Ok, you all win!!

[Guest guest]

The pulmo office called me back today about Olivia and her abx, and

Brennan and his coughing again and runny nose and sore throat. I got

he nice nurse today YAY and she said I should be expecting a call from

ID clinic. (she called my cell while I was out)I told her I had

already heard from them, so she said, then you know the first infusion

date is...and at the same time I said, May 24th, she said, April 5th.

and then we both went WHAT!!??she said, no, the date IS Apri 5th, I am

looking at it right in the computer, right now. So I asked why I was

told it would be on the 24th along with the pulmo and ID appts. She

said,......well, pulmo got ahold of that date and flipped and had

a " little talk " with the ID receptionist, and even the ID dr, and told

them we CANNOT wait for this(this is the same pulmo who emailed the

surgeon 30 times a day when she decided the boys needed the nissen

till she got a date, and " stopped in " the ID drs office every hour on

the hour till she had appts for all 4 kids, in less than two weeks)she

is very persistant!!and has always been the type of person to be

vicious when it comes to " her kids " . (translate, you dont wanna get on

her bad side, but she is AWESOME to have on my side!)

so, here it comes. It's here--guess grandmas gonna be stuck in KY for

awhile longer!!LOL--and this will be that week...appt to apply for

savannah for ssi on the 27th, my appt to start xolair on the 28th,

donovan's overnight EEG in Ann Arbor on the 29th, infusions on the 5th

of April, Donovans birthday on the 7th(which is also the day to finish

my root canal.)I guess I better start getting extra sleep now before

that week comes!!LOL

I am going to have to just make up my mind and jump in with both feet.

I need suggestions on what to do with brennan during infusion. I often

go to s website and see that Conner is always in bed during

infusions. The infusion room in Ann Arbor is suppposed to have a ton

of fun stuff to do. So, does it just depend on what hospital as to if

you are stuck in bed or get to be up and play? I guess I am just

reliving the multitude of times that he has yanked out ng's and iv's

and hoping this doesnt happen again. With Savannah I can use some of

Dales suggestions, like painting nails, reading, even bringing the

portable DVD player. But, what to do with a

superhypercrazyneverholdstill 3 almost 4 yr old? Any thoughts?

Pam, have you been in the infusion room? whats it like? And how to do

it all alone? If only I could split in two!!

thanks again,

valarie

mom to

Olivia, 9, allergies, asthma, GERD

Savannah, 8, severe asthma, allergies, CVID

Donovan, 5, severe asthma, allergies, TBM, low IgA and IgM

Brennan, 3, severe asthma, allergies, TBLM, hypogamm

side note---I asked the nurse if there were any reasons Brennan should

not have his infusion in April, like if he is too sick(we switched abx

again today, evidently the ceftin isnt working)and she was quiet a

second......and said, really, Valarie, no matter what is going on with

him, he NEEDS to be here. This is what he needs........this is the

reason he is always sick like that. This is what is going to help. It

made me feel better that she is so SURE. I am ok with this.