Re: Pneumonia update

[Guest guest]

I am praying for both of you. I know first hand what you are going through

and know the toll it takes. I know my body has suffered from the constant on

guard and wondering if I am doing all that I can do. I see you doing the same

thing and feel for you. We went to a wonderful retreat this last weekend

put on by IDF here in Washingtons state. I was very impressed with the

committment of the staff, The docs and the numerous companies that sponsored

all of us being there. As a matter of fact I was overwhelmed by the giving

that occurred both in time and energy to our families. Dr. Ochs and Dr.

Smidt were there as well as an allergist, Pharmacist, an insurance

reimbursement specialist, and a nutrtionist. They were available for

questions, consultations and just plain support. It was incredible. I asked

a couple of questions that especially about molds that they looked at me

blankly but I do believe in our case that someday a bigger answer will come.

I think what I go most out of it was the use of subcutaneous Ig and a new 16%

solution which will help with dosing. Lucas's veins are giving out and I am

not sure I want to put a port in. This looks like a possiblity. It would be

given once a week with a pump SQ there seems to be less volume and less risk

for reactions. I will do some more research and let you all know. IT seems

exciting because I know for Lucas his third week his levels are down and he

seems to get something every time and he is so fatigued. Lately we have had

to do 4 sticks each time which is very hard to continue. The SQ would mean we

do not have to have a port and the peaks and trough of the meds would be

eliminated as well as better overall coverage. We did start kindergarten

today . It was difficult but we are working on a 504 and fortunately the

school nurse is a pediatric trained nurse from childrens hospital so we are

on the same page. I would love to see others plans if you are willing to

share. Our fax # is or email it. Better go to bed. I sure

appreciate each of you and was so reminded this weekend when I had the

oppurtunity to meet Kathy (Isaacs mom and felt like I knew her from the 1st

moment) Hi Kathy!!! BARBIE