Strawberry popsicles and summertime smiles

I'm not one to jump on a bandwagon unless I'm passionately against something. Passionately. Like give my life for it something. That being said, I'm on the whole food, organic, healthier choices for my kids bandwagon, but I'm not quite ready to wear the t-shirt and shout it from the mountain tops.

Over the course of the last month, I've made my own household cleaners, right down to dishwashing detergent. I've fed my children more whole foods, less crap. We've eliminated high fructose corn syrup (HFCS), limited refined sugars, and limited eating mcdonald's to once a week or less (Don't judge me; my life has been insanely hectic. I'm fully aware McDonald's more than once a year is BAD. We're working on it, back off! ;))

Anyway, two things I've had a horrible time replacing in my kids' diets is popsicles and pop tarts. I'll conquer the pop tarts later; that's a really...really big mountain to climb. I did, however; find a super simple, super (hopefully) yummy popsicle recipe. I love when I can read all the ingredients on a food, and I'm finding the more I make myself, the more I know 110% what goes in something.

There are three (that's right, 3) ingredients to these amazing popsicles: strawberries, milk, and truvia. That's it, folks. The original recipe called for sugar, but we're working toward eliminating refined sugars, too so it was either sugar in the raw or truvia. I picked Truvia. I'm crippled right now and it was closer! ;)

Here's the recipe:

2 cups whole strawberries (topped) pssst...topped means take the green part off! ;)

1 cup milk (we used skim)

Truvia to taste

Blend all ingredients and place in popsicle molds. Freeze for 6+ hours. I blended, poured and shoved in the freezer in less than five minutes. Then I walked away and hubby cleaned up my mess (back off, I'm on crutches...).

I could not WAIT for my kids to get done with lunch today, seriously could. not. wait. I busted out the popsicles and they were a hit. Just a note, though, if you have seed-phobic kiddos, these pops are NOT for you. Try peaches or something that isn't so...seedy. These probably could've used double the truvia I put in, though I'll never admit that to my littles. They loved it, anyway.

Bean enjoying her refrehsing homemade popsicle



Justin sucking the extra strawberry juice...yum!

I can't wait to try other flavors and not so secretly, I feel all homemaker-ish and stuff. It really makes me feel all warm and fuzzy inside! ;) Now that I've killed the popsicles and dragged them home, any ideas on homemade poptarts?!

I'm ALMOST the mommy to a five year old...

My sweet boy turns five in less than 9 hours. His Aunt Na and Uncle Jason threw him a fabulous party over Christmas break, so tomorrow is going to be really low key. We are going to see Nanny and Papaw and have cake, specially made by Mimi, iced by mommy. Here's what you need to know: I rock at bows; I rock at tutus. Neither bows nor tutus require patience or large amounts of attention to detail. This is a good thing, because I have the attention span of a two year old. It's not pretty, folks.

Anyhow, I decided it would be fun to pull out all mom's cake decorating tools to decorate this sad little cake. All the kids went to bed and I went to town. I mixed up the colors, spread out the icing and then saw her handy-dandy icing tips. Oh, yeah. I went there. I busted them out like I knew EXACTLY what I was doing. Using those little tip-thingies takes somethign I don't have- patience. I rocked it anyway, making wavy lines, rather than wavy dot things. So here's what I learned tonight:

1. I'm not good at making cakes. Not even a little bit.

2. God totally knew what he was doing when He gave me talents that didn't require patience or attention to detail

3. Cakes from Wal-Mart? SO worth it. So, SOOOOO worth it.

4. It's a good thing my son knows his mommy loves him. If he based my love on the cake, I'm fairly certain he'd run away from home.

Every one of his birthdays send me into an emotional tissy. He's absolutely, positively my entire world. I love him more than anything and I just adore the little boy he's grown to be. Five is a big deal. He's no longer a toddler, though I'm sure he reached post-toddler way before now. He's really even no longer a preschooler. I'm certain there will be a meltdown his first day of Kindergarten. No two ways about it. He's so big, so independent. I feel like he needs his momma less and less everyday. I want to grab him and say "What about me? What about how I need YOU?? Please don't grow up, little boy!" I can't do that, though, can I? I mean, even if I did, it would probably just freak him out and make him bitter. It won't make time freeze.

If I don't hear it once, I hear it a thousand times that people don't know how we mantain sanity with our kids aged the way they are and sleeping the way they do. Let's just clear something up right fast- there is NOTHING sane about me. I walk around in a state of delirium 99.9% of the time, the other .01%, I sleep. I'm certifiable, folks. But I would not trade one single, solitary moment. I've learned that if I don't take advantage of every bad dream Just has and wants to crawl in bed with me, every midnight rocking Jaleigh wants, every time Jadie is sick of being on the floor and just wants to be held (no matter how much I have to do), it will all be gone. I'll never, ever have these moments again. So I may be delirious, exhausted and certifiable, but I am loved. My children are loved. My house isn't even remotely clean, but there will be time for that when they start school and are gone all day. When all I can do is miss them and wish they were still home with me.

Anyway, five years ago right now, I was in labor. A long, long, long, long labor. I spent 32 hours at the hospital, in labor. Apparently when I got my epidural (asked for it at a 2, got it at a four), it just stopped my contractions. Finally, at 6:45 am on January 8, they broke my water. Just over an hour later, I was holding the most beautiful, perfect, precious, breathtaking little boy you ever saw. He came complete with a head full of hair, two dimples and a swell cleft in his chin. He was absolutely, positively the most beautiful baby boy ever. I was so scared, but I knew- this little boy saved my life.

