All Laundered Out!

So, as you know the mitrofinoff has had issues since we left the hospital. Well, since that's the one going to the bladder, it's been a TON of fun dealing with it! We've tried everything we could possibly think of to fix it, even temporarily, but NOTHING worked. Our last attempt was a couple of days before school started and lasted all of about two weeks. So, we have come to the unpleasant realization that the one surgery we have tried to avoid like the plague is the only option we have left.

So, we are scheduled to be at the hospital on September 19th and the surgery is scheduled for the 21st. That scheduling works awesomely in the sense that the kids are off of school for that week, so my mom can watch my other two while we are at the hospital. It's sucks on the other hand, since it means that we have another 16 days of dealing with him peeing EVERYWHERE! You see, he no longer pees out of his penis where is diaper is. NO, No, no, he pees out of his belly, where a diaper can only cover so much. We have to "wrap" a diaper around his belly, and the reason I put that in quotation marks is because of the fact that the diaper doesn't really make it all the way around, which means that it doesn't anchor. So, it keeps sliding below his mitrofinoff allowing all of the urine to go out onto his clothes. Then, since he sleeps on his belly, we sleep in a pool of urine every night, b/c Richard and I can only do so much!

It's frustrating, b/c we may not be the cleanest people, but doggonit! we aren't that bad! It's so gross and we can only bathe him SO much!!! And as if that wasn't enough, he is now getting a rash on his belly where the skin is breaking down from all of the moisture! We've tried diaper rash ointment, aquaphor, powder, everything! And NOTHING works! Why? B/c it's on his BELLY! Nothing will stay on there when he's crawling all over the place and the diaper won't stay in place either!

It's so hard to see all of this going on and not be able to do anything about it. The doctor wants to dedicate an entire day of surgery to Isaiah and that makes it even harder for us to get the date pushed up.

There are so many times that I completely understand why someone would give their special needs child up for adoption or to the government to care for. On the same token, though, I don't get how anyone could go through with it, you know? I mean, it would definitely be easier, but there is NOTHING I would give Isaiah up for! Even with all of the drama, he's one of the most AMAZING people I have EVER had the opportunity to know! He's had more surgeries than anyone I have ever met, yet he laughs so much, he hardly ever whines or complains, and he always has this peaceful attitude that is so contagious. I mean, when I can hang with him, no matter where we are, I can't help but be at peace when I see his calm, peaceful eyes. I also can't help but laugh at the situation when I hear him start cracking up over the most random things!

So, really, I thank God for the opportunity to care for this amazing little man and I wouldn't give it up for anything!

SSssssttttrrrrrrrrrrrreeeeeeeeeetttttttttccccccccccchhhhhhhhh

So, in my small group at church we have a saying for when times get tough and that is that God is stretching us. Well, if you have read any of my other posts, you would see that God has been stretching me like crazy! And now is no exception.

As most of you know, Isaiah got a sugar compound placed in his mitrofinoff to tighten it and hopefully rectify the leaking problem three weeks ago. It worked AWESOMELY! I was so excited and the doctor was hopeful that it may be a permanent fix. Then, yesterday it was almost like a flashback; Isaiah's mitrofinoff started leaking like we had never done anything to it! I mean, he was soaking clothes left and right. His teacher called asking us to send multiple sets of clothes when he comes back, b/c not only did they use all he had, but they also had to use a couple of things from other students as well. He just wouldn't stop leaking!

So, I called the doctor yesterday and last night he decided that he needed to see Isaiah today in the office. I took Isaiah up there and all I could think was that I really hoped that it would leak when the doctor came in, so he would see what I was talking about. Well, sure enough, as the doctor walked in, it was almost as though a geyser had blown it's top! In a way I was happy, but in a way I knew what consequences this could bring. Fortunately, though, the doc came up with an idea: he wanted to make sure Isaiah's bladder was completely empty and then see if it still leaked, hoping that maybe we just weren't emptying his bladder all the way. Well, he emptied it and after a little while it started to leak just a little bit when he got excited and when his belly was pressed, so we were sent home with instructions to keep an eye on it over the weekend and call the doc on Monday.

Well, today is my birthday, so my husband took me and the kids to a Japanese steakhouse that made Isaiah EXTREMELY happy! It was fun to watch his reactions to what the chef did! Then, when we left, it was like all of that excitement and fun disappeared when I found that his shirt was soaked as well as his pants under the mitrofinoff site. I wanted to cry. I text the doctor who responded with clear frustration with the situation, b/c he knows what risks a bladder augmentation on a child carries with it and has been trying everything he can to avoid it and every attempt he has made has failed.

So, long story short, he is going to get the surgery set up that we have been trying to avoid like the plague. I felt like I had been sucker punched and could do nothing about it. That's one of the most frustrating parts of this whole thing: the fact that you can't do anything to help your child, you know? I mean, I have a girlfriend who's son seems to be allergic to EVERYTHING and I wonder how in the world she deals with it. But, she can help him, by avoiding those things. Although, it's extremely difficult at times, it's doable. Here, I can't do anything, but watch and pray. I feel helpless and horrible. You've seen and heard how mothers are the ones that make everything better. Yet, here I am, watching my son get scheduled for yet another surgery (and not just any surgery, one that carries with it HUGE risks) and I can't take any of the pain from him, I can't take his place, I can't make any of it stop.

So, if you don't know Christ as your personal Lord and Savior, you may ask yourself: why would anyone want to serve a God that would do this to their child? I'll tell you, it's not easy. To be completely honest, I have been balling my eyes out the entire time I have been typing this. But, I'll try to explain it the best way I can. I have been through hell. I'm not talking about with Isaiah, I mean hell I brought upon myself through stupid decisions. And, although I wouldn't outright deny God, everything in my life and every one of my actions did. Even after I spat in His face, and kicked Him, and turned my back on Him and shoved that crown of thorns a little harder on His head, He NEVER turned His back on me. EVER. I look back and see so many places and times that His hand was covering me in MY stupidness. HE was covering ME when I was turning my back on HIM. I shouldn't even be here right now! I should be dead or at the very least HIV positive or severely handicapped by my stupidity, but He saved me. He thought I was worth it! Worth getting a nail hammered in both of his hands and feet. Worth having a crown of thorns pounded onto his head until the thorns had actually met bone. Worth getting beaten to within inches of His life. ME! I was worth ALL of that!

Now, I may not understand why Isaiah has to go through what he's going through. I'm no expert on God and His ways or thought processes. There is one thing I do know, though: everything I have ever been through, whether self inflicted or not, has brought me closer to Him and has made me strong enough to deal with and go through this with Isaiah. Yeah, I'm gonna cry along the way, there even times that I am going to wail, but I will tell you God loves Isaiah more than I could ever love him and I will NEVER give up on the ONLY ONE that has NEVER turned His back on me. I will NEVER give the devil another opportunity to have ANY hold in my life, no matter what I have to go through. It may seem tough, but the hope He gives me to know that I am not alone in any of this and that He is crying right along with me and hurting, b/c I am hurting is worth going through this and more.

