaloaf it was. Tomorrow we will be having Leftaffaloaf, as we didn't finish all of it tonight. Here's the super top-secret recipe, which I am only sharing with several million of my closest Internet friends:

1) Take one recipe for meatloaf.

2) Substitute buffalo.

3) Use "buffaloaf" in as many sentences during the course of the evening as is humanly possible. This adds to the flavor.

Connor was okay with seeing his aunt-- not Super Happy Excited as she is not made out of chocolate pudding and is not a pony or the letter "W," but he wasn't sad about it either. Loki, however, was ecstatic. A new person to pet him and love him! She must be here just to see him! He spent most of the evening shoving himself under all the available hands in some sort of kitty frenzy. Then he retreated to the cat tower, which had somehow turned into a giant mouse and had to be gnawed upon and kicked. I'm pretty sure he'll be winding down soon and saving up his energy so he can start another round about three in the morning, preferably by chasing Cricket back and forth across my sister's bed.

Tomorrow we're off to Seattle for Pike Place Market and to schedule Connor's surgery date. Wish us luck!


~Jess

Closet Trauma

My sister is coming into town today!

This means that I have officially declared my house to be in a State of Emergency, because I have company coming and nothing is clean. I will now spend the next three hours frantically running around and shoving things into closets so that it at least LOOKS clean. My sister will be fine as long as she doesn't attempt to actually open any closets, which would be very dangerous. I love her dearly and would hate for anything to happen to her. Also I think that "Closet-Related Trauma" would look really, really stupid on a death certificate, so we're going to try to avoid that.

I have friends with spotlessly clean houses. I'll walk in and they'll say something like-- "Oh, I'm so sorry the house is such a mess!" I'll look around at the spotless carpets, dusted picture frames, and counters that do not have 6 inch piles of papers from the insurance company on them, and then try to resist the urge to strangle them over their spotless glass coffee tables.

The truth is that I keep the house cleaner when Jer's gone than I do when he's home. I think that this is because when he's gone I spend the evenings cleaning for lack of better things to do, but when he's home I'd rather spend the time cooking dinner and hanging out. I know if I start cleaning than he'll feel guilty and feel obligated to clean too, which is not what he wants to do after spending the last eight hours at work. So I stick to the bare minimum and the papers pile up.

I can't even blame the mess on Connor, as he isn't mobile. Well, I can indirectly blame it on him. 90% of the mess is related to him somehow. It's just not him MAKING the mess. Oh well.

Break's over. Back to cleaning.

~Jess

Tuesday, March 10, 2009

Unbelievable News

Connor had an eye appointment today. This is with the same doctor that saw him a year ago.

His optic nerve hypoplasia in both eyes and the Duane's syndrome in his left eye? Vanished.

They aren't supposed to do that, by the way. A misdiagnosis is of course possible, but it was pretty clear last time we went that he had both of those things-- you could see the retraction of Connor's eyes into the sockets when he tried to look to the left or right-- something that is a huge hallmark of Duane's syndrome and distinguishes it from similar issues that are due to muscular weakness of the eyes instead of a nerve issue. We have pictures of him taken of him with his right eye turned in and his left eye straight. The doc was a little more unsure of the optic nerve hypoplasia at the time, but said that though it was mild, it was there. Now Connor's vision has improved to the point that the ONLY thing wrong with his eyes is that his right eye has Duane's syndrome and he is a little far-sided. Suddenly he has peripheral vision, too--something he's never had. The doc said he can probably see just as well, if not better, than typical kids his age. So I can take optic nerve hypoplasia completely off his list of disorders, and we can stop making special accommodations for his vision at therapy and play group, as he doesn't need most of them any more. Amazing.

The funny thing is that Connor does this sort of thing all the time. His soft spots closed at birth (for the back one) and six weeks (for the front one) and we were supposed to have to do this major surgery to reopen the sutures in his skull, but then his head mysteriously kept growing despite the completely closed sutures, and is now rounded out and completely proportionate to the rest of his body. He had severely high levels of calcium in his blood, levels of the type that cause people to go into comas, that not only had no effect on him but suddenly righted themselves when he was six months old. And you can't forget the whole "brain-stem response only" prognosis. Knowing who we are? Standing? Learning sign language? Impossible. Yet here he is, doing all of those anyway.

In the end Connor leaves me both baffled and overjoyed. To the doctors he is a mystery, but to me he continues to be, and always will be, a miracle.


