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…