Microwaves, Rectangles, and Ellen: Potty all the time

1.10.2012

Potty all the time

Met with Beh Psych about potty training. His suggestions were:

get rid of the little potty
buy a small seat that fits onto the big toilet
make sure Jackson has a foot stool when he's sitting (when you balance, things, um, clench, so it doesn't make things very, um, productive)
give him small things to stay entertained while he's there, books, bubbles, toys
set a timer for 3 mins. When it goes off, he's done whether he went or not. Set timer for 2 hours, try again.

So, pretty straightforward. He loves sitting there. Embraced the new seat without issue, but hasn't gone yet.

Eating has been hit or miss lately. He's decided the cool kids don't eat sandwiches anymore and they've been coming home uneaten. But, he asked for and ate one this morning before school, so maybe that's changing. Again. I've been slipping things in his purees, whole potato/sweet potato, mashed banana, peaches, pureed chicken and for the most part, he's been tolerating it. Every little bit helps.

I'm pretty sure I have the only kid on the planet that asks to do homework. Here's to hoping that doesn't change! It is a little disconcerting when he brings home math work and I can't figure it out. I have two degrees (granted neither are in math, but still) and I can't figure out first grade math. And the really sad part is, if the homework goes back to school done incorrectly, I'm pretty sure the teacher is gonna know that Jackson didn't do it alone. lol

Jameson turned 4 last week! That means he'll be heading off to school before I know it! He chose Red Robin as his lunch destination, I'm pretty sure he's just in it for the balloon. Then on Saturday, we went to Chuck E Cheese. Holy over stimulation Batman! (I'm talking about me here). The kids had fun though (Jackson took 800 pictures on the camera of random people, he couldn't care less about the games). It was really crowded with kids running everywhere. I haven't been in a CEC since Jackson's birthday a few years back and I don't remember there being armed guards at the front door. Scary the way some things have to change.

Object du Jour: The iPad.

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J's History:

Jackson was born July 30th, 2004. He was 8 lbs, 1 oz and 20" long.

Everything seemed to be going well except feeding. J was taking anywhere from a half hour to 45 minutes to finish an ounce of formula. He was unable to latch to breastfeed because of a smaller lower jaw, but "they" told me it would come out on it's own with continued feeding. I also noticed his left eyelid was droopy, but they told me that would resolve itself as well. Same story with his overlapping toes. I had a nagging feeling in the back of my head that something wasn't right. Every time I voiced my concerns, I heard, "Oh, it's just first time mom worries."

At 3 weeks of age, after ongoing weight checks, he was still under his birthweight and continuing to have trouble feeding. His ped diagnosed him failure to thrive and ordered a chromosomal karyotype because of the lack of weight gain and his ears "looking a little funny".

When he was five weeks were told Jackson has trisomy 4p, inverted duplication, 46, XY, dup(4)(pter-p16.3::p12->p16.2::p16.2->qter). This basically means that almost all of Jackson's "P" arm on his 4th chromosome has been copied, inverted, and attached to the tip of that "P" arm.

After waiting several weeks to see the geneticist (with no help from that ped; we started seeing a new ped and we've been with her ever since) we were told he would most likely never walk or talk, have seizures and medical issues and be severely "retarded" (I hate that word).

Jackson has been very healthy, with no serious medical concerns. He has occasional croup/strider episodes that land him in the hospital overnight. We're still working with drs to figure out why these episodes happen. Weight gain has been the biggest challenge for J and he had a G-tube placed in March '06. He had a trigger thumb repaired and wore a DOC Band for 9 weeks due to positional plagiocephaly. He currently has issues with strabismus (wandering eye) and wears glasses to (hopefully) correct it. In July 2009, J was also diagnosed with mild-moderate autism, but not all of his providers agree about this dx.

At 13 months, he stopped breathing when I fed him a baby food with milk in it. Scariest thing ever! After testing, it was determined that he is allergic to milk, wheat, soy, oats and peanuts. He has outgrown all but milk and peanuts. We carry an Epi-pen for him, just in case.

J started to receive physical, occupational and speech therapies at 7 months of age through the birth to three program. Education started at 2 years. J is now in 3rd grade.

I'm frequently asked, "What caused this?" We don't know. J's diagnosis is "de novo", basically meaning of no known origin. Randy and I were tested and our chromosomes are "typical". J's younger brother, Jameson, has no chromosomal issues.

I'd love to hear from other trisomy families!

wjo4244 at gmail dot com

A little about this site...

If you are new here, you may wonder what the title of the blog means or what the "Object du Jour" means. Or why I even decided to start a blog about my child with special needs.

I started the blog almost as a challenge from one of J's doctors who told us not to Google anything about J's trisomy because "no one ever posts anything positive about trisomies on the internet." The Gauntlet was thrown. I'm not saying we haven't had out share of frustrations and scary moments with J, but I wanted to make sure that I put out there the wonderful things he's doing and learning every day in spite of his diagnosis. P.S. I don't follow directions well and I did Google and found almost nothing about trisomy 4p. That's the second reason I started the blog...to find other families struggling to find information, just like I was.

The title refers to Jackson's 3 favorite things: microwaves (he's especially interested in seeing the President's), anything rectangular (remotes!) and Ellen DeGeneres. Ellen has gotten J through some tough hospitalizations and as an added bonus, her name is in the bottom left corner of every episode in a rectangle! Convenient!

"Object du Jour" is J's favorite toy, kitchen utensil, remote, or anything that trips his trigger that particular day I blog. Things that interest him always interest me, so I decided to post them. I'd love to get into that head of his and know what he's thinking about!

1.10.2012

Potty all the time

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