~Jess

Monday, March 9, 2009

Medical Monday: Hypoplastic Pons

It's that time again: Medical Monday! I blog each Monday about a different condition Connor has and then post a link to it on the side bar as I go. This way people can get a better idea of what Connor deals with on a daily basis and his family and friends can understand what I'm saying when I call and spout ridiculously long medical terms.

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

Today's topic is the pons.

The pons is part of the brainstem-- it's found at the base of the brain between the midbrain and the medulla. I'll draw you a cute little picture here so you can see where I'm talking about. The pons is a pretty important part of your brain, and it has quite a few different functions. Scientists aren't sure exactly what all of them are, as for the most part the brain is a big mystery, but they're pretty sure about a few functions. Here are some of the things the pons does:

-Acts as the communicator of sensory information between the medulla oblangata, the cerebellum, and the cerebrum. Basically it acts as a conduit for all of this information.

-Helps regulate breathing.

-May possibly have some effect on REM sleep and dreaming.

-Contains the reception points of four cranial nerves:
-- The Trigeminal nerve, which controls the sense of touch and pain in the face and scalp
and also has a role in biting, chewing, and swallowing

-- The Abducens nerve, which controls the movement of the eye outward

-- The Facial nerve, which controls facial expressions and the movement of one of the
bones in the inner ear

-- The Vestibulocochlear nerve, which transmits sound and balance information from the
inner ear to the brain

So Connor's pons is hypoplastic, which is a fancy-shmancy word for too small. All of the parts are there, but they are all undersized. Another way of writing this condition is pontine hypoplasia. A small pons can have a variety of different effects on different people depending on how small the pons is and which parts are too small. It's also sometimes difficult to tell with Connor which issues are due to the pons and which are due to one of the other neurological issues he has, but the pons is probably affecting him at least partially in several areas.

First of all, he has difficulty controlling his muscle movements and gets very frustrated when his body won't do what he tells it to do. This could be because the information isn't all being relayed due to the smaller connection between the cerebrum and the cerebellum-- only bits and pieces are getting through, or they're getting through at a delayed rate. He also has an extremely high tolerance for pain and a fairly severe sensory processing disorder, which could be caused, as in the motor skill issues, by information not making its way properly through the pons. His breathing is fine, thank goodness, except when he's having a seizure, which is a whole other story that I'll talk about on some other Medical Monday. He seems to sleep pretty well, too, and we're pretty sure he can dream as he makes little noises and facial expressions in his sleep. Where the small pons seems to have had the biggest effect for him is in the nerves that it acts as a receptor for.

The most obvious issue is with the Abducens nerve. One of Connor's eye conditions, Duane's syndrome, is caused by this nerve not working the way it should. As for the other nerves, well, he's able to swallow, but he has difficulty coordinating his jaw movements, drools due to weakened jaw muscles, and does not chew at all. He has what the doctor calls "reduced" facial expressions. Part of the issue is that his upper lip is still connected to the underside of his gum, but he also seems to have some weakness in his facial muscles. Connor has extremely poor balance, and the doctors suspect he might have some difficulty processing the information coming into brain from his ears, as he sometimes seems much more alert and able to locate sounds and other times seems to completely ignore them. All of these things could be caused by a hypoplastic pons.

We're very lucky that his breathing was NOT one of the things affected, or it's likely that he wouldn't have survived past birth. As for a prognosis or cure, well, none of these things are treatable or "fixable" because they are due to his brain structure, but we can help him form new brain pathways that can help with some of the issues, such as the sensory processing disorder and motor skills. We can due this by continuing to expose him to new situations and to help him practice moving his muscles over and over. We've already seen big improvements in those areas, and hopefully he'll continue to get better as time goes by!

There's not a whole lot out there in regards to the effects of a hypoplastic pons, but here's some information about its general function:


Just One More Day: Function of The Pons-- this website deals with tumors of the pons, but has some valuable information. Many of the symptoms of a pons tumor have similar effects as having a small pons because the symptoms are all caused by impaired function of the pontine region.

~Jess




Sunday, March 8, 2009

Some Assembly Required

This morning we were supposed to go to lunch with some friends in downtown Tacoma. We printed off the directions from the restaurant's website, picked up our friend Anna, and then proceeded to blunder around downtown Tacoma for twenty-five minutes, completely unable to find the restaurant and cursing directions that sort of assumed you knew where you were going and so left out key instructions as only an idiot without a sense of direction, like, oh, me, would need them. We gave up after about half-an-hour and headed down to the Mandolin Cafe, which is one of my favorite little places to eat. It's a coffee shop/European bistro that features heavy trestle wood tables, a zillion different kinds of tea, gloriously funky art on the walls, and cheesecake that's to die for. They happened to have an excellent jazz band playing that morning and so while we were sorry to miss our friends, we all thoroughly enjoyed ourselves.

