Sunday, February 28, 2010

Active Mikan

Mikan has been going to lots of new places lately...
-Library lap sit on Thursday-where we saw signs that he is an extrovert
-High School basketball game on Friday-where he enjoyed the bleachers
-Farmer's Market on Saturday-he licked an apple for awhile then threw it down.
-Birthday Party on Saturday-two little dogs provided entertainment.
-Library visits whenever we're bored at home (its within walking distance)-he knows the library sign.

Mikan knows how to get to the library from our house. Therefore, whenever we go for walks that are not to the library he gets upset. Once we make a turn that is not to the library, he does his angry please sign. Also, there are two paths to the library. One is a short cut we can take on a sled, while the other is longer with a stroller. Every time we take the stroller, Mikan does his angry please because he wants to take the short cut.

In our last visit to the library, Mikan was breathing kind of loud and hard. So another kid at the library asked, "Why's he so breathing?" I responded with, "Darth Vader is his grandpa." That kid didn't play with Mikan much after that.

Mikan enjoys going out of the house. Nearly every time I take him out, Jenna gives a "don't be out too long, it's cold out. Really." However, I think outside is one of Mikan's highlights of the day. His favorite highlight used to be "Signing Time." (DVD). Today's nurse referred to me as a "Signing Time Nazi." You're welcome Mikan.

Sunday, February 21, 2010

Get in My Belly

This week we found out that Mikan's scope had to be moved back to the end of March. There is a conflict with Mikan's pulmonologist who is assisting the procedure. This is frustrating because we've had it scheduled for awhile, but there's nothing we can do about it.

On a positive note, Mikan's new g-tube is working out great! So far it is still in his stomach, which is alone enough to be excited about, but his body also seems to be reacting better to it. So far the site looks relatively clean, and it hasn't been causing him pain. In addition, it's less bulky and lays flatter on his tummy. So far, so good.

And with the new g-tube seems to come new eating habits. Mikan has been drinking fairly consistently from his sippy cup (about an ounce per feeding). Today he drank a total of 6 ounces throughout the day! This is a record for him. He's still pretty apprehensive about swallowing anything else, but at least he tastes just about everything before he spits it out.

One of his favorite things to lick lately...chocolate.

Tuesday, February 16, 2010

Valentine's Day

Mikan spent Valentine's weekend enjoying the snow, licking some chocolate, and hanging out in his water heater house.

Wednesday, February 10, 2010

Snowed In

Although Mikan still doesn't drink at every meal, he takes a few sips from this cup a day. Some days he will drink up to two ounces! This is exciting progress. I'd be willing to do a commercial for Rubbermaid (in case anyone reading this works for them).

John and I have been off work the last few days because of snow, so we've had some extra Mikan time. Lately Mikan enjoys walking his radio flyer car around. He still isn't standing by himself, but he maneuvers pretty well with the car. But every once in awhile he will get stuck on the transition trim on the floor in between our living room and kitchen. If he's in a good mood, he troubleshoots himself and rocks the car until it glides over the strip. If he's in a crabby mood, then there's a lot of fussing and whining, and the "angry please" sign until someone comes to his aid. See below for the "angry please" sign.

Friday, February 5, 2010

Virulent Virus

Well we figured out pretty quickly after my last post what was going on with Mikan. He had severe stomach cramps, gagging/wretching, and diarrhea that afternoon/evening. Since his Nissen wrap doesn't allow him to vomit, it all came out the other end (9 diapers from 2:30-6:30 to be exact). Unfortunately, our healthy immune systems weren't enough to avoid this bug, and I suffered a vomiting spell the next day, then our two nurses the following. John was nauseous for a day, but avoided the vomiting. Mikan still has diarrhea, but it's not as bad, so we're just trying to ride it out, mixing pedialyte with his feedings. To top it off, last night he started getting congested and he's had a runny nose all day. Poor kid.

Mikan's new g-tube hasn't been causing any problems, so we're thankful for that; however, since he's contracted this bug, he hasn't been interested in taking anything by mouth, so our glimmer of hope with his cup is on hold once again. It's all a big waiting game.

Monday, February 1, 2010


The Miralax has been working a little too well, so we've decreased the GI doc's recommended dose. Hopefully the blood in his stool was associated with the enterovirus and not a new GI issue we have to worry about. We are supposed to test his stools at home over the next few weeks.

So far the new g-tube is working ok. The extension tubing is more difficult to attach, and the site is still causing him pain, but it's working. We had to apply silver nitrate yesterday because of new granulation tissue growing around the stoma.

Mikan is still digging in his ears and acting pretty lethargic today. I hope this doesn't mean he's still fighting the same ear infections. He definitely isn't himself. In fact, he's just wanted to lay in my lap all day, which is uncharacteristic of him even when he is sick.

Mikan's nutritionist is happy with his growth though. He weighs 23 lbs 9oz and is in the 10th percentile for his adjusted age (20 months). This is good news for his pulmonologist and ENT too since that means he isn't working too hard to breathe while he is capped.

Mikan is demanding my attention right now. Pray that he gets over whatever is bugging him lately.