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Tuesday, April 5, 2011

Hello..It's just about April and we just had snow flurries.  Where is spring???  Things in our house have been busy...Becky is my handful this month.  She yet again had another ear infection...after two rounds of antibiotics it's gone but the fluid is still there and may take months to clear up again.  We go back in a month.  Now that she is 18 months old the ENT hesitates to put tubes in saying she's at the age of outgrowing it all.  So again, it's wait and see.  Which at this point is what I wanted to hear anyway.  I have enough other stuff going on.  Her speech evaluation was fine and the words are just pouring out now.  So it obviously hasn't affected her speech and her hearing is perfect as well even with some fluid in there.  Then I thought maybe it was an allergy to something.  I've heard that removing milk from their diet is a longshot but could be worth it.  So, I took her to the allergist to see if it could be an allergy to something since she has eczema on her lower legs since she was born..  After 6 panels I found she is allergic to NOTHING.  Could she still have a sensitivity to something in milk?? I don't know. I've removed almost all chemicals in lotions, shampoos, toothpaste, and for now it's not affecting her speech, hearing or behavior so I'm letting it lye.  I have bigger fish to fry this month.  :)  Becky is my most active child out of the three.  She can climb, scale walls, jump, skip....she focuses most of her energy on gross motor skills.  She even got her first cat scan last week.  Not even the boys can claim fame to that one.  It was our first real nice day and I opened the windows in the playroom.  I left the room and she climbed onto the toybox in front of the window, leaned on the screen, and fell out head first down into the basement window well.  It's about six feet down from the window.  She had a bump on her forehead the size of a golfball and one at the base of her neck.  She seemed fine afterwards but daddy took her to the ER just to be safe....and she was fine...I can not take my eyes off of her for a moment and with EB needs of a toddler, I don't know how to accomplish that.  She climbs out of her playpen and scales a baby gate like it's nothing. 

Zachary is doing good.  He's been chosen to play a solo for the NY State Music Association.  Normally fourth graders do not get chosen, but Zach is very proud he is able to participate this year.  He works very hard.  Report cards came out this month and we went to his teacher conference.  He earned a nearly perfect report card once again.  He is a pleasure and there are very little surprises at his conferences.  Casey on the other hand is a whole "nother story ....   :)

Casey turns out is my comedian. Don't get me wrong I am overjoyed by that fact.  When he was younger I worried how he'd be a confident person having so many differences from other kids his age.  I don't know how it happened but everyone LOVES Casey.  All the kids in class follow and want to play with him, therapists and teachers find him funny and he just loves EVERYTHING.  I never know what to expect at his conferences.  There's always an "Oh, Casey " at some point in the conversation.   This time it was....Casey was out for two weeks .."did you miss me Casey (his teacher asked)....Nope, not even a little..I did miss the sand table tough..Can I go play?"  Or when he passed gas in therapy the therapist asked .."Casey what do you say?"  He says "oh sorry..and go on to say "I cut the cheese guys"..No casey, how about "excuse me"..he then says.."why are you saying excuse me ..You didn't cut the cheese?"  UGH..I think I would be appaled if Zach's teacher said that at that age..Somehow, either you mellow with the second one or I am just Happy when he acts ":normal" so I give him a free pass ..I love that he is such a cool kid. He can now go down the big slide on his own and scale the rock wall alone.  He knows most of his alphabet and can spell his name..and boy can he play super mario brothers on nintendo..He's incredible..This could be his special talent  :)  On a more serious note, Casey has been having increasing trouble swallowing his food.  He's at the point now he can only swallow liquids without gagging.  Oh yeah, and cheeze it crackers???? ...I spoke with his surgeons at Cincinnati Children's Hospital and we decided Casey needed to go down and have the problem looked at.  He's never really been a great eater and since the trach he does frequently cough and gag, but this is different..he looks scared and he says "I can't swallow it "...This is an unfortunate reality in EB. Maybe he is developing a stricture, maybe he still has some swelling/misoperation of his epiglottis from the last incident we ad..who knows, but why guess?  Yesterday he yawned and it triggered a vomit.  No emergency, he has the gtube.. So, we are going to be in Cincinnat from the 8th of May till the11th of May.  His surgeon will check his esophagus and the ENT will do the overdue bronchoscope at the same time.  These two surgeons ROCK. We just love them.  I wouldn't place my son in the hands of anyone else. 

Two weeks before we leave for Cincinnati, John is going to have surgery.  A few weeks ago the endocrinologist found a tumor on his thyroid.  Biopsy of it showed a large tumor with some atypical cells but was inconclusive by needle biopsy due to the size of it . So the only way to biopsy it is to remove it and the half of the thyroid as well.  They will then biopsy it in the OR and see if it contains any sign of cancers . If it does they will go on and remove the whole thyroid. So, on the 25th of the month, He is off to surgery at the same hospital he works in. 

So, that's about it for now.  Its a busy month coming up for us.  Hope it's a peaceful one for you...beth

1 comment:

  1. Hi Casey
    My name is Jenna and I came across your site. U are one brave, courageous determined strong fighter. U are one real hero.
    I was born with a rare life threatening disease.