Oh, Simon. You are a trooper.

Over the past week we’ve seen some pretty monumental changes in the little guy. Not simply healing and getting back to his old self, but also learning tons of new (overdue) skills.

A week ago, I noted on Facebook that Simon had started sleeping sitting up in the middle of his bed, not leaning on or supported by anything, and would stay that way for hours at a time. It was astounding, and even more so because of the balance he was sustaining despite his low muscle tone. If he fell over, he would wake up, then sit back up and go back to sleep. A few times, I tried laying him down, but it always woke him up. We just chalked it up to “oh, those crazy kids, what will they do next.” But after two days of the behavior, something just seemed not quite right, so I called the pediatrician, hoping he would confirm it was just a weird phase, all kids did it, and no big deal. Instead, he recommended we call Simon’s surgeon since normal kids don’t sleep sitting up. He was worried that Simon was having trouble breathing lying down, and thought the surgeon might want (another, this would be the third) sleep study.

So I did call the surgeon (well, indirectly, through the nurse practitioner), and they both said that the behavior was Definitely Weird, and that if it got worse, we should take him to the emergency room at the Children’s Hospital and they’d page the surgeon to come take a look at Simon. Sigh.

Of course, the act of calling medical professionals caused nearly immediate cessation of the behavior in question (is it just my kid or is this a thing?), and he’s been sleeping fine ever since. So hey.

Now, I will readily admit that I paid poor attention in Developmental Psychology class (and all my other classes) in education school. I have many justifications for this, and none of them are reasons I would accept from my own students. Development of the toddler brain seemed unrelated to any issue I could conceive of dealing with in the high school classroom.

People! No! It’s always applicable! You never know when you’re going to need that information!

I am getting to the point.

I feel like I might vaguely remember learning or hearing (or perhaps I am constructing a false memory to explain what I’m observing with Simon) that when kids are restricted in one area of development (like, say, having their arms restrained so they can’t feed themselves, move forward, or play with toys as they were accustomed to), they can compensate by developing in other areas. Of course, I wouldn’t know because I was paying poor attention, which I now regret.

Even if that’s not generally true, oh my goodness look at the neural pathways on Simon. Not only has he learned how to crawl for real (he previously just did a really fast army crawl), but also his receptive language and fine motor skills have…improved.

He used to be obsessed with Todd’s putting a jingle-bell ball into a stacking cup and twirling it around, but if we tried to get him to copy us, he would just throw the toys. Now, he’s putting every toy into every other toy and twirling them around. He stacks, he nests, he balances. He experiments with sizes and shapes. Small objects can fit into bigger ones but bigger ones don’t go into smaller ones. The  orientation of non-spherical shapes matters when you are using them as construction elements. And so on and so on.

He also responds appropriately when we ask him questions like:

• Do you want to dance?
• Simon kiss mama?
• May I have a turn?
• Where is Mama’s nose? Hair? Mouth?
• And of course “Do you want your bottle?”

“Bottle” in fact is one of three signs Simon uses (the others being “all done,” which he only sometimes uses correctly, and “dance,” which he always uses correctly). He talks about his bottle a lot, and I think frequently he’s just talking about it, not asking for it. For instance, I always change his diaper before giving him the bottle, so today, I said “Let’s go change your diaper,” and he signed “Bottle!”

And lastly, my favorite thing: he gives spontaneous kisses just to be affectionate, or to thank me for doing something he likes: taking him to the fabric store, to the airport, dancing with him in the coffee shop, or playing Flying Boy.

He is a wonderful baby.

Apologies to the grandmas, from whose newsy e-mail I’m taking the majority of this post…but c’mon grandmas, you know you want to read it twice.

We met with Dr. Sleep today to follow up on Simon’s second sleep study. We hadn’t met him previously, and we really like him. He’s one more data point in favor of my theory that I really like health care providers (for  my child) who have kids of their own. I guess that’s not so much of a “theory,” per se, as much as…personal preference? Gut feeling? This appointment involved no poking or prodding of the boy, and certainly no looking in his ears (which he hates). In fact, the boy got to sit happily on Mama’s lap and play with his burp cloth and a little blue truck the whole time.

(I should note that in the car between picking up Todd at work and arriving at the hospital, Simon had a complete and utter screaming meltdown. He wasn’t hungry, wasn’t poopy, maybe was tired, but showed later that in fact he was just bored and lonely. As soon as I got him out of the car he was fine. He was making some real “a banshee is terrorizing me and therefore I must replicate the banshee noises” noises. It was both laughable and heart-rending, and actually bothered Todd more than it did me. Which now in retrospect makes me feel coldhearted, but whatever.)

