Happy New Year

Hello and Happy New Year...Can't believe it's 2011 already.  Our New Year has not started out as I had hoped.  It has been one sickness after another in our house.  And for the first time in YEARS I have been sick...REALLY sick...  It's not a pretty household when the one who holds it all together goes down!  Dads try to keep it up, but they just don't have the ability to multitask and organize what has to be done like moms.  This winter I made sure that each person in my family got their flu shot on schedule...I was serious about everyone being protected esp. Casey...Everyone that is, except ME.. Last week I woke up suddenly with a 102 fever and stayed that way for six days...sick as a dog...sore throat, upset stomach, chills, fever, stuffed head, body aches, exhaustion...Yep..you guessed it..I ended up with the flu.  Even today as I type this I am only beginning to feel better and it's been more than three WEEKS.  My husband had to stay home one day last week to help out and my family had to stop by and pitch in a hand with Casey..His care is extensive and you can't miss a step..not even when you are sick.. Anyone who knows me knows I can handle an atomic bomb going off in my house without asking for help.  I've never been good at asking for help...Luckily my family just knows when I need it and offers it up without me having to ever ask. Casey has been sick one thing after another for almost two and a half weeks.  So to take care of him sick while I'm sick and still tend to his EB needs just kicked my butt.. First he scratched his cornea..that was two days in the dark crying and hanging on me..two visits to the Eye doctor...then on the third day, he rubbed it and put a second scratch in it...so, two more days of crying, lying in the dark, vomiting from getting so upset and two more visits to the eye doctor when it got infected, not to mention five sleepless nights crying in pain.  Two days later we got the all healed sign from the eye doctor..only for him to wake up with a 103 fever and vomiting.  and he stayed that way for two days..laundry piled up as high as the tables in my house and we ran out of every dish I own ...all the while, remember, mom has the flu.....and see EB complicates vomiting.  The typical toddler vomits, and it's over in a day or so..it's awful when it happens...the endless laundry, fevers, medications, sleepless nights, apple juice sips...  :)
But when an EB kid, or at least let me say MY EB kid vomits, he coughs up pieces of his throat, bleeds from it ...swells the upper airway, can't drink or he'll aspirate due to the swelling for days ..goes on nebulizer medications round the clock for a week or two, steroids, stridors and has difficulty breathing easily...ends up with the cap on the trach being removed...coughing ...producing pounds of mucous  which he vomits up several times a day causing him to scream in pain about his throat for a week, swell it more, bleed more..require us to change vomit filled bandages several times a day.....and the cycle continues and continues...He's still struggling today..He hasn't been in school in two and a half weeks. I missed two weeks of work.  And now he's on to an upper respiratory infection..with a runny nose and a cough...and every time he coughs, he screams his throat hurts..I can only imagine how much pain he must be in.  Every mom will tell you there is nothing worse than seeing your child in pain...well, I've been witness to my child in pain off and on for three and a half years while all I can do is helplessly watch it..Then his G-tube was accidently pulled out for the first time...and he developed a rotten pseudomonus infection on a wound on his neck...I think it's from drooling on it ..His throat is so sore and swollen that he can't swallow his own spit. I think that's what infected the wound.  Well, a few days on oral antibiotics and the wound and the infection is gone.  Than was two more visits to the doctor last week...and did I mention I have the flu?  :)  This last two weeks I have felt the worst and most helpless about EB.  I think your attitude towards things and how you handle them is a refection upon how you feel physically yourself.  When you feel bad, you see the bad in everything.  Everything is negative.  Most people around me now know not to ask much of me in the lines of help these days..  I can barely take care of myself. EB is just overwhelming me.  I thought almost four years later, it would be easier but it's just draining and relentless.  It takes a toll on my whole family.  John and I have no time for each other.  I think we've been out together alone five times in the last year.  I am lucky to have a few very dear friends and family who understand that I'm not a very good friend...I don't return phone calls, usually cancel plans and are rarely there when they need me..yet these few totally GET IT...and I can't thank god enough for them ....The ones that can't understand or have been self absorbed in their own lives have parted paths and that's just sad.  It's sad for me and sad for Casey.   Four years after Casey's birth and I still have friends and family who don't GET IT.. People can be understanding and sympathetic for a while..even a few years...but after a while they just don't understand the need for it..Eb doesn't GO AWAY..THINGS DON'T GET BETTER OVER THE YEARS... We still need help and always will.. I hate that fact.  I have yet to learn how to manage my time and still tend to all his needs, not forgetting I have to throw in the needs of my other two children..one of which is ONE....I need some serious time managment training..Or maybe EB and it's overwhelming unpredictability just doesn't allow for a "schedule" or a routine.??

In the midst of the chaos this month we have a family member that really needs everyone's prayers.  She is a proud and modest person who doesn't like us to solicit sympathy for her over the internet...:)  I've been warned against it. :) So, let's just say family member "A" can use your thoughts and prayers as she is going through a very difficult time health wise.

Well, enough negativity for one post.. Casey is now on the mend and Becky and Zachary are doing great.  I don't always talk much about them. It's almost always about Casey..  :)    Well, Zachary is a great kid..Have I mentioned that before??  :)   He is an angel for an almost 10 year old.  With the exception of being a bit of a scootch around the house he does nothing wrong.  He is social, happy and loves school.  He now joined stage band.  A separate band from concert band that meets after school for the "more advanced" band members. So in addition to two early morning rehearsals, he has one after school as well as two lessons a week..and as long as he enjoys it we will continue to encourage it..to me it's a bit too much band, but it's his passion right now.  He received a perfect mid semester report again.... He just loves school. In five years of school the child has only missed 7 days...Unbelievable..and he has NEVER been late ...Not ever!  Nor has he gotten in trouble even once in five years. I count my blessings when it comes to my son.  He's such a special boy.  I love to do special things for him because he sacrifices without complaint for his brother every single day..whether it's missing a play date or event to help out or just giving up his time with mom so I can help Casey.  He's just the best kid ever...

Becky is almost 18 months and has finally started to spark some words...and her voice is sooooooo cute...Unfortunately I think we have started the terrible twos early with her...She can throw a wicked temper tantrum..head banging and all..Unlike the boys, she is dramatic about it and not easily distracted out of it.  ...On the other hand whenever Casey vomits she runs to him with a towel and holds it by his mouth and if he cries she stands next to him and watches until he's better and then lays her head on his shoulder and kisses him and she doesn't leave his side until he's happy again.  They have a very special bond..  All three kids have been taught to begin and end the day with a hug and kiss to each other.  Don't get me wrong I am referee all day long with the three of them...I get up and put on my black striped shirt and grab my whistle every morning..but deep down inside I have succeeded in raising them to be there for each other no matter what..the squabbling will pass as they grow older and they will know they have friends in each other forever..Family is the most important thing in this world to me and it will be to them too..because that is how they are being raised..
Hope you all have a happy February ....it's like 6 weeks or so until spring....I havent' seen the ground here since christmas with all this snow. Even the kids who couldn't wait for snow, can't wait for it to melt.....I can't wait to break out the bubbles and the swimming pool!!  Spring can't come fast enough...I'll leave you with some pictures of our winter....

Hugs to everyone....