well, hello everyone..I have not posted since January...boy time sure flies...casey turned three this week. My Zachary 9. I don't know where the time goes..casey had strep for this birthday. The poor kid can't catch a break! The day before he had an esophagram..No strictures...well, at least we THINK there are no strictures...and if there IS, they have to be insignificant....He cooperated nicely for the first half of the test, but the second half..lying on your stomach part..he decided he was done and we couldn't go any further..he got upset and vomited barium all over his daddy. so, we think it's good..the films will be put on disc by radiology and sent to his surgeon in cincinnati to review. We have an echocardiogram scheduled this week (routine yearly) and a baseline dexascan (bone density) to get in before the end of the month. Then I believe with the exception of a dermatology and GI visit and a trip to cincinnati, we are done for the year! (EB keeps you running). Casey is now potty trained..that is during the day at least...he still wakes up wet in the morning...but we've come a long way..in return his reward was a new "big boy bed"..My baby no longer wears diapers or sleeps in a crib..I feel he's all grown up! :)
Zachary's band played at the state music festival and scored a gold rating...the best you can get..He loves his trombone and he is soo good at it. he is the youngest one to play in the band.. I am very proud of him and he aces school...all top grades..
Becky is 9 months old now. She is crawling and standing up and destroying my house and my patience..At 42, I am just too old to chase an infant. She is the most patient and content child I have ever encountered. She is happy every moment of every day. She is just beautiful..
And yesterday I turned 42..... Casey got a pool for his birthday..he loves the little pool...unwrapping and doing bandage changes afterwards is rough.. I am going to try to post some pictures later this week..as soon as I figure out how...

Hello..Just wanted to let everyone know that Casey's bronchoscope showed a clear airway again. So, once again, we are forced to revisit the same old question. Do we remove the trach or do we leave it in?? My maternal instincts to protect him say ..NO...My desire to move him forward and the realization that his trouble may have been a one time thing makes me doubt my decision. He has had a clear bronchoscope 6 times in 18 months..basically since the first episode...so, the surgeons want it out...and by the way..they are the two most fantastic men I have ever met..especially in medicine..and probably the most experienced with EB in the world..I trust them, but HEY..it's not THEIR kid if they are WRONG!! So, we will revisit it in 6 months when we are able to save enough money to fly back to Ohio... His esophagus is clear of strictures too, which is good news as well. With EB you have to take the good when you get it..sometimes it throws you a bone..and other times it just punches you in the face...The unpredictability of this disease is what scares me the most. But for now, I will enjoy the easy time ..knowing at any moment it could change. Zach is still enjoying his trombone and is now helping the younger kids in the band..He is the first third grader allowed to play with the fifth grade band. Becky is 5 months old now. She is teething like a monster. She is an angel. The kind of baby that makes you want to have 12 more. Luckily I have Casey ( who although a blessing, makes you never want to have another one!) to even out my thoughts.. Hey, I like this blogging thing..It's like therapy without the $300.00 an hour bill! Thanks everyone for your support of our family....

Well hello all. I have been trying to put this blog together for almost a year. I still have to add some links and information and fix it up a bit but for now, it's up and running! It is so hard to email everyone who asks about our son individually so at your requests, here you go..this blog's for you!! Please log onto our page and follow our journey! I have vowed to share the good, the bad and the crazy! I'll begin posting later in the week, but I wanted to let you all know I finally did it! :)