Someone has some sass to him

My baby boy did something today that after the fact I can laugh about but during I wasn't so happy.  I walked to our basement where our deep freezer is to get ice cream.  He was upset because he wanted to go with me and I wouldn't let him.  So.....he figured out how to lock the door through the child safety lock on our door.  When I began banging on the door and yelling "Unlock this door and let me up or you won't get ice cream!  This isn't funny!'  His response?

I thought that it was funny!

Wordless Wednesday: Summer fun

PYHO: Calgon take me away!

I am getting overwhelmed and burntout!  Perhaps 3 IEP meetings in 2 weeks did it to me.  Perhaps it was the GI, geneticist, genetic study, therapies, etc and all the running I'm doing.  Maybe it's Matthew's back to not being able to poop on his own.  Maybe it's Chris is having seizures again.  Maybe it's me doing all the budgeting and bills, laundry, cleaning, cooking taking care of the kids and I need a break.  Maybe it's the fighting,

I'm doing for the boys, for others, volunteering at the boys' school, starting a support group for special needs parents, advocating for my boys and for other's kids.  I'm also looking for jobs and worried   My health is suffering yet when I ask my husband for help he turns it around and tells me I have no right to be burnt-out.  He works, sleeps, plays video games with the boys and lets me do all the rest.

I'm trying to give him time to process that he has the same genetic syndrome as Chris.  I don't know how much time I should give him.  I've asked him to talk to someone about it.  He won't.  I don't know what else to do.  I need a break.

But it's not my boys fault that I need a break.  They can't always control their behavior.  I can't control my husband.  I can only control myself.  I can only control how I will react to stress.  Unfortunately, my reaction is usually food.  Fortunately, my reaction towards my boys is usually more hugs and kisses.  I am hoping if I show them how much I love them they'll feel it.

IEP times 3

3 IEP meetings in 3 weeks for my boys.  Good times.  The rundown of who got what and how the IEP meetings went a little something like this:

Jon- full day kindergarten (they offern 1/2 day for typical kids).  He will be in typical kindergarten in the morning and resource room in the afternoon to recieve more assistance with his learning.  His speech is going ok and she's providing a lot of visual cues to have him NOT elongate words, sounds, etc.  He's improved his OT skills and is working hard with fine motor skills.  His meeting went smoothly.  He'll be getting group OT and individual and group speech.

Matthew- *meeting number 2* full day kindergarten.  Same as above for placement.  He'll be getting group OT and individual and group speech.  His PT wanted to dismiss him and this is where it gets rough.  I wouldn't allow them to dismiss him.  He has several doctors all agreeing he needs the service and it is educationally necessary.  Matthew's not able to dress himself right now.  I dress him to go to school.  If I didn't, he'd have everything backwards, inside out, over his jammies.  He can't get his sneakers on or off.  Chris can get his sneakers on.  So, my 3 year old is higher in this aspect than my 5 year old.  He can't go to to a park without falling.  I asked for exit criteria and I was told I was thinking from my heart not from a school's prespective.  After I responded with "I have a special education degree and was casemanager for 4 years and a teacher for 7." they changed their tune.  Matthew has at the very least PT on a consult basis for the first 9 weeks.  They are to do a standardized assessment on him to exit him out.

We left in a note like this

Chris' IEP:  He's staying on as a full day kid.  They are upping his speech.  He'll have 5 sessions now instead of 4.  He will be getting the same amout of OT BUT it will be in a different format.  The class he will be in has a group OT and he'll have an individual session.  His PT will be decreased because his educational day isn't impacted by his motor delay.  His meeting went smoothly as well.

Now we're done until next school year.

The story of Chris

I've shared information about what 16p11.2 duplication means to us.  I've shared that the duplication was inherited through my husband.  What I haven't shared is the story of how Christopher came about (not that graphic).  Chris, we say, is our miracle child. 

I have PCOS along with a few other stemming from surgery I had to remove part of my cervix.  My husband had poor morphology.  We were given a 1 percent chance of concieving on our own. Jon and Matthew had been IVF babies.  As a result, when I skipped a period I didn't think anything of it until I began to notice some wierd signs.  I couldn't button my jeans and I was tired, falling asleep right after Jon and Matthew were falling asleep.  Jon and Matthew had just turned 16 months old.  Being pregnant again was far from on my mind until a friend of mine asked if I could be pregnant.

With my kids in tow, February 13th I went to the store to buy a pregnancy test thinking it would be negative again.  As a person with infertility, the blank stark white negative pregnancy test was the norm.  Obviously this wasn't the case.  I was completely freaked out!  I ended up freaking out to my friend while we chatted on the computer. 

George came home very excited not that long afterwards telling me he got me an early Valentine's Day gift.  I hadn't gotten him anyting yet.  I was plaing the slacker wife card and had planned on getting him something the next day so I ended up wrapping up my positive pregnancy test and gave it to him.  He gave me a laptop.  It ended up being so useful over the next several months!

