In Which Connor Out-Screams A Hippo

Connor has this application on his iPad called Talking Baby Hippo.

Basically it's this purple hippo on a tiny tropical island who mimics all of the sounds you make in an extremely high pitched voice.  Despite its rather loose take on scientific accuracy (who knew hippos come in pastel colors, hang out ocean side and spend a lot of time sucking down helium?) I like the program because it encourages Connor to vocalize.  We think he actually has one sound he's assigned meaning to now!  Predictably, it's "uh-uh." 

Now if we can just get him to say "uh-huh" we'll be golden.

We're not expecting speech to ever be his main mode of communication-- he still only produces nasal (m, n, and ng) and approximant (w, r, l, and y) consonants and the only vowel sound he makes is 'ah'; there aren't a whole lot of words you can construct from those pieces.  We figure the more ways he has to get his point across the better though, so we'll keep encouraging him to make lots of noise!  At least we'll encourage it at home, anyway.  Sometimes in the middle of the grocery store I wish he wasn't quite so enthusiastic about the sounds he's making.  For such a small kid he's got a remarkable lung capacity.

Anyway, so Connor was playing with his hippo application and having a great time and I was sewing on the clutch purse (which I finished today) as well as occasionally making the hippo sing songs from Alvin and The Chipmunks for my personal amusement when my phone rang.  It was Connor's pharmacist, who was calling about a prescription. 

We're on a first-name basis, which tells you how often I talk to the pharmacist.

I chattered away when the pharmacist told me that she'd call me back.  "I think something's funny with our connection," she said. "I'm getting this weird really high pitched echo of your voice."  We hung up and she called me again.  "Huh.  It's still there," she said. 

That's when I realized that the hippo program-- which was on at top volume because Connor's hearing is most affected in the higher ranges-- was still picking up everything I was saying and faithfully repeating it back word for word.  Evidently it was coming in loud and clear on the other end of the line.  Whoops.

So I turned the iPad off to continue my phone conversation, which proved to be a mistake.  Connor had really been enjoying the talking baby hippo and when signing that he wanted it back proved ineffective he decided that doing what I'd been encouraging him to do all day-- exercising his vocal cords-- would maybe make it reappear instead.  So he started shrieking in an extremely high pitched voice at the top of his lungs, doing a remarkably good imitation of what the hippo would have sounded like had its volume been increased about threefold and if it could only repeat back the vowel "ah." 

Needless to say my phone conversation with the pharmacist was not terribly productive.

~Jess

In Which I Feel Much Better And Connor Keeps Learning

I felt so much better today.

Pretty sure I'm over the worst of things, because I kept all my food down today and everything!  And also I could do things like breathe and stand up and stand upright and not feel like I was quite possibly going to die at that very second.  So that was good.

Connor had speech therapy today after school.  We've been working a lot with the iPad in there, and it's interesting to see the progress he's making.  Now when we ask him to make choices with his Proloquo2go program (the augmentative communication app), he'll consistently eye-point to the picture he wants, and he'll hover his hand over it.  He still won't touch the screen without assistance, though, even though he's perfectly capable of doing so.  I'm wondering if he thinks that the pictures might have different textures or something.  And if we're showing him a picture of something he has a sign for, most of the time he'll just look at us, do the sign and then get mad if we make him touch the picture anyway.  I think he figures that he's already gotten his point across.

A few of the programs he's willing to touch on his own, though-- like his bongo app (King Bongo Mini)-- and I think he's making really good progress towards being more confident about touching it.  He's learning that a full hand slap or the heel of his hand (which he uses to manipulate most of his toys) doesn't work for the iPad and so we're starting to see him isolate his fingers more.  That's a skill we'd definitely like to encourage, and hopefully he'll translate it to activities other than the iPad!

That's my big boy!

~Jess

In Which Connor Is An Official Solid Food Eater!

No more seizures today, thankfully. I'm really, really tired of the kid trying to die on me; I wish he'd cut it out. I've done mouth-to-mouth way more times now than anyone who's not qualified as an EMT should be allowed. I told Connor yesterday after he conked out on us that he'd filled his quota for the year. Hopefully he'll take it to heart and quit it.

Enough depressing talk. I have a fantastic announcement to make: Connor is officially a solid food eater! Today at speech therapy he ate an entire Anna's Almond Cinnamon Thins cookie and a couple of bites of cheeto! The cookies are really thin and they dissolve easily in your mouth-- and they have a strong flavor, which is important for Connor. While he still doesn't chew, he did actually break off a couple of bites of cookie himself, which is really exciting. He also took a couple of sips from a straw sippy-cup, something he's never done before! It was one of the ones that you can squeeze to get liquid to come out, and while he didn't suck on it he did close his lips on the straw and swallowed what I put into his mouth.

