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.

Jackson spells!  Ignore my kid modified bedroom!

Stuff

J has been a busy bee since school let out.  Christmas trips, illnesses, doctors appointments; it's no wonder he keeps asking to go to school.

Poor J woke up Christmas Eve throwing up, after a fever the night before.  It's become an annual tradition, I think. All he wanted to do was sit in my lap and cry, "Are you throwing up?"  I gave him some Zofran, once he starts he can't stop heaving, and he was better by the time we were ready to open presents with my family.

On Christmas Day, he was much better and he and Jameson tore into their presents.  Jackson's fav was his Fisher Price work light and Jameson loved Dr. Drill and Fill.  Love that the simplest gifts make them the happiest!  We then headed off to the other Grandma and Grandpa's where Santa left a box of Lincoln Logs (and his hat) on the porch.

J wasn't super cooperative at his eye appointment last week.  A new person was training and he kept looking at Veronica (our usual orthoptist, aka Veronica Harmonica) for direction.  He did a little worse than usual, so if it stays that way at the next visit, we may have to start patching again.  I'm sure he will love that.  Hopefully, it was just the new person throwing him off.

This week we went to dental clinic and we saw Veronica in the waiting room with her daughter.  I said, "J, look who's here" and he looked at her and reached up to feel for his glasses (which were laying on the kitchen floor).

J really, really dislikes the dentist.  But, I have to say, this is the best he's done.  He allowed back x-rays to be taken, which we haven't gotten to do in the past.  And, the news wasn't good.  The Dr. found another supernumerary tooth on the left side (he also has one in the front) and his right 6 year molar is growing into the tooth in front of it.  All three will need to be pulled at some point.  The Dr. was going to consult with his attendings and see what their thoughts were.  He said usually they consult "the literature" for guidance for kids with rarer syndromes, but he doubts there's anything out there on trisomy 4p.  I told this dentist this was his chance to be published!  I'm terrified about how J will handle the extractions and if it will impact his eating.  He's surprised me before.

Object du Jour:  The iPad.  Christmas toys are way fun, but not as cool at the iPad.  I just cleared 983 of J's self portraits from the iPad this morning.  Maybe I'll post some, they are pretty darn funny!

J sings the Chipmunks...

Monday was J's Christmas program at school.  I was told he would be participating, but I was really nervous about how he would handle all the stimulation of the singing, the audience, standing on the stage...all that fun stuff.   My child rocked it!  Well, he stood there with his fingers in his ears, didn't cry, didn't attempt to take off running, so in my book, that's rockin' it!  I'm so proud of him!  They sand the Chipmunk Song by the Chipmunks and J thinks it's really funny that I know the words to that song! Also, the word "Hula Hoop" is hysterical!  Unfortunately, I don't have any pictures because I was in the very.last.row.  Drat.  But, I did order a DVD from school of the program, so maybe I'll be able to do something with that.

Getting ready for Christmas!  Jackson keeps telling me he needs a mirror and a garage for Christmas.  Hmmm.  Jameson just wants everything.  He's getting to the stage where he wants everything he sees on TV. 

The tree is up and Jackson makes sure to remind me to turn it on every morning.  He's done so well with leaving it alone and not pulling the ornaments off.  This is the first year for that!

Eye and dental clinics coming up in Dec.

Object du Jour:  The iPad.  The child is obsessed and works it better than I do!

Woo Hoo!

GI this past week...J gained almost 4 lbs and is now at 93% of his ideal body weight!  I'm so thrilled!  Those Sunbutter sammiches are totally paying off!  Granted, we still need to expand those food horizons, but for now, I'll take it!

We spent the last few days at a hotel with a waterpark near my hometown.  The boys were in heaven!  Their cousin came over and all three went "swimming" in the jacuzzi in our room.  Jameson didn't understand why they had to wear swimsuits in the "big bathtub." 

Then we went to visit my parents and their new Border Collie puppy.  What a cutie she is!  Unfortunately, I think I'm allergic.  She licked my neck when I held her and ended up with a necklace of hives. 

Today we're off to Trainfest.  Jackson is so excited.  He asks to go whenever the commercial comes on, but first it's off to Whole Foods to spend my Groupon on as many jars of Sunbutter as I can!

Object du Jour:  Eric Carle's Brown Bear book.  He loves it!

You say it's your Birfday....

J was messing around with his Magna Doodle this morning and I looked down and he had written the number 10, all on his own.  I asked him to make an 8 and he did!  He also made a 7 on request.  Wow.  This kid never ceases to amaze me.

Randy took the boys to the VFW the other night to see some friends we haven't seen in awhile.  I stayed home, just to bask in some silence for a few hours.  Jameson came home yelling, "MOMMY!  I went to the EFW with Daddy and Elvis showed up.  It was creepy!  Next time we go see Amy, we're going to have Stir Fry with a fish on top."  I guess J tried to swipe Elvis' mic, which didn't go over well and Jameson also came home with a pocket full of screw off wine tops and 2.00.  Only my kids.

OK.  So according to the site I use to see where people are coming from to look at my blog...many of you are finding me because you are Googling the definition of the word "birfday."  I used it in one post, a few years ago now, to show how J pronounced the word "Birthday."  According to urbandictionary.com, there are a few other meanings I was unaware of.  So, if you are looking for more detailed info, pop on over there.  You're welcome.  And for the person looking for "Whole Foods sneeze into hand, "  I can't help.  Sorry.

Object du Jour:  Various magnetic letters and the Magna Doodle.

MG, Ryan B. and The Man with the Yellow Hat

You don't know me and stop pulling my hair!