I called my OB/GYN office the following day and was able to get in about 2 weeks later.  It turns out that I was 5 weeks along when I had found out.  I was very scared as I had hyperamisis with Jon and Matthew.  I made it through the time that I had began to get sick with them.  I remember thinking that the throwing up would miss me this tome around.  I was wrong!

8 weeks along and I threw up like it was my job!  I was a teacher at the time and couldn't make it through a period at the middle school where I worked without being in the bathroom at least 10 times.  A period lasts 45 minutes.  I ended up losing almost 30 pounds, was hospitalized so often that the doctors joked and said I needed my own room with my name above the door.  I had a zofran pump, iv's through the hospital and at one point they suggested a PICC line and getting my nutrition through the PICC line.

During my anatomy scan the doctor found a marker on Christopher's heart.  There was no issue at his 12 week scan.  Because of the marker we were sent for an anatomy scan with a high risk doctor.  There was no marker on his heart at that point; they said it had resolved itself.  My genetic bloodwork came back with no issue.

At 23 weeks and 5 days I had a regular appoitment and my cervix started shortening.  I had my cervix shorten with Jon and Matthew and I was hopeful that wouldn't happen again.  Obviously it did.  I had a cerclage again.  I was put on bedreset.  It was obviously difficult with two toddlers at home.

At 28 weeks I started having preeclampsia.  I was put back on modified bedrest.  At 30something weeks I started seeing spots and was having appoitments 3 times a week.  Through all of this I still held out hope I'd have a full term baby take home baby.  At 34 weeks I was put on bedrest again.  4 days later I ended up in the hospital for high blood pressure and headaches.  I ended up started having pain in my rib area and my liver function showed things were failing.

The choice was made to deliver him on September 12th and by the time we were ablo to get into a OR it was after midnight.  My baby boy was born 1 hour into our 35th week weighting in at 5 pounds 8 ounces and 18 3/4 inches long.

Chris was admitted to the NICU from here as he had problems breathing.  He would stay 7 days in the NICU more for apnea and bradycardias than anything else.

Don't forget I'm doing a giveaway all week!

Hop, hop, hop

Day 2 of my self proclaimed bloghop.

Why am I doing this?  No one knows what a 16p11.2 duplication is.  What does ths mean for my family?  Christopher has the duplication and as a result has apraxia, autism, intellectual delays, behavior issues, has had seizures, doesn't sleep well at night, delayed mylenation, abnormal eye cup pallor, and struggles with motor planning and motor skills.   He also gets ill easy.  Chris has had a runny nose for several years.  He has had more ear infections than I can count, 3 sets of tubes, and still has infections. With all that he has for labels, we are lucky.  There are others who have it much worse than we do.  For that I am greatful every day that he is here with us.  I know it could have been different.

This is inherited.  My husband has the same duplication.  What does this mean for him?  In my opinion, nothing.  He has a master's degree in engineering!  I do think that he and Christopher look very similar.  Everyone agrees!

In my opinion my son is the blonde haired, blue eyed copy of his daddy.

What we are trying to do is gather more information and attend a 16p syndrome get together/conference.  I'm not sure if we can afford it since gas prices are what they are.

16p11.2 syndrome bloghop day 1

Initially when my son was diagnosed with 16p11.2 duplication I could find no information on it and what it meant. We were given a genetic diagnosis and basically told "Good luck with that". My hope is no one will have to go through what we did again. We muddled through Christopher's diagnosis in those first several months until we could go to a geneticist who did know what he was saying. It took us driving from central New Jersey to Boston, Massachusetts. Parents shouldn't have to drive 6 hours away to find a doctor who knows about this syndrome!



Because 16p11.2 isn't known about it has made things difficult with planning services with schools and with additional specialists. No one knows about this syndrome still! We are participating in a genetic study that will help us plan for school better.

What we are trying to do is:
1: Explain what the 16p11.2 duplication/deletion is.
2. Do some fundraising to pay for a trip this summer that we are trying to take to a get together with other 16p families where we can not only talk to other families BUT gain even more information.

What I am doing to do this week is give away every night of my fabulous bracelets in red, yellow, and blue for everyone that donates to our 16p11.2 syndrome.

Every day I will be sharing information about what the 16p syndrome is and what it means to my family. I’m hoping that others can join in, share information or simply ask questions about the syndrome.

To win a bracelet you must, mention
1. 4 Little Monkeys in a post along with the 16p11.2 syndrome and link it back to me so I have proof.
2.  Donate to our trip.  It doesn't matter how big or how small.  Afterwards leave me an e-mail letting me know what size and color.  I have red, yellow, and blue.  They say 16p11.2 syndrome awareness on them.

Bloghop week

I have shared this before but as I work on a clicky button to link we few but mighty bloggers for my 16p11.2 awareness blog I wanted to share this video.  I hope this makes it a bit more personal for everyone as to what Chris' syndrome means to us as a family.

