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.

Happy Thanksgiving

Hello all and Happy Thanksgiving.  Can't belive it's that time of year already.  The holidays just creep up on me and I find myself unprepared every time.  For Thanksgiving we will be joining my family for a feast at my sister's house.  My children just love their Aunt Kelly..We always say she is their "mom away from mom"..like John and I could die tomorrow and as long as they had her they wouldn't even miss us...  :)  When we think about all we are thankful for this holiday my sister is tops on my list. I don't know what we would all do without her.  My fellow EB moms know how one family member usually steps up to help in every way possible..to learn all there is to learn... to do whatever you need them to do..who is NEVER absorbed so much in their own life that they don't have time to spend with us. .....For us that is my sister. Let's face it, we are all busy..we all have things that take our time and obligations that keep us busy and prevent us from spending time with the ones we love..but we all find time to do what we REALLY want to do...It's not like we don't HAVE the time..we just choose to use it in other ways.  I miss visiting my friends and family as much as I used to but it's just not so easy anymore.  Casey's needs consume almost my ENTIRE day. To keep him alive, healthy, coordinate his care, keep up on supplies, Dr. appointments and therapies is a full time job and leaving the house most days is just not an option when it takes two hours just to bathe him.  I thank the friends and family that understand that and am sorry for the ones who can't. 

The kids have been good.  Zach was chosen to participate in a day of trombone workshops with a trombone player from the metropolitan opera.  It was a great oportunity for him and he really loved it.  So many of our family members came out to watch him in his concert that night and for that he was so proud.  Thank you guys for making it special for him.  School has been going nicely for him this year too.  He loves the teacher.  He is such a smart boy.  I can only remember a handful of times he did not score 100 on a test.  And he got first chair in the fifth grade band..(may I brag that he is only in FOURTH grade)  :)  He really makes me proud.  Becky is growing up fast.  She is a beautiful little angel.  She doesn't give me an OUNCE of greif.  She's a special little girl with a special purpose in our family. 


Casey has been good too.  I almost hate to say it and jinx myself.  The only problem I'm seeing that bothers me right now is that one toe is turning towards the bottom of his foot and the skin is tight and pulling it down.  I've decided to unwrap them in the evening so that he can walk barefoot and sleep unwrapped and wiggle them around a bit in hopes of stretching it a bit.(I just pray his little sister doesn't step on them)...It's just one of the complications of EB..Anyone with any good suggestions, can feel free to email me..I'm not sure what to do about it..if he straightens the toe it pulls the skin and hurts..(Adele...any thoughts, you are my EB expert.....  :) At his last physical he had gained two pounds and grew two inches.  This is thanks to the great blended organic food diet his AWESOME nutritionist opened my eyes to. It has made an incredible difference in the vomiting and his energy level has doubled.  He just looks healthier and feels so much better and wound healing is so much faster with the right nutrition.. And he is loving school.  He's the class pet and I'm not surprised.  He has the personality that can light up a room.  The kids in school love him.  We are due this winter for a bronchoscope..actually overdue.  We keep procrastinating.  I don't like to fly in the winter.  We've had too many bad experiences with the weather..and the prices for airline tickets skyrocket this time of year..We've been looking at an average of 550.00 a ticket.  That's not in the budget right now..Heck, bread and milk isn't even in the budget right now.  Since Casey's been born I have never before been stretched as much physically, emotionally, financially or spiritually.  I have just been drained.  Casey has a sinus infection again..and the associated eye infections that go along with his.   We're back on antibiotics..(the joys of preschool)..before that is was a stomach virus  (the joys of preschool)  and a cold (the joys of preschool) and pink eye (the joys again of preschool)...


Well, as everyone gathers tomorrow, take a few minutes out of your day to reflect upon all you have in your lives to be thankful for. We all have more than we realize.  We are all so hurried and busy every day that we tend to  overlook our blessings  ... Make sure your family and friends   know how much they mean to you and tell your children how much you love them. 

Happy Thanksgiving to all our friends and family and special prayers to all our EB friends..May you have a peaceful holiday weekend.
Hugs,
John, Beth, Zachary, Casey and Becky

Hello..Can't believe it's almost the end of October and Halloween. We love the fall in our house..apple picking, pumpkin picking, trick or treating..thanksgiving...and cool weather for Casey! There are no other seasons that brings us so much fun. It's the time of year that Casey can get out of the house and enjoy the outdoors. We still have a few more outings on our agenda ..hope we can accomplish them all.

