Food, Fabulous Food

Zane loves to eat. Unfortunately for him, he receives most of his nutrition through his gastrostomy tube. Over the years, I’ve given him food by mouth—always for a small taste: yogurt, pureed fruits and vegetables, ice cream, and cake frosting. Whenever he reached the two-ounce mark, and it looked as though he was making significant progress with oral feeding, something would go wonky with his GI tract and I’d have to back off.

Well, Zane’s been doing well with oral feeding again. He’s even joined us quite a few times at the dinner table. Yesterday he missed one of his bolus feedings because we were so busy outside the house. Normally, I take a g-tube feeding along but didn’t yesterday. Didn’t think I’d need it.

One of Zane’s goals is to ultimately replace one of his bolus feeds with an oral feeding. I tried it last night at dinner. I made an acorn squash soup (something only he and I like) in the Vitamix. I poured 40 mL of the soup for him in one bowl along with 40 mL of his formula in another, which I believe tastes pretty good (yes, I sampled it!). He ate it all by mouth and gestured for more. I so wanted to give him more food, but know that he often pays the price by overeating by mouth (retching, vomiting, you get the picture). But last night, he handled the meal amazingly well! He ate nearly 3 ounces by mouth. I know that’s not a lot to most of us. But it’s a huge amount for him. The most he’s ever taken by mouth in the past is 2 ounces, always upchucking it after the fact.

I know to not get my hopes up too high. I’ve learned my lesson over the years. But…but…this is exciting! It really is. I don’t think Zane will ever be off his g-tube completely. But to see him eat by mouth brings me so much joy. And I know it does for him, too.

One Hundred Forty-Nine Minutes

Life just became busier (if that’s even possible). I’m extending my business—branching out, if you will—to encompass varied aspects of the writing and publishing industry. Hopefully this means positive things are ahead. And, after months of searching, I finally found a job outside the home. With all that, Zane’s schedule is also rapidly filling. And Justin and his brilliance always keep me on my toes. Therefore, blogging will slide down the priority list for me, so I may not update Zane’s blog as often as I like or as much as I should.

Even in the midst of all this busy-ness, Zane and I spent 149 minutes at the pediatrician’s office yesterday.

21 minutes in the waiting area

36 minutes in the exam room (blood pressure, then more waiting)

92 minutes with the doctor

That’s a long time for me (and I have more patience than almost anyone I know) and way too long for Zane. However, he was a real sport. He’s an absolute rock star when it comes to handling just about anything. But, in the end, the wait was worth it and the appointment was productive. Bottom line: Zane has a lot of appointments on the horizon. But his main area of concern right now is his spine. He needs to see an orthopedist asap. The curvature is significant. It’s something that someone in his past medical history should have addressed much sooner than yesterday.

On the neurological front, things have improved. I called Zane’s neurologist about the medication side effects and my grumpy and lethargic little man. She pulled back on his Keppra dosage, which has reduced the irritability significantly, while the yawning and lethargy still remain very much in place. He is still not the old, happy-go-lucky Zane of the past, but hopefully he’s moving in that direction as he acclimates to the seizure medication increase. However, he’s not had a clinical seizure for over two weeks. So that’s very good news. And…he’s completely weaned from the second medication.

So, overall, things are good. Busy (at times, hectic), but good.