Good times!

So, we went to the beach last weekend! I was so excited! It was totally free other than gas to get there and back, and food! Isaiah went with us, b/c we didn't feel comfortable leaving him with anyone with everything going on. Plus, we figured that he needed a break as much as we did!

We drove down after Richard got off work on Friday and as expected Isaiah was quiet the whole way. He loves watching everything passing in the window and at night he loves the lights. I was surprised, though that he fell asleep on the way! He normally is too nosy to fall asleep!

Saturday morning we went to the beach, it was the first time this year that Isaiah was allowed to get into the water and the first time he had ever been to the beach, let alone the ocean! So, I took him in with me and he LOVED it!!!! He was crackin up over the waves and birds! It was so nice to watch him enjoying himself. Then, when we went to take him out, I found that the chait tube that was JUST replaced was GONE!!!! When I told Richard what happened, him, his brother and sister-in-law realized that they just saw it in the water and thought it was a small squid and were afraid to touch it! After we finally stopped laughing over that, we looked for and found it again! Can you believe that?! As many pairs of my sunglasses are sitting at the bottom of the ocean and we were able to find (not once, but TWICE) a white chait tube in the ocean with white beaches!!!! When I saw it, I finally realized how pointless that thing is for Isaiah!

See, the chait tube is like a little rubber tube that goes into the MACE and coils up inside the bowels. Well, the part that coils up is rubber also and it's supposed to anchor the chait tube in the bowels. For Isaiah, that is a MASSIVE waste, seeing that he crawls on his belly all of the time and spends his nights sleeping on his belly! Meaning, that thing was bound to get yanked out at some point! So, our first day at the beach cost us another hospital visit, although we haven't gone yet, but it's coming as soon as his urologist comes back from vacation and finds out what happened! It's sad that we have seen that man so much that my daughter now has a song for him!

Well, the rest of the weekend rocked and Isaiah had a ton of fun! He was exhausted when he went back to school at the beginning of the week, but has been cracking up the whole time from what I hear! Good times!

It's been a minute...

So, I haven't written in a while. It's been crazy around here. Things have not slowed down with Isaiah at all and life doesn't seem to slow down either!

OK, so two Wednesdays ago I received a call at 9:30 in the morning to be at the hospital at 1pm that afternoon to get Isaiah's chait tube put in. The thing was that I also had an appointment set up to find out the damage I had done to my ankle just before leaving the hospital earlier this month. So, I was able to rush over there and find out that I had bruised my bones and that was why it's been hurting so badly. Fortunately, I didn't fracture anything, though!!! Then, from there I had to rush to the hospital for Isaiah and since I had the other appointment, I didn't have time to drop Isabella and Jeremiah off with anyone and Isaiah wasn't allowed to eat, so I had to sneak a couple of little snacks to Isabella and Jeremiah, so they didn't start screaming. Those of you who have children know that those little snacks didn't save me from anything!!!! Isabella and Jeremiah argued over everything! They were so crabby and what's funny is the fact that the one person that hadn't eaten anything was the only one that was quiet!!!! Isaiah didn't complain about anything! Well, with the other two complaining, every minute that passed felt like a hour! Finally, Isaiah was taken and I was able to take the other two to the cafeteria for some horrible pizza and cookies. I will tell you, though, it was so nice to sit there with the two of them and eat lunch. It's so awesome how they can make me smile and laugh even when I just want to cry. Their smiles and laughs really must be God's way of helping me forget how frustrating everything is.

Anyway, everything went fine in his surgery, but that night the tube kept trying to come out!!! I had to go to his doctor's office the next day and found out the doctor that did the procedure had put the WRONG tube in!!!! So, last Tuesday night I received another call to be at the hospital Wednesday morning to replace the tube. What was great was everything went well, but then AGAIN last night the tube started coming out AGAIN!!!!!!!! I will tell you that I have decided that chait tubes SUCK!!!! So, I've put a call into the doc and am now waiting to hear what he says this time.

Also, the mitrofinoff is still leaking like nobody's business and Isaiah has ANOTHER procedure set up for next Tuesday. The doc is going to put a sugar compound in to see if it will tighten the tube, so it will stop leaking, but he did explain that it's only a temporary fix. So, basically we are just trying to push off the huge, inevitable surgery as long as we can. You see, Isaiah apparently has to get a bladder augmentation (as well as redoing the mitrofinoff and MACE) and after studying up on it some, I found that doctors usually try to avoid doing it on small children, b/c basically what they are doing is cutting a hole in the bladder and putting a "patch" on it to enlarge it. Since the child is going to grow it raises the risk of the patch tearing away and causing really bad infections that can also be fatal. So, yeah, I'm kind of o.k. with the temporary fix!

A lot of people have said that they are amazed at how I can stay positive in all of this. Please understand that there have been a TON of tears shed, but the thing is that when you walk with Jesus Christ, He gives you peace to know that He's got the big picture taken care of. All I have to do is take Isaiah to the doctor visits and surgeries. The doctor's may be there, but God is the One in control. He's taking very good care of Isaiah and loves him more than I ever could. So, yeah, I'm still human and yeah, it DEFINITELY hurts to watch and go through, but I can have joy, b/c I have peace in Christ!

When I was single I went through some drama that I ate my way out of. I got up to 225 pounds. I started walking and was able to lose 50 pounds. It was so great! It was so simple, you know? If I felt like working out, I would change clothes, put my sneakers on and just go walking!

Then, I met and married my husband and 3 months later got pregnant with Isaiah and gained every last drop back. Since having Isaiah I have tried to get the weight back off, but I kept getting pregnant! Finally, when I had Jeremiah, I knew I could FINALLY get this done! So, I got a membership at a gym nearby and started working out at 5am, that got old and I quit that. Then, I started doing the p90x and have only made it 3 weeks. Then, Jeremiah finally got old enough to go into the childcare at the gym, so I started going to an aerobics class in the mornings, but then found out that the childcare setup was quite idiotic. Then, I dieted and so on and so on.

I was so jazzed, b/c I started out at 230 pounds and got down to 200!!! Then, this year hit. I have been so stressed out, exhausted and worn out from hospital stays. And, as I said, I eat my way through drama, so I have gained most of that weight back. It's become so frustrating that I keep trying to fight off the urge to just give up. Here's the thing, though, on December 27, 2002 I had to watch my father dying in front of me from a heart attack. He made it through, but that was the first time I found out what it meant for someone's eyes to become sunken. B/c of that experience, I decided that I don't want my children to have to ever go through that. UGH! Losing weight SUCKS!!!!!

