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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!