update and warm fuzzies

[Guest guest]

I have been following the posts for a while now, but just haven't had the

energy to reply. I am sorry so many of the little (and big ) pumpkins have

been ill lately. I was also very saddened to hear of Davin's passing. This

hit especially close, because his history was so similar to Nettie's, right

down to the fact that he was adopted.

Barb, I do believe that he is having the time of his " life " now and you will

definitely see him again. How wonderful to think the next time you see

Davin, he will be running and completely HEALTHY!!!!! It will be truly

amazing :-).

We have been very busy here. Nettie is holding her own, but has had two good

size sinus infections these past two months. She had been totally infection

free for 5 months (since restarting the IVIG). I suggested doing the

infusions every 3 weeks vs 4 weeks or increasing her dose (she gets 12g), but

the docs so no to both. They don't see how either will help. Don't buy it,

but to tired right now to fight. If she gets a pneumonia though, they better

watch out because I will be on the war path again! :-)

We have been trying very hard to find help for . He continues to

suffer from a very severe sinus infection (CT was extremely impressive!!!).

He has been on an antibiotic every month for 22 months straight. Some times

he was treated for 6-8 weeks at a time to no avail. We had his adenoids

removed and tubes put in. The tubes did seem to help his ears, as he has had

no ear infections since the surgery. However, he started with the sinuses

just 1 week after surgery was over and hasn't stopped since. We are now

scheduled for sinus surgery on the 26th of Dec.. I am very nervous about

this. The pediatrician is also and wants another opinion. He is of the

thought that this is fungal in nature (my thinking too) and that we need to

rethink our approach to his treatment immediately. It is his hopes that we

can get a culture soon to see what we are dealing with. For now, all

antibiotics have been discontinued in hopes of finding a better solution to

the problem. So he suffers more. I am so frustrated having to watch him

suffer. I know you all know how this is. I went through it with his cancer,

I went through it with Nettie with all of her complications, but I am tired

of watching them suffer.

Ok. Done venting. I do hope that every little guy and girl starts to feel

better immediately!!!!!!!!!!!!! I am sending lots of good healing thoughts

to that broken arm out there (sorry can't remember the pumpkins name). But

the thoughts are still going out!!

Take Care and God Bless.

Mommy to 10 yo Annette (IgG subclass 2 and 4 deficient, developmental delay,

g-tube, asthma, lipodystrophy, spastic CP) and 5 yo (brain tumor).

<A HREF= " http://www.pilink.com/ny/my2angels/index.htm " >Click here:

CaringBridge - my2angels</A>