Man, liposuction is looking better and better!!!!

I am NOT forgotten!

So, been off a couple of days. It's been crazy trying to get back into the groove of things! Especially, since we still haven't really finished everything we were in the hospital for. So, you know that the mitrofinoff (the tube to the bladder) is still leaking like crazy. I've been thinking the urologist was being kind of lazy, which seemed kind of weird for him, but then he had us come in during his lunch to try to address the issue. When we were there he finally explained what was going on:

The reason Isaiah's mitrofinoff is leaking is because when he had to put a Foley in (a catheter that has a little water balloon at the end to keep it from coming out) he accidentally put it too far, which isn't hard to do, and ended up going into the mitrofinoff and expanded the balloon in the mitrofinoff (which I knew, b/c he told me when it happened). That means that he accidentally expanded the balloon in the small tube that only a small catheter could fit in and now it's stretched out. So, he is hoping that it will contract back down on it's own, b/c if it doesn't surgery will be required. He explained to me that if it doesn't fix itself it means that he will have to redo the surgery and at that time he will just do everything over again, the mitrofinoff, the MACE and now he will do a bladder augmentation as well, b/c either the mitrofinoff is messed up beyond repair and/or his bladder is too rigid to hold his urine.

Now, it seems like, although it still sucks for Isaiah, that it would at least fix things, but here's the thing: a few months ago we had talked about doing a bladder augmentation and so I researched what that meant. I didn't like what I found. A bladder augmentation will be the biggest surgery by far that Isaiah will have ever had to go through. It is also that riskiest, by far. And if I remember correctly, it will mean that Isaiah will be in surgery for about eight hours! To give you an idea, my c-sections took about 30 minutes to an hour, Isaiah's shunt revisions and replacements took (at the most) two hours, the mace and mitrofinoff took about two to three hours when done at the same time.

But, the length of the surgery isn't what bugs me, it's the risks involved that scare me. See, if this doesn't go perfectly the first time, which I have yet to see a surgery on him that has, the complications could range anywhere from an infection to a ruptured bladder and that last one just doesn't sound nice at all! The last time it was on the table as a possibility, it felt like the weight of the world was lifted off my shoulders, when it was decided against. And now it's like BAM! Right back there again!

Honestly, and I'm sure some Christians out there may be thinking "NO! We don't tell anyone about the hard side of Christianity, b/c it may turn people away!", but it's times like this that make it so hard to believe that God hasn't forgotten Isaiah. Now, some people may turn away thinking that God shouldn't allow things like this to happen, but I refuse to punk out on God just b/c He's not giving me what I want, how I want it and when I want it! You see, this sucks, I am NOT gonna lie to you about that! Ever since having Isaiah, it has felt like an uphill battle, BUT! And that's a HUGE but (*trying not to snicker at that one!*), God has blessed me so much with Isaiah, too! I mean, that little boy has a laugh that I have never heard before in a child, that - ask anyone! - you cannot help but laugh, too! He's got this demeanor of peace that spreads everywhere he goes. He gives these hugs that, even though his arms don't work like everyone elses, makes you feel so loved and like there is nothing better out there than to be lucky enough to be the receiver of this affection!

You see? Just because I am a Christian, doesn't mean that I am immune to tough times and when I hit those tough times, it doesn't mean that God has forgotten me. See, although it sucks while you are going through the tough times, those hardships and the drama are making you a stronger person. They are also giving you an awesome opportunity to show off God's glory, by praising Him all the way through it. I mean, there have been times that I have had to ask my church family to help me keep my hands raised during it, but I can't give up! I know what it was like to walk without God's blessings and His joy. I don't want to go back there again, even if it means that I have to watch my son go through yet another surgery.

Please know that God has never and will never leave you hanging. Even though it may seem like He is nowhere near your situation, He is. Although, it's hard to believe sometimes, I know that, not only is He catching every tear that I cry, He is also crying right along with me, b/c even though I love Isaiah more than I can explain, He loves him a million times more than I ever could. And, like me, He wants the very best, not only for Isaiah, but for me as well.

Focus, Focus, Focus!

So, this morning Jeremiah had a his two year check up and it was so weird going to a doctor appointment that had nothing to do with Isaiah. I think Isaiah started getting a little concerned about the appointment, b/c Jeremiah had to get shots and when the nurse came in with the tray of needles, Isaiah started crying! It was hilarious and sad at the same time that he's so used to being in the hospitals and doctor's offices and getting poked and prodded so much that he automatically assumes that any time we are there, it's for him. I will tell you that I think I caught a glimpse of him breathing a sigh of relief when he saw the nurse turn towards Jeremiah. Jeremiah on the other hand, did NOT fare so well! He had to take FOUR shots!

It was funny though, b/c I'm so used to taking them to the doctor's offices and dealing with the loud chaos that ensues in the tiny little room that when I had to take a friends child in with me, that I was babysitting, I realized just how crazy it gets, b/c she kept covering her ears and looking for a happy place! It was funny, but she is an only child. So, any loud chaos that's going to be had, would be brought by her. It was just funny to me watching her sitting there trying so hard to find the one spot, in that tiny room, that had that small breath of peace and quiet! Welp! Welcome to the world of three children! LOL!

After all was said and done there, we picked up a friend of mine and took off to the mall. What's funny is that I hate going to the mall, but whenever I go anywhere I have to weigh the costs of loading whether or not it's worth the trouble of loading and unloading Isaiah and his wheelchair. It's sad, but a lot of trips get rejected, if they can't offer something really stinkin awesome or at least something really needed!

Anyway, so we were at the mall and we took the kids to the play area over there and it kind of stunk, b/c Jeremiah and Isabella were having an awesome time climbing in, on, and around everything and all Isaiah could do was watch from his wheelchair. I know that his perspective may not be the same as mine, but it doesn't make it any easier to watch, you know? I mean, we got a jogging stroller to take Isaiah through trails and into parks, we got him a trailer that could be pulled by our bicycles, and we got him a wagon to be able to go everywhere in between, but it's frustrating to know that it's still not the same! Think about it, when you get on a swing, you don't need anyone's help to get you swinging on it, his legs don't work. I mean, he had to get therapy just to be able to lift his head up. Isabella and Jeremiah were able to do that almost immediately after being born.

It's frustrating, sometimes, b/c I want to make EVERYTHING work for him, you know? I want to get a house that is all flat, that he can take his wheelchair everywhere. I want a yard that's flat, so he can go outside with Isabella and Jeremiah without running the risk of flying down the hill to certain calamity. Here's the thing, though...God said that if I seek HIS kingdom first, meaning if I seek first what His will is and I make His will my highest priority, He will take care of EVERYTHING else! So, if I just keep my focus on Him, then He will take care of EVERYTHING Isaiah needs, wants, everything! See, cuz no matter what I do, no matter how hard I work, no matter how many hours I spend stressing, no matter how clearly I lay out any plans, God knows what is the very BEST for Isaiah. Ahhhhh....that really takes a load off!

