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....:)

in

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

Hello...I want to thank everyone for their comments and prayers for our family....It was overwhelming...I know a few people had some questions, so I thought I'd give some answers.  I love the people who post anonymously.  If you have questions, please feel free to ask them..negative or positive.  I know when I open my story to the public there will be some who don't agree or who don't even Like the approach I take to my life...and frankly, you have your right.  Even the negative comments have a place.  To anonymous who asked why we would bring another child into this world to suffer after we lost one already..I have this to say...Thank you so much for taking enough of an interest in our family's story to comment...but you misunderstood our story.  I had my older son Zachary first.  He is ten and unaffected by EB.  My second child was our baby Sarah.  She died shortly before birth in utero from complications totally unrelated to EB.  We had never heard the word EB until my son Casey was born, so I did not bring a child into this world knowing he would have EB and suffer. It was a tremendous surprise to us.  Without going into my personal life too much, we took every precaution available to us to assure that we would not have another child AFFECTED by EB and as a result, Becky did not suffer from EB.  So, with that being said, the answer to your question "anonymous" is just that .  We had no idea that Casey would have EB..Our daughter's death had nothing to do with EB. Next time become part of our circle of friends and leave your name so I do not have to address you publicly.  It was not hard to read your comment at all so no apologies are needed.  I'm sorry I've intimidated you into posting anonymously with your thoughts.....I hope I've cleared things up....

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...
Hugs

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....

zach's winter concert

Happy December

Happy December....It's been an exhausting month here..On the brighter side, Casey grew two inches..I can't believe how much he's grown.  I just hemmed all his new school clothes only to unhem them before he could ever wear most of them. With EB kids, you have to celebrate every inch and every pound.  We're still at 35 pounds though..On the other hand, We went through a rough time with Casey for two weeks.  Thanksgiving morning he woke up gagging and coughing...Another blister in his throat.  I can't put into words what it's like to wake up from a sound sleep to watch you child gagging to break a blister that has blocked off his upper airway..and then begin coughing up blood..  If we're LUCKY he coughs up the skin right away..not so lucky scenario is that it hangs in there gagging him until he finally gets it out or it comes up far enough for me to grab it and pull it free. That's right guys..it hangs out of his mouth and I yank it free. Those of you with EB kids can sympathize with me...EB is not for the weak hearted. .....Then over the next few days we listen to him stridor and struggle to breathe as his upper airway begins to swell.  We go back on nebulizers and steroids..This guys is the reason we have not removed his trach.  The episodes continue and they are impossible to manage without it. And why on Thanksgiving??  At church that week a friend said to me..."you know..god's will will never take you where his grace cannot protect you".  I just smiled.  I sat that day and really didn't hear a word of the sermon.  I am very disconnected from accepting the word and I'm not sure I have TRUE faith any longer. I go to church and I just go through the motions..Alot of times I write a grocery list or clean out my purse while the pastor speaks. And it's not the church.  It's a great church and great services.... Some people reading this will understand why I feel the way I do and others won't.  Some will pity me and some will try to 'fix' me.  Your help won't help..It's something I have to work out on my own... Anyway, we managed to have a pretty decent day believe it or not.  Casey is one amazing little boy.  I learn many of the most important life lessons from my son.  He is so beautiful inside and out.  Luckily now he is back in school and feeling well because we have a very busy December agenda and he needs to keep up!!  :)  On our list...See Santa and his reindeers (check), Pick out a tree and decorate (check), go to the two local parades (check) take pictures for christmas (check) make special ornaments with the family and kids (check) ..The only things left on our list is for the kids to shop for each other and their families ..This is the cutest part of christmas for me..when they break out their banks and shop for each other.  Casey took out his piggy yesterday to get money to get his brother a tech deck..and Zachary took out his bank to get Casey a tech deck...I just love my boys.  And this year my family beware...you get what the kids pick out this year ...  :)  I am not going to buy FOR them...And I bet you get the most precious things ...I still have an acorn and one silver earring in a pink ring box my neice gave me years ago...she's 21 and it's still special to me...

Becky is a cutie too.  She is such a girl.  She runs like a girl, smiles like a girl and loves all the girly things...Shoes, dresses and jewelry.  I encourage none of it as I'm a tomboy at heart...it's just like instinct to her..   But what is sooo cool about Becky is that she is dressed in her fancy shoes and bracelets one minute and rolling in dirt the next.  She is everything I've ever wished for in a daughter. 

We also got to go to a great winter concert Zachary was in...He plays trombone in the band.  This year he remembered to wear his suit jacket and didn't fight to take the tie off.  Last year I dropped him off with a suit jacket and tie and when he walked on stage, his jacket was off, tie was not on and his shirt was hanging out. I almost passed out when I saw him. This year he's matured alot and he looked soooooooo handsome.  (ok..maybe it wasn't EXACTLY maturing ..maybe it was the threats of violence I bestowed upon him when I dropped him off about removing the jacket this year?  :)
Well, Happy December all...Take time to enjoy all the magic of the season.