Many of you know I'm divorced and remarried. My first husband was physically and emotionally abusive. When Jesse and I got married, I lost it. I don't remember much from that time, but I know they diagnosed me with PTSD and severe anxiety. I know I spent most of my days so drugged up, I couldn't function. Beyond that, don't ask me, because I have no details. I know that the first two months of our marriage, my husband NEVER left my side and he loved me with an unconditional love I'd never, ever experienced from a man before. It was (is) real love, a Christ-like love. Anyway, I do know that things were bad. I remember praying every single night that if God would give me a child, I would love him, hold him, care for him and never, ever look back. By the grace of God, I found out I was pregnant. I took a random pregnancy test one day and it was positive. So I took seven more. All positive. So I went in for blood work. Positive. Oh, thank you Jesus! Can I celebrate yet? I did. I celebrated and still just see him as the biggest blessing. Ever. Hands down. He and his daddy were my reason for living for the longest time, until his sisters came along. It's amazing; you wonder how in the world you can possibly split your love between children. The heart has a way of growing and accomodating more love so splitting just isn't necessary. So I got pregnant with Justin two months after we got married and we celebrated our first anniversary with a beauitful one month old baby boy. He stayed with Mimi while we went away for the day. The day. Not the night. NO way, regardless how little sleep was to be had, I'd leave him at night.

Ah, memories. I still just can't wrap my mind around the fact he's five. Where did these five years go? Is all the time going to go that quickly? God, I hope not. I just want time to stand still. Forever. I want to hold and love my babies for the rest of my life and never, ever let them go. Do you think they'll still let me rock them when they're 30?

Oh, yeah. The cake. Here it is.

Happy birthday, sweet Jutter Butter. Mommy loves you all the way to the moon and back! <3

I say hey, what's going on?

A few pictures...
My Jadie Bug

Justin and Jaleigh with Santa

So much has gone on the last few months (shocking, right?), so I figured I'd write about it. You should know, contrary to being the daughter of an English teacher, I'm not really blogger material. I do my best, though, and it's a good release.

We are home in Texas for the time being. The plan is to stay through January while Jesse works insane hours to try to cover some of these medical bills we've been racking up. We stayed here with family most of November as well, for the same reason. We're enjoying time with our families, though I'm fairly certain my brood has worn them all out. :)

Jaleigh has been sick off and on for 17 weeks now. She and I got sick two weeks before Jadie was born (end of August), contracted pneumonia the next week and went on antibiotics. She has stayed well anywhere between 4 and 15 days before she gets sick all over again. After the 4th x-ray showing what they thought was pneumonia, they sent her to a pediatric pulmonologist. The pulmonologist ran several tests, including a CT scan and determined she has a (for lack of better word?) mass in her left lung, swollen lymph nodes in her lung, and swollen, excess tissue. Her blood work showed signs of an infection (which is not good at all, seeing as how she was 10 days off antibiotic...). They've given her a preliminary diagnosis of interstitial pneumonitis, which is basically chronic lung infection. It's a very vague diagnosis, but it's a start. At this point, there are so many unknowns. We know she's getting sick every week or so, taking antibiotics and they are treating the symptoms and the infection, but not the underlying problem that is causing the symptoms and infections. The pulmonologist seems to think it resembles TB, but she's asymptomatic and tests so far are showing negative. He did say if she starts with a chronic cough, to come in immediately and retest. He also told me he wants me to leave with two things: 1, He doesn't want me to think they aren't working hard to figure it out, because they are. Unfortunately, since there's no clear answer, we are just going to have to follow it, and 2. He doesn't want me to think it's NOT serious because at this point, all non-serious diagnoses have been ruled out, and anytime something of this nature is present on an infant, it's serious. She is currently on her fourth antibiotic this month and following up with a preventative antibiotic. He wants to keep the infection away as long as possible, so her little body can have a break. We will go back in February for a second CT to see if it has progressed, regressed, or stayed the same. He'll determine what tests need to be done from there. He did say there's a small chance it's a rare viral infection called adenitis, which lasts 3-6 months. On the off chance that IS what we're dealing with, it should be near running its course. Right now, she's on antibiotics (did I say that already...?) and running low-grade fever off and on.

We aren't sleeping most nights; we do well to get 3-4 hours. She cries a lot, sits in my lap a lot, and throws a lot of fits. Mommy's exhausted, but God totally keeps me going. There is nothing worse for a mother than the fear of the unknown when it comes to her babies. I thank Him daily, hourly, every minute for my dear husband because, without him, I'd never make it through these long, exhausting days and nights. He is my rock, my everything and I'm just so grateful to have him. So blessed, friends. So blessed.

I'm also blessed to have my big little and my tiny little. They have been so cooperative through all the extra attention Jaleigh Bean has been getting. I try very hard to make time for them and most days, I do well enough but thank GOD they're mild-mannered and calm. And Jadie _usually_ only gets up once or twice a night, opposite Jaleigh. Of course. ;)

My Justin doll has another lump. I'm not sure I ever followed up after our appointment with the genetecist. He basically said we have to wait for more symptoms to pop up before they can officially diagnose him with neurofibromatosis. He said while it is rare, it is possible to have a random neurofibroma. He said if Justin were to ever in his lifetime have another neurofibroma, it would be an automatic diagnosis. I was washing Justin's hair the other day and he has a lump on his face, directly by his ear. I'm calling our ENT after the Holidays to make an appointment, so we can get it all checked out. He's getting so big; I can't believe he's almost five. He's not my toddler anymore and it breaks my heart. He saved me, friends. He and his daddy absolutely, positively saved me. It just kills me to see him so big. He is such an amazing big brother. He loves his sisters dearly and does all he can to help with them. He loves when they nap, though, because then he can play video games or color with mommy! It's a win-win. Love on babies till you wear 'em out, then eat up the mommy time!