Photo and video editing at www.OneTrueMedia.com

Quick update about today

I'm tired so this will be quick.  Chris, we can back off a bit with OT.  He is starting to copy his name with dot-to dot letters!  My baby is writing his name!

We are to continue with a full day and add in some behavior and DIR/Floortime in his program as much as we can.  I do a lot of Floortime with Chris at home but he need to know how to play with kids not just adults.

Matthew had some bloodwork taken and a urine test to test for metabolic disorders, Fragile X, and genetic testing.  Matthew had 16p11.2 duplication testing last week and we should hear back from that testing next week.  The doctor said she KNOWS there is something going on and if we are going to THAT many doctors they should have figured it out before now.  When we go this summer to the genetic study we're in, they will do a full battery of testing on Matthew including an ADOS.  FINALLY SOMEONE IS TAKING ME SERIOUSLY! 

I couldn't get a good picture of the skyline as we were driving in.

All 3 kids were making funny faces as we waited for the doctor to come in.

They call it gardening I call it therapy

I've had a garden for 5 years now.  It started small with tomatos, herbs, and green beans.  I loved going outside and picking my beans to cook for Jon and Matthew who were eating finger foods at the time.  Now my garden has grown to include herbs of many kinds, raspberries, tomatos, lettuce. peas, carrots, corn, and green beans.  My boys love planting the seeds, watering them, pulling weeds, and picking the fruit and veggies.

           Jon, Matthew, and Christopher think it's fun and are eager to plant the seeds.

They thought that they were only planting carrots, corn, and watermelon.  In reality they were talking about the colors, shapes, and characteristics of the seeds.  They were also using their fine motor skills to pick up the seeds and place them in the ground. 

Jon, Matthew, and Christopher love to water the plants as they grow.

While they call this fun as they worry about their plants growing, I call this Physical Therapy and Occupational Therapy.  They have to get the water hose on to put water in their watering bucket.  That takes fine motor skills to open the faucet.  While they call it crunching down to get to the ground, I call it squatting and working their leg muscles and balance.

While they call it getting dirty and digging in the mud and dirt.  I call in sensory intergration.  Afterall, not often will my little one let this happen.

They call it fun.  I call it therapy.  We just won't tell them that they are learning :)

Don't forget I'm selling bracelets to fun out trip this summer for the 1st conference/gtg for 16p11.2 syndrome.

I'm selling, as you can see, yellow, blue, and red bracelets in adult and kid sizes.  They say 16p11.2 syndrome awareness.  I was asking 4 for kid and 5 for adult sizes but haven't really gotten anyone interested.  So, I'm going to cut it back to 2 for kid and 3 for adult sizes.  Go to paypal and send the money to marissa_sara@comcast.net as a gift.  Then e-mail me and let me know your address, sizes, and colors you want.  Thank you!

Wordless/Wordful Wednesday

I melt over this boy.

Look at these eyes!

Who could resist this goofy kid?

This boy is 1/4 of my heart :)

PYHO Wednesday: "R" word

Nothing gets me going more than the use of the "R" word.  Everyone knows how passionate I am about the use of the word and I let it loose when people say it around me.  The use of this word is not only disgusting, but it is disrespectful, and ranks up with the "N" word or making fun of those who are homosexual, in my opinion.

Last night I ended up on a "facebook war" over the word with a family member who thought it would be funny to update his status to something that would include this word in.  When I told him it was a poor choice of words not only did he defend himself but he thought it was funny as did his friends.  I was told to grow a sense of humor.  My sense of humor is well in tact and has evolved over the years.  I may laugh at a good potty humor joke like a 12 year old boy BUT the one thing I won't tolerate is making fun of someone for something they can't control.

The facebook exchange ended with him defriending me for not aproving of his words.  I'd much rather cut off communication with a family member than hear them spew hateful, hurtful words that my children will hear.

My babies will be called this word, this "R" word.  My youngest has already.  I don't know how anyone could look at this baby and think such hateful thoughts.

I look at this face and feel nothing but love and adoration.  How could anyone think anything else?

In love

I am doing a bloghop in 2 weeks from May 16th to the 20th for 16p11.2 duplication  awareness.  I've got 3 people willing to hop with me.  I would love more people!   80% of children who have this microduplication/deletion are on the spectrum.  I am also selling bracelets to pay to go to a conference/gtg for the 16p syndrome.

I have yellow, blue, and red bracelets in child and adult sizes that say 16p11.2 syndrome awareness.  Adult bracelets are 5 dollars and children bracelets are 4 dollars.  If you want to order one, please e-mail me at marissa_sara@hotmail.com to let me know what color and sizes you want. 

Now on to our regularly scheduled blogging....there's nothing better than a boy and his mommy!  I was proposed to twice this weekend by my boys.  Jon asked me to marry him when he's a big boy and Matthew asked the same!  Then today they told me their plans for having babies.  Jon wants to have one baby and Matthew said he wants six!  I had to break it to them that we aren't having babies.  They don't understand why....