Thought it would be over...Silly me!

OK, so we are home and all and that's all gravy. Here's the thing, though: Isaiah is now peeing through his belly (his mitrofinoff - the tube that was created for us to catheterize his bladder) so much so that we have to wrap a diaper around him now!

I was thinking, when we had gotten home, that when we went out people would see the staples in his head, which isn't embarrassing or anything, but I'm sure it's a bit disconcerting when you don't know what's going on. But, it IS a little embarrassing that his shirt keeps coming up and showing our ghetto rigged diaper wrapped around his belly and actually being able to see that it's filling up!!!

UGH!!!! he has a surgery coming up in the next week or so to fix the MACE, but every time I try to show his doctor that he's leaking through that thing, IT STOPS LEAKING!!!!! It's so infuriating! You know how your car starts driving weird or making a weird sound or your computer keeps acting up? Doesn't it ALWAYS happen that whatever it is stops happening AS SOON as the specialist looks at it?!?!?! Then, when they leave, what happens? IT STARTS UP AGAIN!!!!! It's like, it wants you to look like you have LOST YOUR MIND!!!!

So! I texted him a picture of Isaiah's clothes, bed and belly diaper!!! HA! ARGUE WITH THAT!!!! Oops! 10.....9....8.....7..6..5.4,3,2,1....Okay, calm again.

HOME, SWEET, HOME!

Ok, so I found out last week that we would be going home this past weekend! Sorry, for not telling but some people read this that may have let it slip out to my husband and I was going to try to surprise him!

So, we had found out that we were going to possibly go home early this week. Kind of a bummer, but it put an end in sight, so I would take it. Then, I was told that Isaiah would be able to come off of the antibiotics as early as Saturday. I didn't want to get too excited about what that may mean, so I kind of smiled and nodded. On Friday, though, I asked the Infectious Diseases doctor to clarify what that meant. He told me that as far as he went Isaiah could go home Saturday!!!! Now, he's the one that had been holding us up on the surgery for EVER, so this is BIG news!

Well, he explained to me that as far as the infections that were going on, he felt safe to end all of the antibiotic treatments the day after Isaiah had his surgery to put his shunt back in. So, I spoke to the neurosurgeon who told me that, because of the drama that had been going on in Isaiah's belly, he didn't feel comfortable putting the shunt back in there for a while. So, he was going to move forward with putting it in Isaiah's heart (OMGOSH!!!! That may not sound like a big deal to doctor's and nurses, but I tell you what! That still sounds scary to me!!!) So, anyway Isaiah had his surgery on Friday.

He finally went in at 4pm, he was supposed to be back to me at about 6, but at that time I received a phone call from the neurologist saying that things didn't go as smoothly as he had expected, but that Isaiah was fine and would be coming up in about 15 minutes. I tell you what, those 15 minutes felt like a lifetime. Then, they became a lifetime! About 45 minutes later I received a call from a nurse letting me know that Isaiah wasn't coming out of anesthesia too well, so they had him on some oxygen and they would have him up in another 15 minutes. HALF AN HOUR LATER they FINALLY showed up with him!

As many surgeries as he has had and as many times as I have seen my little boy returned to me with staples in his head (the first time being when he was only two weeks old), it still breaks my heart. He just looked so sad. I just wish I could take it all away from him, you know?

Then, Saturday morning came and his neurosurgeon decided that since the surgery didn't go so smoothly, he wanted to keep an extra day. I was kinda bummed, but if he didn't feel good about it, then I guess we were staying. As the day grew on, though, Isaiah started getting so much better! He was laughing and smiling and everything! He was eating and able to hold everything down! So, let me tell you! Sunday morning came and I was rushing EVERYBODY! What was frustrating was Richard was starting to get antsy and I was trying so hard to not to spill the beans that we were coming home, which is SO hard, since I hate lying to Richard!

Finally, I practically jumped the last doctor that we needed to sign off for Isaiah and we were finally finished! We were finally able to go home! So, in order not have to answer any questions, I text Richard to let him know we were on our way. When we got home, I was hoping to be able to pull into the garage, so Richard would be able to see me get Isaiah out of the truck, but NOPE I had to park in the driveway. So, I just hoped he didn't see, but I had to ring the doorbell, which meant he didn't see anything!!!! Our door, of course, has all that STUPID glass on it! BUT! When Richard opened the door, the look on his face was PRICELESS! Oh, it was so wonderful! Isabella and Jeremiah were SO EXCITED! Richard was shocked! He didn't know what to think. It was the best 4th of July EVER!

Say What? Anything Can Happen!

OK, so we've been here for almost a month and I'm sittin here thinkin (in faith, mind you) that CERTAINLY God has a reason behind this!!! So, tonight at least part of the reason came to me!

Isaiah and I have been chillin in the room for forever and the tech comes in and starts talking to me. We started talking and it turned out that she wasn't even assigned to Isaiah. She came looking for us, b/c she wanted what I have! Here I am trying to keep reminding myself that surely God has something He's trying to get done here, but I figured that I either missed it or that I just wasn't supposed to see what He was trying to do, b/c you know that sometimes what He's doing is not meant for us to see.

It turns out that she'd been watching me and felt that there was something different about me and that she knew that I was a Christian. It reminds me of the story in the Bible when Jesus made the tree shrivel up, b/c it didn't have any fruit when He was hungry. See, that tree didn't have any fruit, b/c it was out of season. That story showed me that we are supposed to be ready all the time, not just when things are going just right for us (in season). We are supposed to be ready out of season as well and that's when times are getting tough, when it's hard to see God's hand anywhere, cuz you never know when someone is watching. For instance, some people who are very close to me were going to have their first baby, but only a few months into the pregnancy they found out that there was no heart beat and that the baby was severely deformed. It was such a hard time for them, but they continued going to church and praising God throughout that time. Now, they may have never even seen the fruit of their reaction to their situation, but I had people coming to me that I didn't even know telling me how it blessed and encouraged them to know that they can make it through whatever they were dealing with, b/c they saw my friends making it through their rough time.

It's not easy going through the crap that comes with life, but there is truly always a purpose for it, whether or not we see it. It's hard to see it at the time - believe me! There have been plenty of times that I have cried and asked God why my son has to go through all of this, but I promise, He's proven to me over and over again that He's never left or forsaken Isaiah or me! Trust Him, I promise He won't leave you hangin!

Lose Control!

So, today has been long, exhausting and fun as well! I think I may have lost my mind! Last night ended with benedryl and you would think that meant long , drugged sleep for me, but NOPE! Isaiah's pulse kept racing, so that kept setting the alarms off and benedryl does NOT drown those things out!!!

