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Sunday, March 18, 2012

Hi All!  March is here and spring is upon us...The warmer weather always makes me feel happier....
Anyway...February was a challenging month for our whole household.  EB really took it's toll on us.  Casey was sick.  He got, not one, but two stomach viruses last month.  One is rotten but two is unbearable.  Zach got it, I got it...and John caught it.  I don't know how Becky escaped it.  Vomiting for days straight...and then after one week, going into it all over again was too much for him.  He blistered something again in his upper airway (epiglottis probably) and he has so much trouble breathing.  It was a very scary thing this time for me.  One day he had so much trouble breathing with the cap on that we had to finally take it off. ..and it remained off for five days.  During this period of time, he decided that he was having so much trouble even with the cap off  that he kept pulling his trach out..He'd start gasping, grab at his neck, pull all the dressings out from under the trach collar and rip the trach right out in a panic.  And it was a wrestling match with him to get it in...rolling and fighting.  I tried the calm approach...give him a second to calm down...put it back in at his pace...(usually he doesn't need it to breath so I have all the time in the world) but this time, I took my time and he went into a panic kicking and hitting me and turning a greyish color in the lips...I eventually got him to calm down every time.  It was a hard period of time and he had to sleep in our room in a toddler bed till the whole trouble stopped.  I was afraid to put him in his room alone at night.  I have a pulse ox, but it doesn't really serve it's purpose.  We have the special velcro probes but if he sees it on, he pulls it right off...and if the rare occassion comes where he forgets it's on it beeps ALL NIGHT LONG off and on due to poor contact. His fingers are all scarred.. It was weeks worth of vomiting, bleeding, gagging, swelling, nebulizers and steroids....he couldn't hold down food so his skin looked just awful.  He cried and cried about his mouth and throat hurting.  We had to break out the pain meds... I think it is unfair that my four year old has now taken oxycodone.  It's rare we can't manage his pain without the tylenol or motrin but this time he was in severe pain and it was not fair to allow him to suffer if we could "fix" it.  So he got two or three days worth and we put it away again..hoping we won't have to take it out again until he is six!!!  Thats what it's there for though and when he's in pain, I'm not afraid to use it.  He was dried out so his eyes hurt..and he rubbed him till he ripped the skin off the eyelids and his nose.. I don't know how we were spared an abrasion...  notice how I say WE...that's because everything that happens to Casey affects our whole household.   I'll get back to that point later......
Well this episode with the swelling and breathing has destroyed all our hopes of removing Casey's trach anytime soon.  It was just awful.  We also learned that he should have a larger size trach in order to manage situations like this one..I'm going to talk to his surgeon next time we see him.   Score one for EB.

Like I said before EB affects my whole family.   Yes, Casey is the one who actually has the condition but the effects of EB trickle down to the rest of us in the house and it's as if we ALL suffer from EB.    I'm ashamed to admit that sometimes while my poor beautiful boy begins vomiting or crying from an injury.... all I can think of  last month was poor ME.. that's right...I'm feeling sorry for myself...ex: once again I'll miss breakfast with a friend, etc....he's the one sick and I'm concerned more about how it will affect ME and my life. I'm ashamed of myself.  But I promised you all, that I would write honestly and from the heart and that's where my thoughts are this month.  Don't judge me... I envy the families of special needs kids that can juggle it all and never get depressed..I don't think people realize the stresses EB families face on a daily basis (or any family raising a special needs child)...what we all give up to raise our child... and how we are pushed beyond our limits daily.   I can't tell you how many social events my husband and I miss, how few times we get to go out alone... birthday parties zach and becky don't get to go to, homework I can't sit and do with my older son....family and friends we just don't have time to get together with, friends we have lost and time I miss with my  two year old while tending to Casey.   Not to mention financial stresses...(the cost of traveling for procedures, things not covered by insurance, work missed)   It's socially, financially, physically,  and emotionally exhausting and it's hit my family hard this past month. I'll just leave it at that.  I truly hold dear to me the people in my family and my close friends who go out of their way to help out..whether it's family who will move an event because Casey is ill or changing the location so we can be at home. ..or friends who will stop by and bring coffee or read to the kids for awhile while I do some chores.  I always wondered how the rest of them could be so self absorbed.

