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Sunday, March 13, 2011

Only a few days from Spring...

Hello all...Wow..I am so glad Winter will soon be behind us.  With spring only a few days away, I have the urge to throw all the boots, gloves and winter socks into a big garage sale bin and take out the shorts...Of course we always have one more big spring snow here it seems, so I guess I'll have to leave them out a few more weeks..I'm tired of looking at it all in the entrance way..  It has been so nice to be able to get Casey and the kids outside after what seemed like years of being indoors.  The kids LOVE to be outdoors.  Casey runs around and climbs up and down his swingset, rides his hot wheels...When you look at him outdoors it's like he doesn't have a problem in the world.  On his swing he can't swing high enough, and he can't go fast enough on the big wheels...he's more cautious than other kids his age, but hell, he HAS to be.  I never thought when he was born that he would be so happy, so funny and so...well, ....Normal???   The child amazes me.  He's been out of school for the last week due to a stomach virus and all the EB related complications that come along with it for my son.  It was a winter of strep, stomach viruses, eye abrasions, colds, more strep, more stomach viruses...and on and on...some of it from school no doubt and some of it from people who still can't understand why they shouldn't bring their kids around Casey if  they are sick.  I still get "it's only a rash"...or "it's just a cold"...Maybe for their child it is...but for a child who's skin comes off his throat when he coughs, a cold is not "just a cold"...and for a child who's skin peels off when he itches...A rash is not "just a rash".  It drives me nuts..let's just leave it at that.   I am hoping that Casey will sail through spring feeling much better.  As if EB is not enough, does he have to get colds and strep throat too???  UGH..
This month we are due for bloodwork and his yearly Echocardiogram.  We are trying to get to cincinnati children's hospital for a bronchoscope and hopefully a look at his esophagus while we are there.  I find he's been having trouble swallowing lately and I feel like something may be brewing...or it could just be the endless strep he's had all winter...Our ENT here says he may need his tonsils out if the strep continues or if he is colonized ..I will leave that one for his super fantastic surgeons in cincinnati to comment on.  I was supposed to reculture him a week off antibiotics but I have not done so....I am subconsciously avoiding it because I dont' want the possibility of having to face one more problem..I just want to enjoy the month of march in my "happy place".    Becky has a double ear infection once again. She can't sleep at night..she cries on and off all night almost every night..If they are not infected..they are full of fluid..and they can say fluid doesn't mean an ear infection..but for Becky it's a GUARANTEE that an infection will follow... I am losing patience with it..I just keep thinking something is causing it...and what is it???  Her ENT is discussing tubes again...but before surgery and/or chronic antihistamines I am going to look into the possibility of a milk/dairy allergy with her..She has chronic ear infections and so many eczema patches on her legs...all signs her ENT agrees point to a mik/dairy allergy.    Tomorrow we are off for a recheck of her ears and then to the allergist.  She is really talking up a storm lately..she's incredibly smart..unlike the boys she can multitask and use common sense to solve problems...I guess it's a girl thing...Zachary is still playing in band..got a perfect mid semester report ..At almost 10 he could be causing me such trouble already, but he is truly the sweetest kid I know.

As we were outside raking up the yard today we came up to our baby Sarah's tree and were once again reminded that this April she would be 5..starting kindergarten....I HATE the whole month of April...I turn the calendar to April and my heart just sinks and stays there until May...I'm lost the whole month.  I am hoping one day ..one year...we can learn to celebrate her but for now..it just brings me too much pain to think about it at all.  One thing that haunts me as I think about it is that we have no "memories"..nothing that you can look back on and talk about...The boys ask me to tell them about her and I really have very little to talk about...No stories to tell them...and in other ways that may make the whole thing easier..memories can HURT too.  I really don't know which one is better. 

John has been faced with some health issues.  I have to respect his privacy and not "blab about it to everyone I know"...He's been depressed and removed from us lately.  So, when you say your prayers tonight please include one for him for his health and one for the rest of us to find a way to cope with his roller coaster of emotions.

So, that's about it from our house.  I hope spring is a peaceful one for everyone...

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