for Dale, & Amy

[Guest guest]

Hi Guys!

I'm one of the lurkers that don't post much either but thought I should for

a change. As far as anyone in the Denver area, we lived there for 25 years.

Our son was diagnosed with XLA at National Jewish Hospital in Denver. We saw a

Dr. Erwin Gelfand there. We loved him! We received infusions there also. It

was a great experience.

For Grandma 's question about explaining the problem to young

children, we told our son , who has XLA also, that everybody has an army

inside to protect them from the bad germs on the outside. Unfortunately, we

don't have enough solders in his army to fight the bad stuff so we had to go and

get more solders once in awhile. We even gave him little plastic solders to

play with for the first few infusions. He seems to be ok with that explanation.

For Dale, our prayers are with you. Having teenagers and young adults in

our home, I can somewhat understand your frustration. But you are a very

religious person. I'm sure you've heard the expression " Let go and Let God " .

Everything happens for a reason. Just trust God to take control for awhile.

You haven't done anything wrong. Are you seeing a counselor at all? It might

help you to keep things in perspective. I find it very helpful when I'm feeling

overwhelmed. You can cry, scream and then heal a little there. I and I'm sure

everyone would agree find your postings invaluable. You are one of those rocks

that we can count on for support. Maybe you can count on us for some support

also. You can vent to us. We are here for you and we will be saying a prayer

for you!

Janet

Mom to , age 8, XLA, infusions every 4 weeks.