Jadie is over three months old now. I'm not really sure where the time has gone, but it's gone. She is absolutely perfect, friends. She's calm, quiet, content. She loves to lay on a blanket and talk to her BFF, the ceiling fan. She has only ever gotten up once a night (except for growth spurts), never had colic, and only cries when she's hungry or has the hiccups. Thank the Lord, because her entire life, Jaleigh has been sick. Oh, friends. And she's beautiful. She doesn't have the dimples or the cleft chin her brother and sister have, but she has these crystal blue eyes that light up and a smile that covers her entire face. She's stunning, absolutely perfect. She looks like a baby doll.

So you may be thinking at this point, what do I need from you. Prayers, friends. Pray for my sweet family. Pray for healing for my Jaleigh Bean, understanding for her daddy and me. Pray for love and peace for her sweet brother, and for continued contentedness for Jadie bug. I know no matter what happens, God will be with us. He may choose to heal her, He may choose to hold her (and us) through this storm. Either way, our faith is in Him and the promise he's given us to never leave our sides.

I was talking to a dear, sweet friend the other day and she told me to have faith. I have faith, friends. It may not be much, but I have it. And here's the thing; God never promised us life wouldn't hurt. He never promised us we wouldn't suffer, either. He does promise us, though, that He will carry us. There is a song very dear to my heart right now, Lay down your burdens by Amy Grant. Lay down your burdens, I will carry you. I will carry you, my child. It goes on to talk about all the things God has done, and how if He can do all that, He can surely carry you through your sorrows. What an amazing song, an amazing testimony to his faithfulness. Just remember, friends. If you are ever overwhelmed, lay down your burdens. He'll carry you.

P.S. Remind me of that next time I decide to lose my mind...

Just...breathe, then pray.

Lord, thank you for this sweet baby girl with her head on my heart and my heart in her hands. She is so beautiful to me. I know the last year has been tough, Lord, but you've never left our sweet family's side and for that, we're grateful. We've weathered the storm and come out closer to you and closer to each other. I thank you for the personality you gave our sweet Jaleigh Bean. She is amazing, Lord; headstrong and determined. I know you don't make mistakes, God, and that she is destined to do big, big things for you.

Thank you for trusting her daddy and me to raise her and her siblings up in the way that they should go. Please give us the tools and the heart to seek your will in their lives, every single step of the way. Please heal her sweet little body of wahtever is making her run fever and feel badly. Thank you for all our sweet babies, for their uniqueness, and for their sweet spirits, and for blessing us with the privelage to raise them up. Help us to encourage, not discourage them and to build them up as giants for you, Help us to remember that as impactful as words are, our actions and our intentions are what they take in the most. Help our actions and thte way we treat one another to be a reflection of your love for us.

Thank you for my husband, God. It never ceases to amaze me you create one man and one woman to be together and that, when we're in your will, you bless us a thousand times over with our perfect match. He is absolutely, positively the most wonderful, thoughtful husband and an absolutely amazing father. Bless him, Lord and continue to guide him while he leads our family in your will.

Give us strength, Lord, to continue on this journey you've called us to, because in your will is where we want to be. I know I've struggled, Lord, and even questioned whether you knew what you were doing landing us hundreds of miles away from our families. We've seen you pour out your blessings in the people you've placed in our lives and as hard as it is to stay focused on your will, I'm so grateful for the wonderful, wonderful friends you've given me to help me along (though I honestly can't wait to be home with my momma...). Every problem we've been faced with, you've countered with a solution that blessed us tenfold. Help us to take those blessings and bless others, Lord.

Lord, you've given us a phenomenal testimony with which to share your love. Please give us the mountain tops to shout your love from, and the people you wish to hear about it. I love you, Lord, and I'm so grateful you chose me to love and me to bless with this wonderful family. Thank you, Lord. ~amen

I did it med free...almost!

Posted 10-10-11

Many of you have asked me to take some time to blog, so I'm going to try really hard to make it a priority. :)



There's a lot to update you on, but first on everyone's mind is probably our sweet baby Jadie. Jadie Faith was born 9-14-2011 @ 10;59 am. I'd been having mild, but noticeable contractions since Tuesday morning. They started around 20 seconds in duration, less than 3 an hour. I went to the doctor that afternoon, excited there were contractions and hopeful there was progress. I was still at a 2, 50% effaced. She said no labor this week, but that we could be hopeful for next week. I was a little embarassed to tell her I'd been having what I thought were significant contractions. She chalked the blood in my urine and the contractions up to dehydration. I'd lost three pounds that week, which reflected my disdain for eating and drinking at that stage in the game.

Anyway, by the time I got home, the contractions were extremely random, but had increased to about 30s in duration. We finished our day and went to bed. I was up all. night. long with contractions, 3-4 an hour (that's still 15m apart, people...). They'd gotten signifcantly stronger, more painful and were lasting about 50 seconds. I slept around them as I could, hopeful that it would eventually turn into labor (little did I know it WAS labor...). Jess got up around 5:30 and I informed him he wouldn't be going to work, to go back to bed. I'd taken 2 showers through the night and decided to crawl in the tub at 6:30. It was starting to really hurt to walk or stand. I climbed back in bed around 7:00 and decided to call my doctor at 8:30 because something was going on, I just didnt know what. I set my alarm for 8:30 (who was I kidding?) and called them. At that point taking steps without assistance was not an option. My mind started racing. Had I messed up in waiting to call the doctor? Was there something wrong with my baby girl? What in the WORLD was going on?