This doctor was the first one in all the professionals we’ve seen who has asked us what we do professionally. I guess if you’re going to show some parents several pages of graphical data, it helps to know at what level they’re going to process it. But it makes me wonder why Simon’s surgeons haven’t ever asked us that – wouldn’t it be helpful to them to know whether they can use the phrase “Eustachian tube” or if they have to explain “…so there’s this ‘tube’ that connects the ear and throat…” (as two of them have done). But I digress. Dr. Sleep, not his real name for those keeping track at home, showed us printouts from the two sleep studies, and it was obvious that the most recent one was lots better. There were some freakishly low oxygen levels at the beginning of the recent one, but that was apparently an equipment malfunction, and indeed, I remember the technician coming in the room several times fiddling with the oxygen sensor. The part of the study from where the oxygen sensor was working properly looked not ideal, but pretty good. Simon had a few apneas, but his sleep and oxygen saturation was much, much improved from a few months ago. As long as nothing with his sleep-breathing changes, he doesn’t need the surgery that would lengthen his jaw and open his airway. But we need to keep monitoring him. As long as Simon is breathing without a lot of effort at night and continues to gain weight (we get another weigh-in on Monday), no surgery for now.

I asked how long we would need to be monitoring his breathing, and Dr. Sleep told us “probably until he stops growing,” which is about 19 years of age or something. I guess as doting parents, we’ll still be sneaking into his room before we go to bed to watch him breathe up until he leaves for college anyway, so no biggie. And if he goes to Rice, the Houston grandparents can take over.

However, we get to do another sleep study in six months to see how things stand. By that point, I’ll be such a sleep study expert that I ought to ask if I can do the sensor hook-up myself. Okay, no, but I will be an expert at using the waffle machine at the complimentary breakfast at the Marriott Residence Inn, the official sleep study hotel. And next time, I’m totally taking advantage of the king-sized bed for sleep and not for sitting next to on the hotel couch while I fart around on the internet.

In the meantime, this winter, we’re supposed to try not to let Simon get a cold, since that will stuff him up and inhibit his breathing. If I can figure out how to keep him from getting a cold, I will write another blog post about my secrets for all you parents out there.

Our next adventure happens on Monday, when Simon gets to undergo a CT scan ordered by his plastic surgeon (the one who will be doing his cleft repair). I originally thought she wanted the scan because they were going to go ahead and do the jaw surgery and this was their way of telling us. But she really just wants to see how his jaw is structured, which will apparently give some insight into whether it’s a small jaw, large tongue, or some other airway issue that gives him the breathing difficulties when he’s on his back.

However, doing a CT scan requires one to lie very still. So still, in fact, that no one trusts a five-month-old baby to do it on his own. So Simon and I get to undergo an adventure called Sedation Preparation — it rhymes, see — on Monday. He’s allowed formula up to four hours beforehand, and clear liquids up to two hours beforehand, and they really want me to deny him his nap so as to make him as naturally sleepy as possible for the sedation. Simon’s pediatric advice nurse said the clear liquid that will “keep him the most pleasant” in the pre-sedation period is pedialyte, so I guess that’s what we’ll do. I just have to believe that Simon won’t think I’m being mean on purpose, because he loves me or something. I’ve found, though, that when he wants to sleep, nothing I do (even singing “No Sleeping! No Sleeping! Wait for your Bed!” on the bus) will keep him from it — he’s half Melton after all. So I fully anticipate that I’ll refrain from feeding him, keep him awake through relentless poking and singing, only to have him conk out on the car ride to the hospital. I’m trying not to think of Sedation Preparation as “this terrible ordeal we have to endure,” but instead of “a typical Monday! with coffee for Mama!”

In other news, he’s now got three teeth. We’ve tried many times to capture them photographically, but Mr. Sir is pretty sly and closes his mouth just as the shutter opens. He has the two in front on the bottom and one weird poky thing off to the left where the molars are/will be. Other people have corroborated the weird poky bit. We think he’s working on another one since he’s been uncharacteristically cranky. Tylenol does seem to take the edge off, though.

We’re really thankful for the recommendation of “no surgery for now” and continue to pray that his jaw grows out on its own. This whole process has been really educational, but we’ll be glad when it’s all over and Simon doesn’t need any more special care, even if that’s when he’s a nineteen-year-old college student whose grandparents need to poke him in the ribs to make sure he’s still breathing when he’s been crashed on the couch for three hours at their house for Thanksgiving.

Last night, Simon did his second sleep study. The first one (two and a half months ago) was inconclusive, which is to say that the data were really dismal (showing “moderate to severe obstructive sleep apnea”), but he’d had a terrible and atypical night, so no one knew whether he always had bad nights or if it was just that one time. So his doctors wanted to try again, which caused me no small amount of apprehension.  As Todd pointed out at some point, “If Dr. Sleep wants Simon to have another sleep study so badly, maybe he wants to take care of Simon that night!”

I should mention that the whole point of these sleep studies is to see if Simon is getting enough oxygen while he sleeps. Since he was born with such a small jaw (due to what is known as the Pierre Robin Sequence), his tongue lies farther back in his mouth and can (does?) obstruct his airway when he sleeps. As a result, he has gotten special dispensation from his doctors to sleep on his tummy, which may be one reason we usually get eleven uninterrupted hours from him at night. But are they eleven oxygenated hours?

