I had to take Evan back to the Urology today. He was up all night because he couldn't pee. So the urology open him back up. I'm so tired of seeing Evan in all of this pain when he cant pee. There has to be something they can do. I'm waiting for the doctors in Cincinnati to call me to see what they say.
I took him to the doctor last week he had and ear infection and his teeth are looking really bad. So he goes to the dentist next week. The doctor thinks they are decayed i hope not. I no the two in the front are just about gone. So my little guy isn't going to have no teeth.
His breathing is still the same. Sometimes when he talks nothing is coming out. So that is a little scary. So i just hope he don't need no trache. I just don't wont that for him.
He is doing good with his weight. He is up to 27 pounds, I just don't no how he don't eat nothing. I guess the milk is doing it.
I just wish it would cool down some so we can go outside and have so much fun. I try to put him in the pool he don't like it no more. I don't no why. He don't like a bath no more either.
Hannah goes in next Friday for an Upper Endoscopy. So I hope everything goes good for that. I hope they can find out why she is having so many stomach pains.
My poor baby does not get a break. There has to be a solution to his boy part, there has to be. You may want to ask other mommies that have boys with EB what advise they can give you. Post something on EB Friends. Will continue to pray for Evan! Please call me if theirs anything I can do for you guys. ANYTHING! Sending you guys my love and prayers. Blanca
ReplyDeleteHi guys..my son casey had this same problem with peeing..I thought I'd share what solved our problem..we had two dilations of the penis opening in cincinnati children's. finally we decided to put a small t-shaped cut in the top in surgery and we have not had the problem again...every once and awhile, he blisters the top of the penis and as it heals, the top sort of covers over the opening and we use a steroid cream and stretch the skin back with our hands and it has always opened it up ...he'd begin to pee and his whole penis would blow up like a balloon and the pee would come out slow...and we'd immediately apply the cream three times a day....I believe it's kenalog...Just a thought in case it may help..it's a heartwrenching thing to watch them scream and try to pee....hope it helps..email anytime..johnbeth91@aol.com (mom to casey)
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