Microwaves, Rectangles, and Ellen: 03.11

3.17.2011

"Mommy, how did your butt get so big?"

Sigh. Kids say the darndest things don't they?

Jackson is finally, finally better! He went swimming yesterday with the adaptive phy ed teacher and friends from school. He missed last week, so he was happy to be back! J absolutely adores Mr. S. He talks about him non-stop. I'm nervous with all the budget cuts in our state, that J may lose Mr. S. I really, really hope that doesn't happen. I'll be standing in front of the capitol with a giant sign!

J has GI today and eye clinic tomorrow. Hopefully, good reports on both fronts, but I'm nervous about the weight loss.

Jameson has been a steady stream of questions lately. If I give a dismissive, "Uh-huh" while I'm doing something, I hear, "Mommy! Put your face at me!" Meaning, look at me and give me an answer. The barrage of questions only stops when he's sleeping.

Object du Jour: MG

3.12.2011

Mystery Diagnosis: Solved

Strep Throat and Scarlet Fever. J was sent home from school on Thursday with a 99 degree fever. He was crabby, runny nose, bit of a cough. He didn't seem too horribly sick. He slept a bit and woke up vomiting. Poor guy couldn't stop. He was burning up. Took his temp, 101.5. Changed his pukey clothes and found a red rash all over his belly and arms. He was drooling like crazy too.

Called the ped. She told me to take him in to Children's. By the time we got there his fever was up to 102.5 and his heart rate was in the 160s. The PA swabbed his throat and gave him some zofran to stop the vomiting. She came back a few minutes later and that the strep test was positive and she also said he had scarlet fever. We came home after 4 hours with more zofran and amoxicillian. Poor Jackson can't catch a break.

He's much better today, still has a runny nose, but no fever. Now we just need to work on regaining the 2 lbs he lost.

Object du Jour: MG and the two baby MGs that were supposed to be for Easter, but Jameson open the package when it came.

3.08.2011

Tell the Easter Bunny I need a laptop and a tent.

Poor J can't seem to shake whatever illness he has. He threw up several times over with weekend and had a low grade fever. He put himself to bed Saturday afternoon and yesterday after school. I'm really worried about weight loss, but I'm keeping him tubed at night and he hasn't gotten sick.

We decided after he fell asleep that germ laden Monkey George needed a trip through the washer. J woke up about 8:00 in tears because MG wasn't in the bed. I felt horrible. Randy ran to Barnes and Noble to get another one (we thought it was best to have a back up), but they didn't have any more. So, I tried to keep J calm while Randy ran MG through the dryer. J fell asleep as soon as MG was back in his arms. I've never, ever seen him so attached to anything before. He's had week or two runs with certain items, but MG hasn't left his side since Christmas. I went on ebay and found an auction for two brand new mini MGs. They look exactly like the one he has except one has a yellow shirt. I'll stick those in his Easter Basket. I think they will make smaller, more portable MG (I hope).

Jameson started asking questions this morning about the Easter Bunny after seeing a story on the news. I told him to make a list of the things he wanted the EB to bring. He told me candy, a new MG, a laptop and tent. Hmmmm, I don't know how the EB is going to fit a laptop and a tent into that tiny basket.

J went on a fieldtrip today to an indoor play area. I hope it goes well. This afternoon we have his 3 year IEP and Jameson's second trip to the dentist. He's all about the free toothbrush!

Object du Jour: MG.

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!