Last month I was asked a few questions by readers that I thought I'd address..I've been asked about my thoughts on "handwrapping".    Since birth I have been very protective of his hands. It may be unrealistic of me to think I can prevent the webbing/contractures of his hands but I want to at least say I gave it my best shot. Idon't think there is a right or wrong method of thought.  As of right now, he has perfect hands.  No contracting, no webbing and full function. As a baby I always individually wrapped each finger..we're talking just a few months old ..and I did that until he was about three.. It was time consuming and exhausting but worth every minute of it. There has never been a time bandaging  has prevented him from using them for anything he wanted to. So those of you who prefer handwrapping, you can rest assure your child will not delays because you wrap his hands.   Casey could put a pea into a tiny hole even bandaged up.  Once he turned around three, he began ripping them off ..the minute I put it on, he'd rip it off.  I eventually forced him to keep it on,(after all I was the boss) only to find out that it blistered his fingers at the joints more than if it was left unwrapped. I tried half way up, two thirds of the way up each finger leaving the finger tips open at all times for sensory input.  He hated it and reasoning with a two year old wasn't worth it.  So I tried just wrapping his palm and his thumb ..(I figured at least protect the thumb webspace) and leaving his fingers open...only wrapping when they were injured.  and this is what I still do.  I am what you would call a situational wrapper...  If he is home doing an art project, playing a video game I think it's beneficial to keep them unwrapped..stretch them out..get some air....If he is climbing on the swingset or riding his hotwheels I will wrap them up.  His occupational therapists have always worked, since birth, on activities and exercises with and without the wrapping ..and he has been trained to use each hand equally in case one is hurt.   When he saw the hand surgeon this year, we were told his hands were perfect...and  he suggested we continue with the boxer style wrap but weave gauze and/or transfer between the fingers to put pressure on the webspaces every day.  So, we are following his advice and it's been working out great.   It took Casey awhile to get used to it but now he's very cooperative about it.  That's not to say that I may get concerned and go back to wrapping each finger in the future...but Casey is one of the kids whose fingers get blistered up worse wrapped in the gauze and that defeats the purpose of wrapping them up.  Right now his palms are protected from falls and his webspaces are guarded.  It's the best alternative for now.  I don't think I'll ever be comfortable completely unwrapping his hands for long.

I was also asked about things I add to the bath...I don't add anything to Casey's bath.  I don't use bleach or vinegar.  I'm just not a believer in the bleach.  Now I know it serves a very important purpose in many people's situation..but since you are asking me what I do for Casey, I'm just telling you what is good for HIM...not what is good for everyone else.   I feel bleach does not discriminate between good and bad bacteria..it kills it all....And since he's colonized with staph, what good will the bleach really do. It's also a chemical..and I am one of those chemical free nuts...I'd never use it routinely, but that's not to say if I had a terrible problem with bacteria and infections that I may be running to stock up on it despite my feelings.  Luckily it hasn't happened.  The few times as a younger child he used bleach in the tub, he got itchier  and redder and his skin got drier even with intense rinsing after the bath.   I'm not opposed to the white or the apple cider vinegar but I've just never had to do it.   When at all possible he uses chemical free, dye free, preservative free organic things only, so sitting in a tub of chemical filled water just isn't within my comfort zone.  :)
The boys both have a birthday coming up in May.  Casey will turn five and Zachary will turn 11.  I've promised casey a party with all his school friends. This will be the first one he's had that I'll let him have his friends to.   It's amazing how time flies.  Zach is still playing his trombone and he's getting very good at it. He remains on the honor roll and got a perfect report card.  The best report his teacher has ever written in all her career.  He's reading and writing on a level two grades above his.  Casey is going off to kindergarten in the fall.   He has far exceeded my expectations for what he can do.  I set my goals high for him and expected nothing less than outstanding from him.   He is my wiseguy though.  He has found a way to manipulate every girl in his class to help him with his tasks.  All he has to say is "I can't do it" and five girls run to his side to help.   I'm proud he can put on and zipper his own coat now.  He has the best teacher in the world ..she fosters independence in him in a loving way.  Just what he needs.  He's not all that interested in learning although he is very smart.  He'd much rather socialize.  and everything is a joke or funny to him.  He is such a great spirited kid you can't be sad around him.   Becky is a fiesty little one.. loving and beautiful...with a fiesty side...yeah..that best explains it.  She's in this movie jag where all she'll watch is the wizard of oz...over and over all day long off and on...I used to love that movie..it was the special one we'd take out every  spring and watch together..Now it's just played out.  I can recite it word for word..literally..I know every word.  Most day, Becky wants to be dorothy...then other days she wants to be a flying monkey...Like I said..loving and fiesty...