I'll have to go out and get a couple different flavors of the cookies and some other easily-dissolving foods to try. It may not be tomorrow though, partially because I don't really want to be out at the store during the last-minute-present-buying zoo and partially because Connor seems to have come down sick. This evening he's been really fussy and is having some pretty nasty stomach trouble; he might have picked something up in the nursery yesterday or maybe when we were up at the hospital for Jer. At any rate we're going to take it easy, and we'll have to miss Christmas Eve services, unfortunately. We probably don't need to be spreading germs along with peace and goodwill towards men. I'll have to curl up with the Good Book and read the Christmas story to Connor as a substitute. Oh well.

~Jess

Bye Bye Bottle!

Well, folks, as of today Connor is officially off the bottle.

Yes, I have a child who is three years old and still uses a bottle. He doesn't chew, and he has trouble swallowing, so a bottle was the only way we could get enough nutrition down him before the g-tube placement to keep him from starving. There he is at around four months old, eating for his Daddy. It's apparently a very serious business.

The crazy thing is that I never intended to have him on a bottle in the first place. The original plan, way back in the naive early stages of my pregnancy, was for me to breastfeed for the first year and then switch him directly to a cup. Even after we found out (at about week twenty) that Connor would have multiple medical issues, I still thought that I'd be able to breastfeed. After all, it was the natural thing, right? Surely it couldn't be that hard.

Then Connor was born. And for the first month of life, due to intestinal malrotation he didn't take anything by mouth at all. He spent the next month with an NG tube, and after that he needed so many extra calories that my milk alone wasn't going to sustain him. So much for breastfeeding.

I pumped every four hours around the clock. For six months, I did this. I had one of those loud beeping alarms I'd set, and every four hours, when it went off, I'd hook myself up to what I called my "Madonna Bra" (You know the one I'm talking about) and spend the next half an hour watching trashy late-night shows on my parent's television. It got to where I didn't let down to Connor crying-- I let down to that alarm clock, elevators sounding the floors, trucks backing up, fire alarms . . . you get the idea. I never had much of a supply, and our move cross-country when Connor hit six months old killed it entirely; I dropped down to using the machine only at night for the duration of our trip when I discovered to my horror that if I pumped while sitting in the passenger seat no matter how I arranged blankets, sweaters, etc I gave every trucker passing us on the highway a perfect view of the proceedings. I've never been honked at so much in my life. At any rate, by the time we reached the Pacific Northwest and I tried to resume my former schedule it was too late and my supply had dried up.

Now that you know way, way more information than you ever wanted to know about my boobs, back to the present. One of the reasons that we had the g-tube placed was that we wanted to start trying to work Connor down off the bottle and on to a cup, but we needed a safety valve to make sure he was still getting all of the nutrition he needed. There was also the fact that every time he gets sick or stressed, he refuses to eat. Like right now, for example. For the past four days, Connor has completely refused to take any liquid by mouth. I suspect this is yet another reaction to Jer being deployed; he shakes his head no when I offer it to him and says "Daddy," which I assume means that he'll drink again when Daddy gets home. He's staging his own little hunger strike in protest of the current situation. Maybe he's been surreptitiously been reading up on Gandhi when I think he's napping.

He'll take a few bites of pureed food, and maybe a couple of sips from a cup, but he's totally rejecting the bottle. Before we had the g-tube, this kind of behavior usually resulted in me becoming increasingly frantic in trying to get food to pass my son's clamped lips, a trip to the hospital for fluids after a couple of days, and him losing nearly all of the precious weight he'd gained over the few months prior. The g-tube has taken nearly all of the stress and danger out of the situation. He doesn't want the bottle? Fine.

Since we're trying to wean him off of the bottle anyway, there seems little point in trying to get him to drink from it again just so we can slowly transition him to the cup. So Connor's speech therapist and I talked it over today and decided to quit the bottle cold turkey. This means that most of his nutrition will probably be coming through a g-tube while he slowly, slowly learns to drink more than an ounce at one sitting out of a cup, but at least his teeth will be safe from bottle rot. It also means that I should probably talk with our nutritionist about making my own enteral formula, as I really don't care for the stuff I have to put down his tube at night (do you know just how much of that formula is made out of corn? A whole lot, that's how much) so I'd rather not make it his whole diet if I can help it. At any rate, we'll see how things go.

Not really sorry to bid the bottle goodbye, though.

~Jess

Therapy Sessions

Monday Connor and I went to his combined Physical and Speech Therapy session. We love Laura, his PT, and Julie, his ST-- they are awesome! Connor and I were sporting his new groovy FM system, which was much admired. After I told them about my grocery store newscaster fantasies, Julie told me it makes me look like a "diabetic spy"-- which, after looking at pictures of blood glucose monitors, makes perfect sense. Here's Connor's FM system:

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?

Connor: No.

Therapist: Let's touch the ring. Can you touch this ring?

Connor: No.

What color is this ring?

Connor: No.

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.

~Jess