I should tell you at this point that while I'd been pregnant twice before, I hurried to the hospital at the first sign of pain with my oldest, Justin and it ended up being a 32 hour labor. With Jaleigh, I was induced, so I still didn't know what real labor felt like.

Anyway, the doctor told me to get to the hospital ASAP because I was having a difficult time carrying on a conversation with them. I told Jesse to load the kids up, called my friend to take the kids, and we headed to the hospital. Funny, we were trying to decide whether to pack everyone a bag, and finally decided not to because we didn't know what was going on. Jesse pulled up to drop me at the front door and I got out. I thought I was going to be real brave and walk in and upstairs by myself. In retrospect, that was real dumb, and I didn't make it far before they met me with a wheelchair and wheeled me up to L&D.

Once they got me in bed, they checked me. At this point, I must tell you about the new nurse, Ginger. Ginger added a comic relief to my situation. Ginger apparently had been a L&D nurse for 19 years, but you seriously would have thought she just graduated nursing school the evening prior. She checked me first (I seriously almost punched her, then held her down and ripped off her fake freaking fingernails one by one...), and came back saying I wasn't even a 2, and was still 50%. I remember saying something to the effect of, "then you need to figure out what's going on with this baby because something is terribly wrong!" Fortunately, the "real" nurse wasn't any more convinced than I was, so she checked me and I was 100% at a 6/7 and had a bulging sack. At that point, I asked for my epidural. Yes, an epidural. I'm not ashamed, folks. I have the pain threshold of....well, it's really low. I needed pain relief, like, the day before. I was exhausted and so over the pain of childbirth. Not to mention I was scared out of my ever-lovin mind. I'd heard horror stories of women who didn't get their epidurals and I'm fairly certain I knew I wouldn't surivive that nonsense. I did the only thing a raging pregnant woman in horrible pain would do; I prayed to God to PLEASE hurry the anesthesiologist up.

Once we knew where we stood, the nurse started to make calls to Jesse to get back to the hospital quickly because labor was going really, really fast. He'd been dawdling; I remember something about waffles, packing bags and him just being him. ;-) Nurse Ginger took about 10-15 minutes to draw my blood for my cdc for my epidural. Yes, 10-15 minutes. They moved me to a labor room where they checked me again and I was an 8. They were waiting for my cdc to come back before they broke my water, but Nurse Ginger (she really rocks...) accidentally broke my water when she went to check me again later. I told her she broke my water and she insisted she didn't. After about three seconds, she apologized and everyone started moving much faster.

At that point, they gave me a shot of...something? I'm not sure what it was, but I started passing out (literally) between contractions. I am not sure when Jesse got there, but shortly after he did they made him leave so I could get my epidural. Less than 15 minutes later, I was pushing. No, the epidural hadn't even come close to taking full effect, but it took just enough edge off that I didn't want to take a flying leap off the third floor of the hospital.

Jadie Faith was born at 10:59 a.m. I labored for an hour and a half at the hospital with no pain relief and I don't care what anyone says, I'm really darn proud of that. The very second they laid that sweet girl on my chest, every ounce of pain left my body (well, except the whole stitching me up part...) and all I could think about was how perfect she was. And she is. She will be a month old on Wednesday and it just blows my mind how perfect she is, how perfect all my babies are. Many of you have asked if our family is complete. Maybe...maybe not. I'm not in the business of trying to figure out what God's plan is (anymore...lol). If our family is complete, then it is perfect. If we have more children, then it will be perfect. And maybe, just maybe, I'll have the mindset to do it completely epidural free next time...

Someone mentioned to me I haven't updated in a while....

Several someones, actually. So here we are. St. Francis FINALLY scheduled Justin's MRI for July 19. I called his doctor one day last week, though, and made him an appointment for the bad headaches he's been getting. The headaches have been localized to his forehead. My initial suspicion was migraines, but he has no light or sound sensitivity and it seems while the intensity comes and goes, the headache is a steady constant.

Anyway, so we took him in to the doctor and had him checked out. The doctor said his sinuses and allergies seemed to be well under control and that, while it could still be migraines, she was more suspect of neurofibromas on his brain. Due to the recent discoveries with my heart, they went ahead and did an EKG. His EKG came back fine, praise God. I told her neurofibromas were my fear, as well, but that the soonest they could get him in for an MRI was the 19 of July. She said to give her until morning to get it sooner and that if we couldn't make it any sooner, we would do a CT scan here. She said neurofibromas are typically too small to see with CT scans, but if they're causing him pain, we would likely be able to see something. The doctor's office called the next morning and let me know they would see him this past Thursday.

We went in for his MRI and sat....and waited for nearly two hours. Turns out, he wasn't able to have his MRI that day, so we loaded up and headed home. They've rescheduled him for tomorrow, Monday at 11:30. It worked out, though, because the geneticist also called to reschedule and moved his appointment to Wednesday morning @ 8:00 am. So, God willing, we should have a LOT of answers by the end of this week. If we don't have answers, we'll at least have direction.

In other news, Jaleigh has a tooth now. One, lone bottom tooth. It's adorable and, as of this morning, a second tooth has broken the gum. You hear about these sweet babies who just magically have teeth and you never knew they were cutting them. She's NOT one of those babies. She's made the entire world miserable as this tooth has come into her life. I anticipate the same for the next one. We're waiting for her to just take off walking. She's cruising and a couple of times, she's let go of whatever she's holding on to like she's just going to take off across the room. Naturally, she plops to the floor, instead. The effort is definitely there, though.