After we finished brunch, the four of us headed over to World Market to pick out a couch. Jer and I spent a while debating on whether or not it would fit in our car, and ended up heading home, dropping Anna off at a friend's house, unloading everything out of the car, and laying all the seats down. Jer drove back to World Market without Connor and me, bought the couch, and managed to cram it into the car.

Of course, this couch came with some assembly required. I should have known better than to buy a couch that has the words "Some Assembly Required" on the outside. I believe this is false advertising. What the label really should read is: "Warning! This Item Will Cause You And Your Spouse To Curse A Whole Lot, Probably At Each Other, And You Will Spend The Next Three Hours Fiddling With Little Screws and Wondering Why We Can't All Just Sit On The Floor, Because Who Needs a Stupid $?%#!@* Couch Anyway?" I'm pretty sure that Connor learned some new words today, words which luckily he does not have signs for as I'm not about to try and explain them to him.

We have some prior experience with putting together furniture, as when we moved from Texas out of our 450 square foot apartment and into our current 1100 square foot house we possessed a bed frame, two bookshelves, two dressers, that faithful and blissfully easy to put together futon, two footlockers, and a television. We solved this problem by buying a thousand dollars worth of Ikea furniture (which is A LOT of Ikea furniture) with the intention of assembling it when we got to Washington. If you ever REALLY want to test the strength of your marriage, don't bother having a baby or an affair or something. Just attempt to pound in 900 of those little wooden pegs that come with Ikea furniture over a two day period with only one hammer between you. If you have managed not to kill one another by the time the weekend is over, you're probably good.

Flipping houses? Not going to be an ideal profession for us.

At any rate, we finally got the couch set up, and agreed that it looks pretty awesome, meaning that while Jer probably could have cared less as to whether or not we got a new couch in the first place, he is a fantastic husband and knows when to pick and choose his battles, and now I've already started eyeing our end tables, as MDF isn't really doing much for me these days.

I'll try to find something with no assembly required.

~Jess

Saturday, March 7, 2009

Lazy Saturday

Today was a nice, relaxing day. We drove to our local Panera for breakfast and then headed down to the flea market taking place on post. We didn't find anything, and it was really crowded, so we gave up and headed back home. Connor ate Second Breakfast (he eats in the hobbit fashion around here) and then we all took a nap. Or rather, I took a nap and Jer watched Connor. I woke up a little after one.

"I'm just going to pop over to the grocery store," I told Jer, heading oAdd Imageut the door. "I'll be right back." Jer would have been completely justified in rolling his eyes at this point.

Three hours later I returned with several new books for Connor, a couple new books for myself, a bottle of honey mead, some apple-almond stuffed pork tenderloin, a high pressure shower head, and a couple of crazy beeswax candles. Apparently, despite the fact that they look identical, were in the same bin, and have the same label, one candle is slow burning wax and the other is of the crazy-messy-throw-hot-wax-all-over-my-table variety. Jer and I ate pork tenderloin and spinach salad; Connor ate garlic-herb flavored chevre and apple-almond stuffing. Then Jer and I drank mead, which turns out to be pretty good stuff. Connor asked for mead but was denied. Sadness. We all watched in fascination as the candles burnt down at completely different rates while debating on what things in our house we should drip hot wax all over. No pyromaniacs live here, I swear.

Tomorrow I'm hoping to drag Jeremy to World Market to look at a couple of couches. Our sad futon, left over from our college days, didn't have much padding to begin with and is now beginning to degrade in interesting lumpy ways, as the cats both have their favorite spots on it and have worn down the padding in those places. As we're going to have a huge number of visitors over the next few months who will be relegated to sleeping on this sad, decrepit piece of furniture, I think they'd appreciate us buying something a little more comfortable. I'd debated buying a couch while Jer was gone, but ended up chickening out, as something that costs that much money is not something that I want to buy on my own. What if he came home and hated it? Not that Jer gets very fired up about interior decorating, but oh well. I worry about these sorts of things. So a-couching we will go!

~Jess


Friday, March 6, 2009

Daddy's Home!

Jeremy is home!!!!!!