Last night’s study (which we’ll call Number 2) was much, much better than the first one (Number 1). Let me compare:

No 1: Checked in at 8pm, and wire hook-up completed around 9:30 or 10pm — many, many hours past his bedtime, and frankly, kind of close to my own bedtime. Did not set the stage for “typical night.”
No 2: I had the foresight to ask for early check-in, which the hospital kindly accommodated. We arrived at 6:30, I fed and changed Simon, and he was hooked up by 8:00. He actually fell asleep mid-hook-up, only an hour or so after his normal bedtime.

No 1: Technician hooked up wires Very Slowly. This was likely because I asked a million questions about what everything was for and he politely answered, but this slowed him down.
No 2: Technician (different guy) paid attention when I mentioned Simon’s 6:30 bedtime, and did the speediest hook-up I could have asked for. When he had to leave the room to check the control booth, he ran — literally. He also kept apologizing to Simon for taking so long. I kept my mouth shut, although I did have questions I wanted to ask. Nothing affecting Simon, just general science-teacher curiosity that really didn’t need to be entertained.

No 1: Simon kept having problems with the toe oximeter (which measures oxygen levels by shining a bright red light on the big toe), which the technician had to keep coming in to fix.
No 2: Still had oximeter issues due to Simon’s sweaty feet, but the technician, a father of five, was an expert at baby-sock-removal and -replacement. Rather than trying to stick the sock on the foot, you have to sort of invert the sock and make it swallow the foot, as it were.

No 1: Simon woke up every thirty minutes screaming and Mama got very little sleep.
No 2: Simon had two freak-outs. One at 9pm, before I went to sleep, and one at 12:45am, which was embarrassingly soon after I had turned out the light for the night. What can I say, I was just farting around on the hotel’s free WiFi and reading Little Women (which is extremely moralizing but someone was about to die but didn’t). It took twenty minutes to calm him down, but then he was out until 5:30am.

No 1: Lots and lots of hair goop. Exceedingly much hair goop. Disgusting amounts of hair goop piled in mounds on his scalp.
No 2: Hair goop used sparingly, with Simon’s goopy hair plastered over the electrical leads to cement everything together. Much easier to wash out, and touching Simon’s head was way less disgusting.

No 1: Wore short sleeves. Simon fed twice during the night. Got hair goop in my elbow-crotch twice. Did not come off easily.
No 2: Wore sweatshirt. Simon fed once. Hair goop went on sleeve. Sweatshirt went in wash. Did not touch skin.

No 1: Mouth-nose breathing sensor frustrated baby, who kept moving his lip around trying to get it off. Maybe this was why he woke up every thirty minutes? It reminded me of when you give peanut butter to dogs.
No 2: Different kind of sensor, caused less discomfort.

No 1: Simon peed through diaper, through diaper cover, through pajamas, through swaddling blanket. Was stinky antibiotic pee.
No 2: Simon peed through diaper, through diaper cover, through pajamas (no swaddling this time). Was still stinky, but not like antibiotics.

No 1: Simon woke up hungry, but we had to take off all the leads before I could feed him. This required a lot of screaming, just so Simon could be sure I knew he was still hungry and hadn’t changed his mind. He is a good communicator.
No 2: Simon woke up hungry, but I got to feed him before detachment. This placated him so much that even the sticky face-tape removal didn’t get much of a rise out of him.

No 1: Used warm washcloth to scrub out hair goo. Baby was too small to put in big bathtub confidently, and a little too floppy for head scrubbing to proceed without my being afraid of hurting him. Lots of screaming.
No 2: Full bath. Lots of smiles. Kicking and splashing. Used his own baby wash on his head. Plus, nice plush towel at the end (he seemed to really like the towel, and tried repeatedly to eat it … Poo, I just realized I left his nice unscented baby wash at hotel).

No 1: Simon looked like a cyborg.
No 2: Simon looked like a cyborg but I was expecting it.

So now we wait a few weeks for Dr. Sleep to evaluate the data and make a recommendation. If Simon is still desaturating a lot (i.e. not getting enough oxygen) during the night, it’s possible he will need a surgery (osteogenic mandibular distraction, for you experts out there) to extend his jaw and bring his tongue forward. If he did okay, then that’s less likely.

My biggest source of anxiety with this last sleep study was that the data they collected wouldn’t be representative of Simon’s normal sleep (either better than average, which might mean the doctors were missing low oxygen levels, or worse than average, which might mean they would recommend a surgery that wasn’t really necessary). Although I wouldn’t say that Simon had the most normal night of sleep ever, I feel like it was typical enough that whatever the data show is probably reliable. And that’s comforting. So now I just get to try not to be anxious for two weeks.