Our goal is to go home Thursday of this week. I'm ready. I'm so ready to go home I'm afraid I'll protest when it's time to come back to OK. I miss my momma. We've lived away before and I remember thinking back, thinking it was so wonderful (and it was...), but you forget how much you miss your family. Your life without those staple people in it just has a big, fat void. Jess and I are just prone to things going wrong, unfortunately, and it's so much easier for things to go wrong when your family is there by your side. We're very blessed, though, no matter how much we miss them because God has provided us a church family made up of a stellar group of people. We're blessed, but we need a good helping of home. Hopefully, for all our sake, we'll get it very soon.

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?

The Love Dare- day one

So mom and dad got Jesse and me The Love Dare for Christmas last year. It sat on our bookshelf for over six months and I finally picked it up the other day. It is basically 40 days and 40 different things to do to help improve your marriage. So I thought I'd give it a go.

Day one was that you had to essentially NOT say anything negative to your spouse. Accomodate them in everything and not fight.

Oh, my GOSH! I didn't think I'd survive day one. Day one turned into day three...and day four. Finally, on day four...I managed to make it only arguing ONCE. Woe is me, I think I'm a terrible wife.

Stay tuned. For day two/four, I am required to do something unexpected and kind for him.

This should be interesting...and it COULD be fun. ;)

Myspace transfer- I love you more.

April 13, 2009 - Monday
I remember...
Current mood: amorous
Category: Life

I remember when, shortly after bringing you home from the hospital, I would wake you just so I could hear your little cry or I would startle you just to be sure you were breathing. Looking back, I totally blame it on the out of whack hormones because no one in their right mind would wake a sleeping newborn. Seriously. My mom told me that on several ocassions. I woke you, though, because I wanted to see your smile. I wanted the world to see your smile. I wanted to see your beady little brown eyes, looking up at me with love. I loved you. I loved you so much that my heart probably should have exploded.I had no idea I could possibly love you more. Yes, I love you more. Your favorite thing to tell me is "I love you more, mommy!" in your growly little Linda Blair voice (we're still not sure where you picked that one up....). But little boy, you couldn't possibly love me more.

I love you more than life. I love you more than Dr. Pepper (face it dude, that's huge). I love you SO MUCH and my love for you is SO BIG and SO SINCERE that you couldn't possibly love me more. So I'll let you think that you love me more but you really have no idea, munchkin.I can't believe how much you've grown. Right before my very eyes. My little 7 lb. 15 oz. boy weighs 29 lbs. now! That's like, four times what you weighed when you were born, dude. Seriously. When you came home, size 1 shoes fell off your fat little paddies. Now? We're busting the seams of size 7's. Dude. You're huge. I brought you home in a 0-3 month outfit that was falling off of you (everywhere but the fat head...the cap was too tight) and now you're in 3T's. It breaks my heart, little boy. It breaks my heart and at the same time, I'm just overcome with joy.

You're two. You're huge, man. You speak in full sentences (you have for a while) and your vocabulary has just...exploded. You're so precious running from room to room, jumping, climbing, yelling, playing. You wear me out just watching you. That isn't good enough, though, is it? You're constantly telling me to "Come ON mommy!" dragging me from room to room. I cherish the time we spend together, little one. Mommy is so sorry that she has to work and spend so much time away from you. If I could change anything, that would be it. I miss our time together more than you can even begin to imagine. I miss you, little boy.You're so smart. You're so precious.

People tell me you should be a model. Just so you know, I said no. I want you to be a little boy. I want you to laugh and play and grow and get dirty and smelly (you definitely already posess that funky boy smell) and even get scrapes and bruises without having to worry about anything. You know you're cute. That's what is so bad. You're fully aware of it and, at two years old, you play it like no one's business. A handshake here, blown kisses there...a "hey, baby" now and then....you're so good at being adorkable. I'm absolutely exhausted, little boy. It is nearly 11:00 and I'm famished.

I just...now got you asleep. Your cute little pudgy boy snores fill your room and you're all snuggled up with blanky, woof-woof, blackie, junior, daisy, max and daisy jr. (thank God you're in a twin size bed with your brood) and while it may be true that a newborn is prettiest when fully awake, nothing could be more beautiful than a two year old...fast asleep.

Sleep sweet, my angel. Mommy loves you more.

Myspace Transfer- this is brutal.

March 31, 2009 - Tuesday

So what?
Current mood: contemplative
Category: Life

So what makes a marriage fall apart?
What makes two people, who at one point, loved one another SO much, not even be able to be carry on a conversation without hostility?
Forget being in the same room together.

What makes a marriage go from good to worse?
Is it an overnight thing...or is it a gradual process?
How does one go about reversing the negative effects that have ocurred as a result of the hostility and discontentment?
Is it possible to reverse the said effects or is it just better to walk away and cut your losses? When does it become unhealthy to be together anymore?
Is it a natural progression when you aren't getting the love you've gotten used to having, to pursue it elsewhere?
Since when did crossing that line from dreaming about it to inactive pursuit and into actively pursuing it become grey, rather than black and white?
Isn't grey an excruciatingly compromising color when speaking of a marriage?
Is it just an imaginary color that should absolutely NOT exist in a marriage?
Am I wrong in thinking that it shouldn't?
So what does one do when it does?
How does one justify the color grey and all that it entails?
Forget being faithful to one another.

