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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.........