Re: update on delylah

[Guest guest]

,

Wow, it sounds like all your appointments were a mixed bag. We love at CT! She's the one who did the CBS news story with us back in May. That's great that they were able to get you in sooner. I can't remember - was the neuro in Dallas as well or back in Arkansas? How can he recommend against surgery when he doesn't even know the results of the CT yet? Hopefully she won't need surgery at all, and you can get the rx for a band and be on your way. That's great that you have the ball rolling.

Gail, Sam and Sara's mom, DOC grads

update on delylah/gail(long)

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)For more plagio info