Today, his belly got distended again and felt like it was going to explode. Then, he started shaking and his hands and lips started turning blue and all I could think was that even with all of the emotional drama that comes with Isaiah, I like him all to pieces! I don't want to lose him! He's fine now, but it's got me thinking. So, here goes my thought process:

Sometimes, the blessings God gives us aren't always going to seem like that, you know? Like, if God gives you a house, that doesn't mean that the house won't ever give you a run for your money. But, those things that bring you drama, also teach you things that you otherwise wouldn't have gotten, thanks to one of my friends who confirmed this thought process with me.

When Isaiah started getting shaky and everything, I was like "Lord! This would be one of those times that it would REALLY help me if he could talk!" It's so scary when he's going through these things, when he's shaking and having trouble breathing and can't tell me or show me what hurts or what's going on! But, the bible says when I am weak, He is strong. And, it's SO true! Cuz, all I could do at that point was ask the Lord to help me to see and understand.

You see? Sometimes, He has to put us in situations that we can't control, situations that make us rely on Him rather than ourselves. So, He receives the glory. See, when I think I can take care of things on my own, then I don't think I need Him and sometimes, He has to put be back in my place. I don't ever want to be independent! Cuz, I have been there. I did life on my own and it was just a waste. I was empty, alone and my life was completely pointless. Now that I've relinquished that control, I don't want it back. I have tasted the death of an independent life and no, it's not tasty!

Welp, that's it!

WAHOO!!!!!

So, here's the thing, Richard and I have worked very hard and have exhausted ourselves tryin to make sure our children are blessed during this time that Isaiah and I are in the hospital by making sure that they get face time with the both of us. We have traded off at the hospital during the weekend and he's come to the hospital when I've gone home on the weekends, but the two of us haven't really gotten any face time for ourselves. It's not easy to do, even when no one is in the hospital, b/c of Isaiah's needs, we are VERY selective as to who we allow to watch the kids. BUT! Thanks to a WONDERFUL friend offering to watch Isaiah at the hospital, my AWESOME husband and I went on an incredible date tonight!

Last weekend, we had some very dear friends visit with my husband and Isaiah and they offered to come out here, so I could leave and meet Richard for a date night. I tell you what, it seems like it would be such an easy yes, right? But, it's hard for me to leave Isaiah here with even my husband, let alone anyone else! But here's the thing, no matter how much I love Isaiah, I'm no good to him, if I build my entire life around him and allow him to come between me and my husband, you know?

It's been so easy, especially with Isaiah, to start putting my marriage on the back burner to his needs. I mean, he's got so many needs. We are in the hospital all of the time, but if Richard and I are falling to pieces, how do I figure he is going to be blessed? I can love and care for him all I want, but the best way that I can show him I love him is to make sure that I take care of my marriage, so he has that security in knowing that we are not going anywhere. That Richard and I will be together through thick and thin.

Anyway, we had a wonderful night! We went and got some seafood. It was so nice. It felt like a date. I mean, you know how once you're married, your husband figures he's already got you and he doesn't have to do the romancing anymore? Well, tonight wasn't like that at all! He opened doors for me, he got the meat out of the crab legs for me, since I couldn't do it to save my life! I tell you what, he's more handsome than I remembered!

Welp, that's it!

LOOK OUT!

So, I was chillin with Isaiah on the bed and it was so neat to watch him. His hands are so fun to watch. I don't really know why, but I guess it's like when you have a little baby and they're learning and they're hands are exploring everything and they're even exploring their hands. Well, I guess that what it's like.

I tell you what, I was watching him and it's like none of this is getting to him, you know? His eyes, his smile, this look of total peace on his face that just makes me feel like, it's o.k. I feel like he has angels that just hang around him all of the time to entertain him as well as protect him. I tell you, I wish I could see what he sees! I'm sure I have written about that before, but it's the coolest thing watching him!

Well, I've applied for a bunch of different scholarships. I think most of the were contest type things, but I figured, what the heck? Give it a try and see what happens. I've also requested info about a couple of different online colleges. Although, I was starting to get tired of filling out the info, I was really starting to get excited! I am really starting to get hyped about learning about this stuff (whoops, sorry, I don't think I said that I was gonna start seeing about nursing school)! I mean, my mom went back to school when she was like 45, but I never understood her excitement about it, you know? I went to college straight out of high school and you know how that is (except for those of you that are "excellers"), I was only going because I had to. At that time I was thinking, "Man! I just went through TWELVE years of school, why the HECK couldn't they just fit everything in there?!"

Now, I'm starting to get it! Being a stay at home mom has frustrated me, b/c it's like I'm starting to turn dumb! I know I'm smart (not trying to be big headed there) and I hate feeling like my intellegence is going to waste. Now, all of a sudden, the thought learning about the human body and learning more about spina bifida is so exciting to me, which is REALLY funny, since I always hated physical science, health, all of that! I like math and always figured I would go into computers. Nursing, though? But, YEAH! Now, I am so stoked about the idea of learning about this stuff. I'm sure some of my nursing friends that read this are probably shaking their head thinking "Oh, Lord, we're goin down!" :o)

Trying not to put my hand back in the pot!

OK, so I had the weekend off and it kinda rocked! I got Isabella and Jeremiah on Friday and from then on we had so much fun, minus the whining of course! News on Isaiah was getting better and better, so things were going purty darn well. Then, this afternoon I took Isabella and Jeremiah to a birthday party at one of those inflatable places and everything was going gravy until Isabella found one of the biggest obstacle course inflatables! So, I went through it with her to make sure she didn't get stuck, which of course she did when it came to the huge "rock climbing" part before slide. So, I helped her up and we slid down and out just fine.

After a while of hangin with Jeremiah, I went to look for her and found her in that same obstacle course!!! WHY DO THEY ALWAYS GO FOR THE HARDEST ONES?!?!?! So, I figured she would most likely get stuck again, so I went in and couldn't find her. And of course they make it that you can't really go backward without it being a huge pain in the rumpous. So, I went climbing up the "rock wall" thing and got to the very top and all of a sudden I lost my grip, which sent me sliding all of the way down. Now, I'm thinkin, "OK, surely this thing isn't that far of a drop!" But, I kid you not!!!! I slid for about twenty minutes!!!!! I felt my nail break, which TOTALLY upset me, since I had just prettyfied them the night before! Then, after my forever long free fall, I landed in a dip and on an inflatable you're not landing on solid ground, so yeah, my ankle twisted and OMGOSH!!!! It hurts so bad!!! I thought I was going to pass out when it happened! All I could think was "how tha HECK was I gonna get outta this thing NOW?!?!?!"