Jackson just loves school.  He's an uber-speller, getting 90% on most of his spelling tests thus far.  He's been learning Spanish.  I wondered how that would go, but he's coming home singing songs about "Donde esta?" and stating proudly, "Me llamo es Jackson!"  On the flip side, he's started pulling hair.  According to his teacher, he will cross a room at school to pull a child's hair.  And, he's now doing it to me at home.  J comes at me with hand outstretched saying, "Don't pull hair."  If he's lucky enough to get a handful, he follows it with, "Pulling hair is naughty."  No one seems to know how this started or how to stop it.  At home, he doesn't like me walking away from him and it usually stops the pulling.

For Halloween, the boys were "Monkey George and The Man with the Yellow Hat."  We even dressed MG up as Ryan Braun. They were so cute!  I'll post pics as soon as we get them off the camera.  Jameson loved it!  He walked up to the first house and said, "I would like to have a piece of candy, please."  The lady just laughed.  We shortened it up to just "trick or treat" after that.  Jackson followed the protocol of "trick or treat" and "thank you," but could've cared less about the candy.  He did latch on to a piece of licorice that he found very entertaining for some reason.

Here's my rant for the day:  Because someone has bred more or has had children longer, does not make them a superior parent.  I made the mistake of asking advice on a situation with Jameson on Facebook.  A woman who I only know from trisomy circles told me to because she has 5 kids, one a trier, I essentially just need to "toughen up, I have a lot of parenting ahead of me."  Yep, I get that, but I'm amazed that I got so offended by someone I've never met.  It made me want to go all Springer show and yell, "You don't know me!"  I had to go and ask the question, didn't I?

GI/feeding team follow up next week.  Hopefully, J has packed on some pounds with all the sandwich chomping he's been doing lately.

Object du Jour:  J loves the "Biscuit" books he brings home from the school library. 

The one where Monkey George gets left at Meatballs.

After J's game a few weeks ago, my brother, his daughter, the boys and I decided to go out to lunch at Noodles and then to Yo Mama for ice cream, then home to watch the Brewer game.  J had a bit of a runny nose, but seemed fine.

We eat lunch, J had a cup and some crackers and decide to walk up the street to the ice cream shop.  As we're walking, J starts coughing and within seconds, he's barking, wheezing and retracting.  I scoop him up and run to my car, toss Jameson's car seat into my brother's car and head to the Chateau.

It was a packed house for a Saturday afternoon.  The ONLY good thing about breathing issues is that we get VIP service to the front of the line. 

We're taken back to a room and a med student comes and asks a bunch of questions.  The nurse comes in and starts to administer the breathing treatment which I mistakenly assume to be a Racemic Epi.  Jackson barks and the nurse says, "Does he have croup?"  I say, "Yes, that's what he's usally dx with when we come in."  The nurse whips off the mask and says that she's giving him the wrong medication based on the med student's dx of asthma.  At least we figured it out early.

This is about the time I realize (or should I say Jackson realizes) MG is not with us.  I didn't remember seeing him in car, so I call my brother and ask him to call the restaurant.  They say the don't have him, but my brother gives them his number in case they find him.

Jackson in hysterics without MG, that he freaks out anytime any of the staff approach him.  The pulse ox and breathing treatment didn't help that.

My brother calls back about 30 minutes later saying the restaurant found MG under the table and they will hold him until we come back.  Hallelujah!

Jackson responds well to the meds, so we don't have to stay overnight.  We hop in the car and head straight back to Noodles and MG is sitting on a shelf behind the counter.  Jackson yells, "Monkey George was waiting for you!"  The look of relief on his face was so sweet.  I tell the cashier, "We're here for the monkey" and he starts to laugh.

We get home and Jameson says, "Did we leave MG at Meatballs, Mom?" 

Alls well that ends well.

Object du Jour:  MG

Baseball!

Last day of baseball!  Look at that face!  (He got a haircut on Tuesday, so now he can actually see!)

wow.

I missed a whole month! In that time, J has started first grade and finished the baseball season.

School is going well so far! For the most part, he's excited to go and they tell me he's happy most days.

Jackson's strongest subject at school is spelling. He's gotten 90% on his first three tests! I'm nervous about this week's test because most of the words are four letters and he wasn't thrilled about spelling them for me. It's really amazing to me that he just learns the letters from me spelling them to him and reading simple stories that contain the spelling words in them. He then takes the tests at school orally because his writing isn't close to a first grade level yet.

New this is year is homework. J was really excited the first few times and now he runs from me when I tell him we have homework to do. We have to do most of it hand over hand, but he's brought little trinkets home every week for having his work done at the end of the week.

We have his first parent/teacher conference tonight. We'll see how it goes!

He's still getting to swim every week with the adaptive phy ed teacher and classroom aide once a week. They said yesterday he kicked around the pool on his own with a floatie thing around his waist holding on to a pool noodle. Never thought I'd see the day!

Baseball ended so well! He wasn't happy to be there at first and then it got to the point where he was asking daily to "run the bases." I think it helped that after the first few games his buddies were always Vicky on Tuesdays and Mike on Saturdays. They were both so good with him. There was an award ceremony at the last game and Jackson got his first trophy! 7 years ago, if someone told me my kid with "trisomy 4p" was going to someday earn a baseball trophy, I wouldn't have believed it!

Eating is still chugging along. The State (in their infinite wisdom) decreased Jackson's feeding therapy from 1 time per week to 1 time per month. My 7 year old is mainly existing on baby food and formula. We're hoping that for the next eligibility period we can get them to up it, at least a little.

Object du Jour: MG and tons of plastic letters.