Hope March is a peaceful one for everyone....Hugs..

Wednesday, January 25, 2012

Well, it's the end of January already. We finally got our first bit of snow..The kids have been looking for snow since september. They were so excited it was going to snow. Sending Zachary and Becky out to play in the snow is a no brainer...Allowing Casey to go out and jump around diving into snow pits and getting hit with snowballs takes every bit of strength and courage I can muster up. Before he woke up in the morning I had decided that Zach and Becky would go out, but I would bring a big pot of snow in for Casey to play with inside ..in our comfortable place..with spoons and bowls and all...I had it all planned out.. Until Casey woke up. He ran to the window smiling ear to ear. He gathered his snowman kit...put on gloves and waited by the door snowball maker in hand....and it was only 8am..... I knew right then that the plan of the snow in the bowl inside was no longer a feasible option. But my desire to protect him took over and I decided to try it anyway...... "casey..how about we bring a bowl of snow inside where it's "warm"instead of going out.  He looks me right in the eyes with his eyebrows curled like the grinch....and says "LAME"..... "I am going out there"...... And that was that...and he had a ball...Here he is in the snow....

And here is his foot later that day....

This is a blistered foot we haven't seen the likes of in years.   Was it worth it?  I say NO WAY...If he had chosen the bucket of snow inside it would never had happened.  However....When I asked CASEY if it was worth it, he said "It sure was..I hit zach straight in the face with an ice ball.  Did you see that mom?"  And from this I learned a lesson...  The foot bothered ME more than it bothered HIM and he was the one that had to live with it! Playing outside..pegging his older brother with a snowball..experiencing the cold windy snow, being with the neighborhood kids, outside building a snowman was worth a blister to him. He is only  four years old, but he says to me..I get blisters even when I stay inside....Point taken.  He's wise beyond his years.  I am sure the blister came from boots that were too big.  I regretted putting them on almost the instant I did.  I thought too big would be better than too small.. His feet were all wrapped up....but, he was walking funny in them and I should have taken them off ..I should have known better.  For four years we have lived with this condition and I still can't figure it out...I still can't outsmart it. It's always the one in control.

Casey had a well doctor visit last week.  He needed a physical for kindergarten.  Can you believe he is going to be in kindergarten this fall???  Where does the time go?  We were happy to learn that he gained 2.8 pounds.  He's 42.8 pounds now and 44 1/2 inches.  His doctor thought he looked better than he has ever seen him.  (He didn't see the foot.)  But with the exception of the foot now, I'd agree with him.  We are so blessed that he does well enough to enjoy so many "normal" things in life.  He got three vaccines...mmr, chicken pox and hepatitis A..I didn't even know they were vaccinating for hepatitis A.. I told him he was so brave getting three shots....He says "no I wasn't I cried like a little girl.."  Casey has had so much trouble falling asleep and staying asleep the past few months.  It's affecting our whole household.  I don't know what is keeping him up..pain? itch?  Doesn't seem to be either one...I've tried antihistimes, melatonin, pain meds...music, dim lights, reading stories...I'm off to get a yoga tape from the library now.  I'm desperate.. None of my kids need alot of sleep.  I seem to need more than they do.   If one goes to sleep at 11pm and one gets up at 7am..where is MY time?  It's catching up to me.  Not to mention John and I have not been out together since october.  (our anniversary).  This year we have vowed to get out more often. We have nursing and we have family that are capable of caring for him so I'm not sure why we haven't made a bigger effort.   His nurses have even volunteered to take him or the others to their house overnight..unpaid..just as a favor. so we could go away overnigt....and Yet I have never taken them up on the offer.  

