First appointment today and what's to come

Justin had his first appointment today with the pediatrician to see what stage we're in with the neurofibromatosis (funny thing, I've spelled this so much I don't have to look it up anymore?). The pediatrician had him strip down and searched him for discolorations on his body called cafe au laits. After searching him extensively (checking for discolorations, checking his joints, spine, etc), she told me that he has zero cafe au laits on his body. None. The problem is (or the praise?) that one of the main symptoms of neurofirbromatosis type one is these spots. She said you can have it without them, but it's very uncommon. She also said that his muscle tone is great, so she's extremely confused by the diagnosis. She's marking it down as a mild case for now and said she wants him to go ahead and see the opthamologist (tomorrow @ 1:00), get his MRI (they called to schedule, but since he has to be sedated, they're calling back), and see the geneticist (he'll have ALL the answers, apparently...).

The absence of the cafe au laits made me research type two a bit more, also and I'm praying fervently that's not what we're dealing with. It concerns me because the tumor they removed from his neck was on a nerve to the ear (if you recall, he had some major ear pain post-surgery). So please, be in prayer that's not what this is all indicative of because type two would be so much harder on him, regardless of the severity.

Another thing about neurofibromatosis is the tumors that grow cause pain. While Justin's tumor didn't cause pain directly to the spot, he was in pain and he wasn't resting well. Since that filth has left his body, we've noticed a significant improvement in his sleep patterns (not sleeping as much) and his mood altogether. So if nothing else good comes of this, praise God my baby's not in whatever pain this was causing him anymore.

If everything there comes back clear, she's going to request a second opinion on the biopsy reading (another pathologist will review it). She said it is all pretty black and white as far as diagnosing this particular disease, but there's just enough grey that it could be read differently by a different set of eyes. If the second opinion still shows neurofibromatosis, then one of two things is going on. One, it is a very, very mild case or, two, it just hasn't started progressing yet. As I said yesterday, the common diagnosis age is 3-10, so he's just on the edge of being where it's even diagnosable (is that a word? Not sure, but I like it...). It could appear to be nothing and then just break out rampantly, it could just be a very mild form, or it could be a misread.

I'm not holding my breath for a misread. This doesn't mean I don't have faith, but it means I'm already going through the process of accepting it and I don't want to get my hopes up and start all over in the process. I didn't sleep last night and neither did Jesse. Funny thing is, I don't think either of us realized the other didn't sleep. How does that happen?

On the docket for tomorrow- Justin and Jaleigh both have follow ups to be released from Dr. Vaidya @ 10:30 in the morning, then Just will have his eye tests done @ 1:00 tomorrow. Then, we'll finish the day off with my OB appointment, where we'll hopefully get another sono to tell us exactly what our little bean is. This will be huge and we'll celebrate. I think our little family needs something to celebrate and I'm hoping baby cooperates and removes the foot from the crotch. :)

Many of you have asked how Jess and I are doing. We're okay. I'm exhausted, he's exhausted. We have so many questions and they're the type of questions you can't google. We WILL get through this, though. God may not provide us all the answers, but he'll provide us with peace and a means of coping. We just need rest. We need rest for our bodies and rest for our souls. It doens't look like rest for either is coming anytime soon, but again, He'll carry us through. It's seriously just a LOT to process when you look at your perfect, beautiful blessing of a child who has already been through so much and know it's just beginning. Thank you all for your continued prayers and support. We love each and every one of you and we're so blessed to have you as a part of our lives.