Today was rough and I'm not sure why...

But I think it may have had something to do with four doctor appointments and one other appointment crammed into one day. Not my smartest move yet.

We started off the day seeing the kids' ENT. Jaleigh passed her hearing test, as well as a seven month old is expected to pay attention lol. He looked at Justin's neck, said it was healing great and asked what our game plan was as far as the biopsy results. We talked for a bit, ran and grabbed some lunch and a quick episode of Spongebob at home, then left for the opthamologist.

Justin did well during the eye exam, up to the point they put the drops in his eyes for dilation. Then he just went hysterical. He was swinging at the poor tech and screaming. Apparently it burned. Poor fellow. :( I set Jaleigh down and held him down (seriously- hate holding my children down for things, absolutely breaks my heart) so the poor tech could finish the drops and we went back out and waited. I gave Just his "cool cars sunglasses" (to which he informed me if he had star wars sunglasses, he'd definitely be cooler...) and he sat in the corner and pouted:

He continued to insist it burned and I felt awful for him, but I don't think anything I said or did alleviated the pain or misery any. Sis LOVED the toys there and was pulling (attemtping to pull...) herself up on everything she could find. She's getting SO big. It absolutely breaks my heart. It seems her teeny tiny baby time was spent in the hospital, screaming, at the doctor, or on medication. It just breaks my heart that time is gone and I'm not sure any of us really enjoyed it. She is a happy, chunky little thing now, though and we're soaking her in completely. She gimp-crawls everywhere, she rolls (finally...at seven months old), she pulls up, she laughs, she plays. She's awesome. She's actually sleeping ALMOOOOST through the night. She goes to bed around 9:00, wakes up between 4:00-5:00, takes a bottle, crawls in bed with mommy and daddy and sleeps under our covers (think: little puppy dog) until she wakes up, usually around 9:00. I seriously can't complain. :)

Anyway, once his eyes were dilated, we saw the opthamologist. He said he was a little confused as to why we were seeing him because with neurofibromatosis, the eyes aren't typically affected until age 5 or 6. He said that, by that age, there's some definite spotting around the iris, but not typically before then. He checked him out, anyway, and said right now his eyes, optic nerve and iris are all clear on both sides. He wants to see us back in about a year. I asked him (he was pretty knowledgeable in all things neurofibromatosis) what all this could mean and he pretty well echoed what everyone else had told us. You don't commonly find a neurofibroma without neurofibromatosis. He did say, though, that if he were us, he'd seek a second reading on the biopsy.

We left the opthamologist, I dumped my kids off @ Pam's and I went to my OB appointment. I begged and pleaded with my nurse to PLEEEEAAAAASE do a sonogram and she said she'd talk to the doctor. As chance would have it, they just got a new ultrasound machine and she was itching to try it out. Would you believe....kid had her legs crossed at the ankle nearly the entire time? We saw nothing. At one point she moved...just enough to grab her ankles and pull them up to her head (think: pike position), legs still closed, making it impossible to see anything. She did get a good view from behind and said nothing was hanging out or bulging, so we're still calling girl for now. That's the second time I've gotten, "I don't see anything, so we'll assume girl." My next appointment is the 21, so we'll try again then. Hopefully she'll be in the mood to cooperate by then lol

We finished off the day @ church, sitting Just down for a talk with the children's minister. Justin has really been talking a lot lately about wanting to kill himself so he can go to heaven. This naturally has us concerned, so we asked the children's minister to sit down and try to talk to him on his level. He did a GREAT job with him and by the time Justin left, he was super excited about LIVING for Jesus, rather than dying to be with him. He told me at dinner that he wanted an elevator that went ALL ALL ALL the way up to heaven, so he could visit Jesus without dying and then come back to tell others about him. Seriously love that kid. <3

Justin's mood and attitude have really sucked today. Bless his sweet heart, he's so in tune to our emotions and our stress that I think it's wearing off on him. I sat him down this evening and talked to him and he told me this: "When I wake up, I decide if today's going to be a good day, or a bad day. If I choose bad, then I get to be bad all day." Hmmm, no. I explained to him if he ever felt like he was having a bad day, he needed to come tell one of us. I told him I knew these last few days have been rough, but we're just checking to make sure he's not still sick. He promised to let us know if his day was bad so we could talk through it.

Aunt Na is coming tomorrow, and then Mimi and Grumpy are coming Saturday. Papa and Nanny are coming in a couple of weeks, too. I think it will do his sweet little heart a LOT of good to be surrounded by the people who love him so much. Aunt Na is coming prepared to love him up first. He wants a burrito and some tea from Taco Casa....he's prepared to give nosies.

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.

Justin's biopsy results

First and foremost, thank you all for your continued prayers over our family, specifically our babies. I'm happy to report Jaleigh is finally in good health. She's happier and sleeping better since her surgery, which makes for a better rested mommy and daddy. She's also very quickly putting on the pounds and resembling the Michelin baby. I'll not complain, though, because I'd rather her fat and happy than malnourished and miserable.