Last week we had one of those "I hate EB" weeks in my house.  Casey scratched his eye again.  We spent two days in the dark..eyes closed ..crying...We decided this time to use the dilating drops we were given at the opthomologist.  I don't know if it will happen with every scratch but I put them in his eyes and he screamed it burned...and he continued to scream it burned for close to an hour until he cried himself to sleep.  We also battled penis blisters that week as well.  I won't go into detail, but I am regretting not circumsising him when he was born..quite frankly I don't think I could do it now that he is almost five. Then again, if it's not done does the skin protect it a bit ??  I believe the jury is still split on the circumsizing thing.  It may just be a matter of personal opinion.

Next week we are meeting with the elementary school Casey will be attending in September.  I don't anticipate any problems.  Zach spent six years there and they are excited about Casey coming...Anyone with any tips on elementary school and EB kids can feel free to email me with some advice.  I can imagine it's more demanding than preschool. 

Zach is doing good.  He's growing up so fast...well, growing up in AGE ....I'm still waiting for his maturity to catch up to his age!  He made honor roll this quarter, still plays in the honors band and is active in student council.  He really is an angel.  Becky is  well too.  She is incredibly smart.  I am going to enroll her in a summer program for two to three year olds in the preschool two days a week just so she can be a bit challenged.  I mean it...man is she smart.  She is a very strong willed little girl who has both a halo and a pair of horns ..and you never know each hour which one she is going to break out.  She has the most loving relationship with Casey. They are the best of buds.  Becky has always been a caretaker.  She likes to help me wrap Casey up and when he's crying because we are doing something that hurts him, she climbs up next to him and hugs him saying "don't cry becky's here".  And when Casey is hurt he asks for his big brother...Casey has already informed me that when he gets his own apartment he is going to call Becky to help him with his bandages not me. I'm sure he will and I'm sure she will always go! We saw a great show on Storm chasers about a girl with EB who chases tornados...I had Casey watch it to show him he can do anything he wants..and  MAN this girl was totally awesome!!!  Casey tells me he's not chasing tornados...."He'll be hiding in the basement"!  I can't say I blame him.

Well, that's about it from our house.  Hope it's a peaceful month for everyone!


Tuesday, December 13, 2011

Hello...It's been awhile since I posted...Can't believe it's December already.  I think I say that about every month.  The time just gets away from me and it isn't until I get tons of email asking for an update that I realize I'm pretty far behind on my promised monthly posts...Right now we are in the middle of our christmas shopping and preparations.  We are almost done shopping. I like to get that out of the way first as it's the least fun thing about christmas for me.  I like to bake, decorate the tree, see the parades and visit with friends.  I just LOVE LOVE LOVE though taking the kids out, one by one, to buy things for each other and their family.  I just adore how they choose so carefully.  And I let them get what they want no matter what it is..because it's from THEM.  Then they all go home to wrap them up and it's just adorable.  We always start early with christmas activities because with EB you never know when we are going to have an emergency/get sick etc....so you really have to plan ahead.  Last night we decorated our tree.  Just about every ornament on our tree is a homemade special one..ones the kids made in preschool, etc...so it is VERY hard to let the kids handle them to put them on the tree.  My heart is in my throat the whole time and with four ornaments per branch my OCD just kicks into overdrive and I get sweaty!!  I always swear I am going to just leave it alone, but every year, after they go to sleep, I cannot stop myself from sneaking in and fixing at least a FEW things.  We got our nativity set up too.  I try to explain the whole story to the kids every year.  Zach gets it and loves to hear the story...Casey never remembers it from year to year..I don't know why.   It's hard to keep them from playing with my beautiful set...Becky constantly has baby jesus in her doll bed and Casey throws all the figures into the back of a dumptruck which then speeds around the playroom with my glass treasures.  This year I put it up on a shelf instead of under the tree.  I'd love to make a stuffed one. I saw a pattern for one.  One the kids can play with.  Maybe in my spare time next year.

