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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!