Well, I did and then had to get my husband to meet me at the house with a brace for it and I will tell you, I have never used my cruise control so much! (Ummm, I guess I should explain that it was a right foot that got hurt.) So, I had to leave the house and get to the hospital and it was so funny (now, at least, cuz it sure wasn't at the time!), b/c it felt like it took me an HOUR to walk from my truck to Isaiah's room!!!!

So, here I am! Stuck in this room, since I can't walk anywhere! So, I figured I would start checking out scholarship info online. I started applying for a few and started to wonder if I was sure that I wanted to go into nursing and not physical therapy or something that seemed even more logical for Isaiah. I started getting so frustrated, b/c I really hate wasting time. Then, I realized that in all of this talk, I have yet to even talk to God about any of it! I mean, I say that he is my God and King and yet, I just move on my own!

It says in the bible that everything is a massive waste of time when He is not in the lead (obviously paraphrasing there!) and I think I just told you that I have wasting time. I mean, I had dated a guy for FIVE years. I thought we were going to get married, even though I knew he was NOT AT ALL the right guy for me! I was just scared to be alone again. So, I kept my hand in the pot, instead of trusting God with my love life. You see? He puts desires in our hearts. He created us! So, He knows EXACTLY what we want, but more importantly, He knows EXACTLY what we NEED! So, He puts these desires in our hearts to give Him an opportunity to flex His muscles for us. You know how you know someone that has a need or even a desire and you have the ability to fill that desire? You may be willing to give it to them on the DL (Down Low or behind the scenes for my not so ghetto crowd ;o), but sometimes, like with your children, you want them to just come to you and ask. That's how God is, sometimes He does His work on the DL, but there are times, like when you have decisions to make or answers you're searching for that He's just standing there sweetly and gentlemanly like waiting for you to just ask Him.

You see? He's not going to just invade your life. He's a gentleman that knocks, but will not enter unless you open the door and invite Him in. So, we have the option, we can sit there and keep our hand in the pot, telling God exactly what spices and ingredients need to go in to make your life better OR we can say, "OK, Lord. You made me and know the desires of my heart, You also know what is best for me. So, please, do what You need to do. Add what You need to add and remove what needs to be removed. I trust You."

I'll be honest, it's not an easy thing to do to release control and it may take quite a few times to really release that control, since Lord knows some of us are a little more hard headed than others (not me of course *flinching at the chance of a lightening strike*), but I can promise you, life is best when lived out of control! Cuz, my husband is better than anyone I could have come up with! :o)

Ummmm, yeah...

So, we've been here for 15 days and I think I may be losing my mind!!!! You would think that getting the breaks my husband gives me would keep me somewhat sane, but yeah, I'm getting a litte stir crazy here!!!!! So, this post (probably like most of my others, since I don't proof read any of this!) may make little to no sense, so smile and nod! LOL!

Today it's has really gotten to me that my husband and I haven't spent much time together at all in the last 15 days. Last Friday I went home early in hopes of getting to spend time with him, but instead of being able to enjoy it, all I could think of was Isaiah here at the hospital all alone. What if he was crying? What if he was getting hungry? All I wanted was for Richard to hurry up and get back to the hospital. It sucked! I mean, I miss my husband SOOOO much and the one chance I get to be alone with him I spend stressing out over Isaiah.

So, I'm hoping that we will be out of here by Friday of next week. I'm hoping that I can get a sitter for the kids, so Richard and I can go on a date. Richard said that he would set something up, but I want him to set it up now, so it feels like there is real hope of us getting out of here, but how tha heck is going to do that, if we don't even know when we will be leaving?! DARN YOU DOUBLE EDGED SWORD!!!!!

I just realized that I normally go for a walk each day to get out of the room and get some exercise in, but today I didn't leave the room much at all! I was doing some exercises in the room instead and I'm not really sure why. Honestly, I think it was out of sheer laziness, b/c I have my fun socks on and I'm cozy in my sisters sweatshirt and I didn't feel like changing to go walking, cuz it's stinkin HOT in the hallways over here!!! That may have contributed to my lack of sanity right now! Especially seeing as now the hospital is on lock down and you have a very limited area to roam around.

You know what gets me, though? Isaiah is knocked out, we have the lights off and the nurses STILL come in talking at normal levels as though no one is trying to sleep! I'm like, REALLY?! So, any of you reading that are considering becoming or are in the medical field and work evenings, pay attention to your surroundings for crying out loud! Hmmm, this sounds a little crabby, huh? Really, I think it's pretty funny, but again, my sanity is a little impaired right now! LOL!!!!!! Welp, I'm tired and ready to conk out, so LOVE, PEACE, AND A WHOLE LOTTA HAIRGREASE!

Not the Perkiest Post...

This morning I was finally told what's going on: b/c Infectious Diseases is involved, they have to give the ok for Isaiah to have his surgery for the shunt to be put in, which makes plenty of sense seeing as I don't care to have to come right back, b/c his shunt got infected with the yeast infection that didn't get cleared up. Now, here's the real bummer in the whole thing; they aren't going to get his next blood culture until Saturday! Do you know what that means?! Even if it comes back clear, which according to them takes TWO days to process (TOTALLY FORGOT THAT FACT!!!!!), he won't have his surgery any earlier than Tuesday and that's IF they can get him on the schedule!

So, I took my husband up on his offer to give me a break and went to see Jeremiah (Isabella was taken by my sister to see Toy Story 3 - and I was SO jealous!!!) at my moms. His excitement to see me made me forget every last drop of drama that has been going on! I mean, he acted like I was the best thing since sliced bread! We played, my mom and I talked and I was the happiest camper!!! Then, my sister showed up and we took the kids to the pool. I was a little bummed that I couldn't get in, since I didn't have a bathing suit. Other than that, I was in heaven, up until I had to leave. The kids did just fine with me leaving, but I just can't get used to how much it hurts knowing that I'm missing so much that's going on with them right now and that we won't all be back under one roof any time soon. I know some of you may be thinking, it's just another week and a half, but after two weeks, FIFTEEN DAYS that has been spent mostly away from them and being a stay at home mom that is involved in every aspect of their lives, another week and a half is like an eternity!

I miss sneaking in their rooms to watch them sleep and having them crawling all over me and Isabella constantly having to show me EVERYTHING. I even miss their fighting over all of the toys, well...no...maybe not, but I MISS THEM!!!!! I really miss listening to my husband snoring next to me on our bed and the way he makes up songs in the shower about his love for me. Gosh, this one isn't really a happy post is it? Well, I guess if you were in my shoes you'd understand that some days in this situation just stink. :o(

Surely that's gotta be it!

So, I was smiling and nodding quite a bit yesterday, until 3:45 this morning. I couldn't take it any more when the lab tech had the audacity to come in loud and with an attitude right before she was going to draw even more blood from my son. Then, as the day wore on Isaiah started getting a fever, yet again! Then, my mom calls me to tell me that Jeremiah has a very red and swollen ear!