November was one of those months filled with Casey and EB...If I haven't said it lately, EB just exhausts me mentally and physically.   Throw in all the early winter illnesses that you catch in preschool with the EB crap and man it can wear you out.  In early November Casey got sick..sicker than I have ever seen him.  He started out with cold symptoms and it just progressed to vomiting, laying around with a 104 fever for almost a week, aching, tired..sore throat, runny nose...etc..etc...etc..His skin looked like crap and he had an infection on a neck wound.  I took him to the doctor twice...something viral..antibiotic for the unhealing neck wound..and in CASE it may be something bacterial it would cover it..days later as he was seemingly more lethargic and a bit dehydrated to me, I took him to the ER..Now,  he has to be REAL sick for me to go anywhere near an ER especially in the beginning  of cold and flu season..I mean I really have to be scared for him...but a 104 fever for a week is scary for me. ..and his breathing seemed so labored...In the ER, they did a chest xray, gave him some IV fluids, nebulizers...and said it was viral..I am telling you it was the flu.  Ten days before he had gotten his flu shot..so he either was exposed to it before the shot or got a different strain..cause you know you can't get the flu from the shot?? !!  ) .Oh year, and in the middle of it all, he scratched his cornea.  HORRIBLY this time.  The worst one he has ever had and it lasted the longest of them all..four days without opening his eyes..It was just horrible..none of the pain meds helped....all because I passed him a toy, trying to cheer him up and hit his eye..no harder than any other time..I swear it just barely brushed him but I think being so dry and somewhat dehydrated made it scratch easier despite the tubes of eye cream I was applying..  Eventually he was back to his old self and I swore he was not going back to school anymore...it was too dirty a place for him...two days later, I changed my mind.  We also noticed that Casey was having trouble swallowing once again.  He had a dilatation in May and the surgeon warned us it was such a big one that it may have to be done again...and he was right....so we scheduled surgery around our clinic visit in Cincinnati.  John took Casey with his nurse and I stayed with my other two.  In the OR, Casey had the same stricture redone (this time is was much smaller), had a bronchoscope and his teeth cleaned and xrays done.  The dental exam really bothered his mouth for days afterwards.  I think all the manipulating of that small mouth made it very sore.  Good news though..no cavities, no infections, and all his adult teeth can be seen on xray and are all normally developed...good news..His bronchoscope was good..some scar tissue on his epiglottis but nothing to worry about..There is actually LESS scar tissue than there was years ago....We are going to put together, along with his surgeons, a two year plan to remove the trach. ..like the criteria we would all be comfortable with in order to see it gone.  I am going along with it RELUCTANTLY right now.  We are all treading into unknown territory here so it's a guessing game as to wat will happen in the future.  We are hoping that by first grade it will be removed.  I would love to see it go, but if an episode of blistering happens again that he cannot handle, he could die....and he's MY kid.  I was told when he born  and even through the first year that his stridoring was not airway related but rather tissue from his esophagus flapping over into his trachea....So how do we know it won't happen again so horribly that it will occlude his airway one night.  We don't and neither does anyone else, but it hasn't happened to anyone else.. I am a very firm believer that all EB kids should have an ENT involved in their care and if they stridor that they be looked at.  The disease affects the epiglottis in  more kids than I think we realize.  Enough said on that.  John said clinic visit went very well.  We discussed different options for pain...removing one med bringing in another...changing a few doses....Everyone agreed that he is doing super fantastic...  He grew four inches last year and is 41 pounds now...so for Casey getting rid of the pediasure and switching to blended food was magic to his all around well being.  While in the hospital he had his first iron transfusion.  It's been borderline for awhile...iron is so important. It is a part of all cells....it carries oxygen from our lungs to our bodies and helps our muscles store and use oxygen. It is a part of lots of enzymes and used in most cell functions..We've been battling poor iron levels for along time.  I thought eating more things with iron from a natural source may help absorption (he has a gtube so the options are unlimited) ..but it didn't ..They just either don't  absorb it with EB..or use too much of it to keep up with it's supply...Casey has never had a draining wound so he doesn't lose that significant an amount there.  I just think due to EB, his body is just using it up at greater volumes than he can keep up with.  We got to see the hand surgeon this time and we just loved him.  Casey has perfect EB hands.. they have full function and  no webbing.  One of his web spaces is creeping up a bit so we have decided to wrap between his web spaces at night.  Just to give it some pressure ..I've learned that over time they will creep ...How long it takes or how much you can prevent is what I wonder.  Casey is one of those kids who gets blistered worse when you wrap his fingers.  and he just pulls it off...so just wrapping the web spaces, especially just at night for starts is a great way to protect them and not have him pull them off..then we can work up to all day as he gets used to it... His eyes were dilated while there too and his eyesight is good..he has some dry spots on one eye but no sign of infection or trouble.  This is baffling as the morning we took him in, he had green drainage so we assumed it was infected..they said no...So, we are off all the antibiotic drops, etc...she thinks it's some old ointment,creams, mucous,etc..not infections...We also got a numbing drop for when he scratches his eye.  My doctor here said no numbing drops as it delays healing.  He says if the body doesn't feel pain it doesn't react to heal it and the scratch will linger longer and he will open his eye not realizing it hurts and delay healing....I'm baffled as to which is right.  I know as a mother,I'm leaning toward what will take that awful pain away...but my brain says my guy is right here about the healing...So, I'm just waiting for his written report to come in the mail.  I love going to Cincinnati Children's for surgery.  The whole process is so organized, they are all so educated, and care so much about the kids.. His surgeons are superb...and our anesthesiologist was THE BEST this time..I hope we get him again.  He is top notch...