It is a great relief to say that everyone here is doing good. My older son got his cast of after what seemed like an eternity. The bone is still not perfectly aligned but it is finally healed. The orthopedist says as he grows it will stretch and fall perfectly back in place. So, for the next few weeks he will have a fracture brace and that's just fine with him because he can take it off to sleep and shower! He is excited because he will be playing in an all trombone concert in November. He received a perfect...yes PERFECT score on his English language Arts state exam and an Above average on his Math state test..add to that he earned a Music Acheivement Award and a perfect mid semester academic report and it makes for one proud mom!!! Now if he could only organise himself we'd be really getting somewhere.

Becky is 14 months old now. She is an absolute doll. She is the perfect baby...REALLY..I swear!
She is just a delight. She loves shoes..she wakes up and we have to immediately put her shoes on and she wears them all day..If you take them off her, she'll follow you around holding them up to you to put on again. Her speech development, as far as I am concerned (nobody else seems to be) is slow. She does say mama, dada, baba, apple, cat and ach (for her brother's name)...other than than she is just quiet. I don't know if it is the chronic ear infections and hearing difficulties she had for 6 months out of her life or the fact that being the third child gives her a disadvantage. See, she rarely has to ask for something.. The boys can both predict what she wants and cater to her. And Casey keeps me so busy I rarely have time to repeat over and over...Say "more"...by the third attempt I just throw her what she wants and go on to something else..I just don't have the time. She is running all over and enjoys EVERYTHING! She is just all smiles.

Casey has been good. He's back to school (five half days in a three year old program)and loving it..I mean LOVES it. He has a great happy outgoing personality (quite the opposite of what I predicted a child with EB would have). He is the class pet..to the teacher and most of the kids. They just love him and he gets all his therapies in school. Our district pays for preschool five days a week, the bus, the nurse and all his therapies..who could ask for anything more!! Casey has had a bad foot injury and blistered both his knees when he fell chasing his brother through a spooky corn trail and he's on antibiotics now for a sinus infection I let go for way too long. I try to keep him off antibiotics at all costs. I can count the several times in his life he's been on an antibiotic for anything. But sometimes you have to concede to the antibiotic. He is going to be a devil for halloween. He's always been fascinated with devils for some odd reason. He says he wants to be a devil with a cape and boobies...(he thinks the muscles on the chest we saw on a devil stuffed toy are boobies)..and he wants a pitch fork so he can fork the kids in his class..(doesn't sound good!) He has a great sense of humor ..I hope he keeps it. Last night was the first time he said to me "I wish I didn't have bandages"..He said it as I was wrapping him so I'm pretty sure he meant he wish he didn't have bandages because he wouldn't have to sit still so long for me. I told him I wish I didn't have "rotten hair' and my older son said " I wish I was taller"..We all wish we didn't have things about us that we do. EB is just one of the things Casey has about him he will wish he didn't ..Not as if rotten hair compares...but when you are three I don't think the things you say have as deep a meaning as we adults think they do. We are probably going to head back to cincinnati for a bronchoscope this winter. Casey has been donig well. We have added vitamin D and fish oil to his regimen. Not much else new. I have gotten so much email about my thoughts on Bone marrow transplant for Casey. I do have my opinions on it and I'd be lying if I said I didn't struggle with it every day. It's a personal decision and one that has to be made on an indivdual basis. There's alot of soul searching needed to be done to explore your personal thoughts on the process and the outcomes. Right now from my perspective, it's still a clinical trial and not a "cure". I think it has a long way to go. Parents exploring this avenue now are inspirational to me as they are paving the way for my son to one day see a cure. But, placing your child into a clinical trial for anything is risky and I am quite the chicken when it comes to risky. I've never been a risk taker. We pray long and hard for each child going through transplant and we honestely root for them and celebrate when they reach a goal. I feel very blessed that parents have shared their journey with us and allowed us into their lives through the process. The are the bravest of pioneers.

Please pray real hard for the Ringold family. They just lost their daugther Bella. She had dystrophic EB like Casey. This is one that really hit home for me and I really miss this little girl even having never met her. Her family is inspirational. Pray for strength and peace for her family and add some prayers for Baby Elle in ICU and our friend Tripp who is going though some rough EB times right now.. We think of all these children as our own. The EB community is a small one but we all care for each other's child as if they were our own. We pray for each other when times are hard and celebrate each acheivement when things are good.

Hope everyone is enjoying a peaceful start to fall.....
Beth