We're so excited that Jer is back from his training-- it's been about six weeks now and we've had virtually no contact, so it's great to have him back! I've known for a few days that he'd be returning, but because of safety and security issues I didn't mention it on here-- the same reason I don't talk about his rank, job description, location of training, blah blah blah. At any rate, he's home now and it's wonderful to have him in the house!

Connor had a much better day today-- he was still a little clingy, but he obviously is really happy about Jer being home. Connor showed off all of his new tricks: the flashcards, new vocabulary, etc, and his Daddy was very impressed.

As for Jer and I-- we're hoping to leave Connor with his respite care worker some time in the next couple of weeks so we can spend a day together and get a chance to reconnect.

The other good news is that not only does Connor's left hearing aid still work, but it now has a deliciously fruity scent. No doubt this will be very refreshing to Connor throughout his day. I'm sure that was his intention all along.

~Jess

Thursday, March 5, 2009

Tea and Cake, Anyone?

Today was an eventful day!

We headed out this morning for a little bit of shopping, and I stopped by Ross and found a nice glass cake stand on sale. I've been looking for one to do a big terrarium centerpiece in so I was happy to find one. Anyway, we came home and I unwrapped it and set it up on our counter, planning to go look for interesting stones and moss later in the day. I looked up from my perch on the futon about an hour later to discover Loki, blatantly ignoring the household rules, up on the counter completely oblivious to everything around him. I yelled at him, but he payed absolutely no attention to me because he was so focused on blissfully, enthusiastically bathing the cake stand.

Crazy cat.

The second thing that happened today is that Connor decided that his left hearing aid was looking a little dirty, and so while I was sitting here at the computer with him on my lap, he took it out and dunked it into my piping hot raspberry tea. I'm relatively sure that immersion in raspberry tea is not an acceptable cleaning method for hearing aids. Keep in mind that he already broke his right hearing aid and so he's now sporting naked ears. I wiped the hearing aid off as best I could, took the battery out, and put the aid in Connor's drying kit. I'll find out tomorrow morning whether or not we're out two hearing aids instead of just one, and the fix for the left one would probably be a little more complicated than the fix for the right. I'm really looking forward to explaining at Family Conversations play group tomorrow why my child is there without any equipment whatsoever. Lovely.

Perhaps Connor felt bad about dunking his hearing aid in my tea, because he cheered up afterwards and made an extra effort to be charming. My friend Anna and I went out for phở and Connor sat in a neat little high chair at the end of the table. Apparently Anna eating with chopsticks was the most hilarious thing he had ever seen in his entire life. Every time she lifted the chopsticks to her mouth, he'd erupt into peals of laughter. He had the whole restaurant in stitches. It was pretty adorable. It's nice to have a child who is so easily amused.

Between Connor and the cat, who needs TV? I've got live entertainment 24 hours a day!


~Jess




Wednesday, March 4, 2009

Meetings!

The nurses' visit this morning went well-- only two of them instead of three came, and they stayed for about forty-five minutes talking about Connor's medical issues. They determined that Connor falls under the jurisdiction of Washington law RCW 28A.210.320, which deals with children with life-threatening health conditions who are in a school environment. We will need to come up with a health care plan in regards to Connor's seizures and the possibility of stroke or cardiac arrest, and what the school's instructions will be if those events should occur. The nurses will be getting in touch with Connor's doctors to get a better picture of the kind of care plan we need, and we'll get that set up before he starts school.

Overall, our evaluation results meeting also went pretty well!. It lasted just over an hour and counting myself and the two therapists I brought with me, there were eleven people there. I walked out with a twenty-two page evaluation report recommending OT, PT, and ST services for Connor as well as an FM system, and two visits scheduled to visit the special needs classroom and the Deaf and HoH classroom.

I was glad that I brought Patti and Barbara with me, because it was really nice to have a couple of people there that I knew well-- it made me more confident and less intimidated by the number of specialists there. I'm hoping that the IEP meeting will go as well, though I usually go for the "prepare for the worst and hope for the best" attitude when getting ready for these sorts of things.

The coordinator was much warmer, friendlier, and more helpful this meeting, which was really nice. It turns out that she won't actually be attending the IEP meeting, however, which means the Deaf and HoH coordinator will probably be the only one from this group who will be there. Since we don't bring Connor with us to the IEP meeting, this means that the people making the decisions will never have seen him and will be basing the IEP solely on what's on paper and what I can bring to the table. This is a little intimidating, but I really hope that it won't be an issue to get the services necessary for Connor to succeed.