I have to register Casey for kindergarten in a few weeks.. It's hard to believe how far this child has come since birth.  I have learned so much from him.  I really hope that we will have as great an experience in elementary school as we have  had in preschool.

Zach is doing well.  He is acing school as usual....I get it from every teacher..."his maturity has not caught up to his intellegence...Newsflash for them all..I don't think it EVER will..  He auditioned for an honors band and was accepted.  We are very proud of him.  We have been looking for ways to foster his love of music outside of school.  All band programs were cut from the school budget last year.  It's such a shame. Our school makes such a big fuss over the sports programs but places little importance on the arts and musics. 
Becky is growing so fast.  She is so independent and common sense smart it scares me. She is so adorable .

So, that's about it from our house.  Happy Holiday to everyone.. Take a few moments this holiday season to slow down and realize all the blessings that surround you.  Be thankful for you family, friends and most of all for your health.   Kiss your children and tell them you love them every day. They are our greatest gifts.  Hope it's a peaceful time for everyone...I'll leave you with a few new pictures.........

Thursday, August 11, 2011

Is it August already?

Hello everyone...I can't believe it's August already.  School does not start for another month, but I am excitedly getting ready for back to school. What is that staples commercial???  You know the one where the dad dances around staples pushing a cart full of school supplies while the kids walk behind moping.  Well, that's us this year.  I have never wished my boys back to school as much as I have this summer.  I know it sounds awful but I'm growing tired of entertaining them and breaking up arguements over who put the tv on first or who had the chair first...wow...it's been an exhausting summer.  I have to remember that deep down inside they love each other.  And they are sooo cute ..They love each other ...are annoyed by each other, wish each other away, can't wait for each other to come home..My older son reads to casey a special story every night before bed and every morning they cuddle on the couch ..Everything inbetween morning and bed time though is chaos..I suppose it's normal sibling rivalry...and anything "normal" casey does..even if it's fresh makes me smile...I remember doing those same things with my sister and now we are the best of friends...so I guess there is hope.

Becky will be two in two weeks.  Where does the time go?  She is just so sweet.  She loves to take care of Casey.  She hugs him and puts bandages on him.  She is just too cute. They are the best of buddies.  On the other hand she is so strong willed that she is a great challenge to parent.  The boys were easily distracted ..If they wanted a piece of candy and I didnt' want them to have it, I could distract them..like "hey look at that worm over there" and they'd run..forgetting all about the candy.  My daughter will follow behind me for an hour or so saying "candy"...relentlessly .  She is speaking in two and three word phrases now so we know what she wants most of the time now.  I was worried about a speech delay, but she's really caught up and even surpassed what she should be saying for her age.  She can put on her own shoes and socks, brush her hair and teeth by herself, take off her diaper, get a new one, put on pants and shirts (with assistance).  She is way too capable.

Zach is ready to go back to school.  He loves school and the routine of it all.  He's a bit discouraged that the elementary music programs have been cut from our district.  Seems music is the first to go.  It kept him interested in school and out of trouble.  I hope he can find something else he will enjoy this year.  He's a really great boy.  I pray every day he stays that way.

