I’ve been so busy keeping up with Nik lately that I haven’t had a chance to share some quick updates. Sorry! Here they are —in no particular order:
The issue with Nik’s AugCom
devices seems to be nearly resolved. I don’t know if the larger issue is worked out between the managed care organization and the vendors; frankly, I don’t much care as long as we get what Nik needs. I can’t fight their battles for them, too! The short version of the story is that the case manager managed to get someone at DynaVox to agree to order the AbleNet devices for us. I don’t know when they will actually
be ordered and delivered; in the meantime, though, the good folks at DATI
have been kind enough to let us continue to renew the equipment loan until someone else needs the equipment or Nik’s own devices are delivered to us.
Nik’s wild EEG
experience was either really useful or not at all; we haven’t decided. The neurologist told us last week that the results showed no evidence of any seizure activity during the time it was recording. That means one of a few things is possible; either Nik is no longer having seizures (unlikely at this point), the seizures are under good control with the meds he is taking, or his seizures are now less frequent and there simply weren’t any in the twenty-four hour period captured by the test.
The good news though is that the mysterious pain episodes
are not seizure related. We sort of knew that intuitively but it was nice to have it confirmed. That means we are now moving on to the next area of investigation —Nik’s meds.
This past week we did a short trial of increasing one med in preparation for decreasing another; it was a miserable failure
(which is one reason why I’ve been quiet most of the week and unable to do things like finish reading this
book). For the entire week Nik was like someone else’s child
; his personality was more than slightly manic, his sleep was greatly disrupted (and so, too, was mine), and his coping skills deeply
diminished —to the point that even things which used to make him squeal with delight would elicit that reaction and then immediately plummet into a meltdown complete with head banging and thrashing. The doctor had us go back to the “normal” med schedule and dosing after six days of this.
I am ecstatic to report that my happy little boy is back!
We are still not entirely convinced that Nik’s immune system and/or ears aren’t at the root of the mysterious episodic pain. His lymph nodes both in front of and behind the right ear are constantly swollen yet he has no obvious infection. He does get sick more than I think is normal and it always seems to involve his ears and his gut. We’re making another appointment with the pediatrician to discuss a CT scan of Nik’s right mastoid to rule out the possibility of chronic mastoiditis, and to get a referral to another immunologist for a second opinion and testing.
Nik’s overall progress continues to be rapid and positive. He’s still small for his age —only the third percentile for height and twenty-fifth percentile for weight (he’s solid muscle!)—but he is showing consistent and steady growth. Not bad for the kid who started out at nineteen ounces, eh? He’s ambling around in his new orthotics with a confidence and balance that belies his shaky start and extremely delayed gross motor skills; his gait is still uneven and somewhat jerky but it doesn’t keep Nik from getting places in a hurry!. Nik’s also tolerating a broader range of textures lately —showing a willingness even to dip his fingers into yogurt or mashed fruit and to pull a favorite toy out of a box of rice or pile of sand. All of those textures sent him into absolute hysterics just a few short months ago.
On the feeding front, it’s still slow going but with small, steady progress. Nik is taking more initiative with the chewy tube and tolerating it for more bites between food or as a preparation for eating. He’s eating a little bit of food by mouth each day —not enough to substitute for a tube feeding but enough to measure in terms of his overall intake. Nik’s constant favorite is goldfish crackers but he will try some of absolutely everything we offer him; he’s not shy about telling us which foods he doesn’t care for though there aren’t too many we’ve found yet; with Nik, it’s more about the consistency or texture.
Nik’s overall communication skills have expanded greatly in a short time. He is learning, I think, about intent and effective ways to get my attention. Lately I find, more often than not, that Nik is willing to slow down that fraction of a second it might take to show me what he wants; he’s also doing so well at following instructions now. It helps, I know, if I use consistent language with him and give him cues and clues as to what is coming and what is expected of him. The times I forget to cue him as to what’s next are the times I regret the oversight.
I know Niksdad must think I am trying to control his every little communication with Nik but he is slowly coming to understand that Nik needs that specificity and structure to help him keep it together. Something as simple as telling him the sequence of “clean pants and pajamas FIRST, THEN toys” can make all the difference between his joyful cooperation or wrestling him to the floor to change a diaper.
From a social and emotional standpoint, Nik has become very affectionate
; even the neurologist took note of it last week. Nik knows and understands the value of hugs and kisses and uses them liberally —and not just for effect either! I’m always floored when I’ve been out for a while and Nik drops whatever he is doing and comes to greet me with a big kiss. And I still
get choked up whenever I watch the way Nik responds every time his Daddy walks in the room.
Imagine a golden retriever puppy shivering with delight when it sees its beloved master and you’ll get some small idea; it is definitely a visceral response for Nik! When the two of them are playing together or merely sitting side by side on the sofa and Nik leans his little face into his Daddy’s —his hands look tiny as they rest against his father’s cheeks. Sometimes I wonder if he remembers the bond he first formed with his Daddy immediately after birth. He clung to Niksdad’s fingertip immediately after the nurses cleaned him up and the doctor inserted the breathing tube into his miniscule throat and lungs. They’ve been nearly inseparable ever since.
So, in all —in spite of some bumps and turbulence along the way— I’d say things are pretty good right now. And I’m not even afraid of tempting the Fates