Re:britle hair/nail; nasal reflux; eye surgery

[Guest guest]

Hi everybody,

I couldn't catch up with all the messages after our summer vacations

(December / January), but i'd like to comment on a couple of things.

First: I was wondering if Bernardo's britle nails could be a result of

cuticle malformation. His nails are a real shame, so britle, they break

before I have a chance to cut them, besides, they grow in layers. Poor

thing, sometimes his nails bleed and he can not wear shoes.

Second: Bernardo has never had trachaeostomy, but when he was a new born, he

had nasal reflux, which meant that most of the milk he was fed came out from

his nose in sprays , and also mixed with bubbling saliva. He started to lose

weight and what we did was feed him drops of milk. It took hours to feed him

half a bottle of milk, but we were sure no milk was being wasted. After some

time this process proved to be efficient but no longer needed.

Eye surgery: Tomorrow morning Bernardo will have his 11th operation. This

time it will be his right eye, the only `functional` one. His left eye has a

coloboma a cataract and no optical nerve. The problems with his `good` eye

are: cataract ( huge one) , retina, microphtalmia and low pressure. He has a

serious short-sightedness problem (15 degrees in Brazilian measures). My

present concern is ( besides the operation itself, a very delicate one, the

doctor mentioned the possibility of his losing his ability to see forever)

the post operation period, since we had an appointment with the neurologist

this afternoon, and he said Bernardo must not be sedated. Mind you, a 15

year-old hyper-active highly frustrated operated-on charger who can not

communicate!!! Moreover, the optician said that soon after the operation

Bernardo will be checked out to go home!!! In reality, I believe I

frightened him with lots of demands, you see, the surgery will take place in

a medical centre, not in a general hospital and they don't have an

intensive care centre. Just like in 's case, these doctors are not

prepared to handle our children, but I truly believe they're much better off

in our hands.

Please cross your fingers for Bernardo.

Fatima - wife to , mother to Pedro (17), Bernardo (15) and o (11)

[Guest guest]

Fatima,

Patty has a submucus cleft and when she was a baby she had gastro esophageal

reflux. She also had a bilateral atresia. When she drank her milk it almost

always came out her nose. Sometimes in drips, sometimes it poured. We Fed

her every two hours and she had such poor suck it took an hour to get almost

6 ounces down. The bubbles that came out her nose the doctor said was

because of the acid in her stomach. What we did was put some baby cereal in

her formula (prescription) and made the hole in the nipple a little larger.

That did help a little. Also, we kept her crib or anywhere she laid on an

angle, so it could stay in her stomach. The flap that keeps the food inside

the stomach did not develop completely. With time it did. It took a while,

maybe a year or two, but she did well in feeding. She was failure to thrive

for so long, but it worked. We were very lucky here and she did not need

medical intervention. It is just my opinion but you might want to talk to

your doctor about the bubbles.

Everyone wishes you the best with the surgery.

Bonnie, mom to Kris 17, Patty CHARGE 15, and wife to

[Guest guest]

Dear Fatima,

You are in my prayers and the fact that you will be with your son will be a

great " calming " factor as you know his needs!

God bless,

Jackie kenley,San Francisco Mom to almost 21, nah almost 17 and

the CHARGE lady almost 15!