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Monday, May 23, 2011

A month of blessings..

Hello all...Boy it's been a challenging month here!  I barely know fit it all into a post short enough not to bore you! :)  Lets get to our surgeries first...:)   This month John's mom, John and Casey all had surgery.  John had his thyroid surgery.  The surgeon was able to remove only half the thyroid and the tumor.  Biopsy was negative.  He's recovered well. No further surgery or meds needed.  (That's our first blessing this month. ) John's mom, who I mentioned was struggling with end stage Congestive heart failure, received her LVAD pump last month.  She was discharged only two weeks after surgery and was able to come to the kid's birthday party.  Nothing short of a miracle.  I have a new admiration for her.  She faced her crisis with confidence and enthusiasm and her will to go forward is what saved her life. I pray she continues to improve as each day goes on.  She really deserves it.  (Blessing number two).  The week after John's surgery he flew to cincinnati children's Hospital with Casey for his surgery.  While there he had a bronchoscope which showed some swelling and blistering on his epiglottis.  (we knew he had an episode of this about two weeks before we went. (it must take a long time for this area to heal) It was nothing significant and the rest of his airway was perfect.   (blessing number three).   As I told you he was having trouble swallowing the last few months and vomiting every morning.   Just the morning .  It took me months to realize that he may have a stricture.  Casey always had trouble swallowing due to the trach..and he's never really eaten good..so it was hard..it was the vomiting in the morning and crying my "mouth hurts" that finally hit me like a brick. Well, he did have a stricture and it was about 80% closed.  They opened it up..he stayed overnight and went to the aquarium in the morning.  He was put on steroids after the procedure so for a few days he cried over everything..Like a paper towel in the road he saw out the window of the car that was going to get run over....15 minutes of crying for me to get out and help it???  or the 20 mintues of hysterical crying because I threw my garbage in the kitchen pail instead of the small bathroom one????  I despise Casey on steroids...Anyway, He loved his trip.  Crazy cause he was in the hospital for half of it.  But he focuses on the positive my little man...He will tell you..Yes, I was in the hospital but I also went to the aquarium.  It's hard to be home while he is there but with two other children we don't always get the luxury of getting to go together.  And when it comes to hospitals,surgery and doctors his dad just jumps into action.  It must be the nurse in him.  This is where he is comfortable and where he feels he is needed the most in Casey's life. So, dad ALWAYS goes.  I know he is in such good hands there that it makes me relax a bit about not being there. He has two of the best surgeons in the world.  And not only are they incredible at what they do but they are true gentlemen as well.  (blessing number four!)  Casey is slowing eating better and I'm thrilled at that.  He gained almost four pounds last year and grew 3 1/2 inches so I know he's doing good.  I am just waiting on his blood work result and have to schedule a dexascan and echocardiogram as well as a GI visit and we're done with routine stuff until next year.  Throw in Easter, Mother's Day and three birthdays as well in the last 4 weeks and I can officially say I'm exhausted.  Not only are we ordering out food every night because I'm too tired to cook by the end of the day, I've found for a small fee most places will deliver it right to your door.  I don't even have to leave the house to get it.. How lazy have I become..I could get used to this....

Zachary turned ten this weekend.  It's hard to believe.  He's such a good kid.  I wouldn't change him for a million bucks!  (ok..maybe I'd make him a bit neater and organized but that might just be the OCD in me).
He has two school music concerts coming up.  Concert and jazz band.  He loves playing in band..Sad thing is next year they are cutting elementary music from the budget.   Never sports...always music programs.  My taxes will go up almost 400.00 a year and my son can't even play his instrument.  and that's if the budget passes.  even if it fails, I still pay 270.00 a year more..and no music.  Hopefully the state will restore some aide to our district before the school year begins..

Casey turns four during the week.  I blinked my eyes and boom....he was four.  He is a great kid.  Hands down the coolest four year old I know.  He's outgoing, funny, always sees the positive and loves EVERYTHING.  He was able to eat his pizza and some cake so I know his throat is feeling better.  Four years after he was born so many things are so much easier but so much of it is still so draining.  I turned 43 yesterday but I feel so much older and tired.   Casey decided he is going to learn to unwrap himself once he turned four so he basically takes all of his bandages off himself before a bath and can give himself his own eye drops..I think the more control he can have over his care the less he'll fuss over the things he has NO control over.  Seriously, to ask a three year old to sit still for an hour while we rebandange him is asking alot...thank god for his nintendo DS...  :)

Well, that's about it for us...Hope everyone is enjoying a peaceful week...I'll leave you with some pictures from the week....:)