Link

Link to Amelia Update on babble.com  This link clears up some questions and concerns people have expressed.  It also shares the big name supporters of Amelia's fight.

Self Portraits...

The return of the Plague

Yay, the Plague is back.  Coughing, sneezing, sore throat, headache; all the good stuff.  So far, only Jackson and I have it.  Here's to hoping the other two stay healthy and that J's ick doesn't migrate into a fun-filled croup adventure at the Chateau.  J missed school yesterday and I sent him today.  The high is only supposed to be in the teens.  At least school doesn't let the kids outside when it's that cold.

I don't have any newer updates on Amelia's situation other than the transplant team is going to meet with the family.  Here's to hoping.

Potty training has been so-so.  He still loves to sit, embraces the new seat, but hates the footstool and the timer sends him over the edge.  The shower curtain must be closed and he needs to be completely naked, NO SOCKS.  (This could make using the bathroom at, say, Target, a bit awkward.)  He's also been pushing me out of the bathroom and shutting the door. So, it's still a work in progress.

Object du Jour:  The iPad.

Team Amelia!

View more videos at: http://nbcphiladelphia.com.

Recent news update about Amelia and her family! 

WTF?

I read an article recently by a mom whose child was denied a kidney transplant at CHOP because the child's IQ is too low and her future "quality of life" is low.  I have insufficient words to describe how positively furious this makes me.  Who determines quality of life?  Should we only give life-saving medical treatment to those who provide the biggest contribution to society with their brilliant minds?  Is this some cruel form of doctor-directed natural selection?  Why provide medical treatment to people with low IQs at all?  Why bother?  They aren't pulling their societal weight like the rest of us rocket scientists.  Where do we draw the line?

Link to Article  and Link to Petition

What I also need to mention is that this child has Wolf-Hirschhorn syndrome. In short, it's the "opposite" of what Jackson has.  Jackson has a duplication of the short arm of his 4th chromosome, Amelia has a deletion of that same arm. So, in an odd way, I feel like this issue really hits home.  Not just it's another child with special needs, but with a small chromosomal twist, we could be in the same boat.

Please read the article and sign the petition to help Amelia get the surgery she so desperately needs.  Think about those you know and love who may not qualify for this surgery under CHOPs standards.  If you don't have anyone directly in your life, think of Jackson.

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.

trisomy 4p

I found a Facebook group of families affected (effected? darn it) by 4p!  When I joined a few weeks ago, there were less than 20, now they are up to 28!  I never, in my wildest dreams, thought I would see that many of us in one place.  If you a are 4p family checkin' out the blog, drop me an e-mail and I will get you the link.  wjo4244 at gmail dot com

It's been absolutely amazing chatting with other families who know exactly what we go though.  And, it's a little freaky seeing 20+ other children who look so much like J!

J has his first of three "potty training sessions" with the Beh Psych today.  We'll see how that goes.

Jameson turned 4 yesterday!  How did that happen?  We took him to the restaurant of his choice for lunch (Red Robin) and on Saturday we're heading to (Lord, give me strength)  Chuck E Cheese.  I don't know how J will feel about it, but the boys' cousin will be there and they love her, so that may help.

Object du Jour:  Dr. Suess's ABC book.  That book had a good run earlier in the year and now it's back.  I literally have the whole book memorized.  It's scary....Big A, little a, what begins with A?  Aunt Annie's Alligator, A, A, A.  Like I said, scary.