Hey now you’re an All Star get your game on, go play
Hey now you’re a Rock Star get the show on get paid
And all that glitters is gold
Only shooting stars break the mold
All Star by Smash Mouth
Well, as I wrote in my last post, just as the ice was thinning and we were on the verge of falling in, things have done an abrupt turn around. I’m not naïve enough to think it’s permanent, but it’s NOW and I’ll take it for as long as it wants to last!
For those of you that follow me on Twitter or Face Book, this is old news but it certainly bears repeating and celebrating all over again —Nik slept twelve hours last night!
Now, to be completely honest it wasn’t all the way through; he did wake very briefly twice. But he did make it for a full eight hours uninterrupted. And the two times he did wake? He settled much quicker than he usually does. The pain seemed just as intense but more fleeting.
I need to back up a bit and tell you about our visit to Nik’s beloved Doctor Mary yesterday afternoon. Ostensibly, the visit was mostly for a weight check to see how he’s doing on putting back the weight he lost while fighting with his recent ileus. He’s regained about ten ounces out of three and a half pounds lost. Not bad considering it’s just as unhealthy for him to regain it too quickly. Doctor Mary was pleased with that. Still, he doesn’t have any reserves to withstand more losses.
Doctor Mary was not pleased with the way Nik looks overall, though. She’s right; he looks better than he did ten days ago but he still doesn’t look like my robust, healthy, rambunctious little guy that she’s grown to love. We discussed our thoughts and observations about the changing nature of Nik’s nocturnal waking and his possible food allergies. So much hinges on the results of those blood allergy tests; we hope to have results within the week.
Nik has made such great progress in his ability to communicate about his pain; he can now sign “yes” if I ask if there’s a pain in his head or belly and he can also place my hand on the source of his pain. Lately, in the middle of the night, he indicates the pain is in his head; he usually takes both of my hands and wraps them around his temples and forehead and squeezes tightly to indicate a desire for deep pressure. Often, these episodes are then followed by painful and difficult gas. Occasionally, during the day, they seem to be preceded by eating.
Doctor Mary voiced a concern about abdominal migraines which may or may not be allergy driven. Until we have the test results it’s difficult to isolate a potential cause. However, the nature and timing of the episodes do seem to indicate some sort of migraine activity. It stands to reason that Nik is more subject to migraines as they run in families and both my mother and I get terrible migraines.
Once we know the results of the allergy tests, we will pursue that avenue with our neurologist, the wonderful Doctor G (not that one, this one). I suspect it will be a bit before we hit on the right answers but it certainly feels like we are moving in the right direction now.
Meanwhile, Nik continues to flat out stupefy us with some of his remarkable gains in eating. He is now consistently eating at least fifty percent of his daily nutrition by mouth and is learning the mechanics of chewing. Right now he’s in the “munching” stage —where the jaw simply goes up and down and mashes the food as much as possible. His desire for greater variety and textures in foods is difficult to keep up with as I try to balance safety from choking with his desire to stuff his cheeks like a little chipmunk and work things through for himself.
Last night’s dinner tipped the balance. Nik had already eaten his dinner and was sitting at the table with us as we ate our salads and steak. Nik always likes a taste of whatever is on our plates so I wasn’t surprised when he signed “more, please” as he looked longingly at the juicy sirloin on my plate. Grudgingly, I sliced off a thick piece —about the size of my index finger— and sacrificed it to the eating machine Nik.
Much like the pancake incident, I expected Nik to simply lick and make feeble attempts to bite the piece of meat and then drop it on the floor for our two greedy cats to fight over. Apparently —AGAIN— I was wrong; Nik stuffed the strip of steak into his mouth and closed his teeth around it. He proceeded to bite off a large hunk of meat which he then spent a good ten to fifteen minutes munching and trying to figure out how to break it down to swallow. Optimist that he is, Nik even asked for “more” while he sat chewing.
He never did quite figure out the actual chewing but he managed to create a nice mashed, pulpy mass which Niksdad had to extract before we let him down from the table. Nik expressed his displeasure quite vociferously! I think he would have been happy to sit there all night working on that one bit of meat. I suspect it won’t be much longer before he figures it out.
In addition to his steak, Nik had quite a bit of mashed potatoes, turkey and carrots —leftovers from our dinner out on Thursday. Most of his evening nutrition was eaten instead of pumped —though he did have a small bit of formula and water to make sure he was sufficiently full to make it through the night. I think that made a big difference in his sleeping and in the lesser degree of his pain last night.
While we wait for the allergy results and wait to figure out the headache aspect of all of this, we’re trying to keep Nik on a mostly gluten and dairy free diet. We don’t do this because it’s an alleged ”cure” for autism but simply because it seems to make his overall system more comfortable. I don’t know if there’s an actual autism-gut connection (the evidence is inconclusive and motly anecdotal at this point); Nik’s gut issues pre-date his autism diagnosis by years as he was born with an intestinal malrotation and has a “short gut” resulting from corrective surgery. We simply do what we do because it works for Nik.
Overall, I think I am seeing the gradual return of my happy-go-lucky, rascally little boy. Each day is a bit more energetic and holds more laughter and music. There are moments that make me worry but those are far fewer than even a week ago. The fact that Nik awoke with songs and laughter today does wonders for my spirits, too.
That kid’s sure my all star!