~Jess

Attack of The Health Care Professionals


It's forty minutes before the hordes of school nurses descend on our house. Mr. Crabbypants still reigns supreme. I just received a phone call letting me know that it won't be one school nurse coming, it will be three.

Hope I have enough cookies.

~Jess

Tuesday, March 3, 2009

Home Again Home Again

We're home!

The wedding was beautiful, and everyone really enjoyed themselves with the notable exception of Mr. Crabbypants, masquerading as Connor, and my poor mother-in-law, who was gracious enough to babysit for me. The ceremony was held in the sitting area of a B&B in Fort Worth called Etta's Place. Most of the guests also stayed at the B&B, and Connor, my mother-in-law, and I occupied the Kid's Room, which was just down the hall from the sitting room. The plan we'd decided on was that my mother-in-law would entertain Connor in our room while I attended the wedding and the reception.

So picture, if you will, the scene. A lone violin plays a sweet and mellow air. The groom and his groomsmen nervously descend a spiral staircase to stand in front of high arched french doors. The bridesmaids promenade to "ooos" and "ahhs" down a stairway and through a Victorian-style library, followed by the radiant bride on her father's arm. We're all wiping away tears because it's so beautiful and sentimental and they both look so happy. The minister asks everyone to join him in prayer, and as we bow our heads the room is for a moment completely, utterly silent.

And right in the middle of this perfect, golden silence, just before the minister opens his mouth to begin, we all hear a noise. It starts off soft and quickly rises in both pitch and volume, ending in a violent crescendo so high it can't possibly be human. It sounds a little like an enraged pig stomping on a bicycle horn.

"AaaaaugAUGAGHHHHHHAUGAGHHHHH!!!!!!!!!!!"


Evidently Mr. Crabbypants resented being left out of the ceremony. Also he has an impeccable sense of dramatic timing.

My mother later remarked that she didn't realize Connor had that kind of lung capacity, given that he was down a hallway and behind a rather thick wooden door. I'm sure my mother-in-law, who was in rather closer proximity to the screaming, received a better idea of exactly how loud my son can be and for how long. She'd brought a portable DVD player with her to entertain him. "Chicka Chicka Boom Boom" reminded him of how much he hates coconuts. Ernie's rendition of "Rubber Ducky" caused him to wail in sympathy for all artificial animals tortured in bathtubs. By the time I came back from the reception, around 11:30 pm, he had worn himself out after three hours of solid screaming and was fast asleep.

My mother-in-law is a wonderful person, and since she not only didn't take offense at Connor's totally unacceptable behavior but has actually offered to babysit him again, I'm considering petitioning to have her canonized.

So the rest of the stay was rather laid back and uneventful so long as I didn't go more than thirty feet from my parent's house and stayed within Connor's line-of-sight at all times. My parents offered to babysit for me a couple of times and let me escape to go visit friends, even with the knowledge that the second I left he would announce that the World Was Ending and he would be providing the appropriate sound effects for the occasion. My parents are awesome. I started helping my sister and her fiance out with some of their wedding things, hung out with some family and friends...it was a nice break.

My miserable, angry son huddled on my lap for the entire plane ride home. His eczema, which hasn't caused him problems for months, is back with a vengeance, and he's got diarrhea from all of the stress, which was really, really fun on the plane. I had no idea how much he relies on routine to order his world and how stressful it would be on him to take him out of it for a few days. Normally when we travel I allow for a couple of days at the beginning and end of the trip to take it easy and establish a new routine before we start socializing and going on outings. I didn't do that this time, and it was a big mistake. When my sister has her wedding I'm going to try and travel at least a week in advance so that he's settled in before I start leaving him with other people and taking him to strange and new places. Oh well-- live and learn, I suppose.

We won't have any time to settle back in here at home either-- we'll be thrown immediately back into the thick of things. We have two school nurses stopping by the house tomorrow morning at nine to evaluate Connor, who I'm sure will be just thrilled, and then at ten-thirty Connor's respite care worker is coming over so I can leave for Connor's evaluation results meeting at the school. I got the invitation for that today, and in addition to the experts they used before they've added a Special Education Supervisor, bringing the grand total of people the school district will have at the meeting to eight, which is rather a large number. This should be an interesting gathering-- hopefully good things will come of it.

At any rate, we're home! I'm looking forward to the return of my sweet Connor soon, as Mr. Crabbypants has definitely worn out his welcome.


~Jess


 
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