Tag Archives: sleeping

Self Prescribing Some Wine for my Whine

My frustration and irritation level is way up this week. We’ve been looking at the possibility of reducing the price on our home since we’re getting so many looks, including three second looks, but no offers. Then we got the heads up that another jerk in the neighborhood is going on the market this weekend priced almost $10,000 less and with a bonus room we don’t have. So we preemptively dropped the price and are hoping for a miracle before they hit the market. And unlike the other house that went on the market in our neighborhood that is under contract despite rotten wood and a lousy yard, this one actually has great curb appeal. Oh, please let it be a brass-infested wonderland inside. And if they go under contract first and accept an offer below a certain price point, we’re screwed and stuck where we are.

We had some people view the house yesterday that reportedly loved it. Except they have a second child on the way and they want more room. I’m not real clear on why they looked at all. Stop getting my hopes up, people!

Then, to top every thing off, Connor’s neurologist called yesterday with the results of his EEG. The stupid tuber in his left occipital lobe is acting up again. It has put out spikes before, but apparently Connor is having subclinical seizures again. Those are seizures that have no outward appearance, but show up on EEG. The tuber he had removed when he was four months old was causing him to have a couple subclinicals an hour, plus a handful of clinical (ones we could see) a day. We haven’t seen any on EEG since then. Yay. Here we go again. He assured me that this was nothing like when Connor was born but he did see more than one in the eight hours. Mother F. When we started him on Trileptal, we upped the dose once per directions, but never upped the second time — per directions — since we weren’t really seeing anything anymore. So now we are upping and will have another EEG once Connor is totally off the vigabatrin.

I’m just really baffled by the whole concept of a subclinical seizure. I know what the technical definition is; I just don’t get how it affects him. Yes, I understand it’s not good to have funky brain activity, but if he shows no outward signs, how is it affecting him? Like, if I had one right now, what would it do? Does he feel something we can’t see? Connor is happy and progressing, but would he be progressing faster without them? Maybe. Or would it even matter because so many factors go into delaying a TSC kid? If by some crazy chance, someone with epilepsy reads this and has subclinicals on their EEG, if you could enlighten me to your experience…

UnknownSpeaking of progression, here is an area where he is fighting us tooth and nail. The bottle. I cannot get that kid off the nipple. He doesn’t care what style or shape the cup is  — he’d probably even drink out of Flavor Flav’s chalice — it just better have a nipple on top. The hard plastic sippy cups inspire instant anger and hurling of the container, so we tried the sippy cups that are interchangeable with his bottle. We can either have the sippy cup mouthpiece or the regular nipple. He hates this sippy cup mouthpiece a little less because it’s pliable like a nipple, but other than sticking it in his mouth a few times, he just plays with his bottle. His speech therapist gave us some things to try, but thus far, no luck. Maybe his college roommate will shame him away from it.

I mean, how much difference can there be?!
I mean, how much difference can there be?!

I leave you with a montage of Connor’s funky sleeping positions. Apparently some people have to plan their whole day around their kid’s naps. Not me!

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An early morning with my little rooster.

Yay! It's Christmastime!
Yay! It’s Christmastime!

Last night was a little bit of a bummer for Chris and me. I think it just suddenly hit us with great frustration, the ways that Connor is behind physically. We’re really focused on getting him sitting independently, but he’s definitely not where an 8.5 month old should be. It’s not that we didn’t already know he was behind, but as he gets older and babies can be more active, it’s so much more obvious. I find myself obessing over other babies I see doing more that appear to be smaller in size. Granted, the fact that he’s a chunk doesn’t help, but it used to be if the baby turned out to be older, it didn’t bother me so much. Even if the baby was just a little older, I’d feel okay. But a few days ago we were having breakfast at J. Christopher’s and there was a small, but very active baby girl in a high chair. Even though she was much smaller than Connor, I guessed her to be 9 months. Plus she had older siblings. And she’s a girl! Girls develop faster, right?! I’ve seen kids running, literally, that were smaller than Connor and when I ask, they turn out to be in the 18 month range. When mom replied, “Seven and a half months.” I clenched my teeth and faked a smile. She was supposed to be older than Connor, even if only by a couple weeks.

Whatever these eye rolls are, presumably seizure activity of some sort, I think they are slowing him down. I’m anxious to get our EEG done so we can hopefully adjust meds. Better yet, would be to find out that it’s some sort of harmless electrical activity, but considering they mimic seizures by occurring when he’s very sleepy or right when he wakes up, I don’t know if that will happen. He sped up so much after surgery when the complex partials stopped, but we’ve been on the edge of sitting independently since September. Yes, he’s better, but I thought it would have been mastered long ago.

Why do seizures have to be so annoyingly complicated and present in so many ways? Before all this, when I heard the word seizure I envisioned the classic grand mal (now called tonic clonic) as presented on TV shows and movies. Even if you read descriptions of the different seizure types it can be very confusing because the written description may not match what you’re seeing. I was baffled forever because we were told that his original seizures were complex partials, yet when reading about them online, the physical description was nothing alike. His body would jerk, in a manner more resembling a tonic clonic. But it has more to do with how it works in the brain. A tonic clonic is way more intense, even if it does have similar jerking movements. Some seizures are just staring. Some people have what seem like anxiety attacks, but in fact could possibly be a tyoe of seizure. Take his eye rolling for example. We see the TSC neurologist, and yet he’s never even seen this before.

