I’ve really got to use my imagination
To think of good reasons
To keep on keepin’ on.
Got to make the best of a bad situation...
Gladys Knight & the Pips
Like a centipede doing fan kicks, the shoes keep dropping around here…
Just when I am ready to blog about some wonderful thing, something crappy happens to balance it out. I am definitely feeling the fatigue of the roller coaster that is my life these days.
We still haven’t ironed out the ear mystery —that’s kind of an ongoing saga for now —and Nik has recovered from his summer cold OR reaction to his DTaP booster from last week. In fact, he got rid of it so nicely…by giving it to me! Yeah, life is so not fair sometimes, is it!?
Yesterday was Nik’s last day of summer school for an entire month. Oh boy, am I ever going to be one busy mama. There are moments I am utterly exhausted just thinking about the things I need to do with Nik each day in order to keep him on a relatively even keel until school starts again.
I was able to get the Rx from our pediatrician for the levels of therapy recommended by the early childhood development team which evaluated Nik back in February. We’ve been reluctant to push the issue with school because, frankly, they just don’t have the resources —the actual bodies with the actual time to give —to provide the level Nik truly needs. I’ve been hesitant to go through insurance though because then it’s a slippery slope of school saying “If insurance is paying for it, it must be medically necessary so we won’t provide these services.” On the other hand would be insurance saying, “Nope, we’re not paying for this; it’s educational!” Damned if we do, damned if we don’t.
So we simply haven’t…until now. Now that we’re through the IEP reclassification and we’ve set the expectation that the frequency and duration of Nik’s related services needs to dramatically increase, I found a place here in town for Nik to get PT, OT, and Speech therapy during his summer break. It’s run by two women (one is a PT, the other an OT) who have been working in a combination of schools and hospital settings for many years. They were smart enough to see the genuine need in our town and I am grateful.
Nik, Niksdad and I went on Wednesday afternoon to tour the place (and drop off the doctor’s referral). Niksdad and I were really impressed and Nik took to the two therapists right away. We go for full evaluations on Monday and Tuesday and they can start services right away! I am so thrilled; the idea of going an entire month with NO therapies at all just wasn’t acceptable. Nik is making such tremendous progress that we really feared some regression and a significant recoupment or “ramp-up” time when he returns to school.
So here I have this rosy vision that we might go the therapies in the mornings and be home for lunch and nap, followed by afternoons spent either at the park or at my sister’s pool. The idea of such a structure for the next month is daunting but exciting. I think Nik will make phenomenal progress with so much therapy — twice a week in each of the three disciplines! We’ll see how close we actually come in reality! LOL
Niks teacher, Miss J, told me yesterday that Nik has been making tremendous progress in wearing his glasses lately and sitting still for story time. We used to have to use arm restraints/braces to keep Nik from tearing off his glasses. It is not what we wanted to do but felt it was necessary to protect Nik’s left eye (which has fairly close to normal in vision) and the remaining vision he may have in his right eye. Miss J also told me that Nik has been more actively engaging in some of the sitting/table activities lately —moving from one activity to washing his hands in the sink and going back to another activity. Still a bit unfocused but much better than he has been.
Of course, the day I was going to brag about all of the above, is the day that I got ill, Nik’s ear flared up again, and the area around Nik’s feeding tube site (called a stoma) became so inflamed and tender that he would cry if we even tried to touch it, let alone put the tube in. Not a good thing for a kid whose sole source of nutrition is that #$^%$ tube.
Yes, I get very resentful of the power that tube has over our lives —our ability to do things spontaneously (that would be none), the ease of finding a babysitter (non-existent unless the kid is already asleep!), the need to micromanage Nik’s nutritional intake (especially at school), and the sheer amount of stuff we have to travel with just to go to a doctor’s appointment —we must be prepared for an extra meal on the go, Do we have enough formula, did we remember to bring the 60mL syringe and water to flush the tube, Nik’s meds, etc. Somedays I handle it the same as breathing; I don’t even give it a thought. Other days, though, it is the albatross around my neck which pulls me under the surface of despair and frustration.
Yesterday (and today!) was one of those days. We ended up having to take Nik to see the GI nurse so she could check the site for infection. Fortunately, there was no sign of obvious infection but there was a large buildup of granuloma which had started. (That’s an inflammation of the skin which can build up and cause a tender ridge to form around the opening where the feeding tube goes through the abdomen. In Nik’s case, it’s very painful.) The treatment for that is to cauterize the skin using silver nitrate sticks. Yeah, Nik had to get his tummy burned yesterday.
I have sat and held my micro preemie son while neonatologists tried to insert PIC lines and watched the nurses draining my son’s chest tubes after heart surgery. Those pale in comparison to watching my son writhe and scream in pain and anger (at being restrained) as the nurse jams, literally, fistfuls of silver nitrate sticks (think long skinny swabs that burn like hell) INTO and around his abdomen. I handle it because I have to but I want to cry as hard as Nik does. My usually non-snuggly boy is a limp, clingy mass of hysteria by the time we are done. Somehow, Niksdad always manages to be at school or work when these appointments happen…
For some reason, Nik took so much longer to recover from the procedure yesterday; he usually is fine by bedtime or sooner. He cried his little heart out the entire drive home (an hour) and didn’t stop when he was in Daddy’s arms. We let Nik play quietly for a few minutes as we started to get his pump ready for dinner, knowing full well that he wouldn’t last to his usual bedtime of 7:00 pm. Within five minutes we saw this:
Yep, Nik was sound asleep sitting up by his “castle” toy. Bless his heart, he slept through a diaper change and putting on his pajamas, Daddy carrying him upstairs to bed, AND putting in the tube to give him a feeding while he slept. We don’t like to do that because of the whole reflux issue (well, that and the fact that Nik nearly strangled himself one night by getting tangled in the tubing). So I sat in his room in the dark for an hour as Nik had dinner. It was only 4:30 in the afternoon.
After a slightly bumpy early part of the night —Nik woke very fussy around 6:30 pm and continued to cry and fuss for an hour and a half straight —Nik eventually settled in for a solid night’s sleep. Wish I could say the same. My cold made it challenging to breathe much. I am not sure if it was the cold medicine I took or the small glass of wine I had at dinner, but I had the MOST BIZARRE dreams!
I dreamt I was pregnant (um, not even possible!) and that the baby was kicking me in the kidneys. Donald Trump was my OBGYN and he was trying to induce labor by doing some very unprofessional things to my breasts. EEEEEEEEEEWWWWWWWW. I woke up feeling not only weirded out but even more ill! (Shudder). I gotta stop reading those trashy novels while under the influence of cold meds, apparently!
So, over here at sleep-deprivation, high-frustration central, we’re hanging in there…and waiting for the centipede’s dance number to end.