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Tuesday, October 19, 2010

Hello..Can't believe it's almost the end of October and Halloween. We love the fall in our house..apple picking, pumpkin picking, trick or treating..thanksgiving...and cool weather for Casey! There are no other seasons that brings us so much fun. It's the time of year that Casey can get out of the house and enjoy the outdoors. We still have a few more outings on our agenda ..hope we can accomplish them all.

It is a great relief to say that everyone here is doing good. My older son got his cast of after what seemed like an eternity. The bone is still not perfectly aligned but it is finally healed. The orthopedist says as he grows it will stretch and fall perfectly back in place. So, for the next few weeks he will have a fracture brace and that's just fine with him because he can take it off to sleep and shower! He is excited because he will be playing in an all trombone concert in November. He received a perfect...yes PERFECT score on his English language Arts state exam and an Above average on his Math state test..add to that he earned a Music Acheivement Award and a perfect mid semester academic report and it makes for one proud mom!!! Now if he could only organise himself we'd be really getting somewhere.

Becky is 14 months old now. She is an absolute doll. She is the perfect baby...REALLY..I swear!
She is just a delight. She loves shoes..she wakes up and we have to immediately put her shoes on and she wears them all day..If you take them off her, she'll follow you around holding them up to you to put on again. Her speech development, as far as I am concerned (nobody else seems to be) is slow. She does say mama, dada, baba, apple, cat and ach (for her brother's name)...other than than she is just quiet. I don't know if it is the chronic ear infections and hearing difficulties she had for 6 months out of her life or the fact that being the third child gives her a disadvantage. See, she rarely has to ask for something.. The boys can both predict what she wants and cater to her. And Casey keeps me so busy I rarely have time to repeat over and over...Say "more"...by the third attempt I just throw her what she wants and go on to something else..I just don't have the time. She is running all over and enjoys EVERYTHING! She is just all smiles.

Casey has been good. He's back to school (five half days in a three year old program)and loving it..I mean LOVES it. He has a great happy outgoing personality (quite the opposite of what I predicted a child with EB would have). He is the class pet..to the teacher and most of the kids. They just love him and he gets all his therapies in school. Our district pays for preschool five days a week, the bus, the nurse and all his therapies..who could ask for anything more!! Casey has had a bad foot injury and blistered both his knees when he fell chasing his brother through a spooky corn trail and he's on antibiotics now for a sinus infection I let go for way too long. I try to keep him off antibiotics at all costs. I can count the several times in his life he's been on an antibiotic for anything. But sometimes you have to concede to the antibiotic. He is going to be a devil for halloween. He's always been fascinated with devils for some odd reason. He says he wants to be a devil with a cape and boobies...(he thinks the muscles on the chest we saw on a devil stuffed toy are boobies)..and he wants a pitch fork so he can fork the kids in his class..(doesn't sound good!) He has a great sense of humor ..I hope he keeps it. Last night was the first time he said to me "I wish I didn't have bandages"..He said it as I was wrapping him so I'm pretty sure he meant he wish he didn't have bandages because he wouldn't have to sit still so long for me. I told him I wish I didn't have "rotten hair' and my older son said " I wish I was taller"..We all wish we didn't have things about us that we do. EB is just one of the things Casey has about him he will wish he didn't ..Not as if rotten hair compares...but when you are three I don't think the things you say have as deep a meaning as we adults think they do. We are probably going to head back to cincinnati for a bronchoscope this winter. Casey has been donig well. We have added vitamin D and fish oil to his regimen. Not much else new. I have gotten so much email about my thoughts on Bone marrow transplant for Casey. I do have my opinions on it and I'd be lying if I said I didn't struggle with it every day. It's a personal decision and one that has to be made on an indivdual basis. There's alot of soul searching needed to be done to explore your personal thoughts on the process and the outcomes. Right now from my perspective, it's still a clinical trial and not a "cure". I think it has a long way to go. Parents exploring this avenue now are inspirational to me as they are paving the way for my son to one day see a cure. But, placing your child into a clinical trial for anything is risky and I am quite the chicken when it comes to risky. I've never been a risk taker. We pray long and hard for each child going through transplant and we honestely root for them and celebrate when they reach a goal. I feel very blessed that parents have shared their journey with us and allowed us into their lives through the process. The are the bravest of pioneers.

Please pray real hard for the Ringold family. They just lost their daugther Bella. She had dystrophic EB like Casey. This is one that really hit home for me and I really miss this little girl even having never met her. Her family is inspirational. Pray for strength and peace for her family and add some prayers for Baby Elle in ICU and our friend Tripp who is going though some rough EB times right now.. We think of all these children as our own. The EB community is a small one but we all care for each other's child as if they were our own. We pray for each other when times are hard and celebrate each acheivement when things are good.

Hope everyone is enjoying a peaceful start to fall.....