Sunday, April 17, 2016

After surgery



September 25th 2015

Eddie got the okay from the oral surgeon to return to solid food and she said it was okay for him to go to a birthday party at Lazer Bounce on Saturday.
The bone graft has filled in the gap in his skull and will his body will create new bone for the rest of his life.At some point, he will get the palate expander back in his mouth and then braces after that.
But for now he can eat more than scrambled eggs, pasta and Mac N Cheese - not that he 
really wants to.

October 16th 2015 

Eddie took the Doctor's TARDIS to New York Comicon.  He was thrilled to watch Dad speak
at a convention panel about Marvel megos.





On October 3rd, we went to a New York Mets game. It was freezing cold.
Good thing the promotional item that day was Mets blankets.  The night before 
was just as cold and all they handed out was fridge magnets.





On November 11th Eddie and I took the LIRR train to the 1 Subway to South Ferry and took the ferry to the Statue of Liberty.  It was a nice day for November - especially when the sun came out.




Went to the Christmas breakfast at our church on Dec. 15th. and met Santa.

This is Eddie , Paul's son i wanted to keep on playing basketball with my dad but my my parents made me take a picture with santa but i just wanted to keep on playing so i did it and that's the picture

Monday, September 14, 2015

Bone Graft Surgery and a look at Eddie's skull


Here is a before and after of Eddie going in for surgery at Long Island Jewish Cohen's Childrens Hospital.  The picture on the left is Feb. 2010 when he had his cleft lip repaired and the picture on the right is Sept. 2015 getting a bone graft to expand the size of his mouth.

 This is a composite picture of an X-ray of Eddie's skull with his teeth X-rays added in.
As far as I can grasp, the bone graft done today adds a little piece of cadaver bone (yes, I had to explain to Eddie what a cadaver is) This is supposed to fill in the space between his nasal cavity and his top teeth.

He cannot eat any solid food for at least two weeks so he is living on overcooked pasta, Mac and Cheese, Ensure, Italian Ices, Ice Cream, and Slurpees  It's a hard knock life but he is coping well.

Sunday, July 26, 2015

Palate Expander II - Night of the Face Mask

                 


              Palate Expander II - Night of the Face Mask

So Eddie's palate expander popped out on New Year's Eve.  Then came the snows and the bitter cold, and I was not interested in driving 20 miles to the orthodontists at the children's hospital at Long Island Jewish.  There has to be plenty of orthodontists with
experience in cleft lip and palate issues - and we found one about 5 miles in the other direction in Huntington.

He took new molds of Eddie's teeth to make a new palate expander which Eddie will have to wear for 9 months.  At the same time, each night he has to wear and sleep in a face mask that will slowly draw his palate and upper teeth forward.  The mask has
a bar that holds rubber bands that are hooked onto the palate expander.  Eddie is a restless sleeper and sometimes I have to roll him off his face so he doesn't have an imprint of the mask on his face in the morning.

So far it's been about a month and the palate expander does not need to be adjusted for a while.  The orthodontist wants Eddie to wear the mask whenever he is not in school or camp, but I don't want the boy to hate the thing.  According to the doctor,
this should mean that Eddie will not need braces.  Let's hope so.

Monday, February 2, 2015


Eddie gets a palate expander



Shortly before Christmas - about two weeks before - Eddie got fitted for a palate expander to stretch his mouth wider before the surgery to fuse the skull bone to his repaired palate.  The surgery is about a year away, so that hunk of metal is supposed to stay in his mouth for quite a while.

Except that on New Year's Eve it came out.  I had just made the last adjustment with the pointy metal tool they give you to slowly expand the expander - which is more difficult than they tell you - when the loop around his tooth popped off.  I didn't know whether to get some denture glue and glue it back in, when Eddie popped it off the corresponding tooth on the other side.

So now we are waiting to find out what the orthodonist wants to do next.  Meanwhile the boy can enjoy some time without the appliance on the roof of his mouth.

Monday, July 21, 2014

Nothing new to report



No news or changes in regards to Eddie's medical except that his physical shows him to
be in the 50 percentile for his age - this means that he is just like most other kids his age 
in height and weight.  

He had a great time playing soccer this spring with his friend Sam on Sunday afternoons
at 12:30 - 2pm.  Annie already signed him up for the fall and next spring.  I think soccer 
helps build his trunk strength as well as his legs.  Annie also just signed up Gwen and 
Eddie for ice skating lessons on Saturday mornings.  She is determined to have strong
healthy kids - who look at their 50 year old parents in digust.

Eddie also just learned how to ride a two wheeler.  After I fell on him, trying to push
him from the back, he quickly figured it out for himself, telling me to "stay away".
15 minutes later, he was pedaling like a madman - free of training wheels forever!

Here are some recent pictures of Annie and Eddie - one on the Long Island Railroad
going to ride the Roosevelt Island Tram, and the other one of mother and child sleeping
on a Sunday morning after Eddie snuck into our bed at 5am.

I will try to update more often, but Gwen gets jealous when I do.

Tuesday, December 31, 2013


Eddie at Soccer 2013


Here is a picture of Eddie in his soccer uniform and you can't
see it here but he is wearing cleets and shin guard socks.

Don't let the picture background fool you - he was not playing
in a stadium - they played in a regular soccer field in Plainview.

It was a good experience - he learned to play on a team, to think
about where the ball was going to be, not just where it was.  It got
him good exercise, built up some muscles, and taught him how to
take a kick to the shins.

Next spring he will be back playing with new boys.

Christmas morning 2013

I try to video the kids opening their presents on Christmas 
morning, but this year Gwen was not very cooperative so most of
the video is of Eddie.  Gwen is of the age now where it is a crime
against humanity if she does not get every gadget her friends have.

She got an iPhone 4S in September, just before the iPhone 5
came out, so Target had dropped the price to 2 for $100 with
two $25 gift cards.  I told her then that she does not need an
iPad - mini or otherwise - and to stop asking for one.

Apparently those words fell on deaf ears, but I was not kidding.
She got a pair of UGGS - which is the sound parents make
when seeing the price - but I guess that was not spectacular
enough to make up for the lack of i-based gifts.




Here is Eddie flying an airplane on MS-Simulator X.