What can one do, at this point, to fix it?
Can one fix it?
When is a band-aid just not good enough?
How many band-aids must one exhaust before stitches are given?
Or superglue? Or a cast?
When is it salvageable?
Is it ever salvageable when it gets to the point of no return?
What IS the point of no return?
Can one take a bus to the point of no return? A train?
Forget going backward. All you can do at this point is move forward.

Move forward where?
With or without one another?
Then what?
Love someone else?
What if you're not capable of loving anyone else?
But at the same time...incapable of loving the one you're with?
Forget love. Apparently you're not cut out for it.

Myspace Transfer

August 18, 2008 - Monday

Lessons

"Come to me, all you who are weary and burdened, and I will give you rest."
Matthew 11:288:02 pm.

I was in Justin's room, sitting in the rocking chair, watching him wailing and kicking on the floor. It has been a long week. I'm exhausted, he's exhausted and his daddy is exhausted. The medication that our 19 month old little boy is on makes him have awful temper tantrums randomly throughout the day for no apparent reason. That is what we were in the middle of, right then and there…at 8:02 pm.

He was wailing into the floor, gasping, kicking, hitting himself, pulling his hair- likely thinking "Woe is me." I sat there patiently and told him over and over again, "Mommy's here, baby. I'm right here. Would you like for me to rock you to sleep? Come see me. I'll hold you and everything will be alright." I wouldn't touch him, though because I knew that would only send him into further hysterics. Outrage, even. It isn't that I can't handle the physical pain that he may potentially inflict on me. That isn't it at all. He could scratch me, bite me, kick me…it wouldn't even hold a candle to the hurt in my heart for him right at that very moment. My heart hurt for him because he was in a state of complete and utter despair. He wanted nothing but to lay there and sob about how miserable his little life is. I'll give this to him, too. His little life is pretty rough right now. My heart breaks for him several times a day, especially over the last week or so.
I told him again, barely above a whisper, "Mommy's here, baby. I'm right here. Would you like for me to rock you? Come, let me hold you."

After five minutes of utter hysteria, he looked up at me, sobbing. 8:07. He sat up and grabbed his blanket off his bed and starts walking toward me. He laid his head in my lap and just sobbed. Then he started hitting me. He was close enough at that point that I was able to pick him up and hold him. As soon as I pick him up, he arched his little back and screamed. He hit me several more times and I just held him tight. Not tight enough to hurt him, I could never hurt him. I held him tight enough that he knew that I'm not ever going to let him go. I whispered in his ear, "Mommy and daddy love you, little boy. We aren't going anywhere. We love you so much. "I told him over and over of our love for him and how special he is to us. He screamed still, trying to push me away. My heart broke into pieces. I just love this little boy with everything inside of me. If he hurts even a little bit, I feel like I've been stabbed in the side. The pain and the confusion that he has endured this last week has been more than even I can bear. Tears started rolling down my cheeks as I sang to him softly. "Amazing grace, how sweet the sound…that saved a wretch like me. I once was lost but now I'm found, was blind but now I see….T'was grace that taught my heart to fear and grace my fears relieved, how precious did that grace appear the hour I first believed….Thro many dangers, toils and snares I have already come. His grace has lead me safe so far and His grace will lead me home…When we've been there……ten thousand years…..Silence. My little guy had given in. His precious little snores and his breathing in and out were all that was left to be heard.

There is nothing more beautiful than silence at a moment like this. 8:18.God wasn't finished with me, though. There was a lesson to be learned here. At that very moment, I was hurting. I was hurting because my little boy was hurting and because my hsuband was hurting. I was hurting and I was angry. Right in the middle of my misery and my agony, God spoke to me. I heard him say, "Daddy's here, baby. I'm right here. Would you like for me to rock you to sleep? Come see me. I'll hold you and everything will be alright."

No God. Everything is NOT alright. My little boy…he had seizures. Two of them in one day. Do you hear that, God? TWO in ONE DAY! And no one knows why! They want to diagnose my little boy with Epilepsy! Do you know what that means, God? Do you!?! He hurts….I hurt…Jesse hurts. We hurt. We love that little boy and we were so afraid we'd never hold him again. Do you hear me, God? Are you listening? Do you know what I've been through? Are you punishing us, God? Are you?

"Daddy's here, baby. I'm right here. Would you like for me to rock you? Come, let me hold you."
Do you not HEAR me, God??? They drew blood and drew tears…they kept him up all night, they gave him PHENOBARBATOL…a VERY dangerous drug, God! Then they gave him MORE drugs! Do you know how LITTLE sleep I've had? You don't get it, do you? My life is awful right now! Where are you, God??? Why won't you come help my family? WOE IS ME! Why have you left us, Lord? Why? My baby doesn't even want to touch me…he doesn't want his momma to hold him! He can't even stand up on his own because he is so drugged up! Don't you get it, God? If you can't help me, I don't need you!"Come, let me hold you. Let me rock you, let me bear this burden. This is not yours to suffer alone. Not yours, not Jesse's, but mine. You are not equipped to carry such a heavy load, child. Give it to me. Give it all to me. Let me comfort you, let me hold you."The thing about it is this: I have not outwardly blamed God. Inwardly, though, I have managed to get so caught up on how bad things are that I've failed to see God's work shining in our lives. Our son, the little boy that they said would be so off kilter for a minimum of two weeks while the drugs get in his system…he went to the beach this morning and flew his kite all by himself. He played and laughed and had a great time with us today. He threw a few violent fits, sure but he's already overcome the worst of it. We have more tests, but we have the Ultimate Physician in control of these tests. We have a thousand prayer warriors on our side and there is NOTHING the power of prayer can't conquer.