Justin's ENT called today and gave us his biopsy results. Let me say first we are seriously blessed with a very sincere ENT who truly, truly cares about his patients. He informed me first that Justin's lump was a tumor, but that it was benign. He said it was not, however; on his lymph node as they originally suspected. He said it was a growth called a neurofibroma, which is a result of a rare genetic disorder (think: 1 in 3k for type one, 1 in 50k for type 2) called neurofibromatosis. He told me he'd already called our pediatrician (again- AMAZING doctor, we're so blessed) and filled her in. He said in all the time he'd been doing surgeries and biopsies, he'd never seen a neurofibroma come back and that he actually had to go to the books to give me answers. He said our pediatrician was doing research as we spoke and we needed to follow up with her for x-rays, MRIs and bloodwork.

I called his pediatrician's office and made an appointment, and then (naturally, as every freaked out mother would...) I hit google. By the time I had myself good and freaked out, the pediatrician called me. Like I said, I seriously have the best pediatrician on the planet. She told me that she'd received the news and been researching ever since. She said she put herself in my shoes and knew she'd be freaking out so she had to call me personally to talk through it all.

Basically, from what she has said, there are two types of neurofibromatosis and further testing will determine which he has. She said she is almost certain we're dealing with type one, which is more common and less severe. The first specialist we will see is an opthamologist. He will do images of Justin's eyes to ensure there are no tumors on his eyes or the optic nerve. If there are tumors on his eyes or optic nerve, it will require semi-annual screening to monitor the tumors. They will also monitor his vision closely, as these tumors can cause complete and/or partial blindness. If Just has any type of growths on his eyes, that will automatically mean Jaleigh and our little bean will need annual testing, as well.

We will also see a geneticist, who will do some pretty extensive testing on Justin and the rest of us. The majority of the time, a parent passes this gene on to their child but this specific disease has also been known to spontaneously show up in a child and they will be a carrier from then on. They will test Jesse, Justin, Jaleigh and me to see which of us are potentially carriers. The blood tests aren't always completely conclusive, but his doctor said they'd at least see if they could get some results from it.

Justin will also be scheduled for an MRI of his brain. This is very important because it will determine whether he has type one or two. They will sedate him for the MRI. If he comes back with bilateral lesions on his brain it will mean an automatic type two diagnosis. It will also determine whether there are any other lesions or tumors on his brain.

Type one neurofibromatosis is a disease of the nervous system. Basically, anywhere he has a nerve, he can have a tumor grow. They will monitor any growths he has because, while they don't grow outwardly, they can "grow roots," if you will, and grow inwardly, damaging vital organs. There is a 3-5% chance each of these benign tumors could turn cancerous. Anyway, the most common places for these tumors to pop up (though they can pop up virtually anywhere) are the spine, eyes/optic nerve, brain, kidneys, and neck region. As long as they've 1) not turned cancerous and, 2) aren't affecting vital organs in life-threatening manners, they will not surgically remove them because many times the risk of surgery is greater than the benefit.

His pediatrician said that, even in the mild cases, we can expect there to be growths on the eyes/optic nerve, scoliosis (very common in children with type 1), and, if there are any growths on the brain, we can expect behavioral changes to occur (think: ADD, attention issues).

The ages where this disease is typically caught is from 3 years-13 years, so Just falls right in the criteria where it can be caught. Children who have it typically are shorter in stature, have larger heads, growths under or on top of the skin, and spots with skin discoloration. We go in to the pediatrician in the morning where she will strip him down and do a full exam so they can start monitoring any other growths on his little body.

Some of you probably remember the unexplained seizures he had when we were back in NC. This diagnosis explains the seizures, his short stature, and his oversized melon. :)

I'd had full faith when the phone rang today the doctor would tell us it wasn't cancerous and everything was fine. I've spent the afternoon in a state of shock. I know this is better than cancer but let's face it, it still sucks. Bad. I wouldn't wish it on anyone, but I don't understand why it has to be my baby. We'll not hold our heads up, rather we'll get on our knees because this is just another storm that God will carry us through. Jess, the babies and I are blessed in a big way and this is just another means of testing our faith. By the grace of God, we'll prevail and God will use this for His glory.

I got the phone call today at 2:00, and then one of my friends pulled up in the driveway. She stayed and watched the kids, talked me through stuff, researched, and just loved my family and me until 8:00 this evening. Then she took Sis home with her so we could take time to figure out what our next move will be, communicate with Justin what's ahead of him and just be with him. As difficult as it is to be away from our families, God has provided us a family here and we're so grateful to each of them. The impact they've had on our lives is unspeakable.

So what can you pray for? Pray for peace and understanding as all this unfolds. They will be doing a LOT of checking, poking, prodding, blood-drawing, and questioning to my little angel in the weeks and years to come. Pray for peace and understanding for him. It's so much for his sweet little brain to comprehend. This is something we must monitor for him for the rest of his life.