Casey has been doing good.  We are looking forward to the fall and some cooler weather.  We're not able to do much outside during this hot weather ..fifteen minutes or so and he's all red.  We spend alot of days in the little pool outside or in the sprinkler.  He loves water.  On hot days in school he runs errands around the school or stays in with his nurse and a friend he can pick.  His school is sooooo good to him.  I am going to miss them all next year.  This september he will attend the same preschool but instead of the special education program he was in this year (at three years old) he is going to be mainstreamed into a regular universal preschool program in our school district.  He proved this year that he can keep up with the others socially and physically.  He is the most loved kid in his class for the teachers and the other kids.  He really brings humor to that class.  Like I've always approached life with Casey...assume he can do it until proven otherwise and work backwards then.  He has exceeded all my expectations.  He runs and jumps, rides his bike, climbs the swingset..and if he gets hurt, we just patch him up and send him back out.  Nothing stops him from what he wants to do.  He is more cautious than most kids his age in his approach to things but he has to be.  This year (at four years old) he is finally becoming aware that there are differences between him and other kids.  Last year a little boy asked him what is that on your neck?  (referring to the trach) and he said ..What??? theres nothing on my neck silly!!  ...this year, only one year later, I get..why do I have EB but Becky and Zachary don't?  Well, this was my big parenting moment...I had my chance to say something profound and full of meaning...Instead I said....."cause YOU got screwed". ...There goes mother of the year again this year....that's all I could muster up. Pathetic, huh?  But in many ways, true.  :)   ..He just started laughing and singing.."I got screwed"  and the moment was over.  Next time he asks, I'm going to be better prepared.  I promise. ....Anyway, we are still battling eye infections off and on since the last corneal scratch.  I have tried every drop, cream, itch, dry eye combo out there ...We've washed hands fifty times  a day...cleaned up arm bandages that may rub against his eye many times a day..I am off for a second opinion later this month.  Our highlight of the month was finding sandals that would fit Casey.  Yes, his feet are wrapped ..but he really LOVES having sandals like his brother..and so far we have had no blisters from them....I know it's a little bit geeky to wear socks with sandals..but I'm not about to unwrap those feet..I'm most protective of his feet.  Our lowpoint of the month was when we unwrapped his hands for bedtime.. If we don't unwrap them before bed we come in to find he has done it himself anyway..he hates them wrapped...so we compromise and unwrap them before bed.  This particular evening he decided to stand on his bedrail and jump off like batman.  Of course the rail could not hold his weight and down he went on the palm of one hand.  All the skin peeled from the palm and was clumped on the side of his hand in a ball. He screamed like he hasn't done in ages...After I wrapped him all up, my husband says to him..."casey this is going to suck in a few days when it starts to heal"  (casey hates itchy and it gets itchy and drives him mad as these types of wounds heal)..So casey says to him..  "what do you mean in a few days..it sucks RIGHT NOW"...and we all started laughing and he forgot all about the horrible hand wound.  I wanted to punish him for saying such an awful word, but really....It did suck. .... The hand is healed up now and I don't think he'll try that one again.  This month we are scheduled for a dexascan (bone density) and an echocardiogram as well as a dental visit.  Casey's well visit went great.  He gained another two pounds.  He is just ounces shy of 40 pounds..and he is 39 inches..up an inch from last time.

I got alot of email last month asking me my feelings on the bone marrow transplants being done and if I have considered it for Casey. Honestly speaking,  we have looked into the two different protocols being explored extensively..we had Becky and Zachary tested and they are not matches for Casey unfortunately.  I may have been a bit more apt to do it if he had a SIBLING match.  The age group Casey falls within has had the most complications.  I follow each child closely and have spoken and met with the doctors doing both protocols.  The protocol being explored in our closest hospital accepted Casey as a candidate, we set a tentative date and I backed out.  He has on reserve two perfect matches from the public donor bank with a high cell count (more than what is needed for the study) but that will change as he grows and gains weight.  The samples will become smaller in volume compared to his weight... They also found four very close matches they were happy with.   I am just waiting for some sort of sign that says it's the right thing to do and I haven't gotten it yet.  My heart still says it's not the right time..and I always follow my heart...Maybe it's a bit of my selfishness..not wanting to take a chance at losing him right now....I don't know...As he gets a bit older and they fine tune the chemo regimen, I am going to re explore.  Never since Casey was born has there been so much hope for a cure.  I hope funding continues to go to the right places. 