I know that God has a purpose behind this, but you know? it doesn't seem to make things any easier. It just seems like one child having drama would be enough. Fortunately, a friend of mine was able to give me some suggestions to pass on to my mom for it, but when she showed up with him to visit us at the hospital, his ear looked a whole lot worse that it sounded. When I showed it to the nurses, they all told me that he really needed to get checked out immediately, which sent my family rushing back out, which tore my heart out as they walked away. I miss my kids so much and to have to watch Jeremiah crying b/c he wasn't ready to leave me and honestly, I wasjn't ready for him or Isabella to leave either! What's more frustrating is wishing you could cry, but having all these nurses and staff surrounding me doesn't make that easy.

At least, I ended up finding out that it was just a bug bite that swelled up his ear. You know how I told you about how the Lord is pulling out a violent praise and in order to do that He's going to empty me out completely of myself? OMGOSH! I can't tell you how painful this has been! I mean, I'll go through whatever God needs me to for Him to get more glory out of my life, it's just not an easy road. Kinda makes me think about Job and how this man sat there and overnight lost EVERYTHING! His children, his land, his animals, EVERYTHING! There times that he let his frustration known, but he kept trusting the Lord. So, I guess I can handle this, since I haven't lost anything other than time. Man, that really puts it in perspective, huh?

Fire Shut Up In My Bones!

So, I know it's late, but I have felt like crap all day! As a matter of fact, I still do!!! I woke up this morning with these sharp pains in my stomach and couldn't figure out what was wrong. Welp, as the day wore on it was made very clear what was wrong (NO I'm NOT pregnant!), I have been riding the Great White Throne all day!!!!!!!!!! A lot of you may be thinking TMI!!!!!!!!!!!!!!! But, think about it... I am at the hospital with my son and I get sick! I don't have TIME to get sick!!!! I have to take care of my son! As if that wasn't bad enough, I got a horrible migraine as well! It just got me thinking about how if there is anything going on with Isaiah, I have to drop everything, b/c of the many things it could be and, like I am finding out, the many things that can get completely messed up from whatever it could be. But, if I don't feel well (heck, I could feel like I am on my death bed!), life just has to go on. I don't have time to make doctor appts for myself, b/c my life became "tentative" when I started having children, especially when I had Isaiah. Anyway, I just had to get that random thought out. Ahhh! I feel better! :o)

So, today we had to take Isaiah to see if his MACE was working properly, b/c unlike me, he hasn't gone pooh in over a week. And I found out that his PICC line didn't clogged up like my husband had said, the yeast infection that is in Isaiah's bloodstream contaminated it. So, they had to take it out. Upon finding that out, I also found out that the shunt revision that was postponed till this Wednesday is going the be postponed yet again, b/c it doesn't make sense to put a new shunt into an infected bloodstream to just have to replace yet again, b/c SHOCKER! It got infected, too! So, we will most likely be getting it put back in at the end of this week or the beginning of the next.

Now, here's the dealio: Isaiah's shunt is draining straight from his head, so the reservoir that it's draining into has to be level with his ear, so as not to drain too much or too little. So, any type of movement that is going to move his head up or down requires that we clamp off the reservoir and then level it again once he's situated. From being here so long and watching what they've been doing, I've become comfortable with clamping and leveling it myself and, in watching me, the nurses told me that I should really go into nursing myself. What's funny is that just last night my parents told me the same thing and I've actually had a ton of people telling me that throughout this year. So, that got me thinking.

It seems like it would be pretty interesting to go into nursing, it would help me take care of Isaiah better, if I am able to work, it would be a pretty good income and I think I would enjoy it. Then, I started digging a little deeper, b/c I have quit school quite a few times and I don't want to just jump into this like all of a sudden things have changed. I realized that what it is is that I want to do something of worth. Now, please understand that I feel that being a wife and mother has GREAT worth and I am not at all downing that or looking for some type of pity or something. What I mean is that I don't want to hide behind my children and act like that's all there is, you know?

You see, I know that God has placed a special purpose in each one of His children's lives, but so many of us (especially parents) will hide behind the blessings He has given us and use that as a crutch not to get out there and make His glory known. For instance, say that God is calling me to nursing. Well, honestly, my first response to just my parents saying it was "I don't have time". I have Isaiah that I have to take care of and who is a handful on his own, but the I also have two other children that I have to take care of and a husband I have to support. There is no way I could take college courses and even if I could, I couldn't do the internship, b/c Richard can't be expected to shift his set work schedule around the time I would need AND EVEN IF HE COULD, I wouldn't be able to work, b/c of the time it would require!

Do you see what I did there? God gives us all a purpose. Yeah, our family is our first ministry, but He didn't say "O.K., I've given Veronica Richard, Isaiah, Isabella and Jeremiah, so she's done." No, there's more that He wants from me and I have to make sure that I don't use the blessings He has given me as a wall to hide behind when He calls me to do more. It might be tough, but man! I know that He's given me Isaiah, so I can minister to other people that have to fight through the struggles of having special needs children! And if that means that I have to juggle my family, school, ministry, whatever to do it, then I had better step out from behind that wall, b/c I want to hear "Well done! My good and faithful servant!"

Seriously?!

So, I left on Friday for a break and the only reason I felt comfortable with it was because he was laughing and smiling the whole time! Then, Friday around midnight Richard called me asking where they usually put his IV's, b/c his PICC line got clogged! Then, Saturday morning he called me and told me that Isaiah threw up again and his temp. spiked and his heart just seemed to start going crazy. As if that wasn't enough, this morning he called me to to tell me that his hemoglobin level was low and they were going to start him on a blood transfusion! OMGOSH! I've watched my father dying from a heart attack right in front of me. I have held my son dead in my arms twice and done CPR on him both times. I have watched Isaiah have surgery after surgery since he was two hours old. But when I heard him say blood transfusion, my heart dropped. I've always associated them with someone that was dying!

I sit here and wonder just how much more of this can I take?! I mean, last weekend Isaiah looked like he was dying. His eyes were sunken and he turned ash gray! Then, this weekend he's getting his first blood transfusion! My mind keeps wanting to scream "GOD HAVE YOU FORGOTTEN ISAIAH?!?!?", but then my heart reminds me that God has never allowed anything to occur for nothing. He's always taken care of me and my family. I can only trust that He is true to His word that He will never leave nor forsake Isaiah. So, whatta ya gonna do?

This weekend, though I got a word that God is pouring ever drop out of me of myself, b/c He's trying to pull a praise out of me that He has never heard. I tell you what! That's one scary word, but OMGOSH!!!! In all of this drama and chaos, God is working on taking me into a level of praise that I've never experienced before!!! Can you imagine?! I mean, think about it! Jesus received the Holy Spirit, but He NEVER performed a SINGLE MIRACLE until AFTER he went 40 days and 40 nights in a desert with NO FOOD, NO WATER and the devil tempted Him every which he could come up with. So, for Jesus it was 40 days of hell for Him! But then, you see the amazing things that He did once he went through all of that drama! So, the way I'm figuring, all I can say is THANK YOU FATHER FOR THE DRAMA!!!!!!!!!!!!!

