A quick update...

It's chilly here in Boone! It was much warmer in Charlotte of course, but we were glad we did not have to deal with the storms or snow this morning! It was a rough ride up the 321 mountain last night! Whoever invented those reflectors on the roads is certainly a genius and has probably saved tons of lives!

We are late getting back. Evidently they were running behind today at the clinic. Dr. Patel told us that he is 98.5% sure that Andrew has CVID. Because his last tests came back showing a response to the vaccine, he is not sure. This is not normal. Where have I heard that before? But he checked with colleagues in Houston, and they all agree that Andrew should begin the IVIG ASAP - next week probably. My heart dropped -even though I have had weeks to expect this. He will spend a day at the children's hospital - they always give the first dose where they can be closely monitored. And then we can have the choice of more frequent treatments at home. The group meeting we are going to in Charlotte on Saturday is all about the treatment we are trained to do at home, so we are glad to be signed up for that. So I still have tons of questions but saved them.

Andrew's numbers are some of the LOWEST he has ever seen in a 17 year old. I get the feeling I have been right calling him my "miracle runner" - his immune system is so low that he should probably be sick all of the time. Something in there is working some - God knows what that is, and I am sure He is the one keeping Andrew active. He has been sick and has had steroids and three antibiotics lately. Hopefully this treatment will immediately help him fight off some of this respiratory sickness.

They are going to run one more test that requires a trip to Charlotte. If they can get that test in (it has to be ordered and then sent back off), they will do it when they do his first treatment. It may be conclusive but may not. I think they are trying to solve another medical mystery. And we appreciate their efforts!

The nurse will call us with an appointment to come probably within a week. They will keep tabs on those new numbers and see when he reaches a normal level - this is replacement therapy.

The positive I got out of this today is the fact that they cannot diagnose him 100%. So they will give him a trial time of 12-18 months and take him off treatment to see how he does. All I could hear was this may not be a lifelong treatment, and my heart felt a little better about that.

Thanks for your prayers. I need to go spend some time with people we missed today!

Love,
Wendi

P.S. We could not ask for a better response from Andrew. He is so easy to get along with and so positive and won't make a big deal of things.