update on delylah/gail(long)

[Guest guest]

Hey everyone,

i just wanted to tell you that delylah just had her first trip out of

state on tues. & her ped. neuro. appt on wed....OH AM I VERY

TIRED....i didn't think it would be that hard..i didn't think about

changing diapers or anything...well, looks like my sis-in-law will

have to come with me....but here it goes...we left 9 am and got there

1pm to dallas, 4 hrs., which is pretty good timing.....our appt was

at 4:15, i called in & told them that we were there & they said to

come on in....well, the OT, jennifer said that her head was not

severe compared to all the other bbs she band, but that she has

treated bbs like D...they took pics so i could show her pd. neuro.,

the ppl there were very nice ...that was mostly all and she said to

call & update her...

well on wed., we saw her pd. neuro. at 3pm..he was a mid-sized jolly

o fellow...he was actually friendly & i felt very comfortable talking

w/him..he examined & took measurements... & later said that it was due

to her sleeping position..and he told me that one of her lambdoid(sp?

correct if wrong) might have close, but that most neuro. surg. would

not have surgury on it... & ordered a CT scan for tues. at 8:00 am ..i

hope it has not closed tho bc it could lead to more abnormality,

urgh!!...so would anybody have surg? he said that he doesn't

recommend a band for her bc. he can't recommend something that he

isn't familiar with, but that he will help refer me to someone who

is familiar with p. plagio.; i asked him if he would band for his

child if they were like D's & he said no..he also said that it was

cosmetic & she will never notice unless someone has pointed it out to

her..i told him you know i don't care if it's cosmetic..i'm willing

to put $$ out, i will pay for it, it's just that i need a Rx. & ppl

have pointed it out, she don't know it but i do.. & the thought of ppl

who knows now could say something when she's older.....i asked him a

couple times if he's going to recommend a Rx...but he said he will

not recommend, but will help me if i want to pursue that...oh another

month!!...i'm going to try & ask my ped. if he will... & i'm going to

try to ask the pd.neuro. if he could recommend me out of

state....which i think will be a tough one...i'm just hoping that all

her sutures are all open & that ct will go okay..i feel like i'm in

the dead end..in AR

-mary mom to D (almost 8 mths)