Updates here

I thought that it might be easier to keep everybody updated on Scott and what is going on here through a blog. I have had this account for months and never actually used it!

But, I have appreciated seeing other folks blogs to keep everyone up to date and decided to follow suit. (Thanks, Kristi!).

We really don't have any new information as yet. We have an appointment with a neurosurgeon tomorrow (Thursday, Aug. 14 at 1:00 p.m.), we are both anxious to see how that goes and what that will mean for Scott. I think that we are both assuming that he will have to have surgery soon.

We are still waiting on appointments for a nuclear bone scan , an nuero opthamologist and an orthopedic specialist.

I will include here a copy of an email that Chuck sent out this morning, as it has some good info also.

Chuck's email:

Hi All,

Thank you all for your tremendous support. Dian and I are overwhelmed by the number of you who have called or responded to my email request. Your prayers are really helping. One thing that Dian had asked people to pray for was a quick turnaround on getting referrals to the tests and specialists Scott needs to see. So far, we have had some success in that area (we managed to get an appointment with the neurosurgeon on Thursday, which was nearly a week earlier than they had originally told us they could see us, and that right now is our greatest concern), but we are also finding that we are not always getting referred to the right kind of specialists, so we’re having to get new referrals. Please pray that God would bring just the right doctors to us and that He would give them wisdom as they review Scott’s tests and what needs to be done.

We still have a neuro-opthamologist to get a referral for, a full body nuclear scan to have done, plus 2 or 3 other referrals – I can’t remember it all. Please pray also that Dian can hold up under this, the bulk of dealing with the referrals falls to her.

Our endocrinologist, who is requesting the various tests and appointments with the specialists, appears to have determined now that Scott does have McCune-Albright Syndrome. It is fairly rare condition and can have many different impacts on the body. Our greatest concern remains the tumor on/near his pituitary gland. We hope to get a better idea what the treatment options and prognosis for this is when we meet with the neurosurgeon on Thursday.

Please continue to uphold us in your prayers. Thankfully, so far Scott does not feel ill in any way, and he in fact has no idea yet that there is anything wrong with him (we’ll deal with that when we know more and what lies ahead for him).

Again, thank you, thank you, thank you for prayers and support!

I will give you another update on Thursday, when hopefully we will know more.

Gratefully,

Chuck


For those of you interested in learning more about McCune-Albright Syndrome, here is a web site that I found useful.

http://www.magicfoundation.org/www/docs/109/mccune_albright_syndrome.html

Please keep us in your prayers, you don't know how much we appreciate and feel them!