Hello..It's been awhile since we've posted...I think it's just cause we have a sort of boring life...I think about updating and realize I have nothing interesting to write about..Things here have been good..Becky is set for surgery on the 19th of August..she has had ear infections one after another since December...so off for tubes we will go.. I hope we are making the right choice. Her hearing is not what it should be and her speech is not progressing...It's all scary to me....After casey you would think that nothing would scare us...but it does.. we pray as parents we are making the right choice..part of me says if we leave it alone, she'll outgrow it. The doctors say "NO". Anyway she is walking all around the house. It's so cute and in another month she'll be one year old. Where does the time go? she is truly our angel with such an important purpose in our lives that she can't even begin to imagine. she is our distraction from EB. She and casey have the greatest relationship. A few weeks ago she did hit Casey in the eye with a toy when she sat up suddenly as he was kissing her goodnight. That lead to our first corneal abrasion. Casey will tell you " beckaboo took my eye out!" Luckily with some antibiotic and lubricating drops it was healed in two days leaving it alone. We were very lucky with that one that it healed so fast. That was painful for him...In June we got to go to EB clinic in cincinnati. We hadn't been there since he was one so it was nice to catch up with everyone there. All went good...His echocardiogram and EKG was normal. Normal Dexascan (bone density).. His vitamin D on blood work came back on the low end so we are supplementing with some extra vitamin D to prevent the borderline osteopenia he has. With exercise, good nutrition and some extra vitamin D it will stop the progression...We have increased his g-tube feeds from 4 ounces to 8 ounces a feed by going up 10 mls a day. It worked like a charm...turns out we shrunk his stomach giving him such small feed while he was sick most of the winter.. we also had alot of vomiting and poor weight gain with the pediasure so we switched him to a blended food diet. the vomiting has stopped, his energy level has tripled and his wounds are healing so much faster. This is the single best thing we have ever done for him. He's gained four pounds...Yes, it's a HUGE pain to mix and figure out the nutritional requirements but it is soooo worth it. His bronchoscope of his lower airway in the office was clear...the upper airway will be done in the OR in the fall...He has some heat rashy patches on his back and neck for which we are using a new cream...we thought it was a fungal infection but cultures came back negative....other than that, his PT and OT evals were good..he has no issues with his hands or hand function...we added a new pain med to his regimen for that extreme pain he gets with some injuries. We got to meet lots of EB families while we were there and it was such good therapy to talk with moms who could understand what I go through..The kids we met were incredible...I admire every one of them...they are all my heros.
Please send some extra prayers to Daylon and Bella going through transplants right now in hopes of a cure.. they are both going through rough times and could use some extra prayer.

Casey will go back to preschool in september five half days ...and his nurse will travel with him to and from and remain with him in class. He loves school and can't wait for september. We went to meet his new teacher yesterday and I think he's going to have a great year. what a great and supportive school.....John is still working at the hospital but looking to get out ...he wants a slower paced job closer to home...I still work one day a week at the doctor's office ..It's boring work but I get out of the house and the extra money is soooooo needed...My older son continues to play the trombone..It's his happiness in life. Nine has proven to be a rough age.. I find him trying to express his independance lately and fit in with his peers a bit more....He is still such a good boy who got awards in band and a perfect report card..he makes me so proud.

Well that's it for now...I am going to try to post some pictures..I don't know how yet...but I'm trying to figure it out....
beth

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....
beth

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! :)