Our Family

Our Family
"These are the children God has graciously given to me. (us)" - Genesis 33:5

Wednesday, April 26, 2006

Frustration



So, we met with Dr. Russell yesterday. The good news...despite two gastrointestinal illnesses Ethan managed to gain a little less than 1/2 a lb in about a months time. Not exactly what the doctor hoped to find, but better than losing. He is now 25 lbs 1 oz. We're thinking that maybe by his 16th birthday he'll be able to get into a booster seat! :)

Seriously though, the bad news is, the doctor has decided to put Ethan on a couple more medications, and even talked to him, (man to man!) about what he needs to eat and drink.

He isn't allowed to have water anymore, (although I vetoed that for bedtime, I'm not going to start racking up dental bills in an effort to gain what little weight he can by drinking milk or juice through the night!) Any liquid he takes in must be milk, pediasure, or carnation instant breakfast. Juice is alright if all else fails. We will be using heavy cream in any concoction we make for him that requires milk ie: mac and cheese.

We went to the grocery store and he chose Classic French Vanilla Instant Carnation Breakfast, and Chocolate Pediasure for his drinks. Now, you'd think like most kids he'd be thrilled to have a milkshake all day long. Oh no, it took him ALL day to drink the carnation breakfast, and even though he kept begging for the choc. shake at dinner time, it is now, just about 8am the following day and he still won't even try it! We even went out and found new insulated cups that aren't little kid sippee cups. He picked out the color...no still won't drink it.

So, we've resorted to taking one by one his dump trucks away. He asked for two waffles this morning for breakfast, ate about half of one, and decided he was done. As mentioned before wouldn't touch his choc. milk but kept asking for water. He used to get water in the morning with his Glycolax for his constipation. But the doc put him on a liquid form of it so that we wouldn't have to give him water at all. That 40z of water would last him most of the day!!!

As of now, he has lost two of his favorite dump trucks for the day because he wouldn't finish his waffles, and wouldn't drink his choc. milk. I'm at a loss for what else to do. Any and all advice will be taken under careful advisement, as well as be much appreciated. But I will warn you, we've tried a lot of stuff so far. Even the doctor was stumped when we told him about Ethan's lack of milkshake drinking!

The other medication for Ethan is to help stimulate his appetite. This one makes me a little nervous. It is to be given 20 min. before every meal to empty out his stomach and make him feel hungry. Possible side effects...headaches, anxiety and a very rare one of twitching in the face and arms. If the twitching occurs we need to stop the medicine immediately other wise the twitch could become permanent. The doc told me that it happens rarely, and that if it were to occur it would happen within the first few doses of the meds. If we notice it and remove him from the meds. then any effects will be gone no problems. Yikes! I"m not stressed enough, why not add one more thing to it.

Even the doc admitted that I have a lot on my plate with this because not only does he have a restricted diet with Celiac Disease, but he also battles constipation, general bathroom issues (which means they better make a size 7 diaper soon, because containment wise he's going to need it at night! otherwise he'd still fit into a size 4!) as well as a typical "I'm the boss of me" three year old attitude. Every thing is a battle. He'll eat for his Auntie Sherry, when he goes to his friend Jamie's house, or when he's with his Auntie Terrie, but as with most 3-yr olds, it's a battle for good old mom. We've decided we'll have to work out a rotating feeding schedule with all of the above if we hope to put any fat on my child!! :) {Your schedules will be sent to you within the week!:)}

1 comment:

Jennifer said...

And then there is the old reverse psychology of telling him that he CAN'T have it. No, you can't have the chocolate milk. And then only give him a 1/4 glass?