Hi from Dale

[Guest guest]

from Dale, Mom to Katy, CVID,age 19

trying to catch up with old stuff -- so hang in there. Welcome to our

new members. Ask questions -- we'll all try to give you our 2 cents --

if you don't get an answer, ask again -- because we all get times of

busy-ness or sickness where we just " lurk " and let everybody else do the

talking. That's what I've been doing these past few days.

you ask what I meant by my Mommy care actually preventing

documentation. I think that after we got the diagnosis, Katy's

pediatrician was as honest as she could be with us -- most of the stuff

Katy was catching didn't need antibiotics - it was just piggy-back

viruses and I got to where I didn't even tell the pediatrician how many

days she was sick. Because we home schooled, I could just work around

how she felt so there really wasn't any documentation as to how much she

was sick. As a result, when we tried to talk to immunologists -- they

wanted to know how many infections, etc. and we didn't really have any

records. There was one period of time in there when I felt that Katy

was just having too many infections and not getting proper response to

IVIG and I asked her pediatrician if she wanted to know every time --

she was surprised to know that I hadn't been telling her. She assumed

that because I only brought her in once a month that that was the only

infections she was getting -- when in actuality, I only brought her in

when I felt that she had crossed into something I couldn't handle. It

was a real turning point in our relationship and helped her to

understand that when I brought Katy in -- it was because I suspected

that she needed intervention and I was NOT the kind of mom that brought

her in for every ache and pain. So, be sure you communicate clearly

with your pediatrician and ask her what level of " informed " he/she wants

to be. It was just a period of time where I thought I was doing the

best thing by taking charge and actually her pediatrician was getting a

different picture of Katy's life. It really helped to clear the air.

Yesterday as I was going in for my appointment, I ran into Katy's

wonderful pediatrician and got to thank her again for the terrific job

she did in holding us all together through that terrible time. Remember

to write your pediatrician thank you notes or even send him/her flowers.

I remember sending her pictures of Katy's successes (performances or

events) and saying ''thanks for helping us get to this point! " It

really makes them work harder on your behalf!!!!! Don't forget to

reward the good ones that are out there!

In His service,

Dale