Well, it's getting late and I have to get to sleep.  Hope it's a peaceful end to summer for everyone ..

Wednesday, June 15, 2011

 Wow..June is half way over already......It's been a busy month. (I think I write that every month lately!!)  June is end of school month here.  The 24th is the boys last day.  We've had concerts, moving up days, talent shows, plays, parties, field days, field trips...The kids are having a ball but man is mommy exhausted from it all...and it's all been crammed into two weeks.  They only have two weeks of school left though.  One and a half full weeks and the last two days are half days.  ...why does the school throw in two half days at the end....Reallly, can't us parents enjoy just two more whole days of peace before we have them home the ENTIRE summer??  :) 

I learned a few EB lessons this month.  We've had a month of eye troubles..abrasions, infections..We've gone through four different eye drops for allergies, antibiotics..lubrication...And we still had an infectionn, dry eyes, itchy eyes..and injuries from trying to get them all in playing with his lids...  He had alot of green discharge for more than 4 weeks ...even on the antibiotic drop.  I couldn't figure it out and the eye doctor just kept prescribing them.  One day I decided to culture the discharge (it was a big green glob). Turns out he has two different staphs growing in that eye..each with different resistances. The eye drop he was on was one that came from a family of antibiotics one staph is resistant to. It only cleared up the one staph and the second one was still in there.  We then had to add a second drop, erethyromycin (it was about the only antibiotic that it was not resistant to) and boom....eye cleared up.  So, lesson learned..you can culture eye discharge...and there are different drops that contain different antibiotics..if your eye infection does not clear up in a few days with those broad spectrum antibiotics...try another family of antibiotics ..sometimes there is more than one germ in there and there are apparently lots of different types of staphs with different resitancies.  Wish the lightbulb in my head would have went off a few weeks earlier.  Anyway, the scratch was gone two days and he was feeling much better.  The eye still had a few dry patches on it even though we use lubricating ointment and drops everyday several times. Turns out that you should use a perservative free eye drop (the ones in the individual vials) because the continual use of perservatives daily in the bottled ones over time irritate the eye and cause you to rub it..in return causing it to dry out rather than lubricate.  That's why he was developing dry patches even though we really lubricate them.  The dry patches make it easier to scratch the eye.   Learned lots about the eye and EB this month.  Really, is there any complication Casey will be spared...even the rare never seen before in dystrophic seem to find him.

He also went to his first "friend" birthday party this month. He was so darned cute and had so much fun.  It was outdoors but not a terribly hot day..He swung at the pinata, ate some cake and played on the swingset.. He even wore the superhero cape.  (it was a superman/batman type party).  He loves to pretend..My older son was more of a realist...He'd never wear the cape..he'd say.."I'm not superman, I'm a boy."  Casey threw that cape on, put his arms up and spent hours chasing his friends pretending to be superheros.  It was a day of well, "Normal kid stuff for casey" and no irreversable damage had been done..not even a blister.  Wonder why I worried about all the horrible things that could happen all week leading up to it?  He had such a good time. The kids from school are awesome with him.  He couldn't be luckier on that end.  You just can't NOT like Casey.  He had his end of year ice cream party this week. They all made flag shirts.  They sponge painted some stars and for the stripes they used their handprints.  I just love his school and his teachers..Now, I was a bit nervous about painting his hand and all and getting it all off, but lesson number two this month (as long as there are no major open wounds) ..If you want to paint a child with EB's hands, first coat them with vasoline, rub it in, and then paint the hands..we made handprints on the shirt and simply wiped off ALL the paint easily. 

That's about it from our house...Remember to slow down and count your blessings. Once you sit down and think about it, you'll see that you have so many more than you ever realized.....

I'll leave with some pictures of our three little angels....

                                                             Casey running in the sprinkler
                                                               Becky 22 months
                                                           Becky at the aquarium
                                                         Zach 4th grade field day
                                                         Casey with his superhero cape
                                                  Zach and Casey after his jazz band concert

                                                        Casey end of year party at school

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....:)


Tuesday, April 5, 2011

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