So where is God now? He's here, He never left us but the thing about it is, just like with Justin, we have to be willing to let him hold us, if even for just a little while. We don't go through these struggles alone. God never leaves us, He never forsakes us and what He calls us to do, He also equips us to do.

8:28 pm I didn't go to sleep right then, but I laid my little guy down and my Father, God carried me out of there with a new sense of peace. I was still and I knew that He was and is God and that He is in control...

Myspace Transfer- Another update

August 16, 2008 - Saturday
Another Update
Ok...they had us skip a day on the second medication that they gave him so today was a bit better. He woke up around 9 am in an awful mood. He actually kicked me in the face, hit me several times, bit me on the wrist. Hehas now made a regular thing out of headbutting me in the chest. Apparently this is all just the medication. I think a small part of it is that his whole little world has been turned upside down and he doesn't understand what's going on. Since he can't communicate that, he gets angry. At this point, disciplining him in any form does no good because he just doens't understand. You can look at his glassed over little eyes and tell it isn't him lashing out. That's what makes it so bad.Anyway, Jesse and I left for awhile today...went out and got some fresh air. My mom is flying home tomorrow...so it will be just me and Justin during the day starting Monday. I'm scared. Anyway, he took a 3 and 1/2, basically four hour nap then when we got home, he got in the shower with his daddy (we are still fighting croup on top of all this) to clear his little throat and he starting beating his head on the shower floor. I called his behavioral therapist (he was seeing her for the head banging anyway) and she said that a small percentage of children who take the Keppro have very violent dispositions with it. She also said that she noticed him having mini seizures before...but didn't feel it was her place to say anything. Duh? Yes, I want to know these things. Anyway, she said that when he gets out of control, there is going to be something that triggers him. The trick will be finding out what that something is. Whether it is a sight, a sound, or a noise. So we are in serach of that something. I've found out that most of his light up toys send him into hysterics.....absolute fits. She also said that when he loses it like he does to wrap him up in his blanket and restrain him gently.Anyway, he was up for a couple of horus after his nap. We took him to the beach and let him sit on the water's edge...and watch his daddy fly kites. He actually held his kite for a while and flew it and then he even got to play in the water. I think we've found his happy place! ;) We are going to be spending a LOT more time on the beach through all this, I guess. Our evening before he went to bed fairly well. He is a teeniny bit more surefooted...it is a small improvement at the very least.Thank you so much to all of you for the kind words and the prayers. We do know that God is in control. In all this, I know he has't abandoned us and we will not abandon our faith that he will pull us through this. It won't kill us, it will make us stronger. It could be better, but it could be SO much worse. Yesterday was bad, today was better and by the grace of God...tomorrow, we'll get to hear him laugh.

Myspace Transfer- Update

August 15, 2008 - Friday

Update
So Justin was really sick this weekend. He had a really bad case of croup...we were in the ER all night Sunday night because he was hallucinating and having a really, really hard time breathing. Jesse and I got little to no sleep this weekend.He was finally feeling better Tuesday. He ate breakfast, ate lunch and then laid down for a nap. I thought I would go lay down, too because let's face it, I'm utterly exhausted (likely even an understatement). I was walking into the bedroom and I heard him moaning. I went in there and he was face down on his bed, flailing around. I picked him up and his face was solid white and lips were blue. He was flopping aroundin my arms, his jaw clenched. My first thought was that he choked on something so I pried his jaw open and did a scoop at the back of his mouth. His jaw clamped back down so hard that it drew blood. There was nothing in his throat so I hurried up and called 911. The first dispatcher I reached was from a neighboring town. Anyway, J didn't breathe at all the whole time I talked to the first operator. I then got transferred to the right dispatcher. He came to momentarily while I talked to her. His eyes kept rolling back and he was going in and out of conscienceness. It was awful. Absolutely horrible. They got the ambulance en route...then the guys couldn't find our condo. So I stood out in the hallway and waved them down. They checked all his vitals (literally like, 9 guys...they were so great!) and told me that he needed to go get checked out either via ambulance or car and that it was up to me. I told them he had a pediatrician appointment @ 4:30 and they suggested I call his doctor and see about moving it up. So I called his doctor and they told me to bring him on in. They told me that if, at anytime en route to his office, I needed to stop at the ER to do so.So I took him in and pediatrician confirmed that, yes it was a seizure...but they didn't know why. We went in for a CT scan and that came back fine. He mentioned doing an EEG but said it was up to us. He stressed to us that 5% of children have at least one seizure in their lives and 60% of that 5% never have another one again so he wasn't all that worried about the potential of another one.The medics said something about a febral seizure but J rarely, if ever runs fever. His temp when they came to the house was 95.5 and even this weekend when he was hallucinating, he didn't have fever. He had another seizure at 9 that night. We were in the ER from around 9:15 until 5:15 Wednesday morning. They are keeping him on phenobarbatol. The meds knock him out cold. They are a seizure medicine but they also serve as a sedative for infants/toddlers going into surgery, etc. So basically they are keeping my son unconscious until they can figure things out! I just...it is awful. Absolutely awful. They did a whole bunch of bloodwork at the to make sure it wasn't anything to do with the croup or the meds/steroids they had him on. They ruled all of that out which scares me even more. The ER doctor got on the phone with the pediatric neurologist and she said that she needed to see him ASAP, this week. We actually had our appointment this morning. She gave him a preliminary diagnosis of epilepsy. She wants to go ahead and do an MRI and an EEG, more bloodwork and potentially a few other tests depending on how that goes. She has also referred him to a pediatric cardiologist because she wants to rule out early that it has anything to do with his heart. She said that epilepsy was typically diagnosed between 2-15 yoa. J is only a year and a half so they are really stumped on this. She is continuing him on the phenobarb and started him on another seizure medication. Basically, they are keeping him drugged up to where he is either sleeping or so dizzy he can barely even SIT up on his own, standing is out of the question.These meds, like I said, make him extremely dizzy. He's tired of being held, he doesn't understand why he can't get up and play like he normally does. He's just...he's so upset. He's crying non stop, banging his head, kicking, hitting. He's just so confused and our stress levels are way through the roof. Apparently the extreme dizziness can last up to three weeks while the meds work their way into his system. He will be on the second medication for two years (unless it is something with his heart). If, after two years he has no seizures at all, they will take him off the medication and see how he does.Anyway, as most of you know...we are five states away from our families. My mom flew in for a couple of days, but she has to go back to work on Monday, so she is flying out on Saturday. Justin can't do anything AT ALL for himself. He can't even sit up for himself at this point. He is wearing winter clothes because he stays so cold and his little lips are blue, he is stumbling all over everything...and I'm not used to this. I'm so afraid that this will break me. Please pray for our little family. Pray for us to get through this. I know it could be worse....but I'm afraid it could be a lot better, too.

