This And That

It has certainly been busy around here, no denying that. Holidays, birthdays, a baby brother about to make an arrival, on top of the normal medical stuff that we're always dealing with. So here's a little update for those who are interested.

Jordan has been very awake & alert in the afternoons and evenings for the past few weeks, since we stopped giving her an afternoon dose of Tranxene. Here she is a couple of nights ago while sitting in Devon's lap. She rarely had her eyes open & was this awake before. Catching these moments with a camera was virtually impossible, but not any more!
Tranxene is a drug mostly used for anxiety, and was first prescribed to her over 2 years ago when she was coming off the effects of ACTH (steroids) that controlled her brain-damaging Infantile Spasm seizures. But, because it also has anti-seizure effects, no one ever wanted to take her off it completely. With a hefty dose of Tranxene, in addition to Keppra & Depakene, we enjoyed a full year with virtually no seizure activity. However, Tranxene is very sedating, so Devon and I decided to work with her neurologist to see if we could decrease the dose so she could "wake up" a bit more -- and of course, keep seizure control. Success! Well, mostly success. We are seeing a few very small seizures each day, but it's worth it to us so far to use the smaller dose of Tranxene to allow her to be awake & alert for so much more of the day. She's "babbles" more, and moves more, and it's worth the trade-off (as long as the seizures stay the same or improve, but if they get worse we'll probably have to add it back).

One of the many reasons we wanted her to be more alert during the days is because she's off to pre-school in January. Her home-health nurses will be going with her (for 1-on-1 care), and if she's in school for therapies & education, it seems like it might be a good idea for her to be awake for the activities. It's taken me almost a year to come to terms with the idea of sending her to pre-school, I feel like we are basically sending her to the moon, but at the same time, why not!? All the other kids do it, right? She'll get her therapies & might even reach some developmental milestones, and if nothing else, she will get to know the world and the world will get to know her. I am fascinated about the other children will interact with her. I'm sure it will be a positive experience for all involved. At least at this age, right? For now we're just trying it out. If we find that it's too overstimulating, overwhelming, a logistical nightmare, or she is exposed to too many germs & gets too sick we'll re-think it and have school come to her, which is another option. But for now, off to the moon!

Avery & Devon are doing well, despite both having minor colds. Nothing to stop them from getting ready for baby brother, birthdays, and Christmas. Avery is counting the days -- 7 days until Winter Solstice, 8 days until her 5th birthday & baby brother's scheduled arrival.

Yes, in 1 week from today I'll be packing my bags and heading to the hospital to get "baby basketball" -- his new nickname -- out! There are so many things for me to worry about that I have almost entirely given up worrying about them, and am now focussing on my sore back & hips, and exhausted body. Why can't I just bank up a bunch of sleep between now and then, instead of "practicing" for a newborn by only sleeping 1-2 hours at a time? Ugh, okay, I'll quit complaining.

We saw the perinatologist on Wednesday, who says that his brain development is wonderful. Everything is there, and is the right size. The rest of his anatomy is correct, too, and I don't have any signs of polyhydramnios at all this time (in fact, his tummy & his bladder were full, and my fluid levels were 50th percentile -- totally normal). We don't have much to go on as to what went "wrong" with Jordan, but we do know that her brain didn't grow right. Had we been looking at this level of detail, we probably would have seen these malformation in utero, but we weren't looking. The only thing that was strange with Jordan and my pregnancy with her was the excessive amniotic fluid levels -- she wasn't swallowing the fluid like she should have been.

The only other notable thing is that the little mister in there is fairly small. His growth seems to have slowed. He was estimated at 5 lbs 5 ounces last week, which at 36.5 weeks is only 17th percentile for size. However, if he does gain a half-pound per week until he's induced at 38, he'll be pretty close to Avery-size (she was 6 lbs 7 ounces when she was born at 38 weeks). Jordan, on the other hand, was a whopping 8 lbs 5 ounces at 39 weeks -- which is a big difference we were told -- usually babies from the same mother are all about the same size, boy or girl. So, even though he's small, it just makes him more "Avery-like" in my opinion, which is a good thing -- as we all know how smart & healthy she is!

So, fingers crossed for health, and counting the days -- unless he decides to show up early, as I'm already dilating and he's already in position. Yikes! I don't have nurses scheduled until the 22nd to pick up the slack with Jordan while I'm in the hospital though, so I hope he hangs in there until next Monday!! That would be a scheduling nightmare. . . . ;-)