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Saturday, June 5, 2010

Friday, June 4, 2010

Hello all.....Just a quick update..I don't know how people get on every day to update..I'm been so bad at it..Life with the three kids just keeps me sooo busy..I can't find the time...We've been falling behind on our yearly visits with Casey...so we decided last month to catch up...He had his three year old well visit..he is up to 31 pounds...what a struggle it is to keep up his weight....It's worth every moment of it though as I feel nutrition is the key to EB....We had blood drawn..all is normal with the exception of a few markers for inflammation...that's to be expected with EB. His iron had tripled from what it was last year...so all is well there..his bronchoscope was clear...esophagram, EKG and echocardiogram all good..dexascan showed mild osteopenia..No intervention required there they say...his calcium and vitamin D levels were all normal..so they say no intervention is necessary...Although deep inside I feel we should supplement with some calcium and vitamin D. I've got to look into it for doses. Anyone who has any suggestions or are using supplemental calcium or D email me ...He's been at a rotten state of breakdown the last few weeks...I think it's a combination of being wrapped like a mummy in near 90 degree heat...we just turned our air on...a new evening nurse who just can't remember not to pick him up under his arms leaving huge blisters on his underarms...moving onto underwear from his padded diapers and out of the crib into a real bed...we've had a few head scrapes from the siderails until he got used to it..finally this week he is looking good like his old self again.

Becky is still getting ear infections and we are debating tubes....we are just trying to determine now if the fluid clears up between infections or not...it's not the number of infections you get I found but rather if the fluid remains ..I've pretty much decided that if it is not affecting her speech or hearing and the fluid dries up...I'm going to wait it out till cold season and teething is over and see how it goes..her visit with the ENT showed no fluid after the last one and her hearing was perfect..casey's speech therapist evaluated her and says she is right on target...so, we'll see how it goes.

Zach is doing great..he is the most awesome kid in the universe.. his all state band performance earned him a gold ribbon..the best you can get and did I mention he was the only third grader ever to be allowed to participate..he is a great trombone player and he still gets straight 90s and 100s in his acedemics..He is sooo cool .

Well, we are off to cincinnati children's hospital for follow ups with the ENT and Surgeons there..then we'll go to dental and opthamology and a visit at the EB clinic....It's going to be a busy two days..we leave the 16th. What I learned from planning this trip is that if you fly for medical reasons you can get a free flight if you know the right person to contact. we got three VIP seats for free from Delta..Taxes and luggage included. Always remember to ask if you guys are ever traveling..I know continental does it too and not many people know about it.

well, that's about all. Tuesday I am going to a play my zach is in at school about butterflies..he is the grasshopper...I couldn't be prouder... :) Then casey and zach both have field day that week..casey's luckily is preschool and indoors..I am going to try to figure out how to post some pictures of their birthdays, etc one day....That's about it from our house...Hope everyone is enjoying a peaceful time....