Transfer from Myspace- The Late Night Light Show

October 7, 2007 @ 3:04 a.m.

"Inspire me, Child, to stretch my world as you stretch yours."
-Patricia H. Sprinkle

"Not again."
That is the exact thought that went through my mind as I heard the fussing coming from the monitor. My son made habit of getting up every hour and a half to two hours every single night since we brought him home from the hospital. He made a few exceptions every once in a while, but he never strayed too far from his routine. I rolled over and looked at the clock. 1:45…in the morning. The only problem I have with this is that he is 9 months old and is supposed to be "out of this stage." I was so exhausted. I nudged my husband, hoping…praying that he would get up and tend to the baby.

Nothing. Ok, something. He grunted at me.

I stalled for a couple more seconds, hoping that maybe he would find his bottle and soothe himself back to sleep. No such luck. I rolled out of bed, frustrated and exhausted. My goal was to get him back to sleep as fast as physically possible so that I could do the same. As I opened the door to his bedroom, I gasped. Then I heaved a sigh of frustration. Then I laughed. My son was standing, holding onto the side of his crib, jumping up and down. The smile on his face was so big that his two new teeth were shining so bright that they lit up the dark room. He was so excited to see me.

Still a bit frustrated at the fact that he was so awake at nearly two in the morning, I walked over to his crib and laid him down. I handed him his bottle and turned to leave the room. Before I could reach for the doorknob, he was back to standing at the edge of his crib. He let out a little, "aaauh" as if to alert me to the fact that he wasn't quite finished with me, like "where you going, mom?" With my frustration reaching its peak, I walked back over and picked him up. He laid his head on my shoulder and smiled. I turned on his mobile and carried him to the rocking chair. I sat him on my lap and we rocked in silence, watching the images of fish and stars radiate from the mobile as it sang "Twinkle, Twinkle Little Star." So enthralled with this late night light show with mommy, my son was bouncing up and down in my lap, clapping excitedly. At this point, all the exhaustion and frustrations went out the window. I was so wrapped up in him. He saw something so simple as something so exciting. We watched the mobile and I sang the song to him as it played. He sang along with me in his own beautiful way, clapping all the while.
All of the sudden, the mobile stopped. But then, as if by magic (or perhaps thanks to my handy-dandy mobile remote), the mobile started up again, igniting a round of cheers from my infant. I knew he was sleepy because he was rubbing his eyes like crazy while he watched these strange shapes dance across his bedroom. I didn't know the song that played when the mobile started back up, so I sang to him "Amazing Grace." Amazing Grace…how sweet the sound. I once was lost but now I'm found. Found. I found myself in this beautiful little boy sprawled out on his mommy's lap. This baby boy who found comfort and security in mommy's lap.

With God's help, my husband and I created the most beautiful little boy in the entire world. God trusted us with this precious life, to teach him and to guide him. Funny, though, how I find myself being taught by him. At that very moment, he was teaching me to appreciate even the smallest things. He was teaching me to, for once in my crazy, hectic life to have no regard for time and focus on the moment. So I did. Not only did I focus on the moment, I bathed in it. I soaked in it. I sang to him, I dozed off with him. I wrapped myself up in his skin against my skin, his heart beating in time with mine.

Sometime during second or third round of "Amazing Grace," I dozed off. I looked down and saw that my son was asleep. I laid him down and covered him up. I walked, no, floated out of his bedroom and into my own. I was on cloud nine. I felt so refreshed. 2:38. Really? It didn't seem like near that long. Maybe I was sleepier than I thought I was. No. It said 2:38. We slept for five hours before that monitor woke me up again. I woke up that morning feeling better than I've felt in a long time, closer to my son than ever…and more like a mommy than when I went to bed last night. He taught me something, something I hope to never forget. Something a week from now will probably be a distant memory. I don't worry, though. I know that if I forget the valuable lesson he taught me last night, he will beckon me to his room and I will find him standing, waiting for me.

It is 10 p.m. He just woke up, like clockwork….two hours after going to bed. After tending to him, I'm going to bed. I want to be sure that I am well rested so that I can enjoy our next late night light show.