Argh! I try not to let it get to me. It doesn’t mean he’s not going to do these things. I know he will. Developmental delays are extremely common in TSC, and it doesn’t mean he can’t be a normal kid (albeit perhaps dealing with some TSC issues), but it’s still nerve wracking. I get comfort from interacting on the TS Alliance website with adults who have TSC, and have lived pretty normal lives. That’s not to say they don’t have issues to contend with, but they went to college, have kids, have jobs, etc. Some of them, being born at a time when jack was known about this disease, say their parents were told they would be dead by the time they were 3, 5, or 8. Some parents were told they would be vegetables unable to function at all. And here they are, talking to me on FB. Medicine has come a long way. I don’t think most parents upon diagnosis today get these doomsday diagnoses, because they simply aren’t true. Yes, there are severe cases to be sure, but such predictions can’t be made about a baby. I am thankful that we live in a big city, though, because from time to time I come across people in small towns whose doctors have been practicing since those olden days or can’t work the Internet because they still throw that stuff at them. Oh, your kid will never walk, talk or read. Wrong. There is no shortage of parents who were told that and it wasn’t true. Their kids did all those things.

I’m just really ready to do this video EEG and see what’s going on finally. If the neurologist’s office hadn’t stepped in to help us, I’m certain we wouldn’t have heard by now. I hear it’s quite common for it to take some time. While I understand there’s some coordination that has to take place, and perhaps expecting a same day answer is unreasonable, the fact that I was supposed to receive the accompanying paperwork via e-mail two days ago leads me to believe that patients are waiting longer than they should have to. I was told it would come the night we made the appointment. It didn’t. Out of concern that it didn’t go through I contacted the hospital again to make sure that wasn’t the case. It hadn’t been sent yet, but would be sent that day. Still didn’t come. Day number 3, we shall see… People don’t have EEGs for fun. They are indicative of a problem. They should be scheduled as quickly as humanly possibly. But, hey, what do I know.

But things always seem brighter in the morning, even at 5 am surprisingly. Connor decided to wake up nice and early. Since Chris had to go into work today, I brought Connor into bed with me where his hijinks continued. He was enjoying some early morning shrieks (for fun, not upset) and kicking the mattress. I was half asleep “talking” to him, repeating his sounds back. And if I dared nod off, he’d manage to seize my blanket and yank it off me (Baby danger! Baby danger! Can’t let him suffocate under my blanket! Man, he knows how to play me). At one point I awoke to him yanking my hair. So much for the 10 inches I cut off. We’ve been reading books all morning, aside from the nap that was required for both of us. He’s also getting pretty good at feeding himself his bottle, although he needs help with the second half because the concept of tipping the bottle hasn’t quite taken hold. We started sippy cup training, which is going great (insert sarcasm). He hates the sippy cup so far. We started with a regular one with a hard plastic mouth piece. That was a resounding “oh hell, nah.” Then we got one that’s flexible like a nipple but shaped like a sippy mouth  piece. He did take a few sips before the resounding, “oh hell, nah.”

Progress is progress, right? Perhaps the fact that it’s 4 p.m. and we’re both still in pajamas means I’m not setting the best example for motivation…

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Is Michael Myers in my house?

We have an eruption. The tooth has made a slight appearance. It’s difficult to catch a glimpse of it though since Connor pretty much always either has his fingers in his mouth or his tongue sticking out. That part of the teething process is charming. Slightly less charming is the “I’m being chased in a darkened parking garage by an axe murderer” shriek he’s adopted over the last few days.  Up until then his new sounds had been grunting and growling, which the pediatrician said is typical of boys. The girls, she said, like to shriek. I’m all for equal opportunity and eliminating gender based stereotypes (except in cases of guys I’ve dated), but at 5 am I don’t want to hear the Halloween soundtrack coming out of his room. His appetite has also decreased significantly, but I’m pretty sure my 7-month-old who is wearing 12-18 month clothing is gonna be alright. Losing a little weight will probably help him with his motor skills anyway, since the physical therapist thinks his rapid weight gain is a factor in his slight motor delays.

I’d post a picture of the tooth, but at this point I’m afraid he’ll chew up my phone.

We have a feeling he might just bypass crawling since that doesn’t come easy to chunky babies and he is pretty strong when you put him in a standing position. Plus, his answer to tummy time is to conk out after a couple minutes because he doesn’t like to work. He’s like his mommy. You want me to do what? Yard work?…mommy crawls behind sweaters hanging in closet and passes out. He might actually just resort to doing the backstroke on land. Lately he’s been scootching himself  several inches up when lying on the changing table and in the crib. So frankly, he probably considers it silly to go to all the effort of turning himself over.

I spent about 3 hours sleeping on the floor with him this morning when his shrieking started up. I’ve done that quite a bit when he gets loud enough. He’s not crying, but proximity to one of us usually quietens him down. So it’s either one of us on the floor, or Chris on the couch and him in the bed with me. Bet the baby book writers would love that. Way to teach him how to get what he wants instead of just putting himself back to sleep. But since he sleeps pretty well most of the time, we don’t care, and they aren’t here to assist me when I stumble into a wall because I can barely open my eyes. I barely consult baby books anymore because the normal every day stuff doesn’t phase me now. So he may not have the perfect nap schedule or all those other details that fill 500 page books. He’s a happy baby.

Besides, he’s gonna provide the sound effects for the trick or treaters.