Things that make you go Hmm....?

I attended a webinar Thursday which can be seen here if you have 45 minutes to spare.  To make it simple if you don't feel like watching, this explains Chris' syndrome.  It also makes me wonder again about Matthew.

We had Matthew's genetic testing done to look for the same syndrome.  Matthew has low tone, a language delay, etc.   His delays are the SAME TYPES of delays as Chris'.  Chris just has a bigger delay.  Matthew came back negative for the 16p11.2 syndrome.

What we learned through this webinar could be the key to me getting Matthew RE-tested for the same syndrome.  We learned it is more than likely inherited.  Physical traits to the 16p11.2 duplication are all things that we've dealt with Matthew more than Christopher (if Matthew tests positive);  hypospadias and now we're looking at a possible tethered cord.  Matthew's motor delays are pretty significant at this point as well as one other thing that is a sign and symptom of a tethered cord.  Matthew gets tired walking, can't walk long distances, is complaining of tingleing in his legs, pain in his hips and has not been able to take a normal poop in almost 2 years now.  He's starting to lose control of his pee as well. 

We're going for an MRI on Wednesday (hopefully the weather will let us) and pending results I am going to ask for testing to be re-done when we get our testing done.  And once we get our results back I will probably sulk for a bit.  I think it was me who passed this syndrome on.  Either way it doesn't matter.  What matters is that he/they are here and we love and adore our boys more than life itself.

SOS-HELP

My child is a Dr. Jekyll/Mr. Hyde.  Look at this sweet squishy face and what you see is an angel, right?

Remember that squishiness and think of him drop kicking his brother in the face today.  We've had nothing but him kicking, hitting, punching, testing us in all we do!  He's going through those terrible 2's right about now....a year and a half late!

I can't take anymore!  He's driving us insane!  You know it's bad when I have to physically restrain my 3 year old to make sure he won't punch his brother anymore.  I wish someone would be able to explain this 16p thing and let us know how to go about with discipline with him.  On a positive we are going to Columbia's genetic department in March hoping to get some more answers.

The 4 year old bully

I hesitated to write about this tonight but I think it needs said.  I am livid!  My 5 year olds have been picked on for a year and a half now.  The bully is 4.  You see, my boys have apraxia and Matthew is having issues with toileting.  We are going to a doctor or two or three about it and he has lost all ability to control his toileting.

We've endured a year and a half of this child hitting, kicking, scratching, and name calling.  He's called Jon stupid, fart-boy and a few other names.  Today my baby, my Matthew, came home from school and said this child called him "Shit-head." 

I have contacted teachers, child study team, principals and this kid is STILL harrassing my children.  My sweet baby boys are being sent off to school where I thought they were safe and being cared for.  Instead they fear going and rideing on the bus with this 4 year old child.  That shouldn't be so.  When I brought it to the school's attention last time the CST person called me back and told me I was picking on this child and they were more sophisticated than my boys.  If that is what sophisticated looks like I don't want my boys to be so.  I'd rather than enjoy and embrace the innocence of  their youth. 

I don't know if I can look into the eyes of these boys and promise they will feel safe tomorrow....it's my job to do so and I can't make that promise to them when I send them to school.

Dr. Fartypants and his craptastic report

When we took Chris to the developmental pediatrician, the guy kept tooting.  Seriously leaving loud smelly farts while we were talking to him.  It seems as if the guy spent the entire two hours we were there either farting, reading and ignoring Chris OR talking about insurance and sports.  Then Friday we got his report while we were at Matthew's appoitment.  It is full of.....well poo!  It is full of inconsistencies, non truths and it seems as if the guy didn't hear anything we said. 

And, did you know I have a dysmorphic face as well?

So, on to Matthew's appoitment.  He is to have a speech eval, OT, and PT evals, and a psychology eval.  He thinks that tethered cord is more of a possibility.  I get that but it doesn't explain the speech delay.  George and I had an argument about this.  I think we ned to switch YET AGAIN and he wants to give up and stop going to specialists.

Wordless Wednesday: I eat you with butter....and garlic, and cilantro, and lemon juice

New news to digest

We went to a new developmental pediatrician today with Chris.  He shared with me another website and a few more articles. We are to have a feeding speech evaluation, a speech evaluation, another autism screening since DSM5 is changing things around and will go back in April. He said that he wants Chris to have more speech since he is definately apraxic; he said that he was only able to understand 20% of what Chris said at the most. The doctor felt that the PT goals were innapropriate and that he should be recieving more that the school is giving us. We were given forms today to fill out going directly to court since we are having a lot of problems with the distirct.




He said that Chris' face is dysmorphic (I call him cute even if the doctors say that he has a small head, small squished face, small eyes, etc) and he is questioning something called a corpus callosum meaning the area seperating the brain hemispheres may be missing.

We are to  see an infectious disease doctor to find out why he keeps getting ear infections. He's had them starting from 3 months old; we're on our 3rd set of tubes and he had another infection 3 weeks after having the tubes put in. He also agreed with me about the adeniods and tonsils being removed. I thought they should be. The other suggestion is that Chris may have a soft cleft palate. He talks nasally and the doctor felt that the structure of the inside of his mouth may indicate that this is there. I taught a kid who was in 7th grade when her parents found out she had a soft cleft palate so I know this isn't something that is out of line. My sister had a full cleft palate and cleft lip.

Comedy hour at the house of TiredMom

First of all, let's try to get pictures of Christmas since my laptop was acting up....

My boys Jon and Matthew are so funny lately!  Jon said this to Matthew last week....

"Matthew why are you taller than I am? We are TWINS we are supposed to be the same size!"

I caught Jon the other day with his back towards me trying to sneak something in his pocket.  I saw a familiar package in the house which was fruit snacks.  Jon was trying to shove several packs in his pockets and when I asked him what he was doing his response " Mom, I'm NOT trying to do anything.  Pretend like you didn't see me put these in here, ok?" 

I couldn't figure out how they kept getting into the locked pantry.  I asked Jon yesterday and he told me that he pushed a chair up to the door and unlocked the door.  Matthew promptly told me "Mom, I think Jon is now smarter than you are.  I'm going to be smarter than you soon too!"    Thanks dear.....



Adios 2010, don't let the door hit ya where the Lord split ya!

2010 sucked.  January we found out Chris was on the spectrum and had the 16p11.2 duplication.  February Chris had mastioditis.  March Matthew sprained his ankle.  May....we won't get into May but I will remind you that the image of Chris being carried off lifeless will be ingrained in my mind forever.  June the school district started screwing with us about Chris' program.  July my Father-in-law had a heart attack that almost killed him.  September began more of a fight with the school district, ear infections for Chris, October were more ear infections for Chris, December we had ear tubes and a few weeks later an ear infection for Chris. 

It wasn't ALL bad afterally January we FINALLY found our why with Chris.  That isn't ALL bad because we finally know what is going on with him!  I also started college full time!  June Jon was able to get an IEP and help he needs to succeed in school.  September was birthday month and October we had a 13 year old!  December I graduated!

There will be more pictures as soon as my laptop starts cooperating.