Momentarily, as this all unfolded, I was so mad at God. How in the WORLD could he do this to MY baby? My perfect baby? Another dear friend called and prayed with me and I realised, God didn't do this TO my baby and this is no surprise to Him. He knew what was coming, how we would react and He was there waiting for us once we processed it all. We're finding comfort in that for now. So, thank you for your prayers, past, present and future. The support you've given us has carried us through to this point. I've taken a muscle relaxer, brought my son downstairs to snuggle, and I'm ready to climb up in the Father's lap and rest in him. Good night.

If you're reading this, you weren't left behind...

I had a dear friend message me on facebook today, asking me how I could be so at peace with the potential of being raptured today. Don't get me wrong; I knew there was no way in the world we were going to be raptured 5-21-2011 at 6:00 p.m. via earthquake (think- Matthew 24:36), but a part of me was completely at peace if for some reason it did happen. And, just for the record, I'm thinking it won't be 12-21-2012, either...

Those of you who know me know I was married in my past life. If you know that, you also know that it was a terrible relationship. Here's the thing- I've been a Christian since I was in 8th grade (I'll never forget it, my daddy and I were saved and baptised together), but I've always been terrified of death. I've been terrified at the potential of being raptured. Looking back, that's just crazy, isn't it? To be terrified at spending an eternity with God, no sickness, no crying, no pain. Just me and my sweet husband, our babies and our loved ones for eternity (think: Revelation 21:4). Who would be terrified of that?

Anyway, I remember praying to God while I was married to my ex husband to PLEASE, PLEASE, PLEASE not kill me (yes, kill me. Again, if you know my past, you understand) or send His son back until I had the opportunity to do two things: One, I wanted to know what it was to be loved unconditionally as husband and wife and two, I wanted to have a child to know the love of a parent. I felt, at the time, it was God's promise to me. And let's be honest, I'm married to the man of my dreams and we have 2.5 beautiful babies, so it must have been his promise, no? God has made many promises to us and if there's one thing I've learned about Him, it's that He keeps His promises. AND...and, usually He goes above and beyond keeping his promises and blesses us ten-fold. I knew it was a stretch to have ONE baby and God outwitted every doctor I've ever seen and gave me two more babies on top of my sweet son. I can see God up there going, yeah, you ain't seen nothing yet, kid. I'm not even CLOSE to being done (I like to envision God with a sense of humor...)

Yes, as a matter of fact, I am blessed. Big time.

Anyway, if you'd asked me when the y2k scare happened if I was ready for the world to end and spend eternity in heaven, I'd have told you no way. If you'd asked me at any of these other times when people claimed the world would end at X on Y, I'd have told you I wasn't ready and I was scared out of my ever-lovin' mind.

And let me just say, bless poor Reverand Camping's heart. He's devoted (see: wasted) nearly all his life to trying to determine when his life will end, rather than live it. It really, really is heartbreaking. Do I think he's a false prophet? No. I think he's a confused child of God who is so ready to be with His Savior that he made it his life's work to figure out WHEN it would happen. The bible does tell us, though, to beware of false prophets (think- Matthew 7:15). I do believe there will be many, many more predictions of when Christ's second return will be and I believe they too, will be wrong.

I can honestly look at my life right this very second and say it is complete. I'm so full of joy and appreciation for all my Savior has blessed me with. I have the best husband on the planet, he loves me like I've never been loved before (and I'm certain I'll never be loved again; I'm a difficult person to love). I have two of the most beautiful, sweetest spirited babies anyone could ever ask for. I have my faith, a roof over my head, peace with my parents (long time coming- I love you, momma and daddy). I know there's still so much more to live for (first days of school, high school, prom, college, marriage, grandbabies...), and live I will until He calls me home. But if God decided to end it all today, all I can say is bring it on!

So, when I told my friend this morning I was at peace with it all, it really got me to thinking why. When I look back at the old me, the me before my faith was 110% in Christ alone, I had a big problem with loving and accepting myself. The fact of the matter is if I don't love me, I can't expect anyone else to love me. Better still, if I don't love me, I'm less likely to let anyone IN to love me (think: Christ). Once I allowed Christ to live and dwell within me, He opened my life (eyes, heart...) to a whole new kind of love. He opened my eyes to a love for myself, a love for Him and a love for others.

You can call it maturity in age or maturity in spirit (I like to think both...), but while I knew there was no way we'd be raptured this evening, part of me was just a smidge disappointed at 6:05 pm when there was no earthquake. I can't wait for the day I don't have to worry about my babies' health, the bills piling up, our lights staying on. I'll get to see my Nampaw, my Paw-paw, all the relatives who've gone before me. I'll see Kara, Kindle, JD. They'll all be waiting for my sweet family and me as we are raptured up into heaven to spend eternity just loving and being with each other and with our Savior. Seriously? What could be better than that?