Littlest Blessing

Play Picnic

Eric did well today at the play picnic. He absolutely hates when certain foods touch him but we were able to work through that a bit today.

At first he gagged and vomited a small amount when I squished some food into his hand. Later, I was able to do it and while he didn't like it, he did tolerate without any gagging. Since he doesn't like food and beverages on him, he is learning to properly use his napkin, so win.

We did make a small, but significant change to the Graz method. According to their methods, we are act like it isn't a big deal if Eric eats or drinks. We've tried that in the past, offering food and drink without comment or reaction. It doesn't seem to work at all and in fact Eric stopped drinking completely. Eric is very responsive to positive reinforcement, happily doing something over and over again for claps and cheers.

Today, after not drinking anything for several months, Eric had some sips. Not just water, but tea with sugar and lemon. I was also able to smear cracker crumbs all over his face in play, as well as sneaking a couple on his lips.

Since we are giving Eric small amounts of food, he doesn't have to sit still for 30-45 minutes to prevent him from vomiting. This means we can remove most of his videos and eat at the table as a family. By feeding him at the table, he can begin to associate fullness with the table and mealtimes are now a social event.

A great deal of progress was made today and it gives me hope.

Day 4 of Tube-Weaning

Today's meal plan:

12 oz., Pedialyte, meds, multivitamin, aloe vera juice + Miralax

4.5 oz. Pediasure + 2Tbsp. whipping cream

4.5 oz. Pediasure + 2 Tbsp. whipping cream

12 oz. Pedialyte with aloe vera juice

4.5 oz. Pediasure + 2Tbsp. whipping cream

While sleeping Eric will get the following:

4 oz. Pedialyte, 1 Tbsp. flax oil, 1 Tbsp. robust molasses

6 oz. Pedialyte

Todays's calories will be brought up to a 1000 and total volume will be 52 oz.

Still no real signs of hunger, but yesterday Eric was at least playing with the crackers and juice. We'll have a play picnic today and get him messy with different types of food. The goal with that is to help him lose his fear of food by playing with it.

Day 1 of Tube-Weaning

I think the hardest part of this wean is going to be going against my instincts and fighting my natural impulse to feed my child. We've worked so hard to get Eric up to 12 to 13 ounces per feeding and now we are reducing it to nothing. The water will be the last to go since we live in a very arid and hot climate. Even then we will sneak in a few ounces here and there while Eric is sleeping.

Today's meal plan:

12 oz., water, meds, multivitamin, aloe vera juice + Miralax

10 oz. vegetable and juice

10 oz. protein meal

12 oz. water with aloe vera juice

10 oz. fruit and juice

10 oz. concentrated goat milk and probiotic cereal

Weight: 33 pounds

Every day we will reduce by 2 ounces each meal until he is down to nothing. Then we will cut out some of the water during the day and giving Eric liquids and calories at night while he is sleeping. We did try a 72 hour wean and while unsuccessful, we were able to get him to start drinking liquids again.

While we were on vacation last summer, Eric was eating oyster crackers. He would suck on them until they were dissolved. In this manner, he would eat 4 to 5 at a sitting. When we came back, he stopped. I'm not sure what exactly it was that encouraged him to take a chance and why he stopped trying. What I do know, is that he tried and it is possible.

Tube-Weaning

Tomorrow will be day 1 of Eric's tube-weaning. We will be following a similar path to http://www.thecrunchyandthesmooth.com/heaths-wean-lessons-learned.html

We have obtained permission from the pediatrician and Eric is in good health. With luck, Eric will be eating before pre-school starts up again in August. Fingers crossed.

This is his current meal plan, this is all through the tube as he doesn't take anything by mouth:

7 am: 12 oz., water, meds, multivitamin, aloe vera juice

8 am: 12 oz. vegetable and juice

11 am: 12 oz. protein meal

3 pm: 12 oz. water with aloe vera juice

4 pm: 12 oz. fruit and juice

7 pm: 12 oz. concentrated goat milk and probiotic cereal

Finally an update

Been a long time since we have posted anything here, I figured I would do an update. Eric has lost some weight and is at about 30 lbs but is now about 36 inches in height. Eric continues to take all his food and drink through the G-Tube, but will rarely sample a cup of water or milk.

Eric is just recovering from his first ever ear infection, which he did not at all like. Go figure on that. Did an updated visit to his endocrinologist and it looks like he will finally come off the Levothyroxine soon. Yeah!

Eric had a thorough review of his medical records and his therapy evaluations, Eric is currently very developmentally delayed in all 6 categories. The bright side is he qualifies for a special preschool class and during the evaluation today, he absolutely loved the teacher he will have for this class. It is our hope that being exposed to other children will finally kick start him into communicating with signs or verbally and help him catch up developmentally.

Eric is almost 3 years old now and has come so far. He in general is a happy little boy who loves to explore and get into trouble along the way. :)

To whom it concerns...

I realize that I have not been posting very frequently and that was deliberate. I have been under attack (by persons who shall remain nameless) for having the audacity to use MY blog to vent, to share my own experiences, news articles etc. No, this is not just a blog to celebrate Eric, but to share my personal experiences raising a micro-preemie. To let another person raising a special needs child know that they are not alone.

Because of these attacks, I have not felt free to share as openly as I would like.

I've decided not to allow these bullies to push me around any longer.

I have every right to limit the amount of pictures of my son on this blog and to watermark them. It is for privacy reasons. There are people who steal pictures of other peoples' children and use them for their own creepy needs. If you are my friend on Facebook, you would already have access to these pictures. Those are the only people allowed to see them.

I owe you nothing. This is my blog and my child. My child does not belong to you. I am not merely the womb donor. You are messing with the wrong person. It is disgusting and pathetic how obsessed you are with a child you barely know. The very fact that you demand things, that you have no rights to, is frankly, very disturbing. You do not have the right to demean and belittle me for not doing the things you want me to do. I think you and your ilk need professional help. Please consider it.

If you don't like it, move on. Your readership is not needed nor wanted. Go harass someone else!

A Mother's Day Poem

This beautiful poem was sent to me by a friend and I wanted to share it with other mothers of children with special needs.

A Mother's Day Poem for Mom's of Special Needs Kids
Why Special Needs Moms are the greatest in the world.

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT, nay saying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders and students. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.