My new first day

[Guest guest]

:

Glad your first day went better than you expected, though I'd wish it had

been a breeze for you! Hope all that good stuff kicks in and you feel better

soon.

(mom to , age 7, dairy intolerant-related GERD -- currently has

polysaccharide antibody def, previously had transient IgG, IgA, t-cell & other

defs... and also to Kate, age 3!, more dairy intolerant but very healthy!)

[Guest guest]

Hi all,

Today is the first day of the rest of my life... I started IVIG today, it was

odd to go as the patient and not the Mommy to the patient. was

thrilled that it was finally Mommy's turn, someone else getting the needle

instead of always her. She was so cute sat in the chair next to the bed and held

my hand ( what a role reversal) and said " squeeze my hand hard when they stick

Mommy, it won't hurt so bad, ( she was soo supportive, giggly, very cute, all

smiles, the nurses kept asking why so happy) " it's not my turn today!! " So it is

her turn tomorrow so they told her they wanted her smiling so much tomorrow,

" Maybe " she came out with. Anyway all went pretty well, some nausea after lunch,

that's fine I can deal, really dizzy, woozy as the rate increased, it felt hard

to move my head and lift my neck, the whole room would move when I did move my

head from side to side or up and down. Finally told the nurses, took my blood

pressure. OOps, it had dropped significantly, that made the dizziness subside

after dropping the rate, I think I made it to 80 cc/hr than they dropped it, I

also developed a temp, not sure the number close to 100.9-101.. Seems to be gone

now( 5 hours later). We came home and I went to bed, I am so tired, feel like I

am moving in slow motion, talking in slow motion ugh. But, on the whole it went

better than I expected, I am planning on feeling better tomorrow as we go back

to the hospital for 's infusion. So as she is doing phenomenally well,

that is how I expect to feel soon. My dh took the day off and went with me, as

isn't in school and we don't use babysitters she had to go with, they

had a Date for lunch in the cafeteria, it was special all around.

So that is my day.

I have been a terrible lurker lately, not feeling well, etc, I would like to

extend a warm welcome to all the newcomers, good luck to you all as you start

this journey of a lifetime. It is hard, frustrating, but our children are so

special as to have us for parents, us to advocate, love and support them. We

will all get through his together, one step at a time, one day at a time. I

don't want to sound trite with that statement, it is the way we do this

adventure and handle it one inch at a time. We are hear to listen, cry, vent and

support each other, talkers and lurkers alike and I for one Thank God for you

all.

( new dx Hypogammaglobulinanemia) Mom to - CVID, asthma, GERD

[Guest guest]

THOMAS RUSSO wrote:

> Hi all,

> Today is the first day of the rest of my life..

Congratulations! Hopefully, each time will get easier for your body as

you adjust to a therapeutic level in your blood stream at all times. We

can hope anyway!!!!

In His service,

dale