Something is Wrong

Zane has been absolutely miserable since the end of the school day yesterday. We’re not sure why. The problem is, there were a number of factors that may have caused his misery, and he doesn’t have the words or a communication system to tell us what it is.

 

1) He ate paper in school yesterday. (Stomach issue?)

2) He banged his head hard on the PE floor yesterday (head trauma or pain?)

3) There are tons of bugs floating around in the elementary-school-o-sphere (sickness?)

 

It’s hard to say. We did the requisite checks: temperature, throat, bumps on the head. All seem fine. We administered the requisite care: heating pad to the stomach, Tylenol for pain, Pedialyte for rehydration. Nothing is working.

 

He cried almost immediately after school ended yesterday and didn’t stop for probably two hours. Now each time we look at him, he makes a pouty lip and gets ready to cry. It’s so hard to see him this way and not know what to do to help him.

 

One thing is clear: there has to be more training at school. While I know both the paper-eating and head-banging incidents were accidental, they cannot happen again. This is precisely why I am controlling, hovering, overly protective, and afraid to let go. Because when I do, things like this happen. Pretty soon, my trust in others protecting Zane is going to be next to nil.

 

Okay, I’m through ranting. Zane is usually so very happy and easy-going. This is so not like him. Something is clearly wrong. If any other Trisomy mommies (or daddies) have any ideas, please let me know.

Letting Go

As I sit here tonight with both boys tucked safely in bed, I cannot help but fret a bit. Tomorrow is the first day of letting go. Zane is in kindergarten. At a new school. I've been hanging out with him for the past few weeks, making sure everyone who cares for him is properly trained. They are not fully there yet. There have been mistakes: broken hearing aids, some minor issues with the tube feedings, not knowing him well enough yet to know what he's communicating. There will be more. There always are when someone else takes the reins with Zane. It's not me being critical, it's simply reality. But they'll get better with time.

I'm not worried about their treatment of him; everyone is super kind. But no one cares for him the way I do. As his mother, I am 100 % fully invested in his well being. Plus, I know the ins and outs of his care like no one else in the world because I do it all the time. I can usually read his wants and needs and meet them without frustration. Maybe if Zane was a verbal child, I wouldn't be so on edge about leaving him with people I barely know. He can't tell me if he has a bad day or if something goes amiss. But tomorrow I'll do my best to let go. To send him out into the world without me, albeit for seven hours, because that's what parents do. But I'll think of him throughout the day, wonder how it's going. Because that's what parents do, too.

Home Again

Many of you may or may not have known that we went to Denver. Again. Just about every time we go, Zane winds up with an illness. Must be all those germs in the clinics or lingering in the places where we stay.

 

Zane and I arrived home last night. On the ride, he threw up twice. With his reflux issues, I didn’t think too much of it. But twice in the night—once at 10:00 pm or so, a second time at 2:00 am—he threw up again. Plus, he was running a low-grade fever. We kept him home from school today, and he is getting rehydrated and rested as we head into the weekend. He should be ready to return to school on Monday.  

 

In Denver, Zane has his post-op appointment with the eye surgeon. I knew the doctor’s reaction before even traveling to Denver: absolute disappointment. Whereas in July the surgeon was cheerful and talkative, this time he was straight-faced, disenchantment spelled out on his face. In essence, the surgery was for nothing. While there is no rush to have it redone this year, Zane’s surgeon wants to revisit the notion of reoperating within the next six months. So we’re potentially looking at a spring surgery. I plan to keep in touch with him by phone and email, leading up to our spring trip to Denver.

 

Zane also went to his cardiologist for a routine check of the heart. I was nervous going into this appointment. I think I am now programmed to be ready for bad news. Zane had an echocardiogram (which he loved) and an EKG. I was very relieved when the cardiologist told me everything is still stable. Zane won’t need to return for another two years. She will continue to watch that bicuspid aortic valve for narrowing and leakage.

 

We’re glad to be home. Zane was quite vocal during our stay this time around, which made it hard to read or get much writing done. As always, the people at the Ronald McDonald House were so welcoming and wonderful!