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Tuesday, January 17, 2012

Overdue update

I know I haven't done much of an update for a while.  We have been WAY busy the past month or so.  I know I total missed a Christmas post.  Thanks to wonderful family, friends and complete strangers the kids had a great Christmas!   We had a couple of secret Santas this year and The Butterfly Fund made sure MANY kids who have chronic illness or have siblings with Chronic illnesses had a GREAT Christmas!  If you are ever looking to donate money to a good cause, THIS would the one!  They help so many with EB and other life long medical conditions. 

Joey is now 10 months!



Stats: 20 pounds!  Size 4 diapers, size 18-24 month clothes (mostly due to bandages)  He is starting to bear weight on his feet!!!  He is currently cutting 4 teeth!!  The first one appeared Christmas Day, the next New's Day, 3rd on the day he turned 10 months and the next just this past Saturday.  His eyes are a mess.  Blisters and wounds in and around both of them.  He doesn't like his eye ointment so that is a struggle.  He still loves to eat as long as he can feed himself.  His skin is about the same; still battling infections most days.

Grace is counting down the days until she starts school (in August)!

Summer is doing good in school and enjoys going most days.  She is busy with Daisy Scouts and attended girls scout camp (just for the day) last weekend.  

Sami is enjoying school and doing well.  She is quite busy as well.  She has some activity 3 days each week after school and is in girl scouts as well.  She too went camping last weekend (all weekend) and it was VERY cold while they were there.  We found out yesterday that the rods in her back aren't sliding like they are suppose too so she will likely need surgery again soon.  We are still battling with the hospital and insurance company about her last surgery so there is no way she'd be allowed to have another elective surgery until that is resolved.  Plus we nor her doctors wants her to miss school unless necessary so he is fine waiting until the summer.  

We finally got Joe's truck back yesterday after 10 days (and a whole lot of money) of being in the shop!

A week from Saturday the Target store I have worked at for the past 10 1/2 yrs will be closing its doors for good.  I am transferring to another store about 8 miles to the west of us.  I worked at that store before for about a month but things didn't work out and I went back to the one I am currently at now.   I hope things will work out better this time.  I start there on January 29th.  

Here are some pictures.  No we aren't at Disney World.  Its called Downtown Disney and is just a place to walk around, look at shops and eat dinner.  It doesn't cost anything to walk around so we meet another EB family there earlier this month.



Summer and Grace with Minnie and Mickey


 all three girls with Sleeping Beauty




 Sami, Joey and new buddy Liam


 Summer, Sami and Joey



Joey standing with help!



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