A Bounce in my Step!

Isaiah and I have now been here for 9 days (hasn't felt as short as it sounds!). It's been a huge roller coaster. As soon as things start looking good, the bottom falls out again! So, I've kinda gotten to the point that I try not to get too excited about anything, so the crash isn't so big, you know?

But, this morning Isaiah got two of his tubes taken out (the ones that were draining the abscesses in his belly) and I didn't realize how exciting it would be! Then, a little while later the nurse removed the NG tube from his nose!!!!!!!! That opened the door of opportunity for Isaiah to try to start testing out clear liquids, then foods!!!!!!!!! THEN, they removed all of the cables that connected him to the monitor!!!!! He's starting to look normal again! Although, the shunt is coming out of his head, it's coming out of the back of his head, so I can't really see it. So, I can now see his face clearly!!!! I can't explain how wonderful that made me feel!

Tomorrow I plan on going home to (secretly!!!) meet my husband at home before he comes up here to replace me for the weekend! So, I was walking down the same hallway that I had walked what feels like a billion times in the last week and found that I was smiling AND that there was a bounce in my step! It amazed me to see just how much the hope of getting a break and Isaiah's upturn gave me! I mean, I was doing Laundry here with a SMILE on my face! OMGOSH! I HATE doing laundry!

I tell you what, God NEVER gives you more than you can handle! I mean, I felt like I was going to lose my mind and I was losing hope that he'll get better any time soon and just when I felt like I was going to break, He brings me all of this hope! Then, as if that wasn't enough, I was just given a day at the spa, which I had been really hoping for the longest time AND a light up toy that just may work for Isaiah! You see? When you worship and thank Him through even the rough times, His blessings chase you down! WAHOO!!!!!!

Just Kidding!

I was so excited this morning! I got up thinking "YES! Today we get started on putting Isaiah together and hopefully go home in a couple of days!" Then, the pediatrician came in and after all of the formalities of checking up on Isaiah were over he informed me that we wouldn't be leaving any earlier than Monday! GRR! BUT! I guess I can get over that, you know? Just a couple more days than I anticipated. I can handle that.

Then, he goes in for his shunt surgery. With all of the nurses and hospital staff around, I try to act like, Oh yeah, been here done this, when all the while I was thinking about my baby going in for yet another surgery. They told me it would be about an hour, so I went back up to the room to make the necessary phone calls and possibly get some rest. About 20 minutes into the surgery, his doctor comes into the room! I'm thinking something has got to be wrong, but I'm trying not to freak out! He couldn't do the surgery! I didn't know what to think. I had never heard that before. Finally, he explains to me that when he made the incision on his head, he didn't like what he saw.

Basically, he found that the infection was still there and it was basically making it's way up the shunt! So, he took the shunt out and now my son has a tube coming out of his head, draining the excess fluid in his brain. Not a pretty picture. I was proud of myself, however, b/c I was able ot keep my composure a lot better than I had thought when he came into the room. He seems to be doing pretty well, except I think he has a little pain where the incision was made.

Richard and I talked today and we decided that I am going to take the weekend off, while he watches Isaiah. I didn't realize how much it would bless me, just to know that there is a break in the drama coming! I mean, it seems like each day our stay here seems to get longer and longer and today I just felt like there was no end in sight! I mean, I have desparately been trying to lose weight, but I feel myself getting fatter and fatter as each cafeteria food filled day passes! It just all feels so hopeless! Then, there's that one little glimmer of hope! I know I won't lose a pound this weekend, but at least I'll be able to get a break from this place. And hopefully, I'll be able to come back more rested, so I can better bless Isaiah! Who knows?!

What do you have to say?

So, we are still here at the hospital and it's starting to stink, b/c I know he's sick of being here and I can't do anything to make it better. He's getting so tired and watching him today was heartbreaking, b/c the nurses and staff can't just leave him alone!

Finally, we got a moment alone and Isaiah has never been able to speak before and today was one of the few times that have truly broken my heart not to be able to hear him speak. We just sat there and stared into each others eyes and it just felt like he really had something he wanted to say, but couldn't. You know, Isabella and Jeremiah talk my ears off! There are times that I have to tell Isabella that her mouth is in time out, b/c I would just love the sound of silence for a moment. But, this silence kills me. What I would give to hear him say "Mommy" or "Daddy"...ANYTHING. And only this year did I find out that his inability to speak is not normal for children with spina bifida. I was planning on trying to find out why he couldn't speak, but he can't seem to get a break from the hospital for me to get this checked out!

You know how as a parent, there are times that something goes on with your child, like they are crying, and you have no idea why? But, you are usually able to figure it out and although you don't know all of the time, for the most part you are able to be your childs hero and fix the problem. I feel like that with Isabella and Jeremiah, but a special needs child is a whole different thing that can make you feel like the ultimate failure. He's tired of being here, he's tired of being poked and prodded, he's tired of the surgeries and all I can do is try to comfort him as yet another needle is pushed through his skin and hold him down as they try to draw even more blood from him.

It's so hard to hear that we've created yet another false passage while catheterizing him earning him yet another surgery. I don't know how many times I have questioned everything I have done and why God would have chosen me to care for this fragile child when I find out that he's gotten his umteenth UTI.

But, here's the thing: According to the Bible, God doesn't make mistakes. There is a reason He chose the screw up to care for His sweet little angel. So, the way I figure, it's not always easy for me to believe it, but God seems to think I am the most perfect and best mother that Isaiah could have, b/c He knows every single mother, every single woman for that matter, that has ever graced this Earth and will ever grace this Earth and of all of those billions and billions of women that He could have given Isaiah to, He looked at me and said "There she is! That's the one that I made just for him! That's the one that orchestrated all of these little things in order to create, so she could care for my little man!" How amazing is that??? You know how we sit there and compare ourselves to everyone else, whether it's in parenting, looks, finances, everything! You see, God knows all of them and who they REALLY are and still said that YOU are the one He knew could handle whatever situation you find yourself in. He knows that YOU are the VERY BEST one for the job, no matter how much better you may think so-and-so could do.

Anyway...that's how He encouraged me today. Hope it encourages you!

And we're on the Upswing!

I'm sitting here watching Isaiah playing with some balloons that were given to him and remembering the first time he was some by the same people that gave him these. We had one our long stints in the hospital for shunt surgery. They came in with the balloons and we gave them to him and he started jerking on the string and in finding that it made the balloon go bouncing all over the place, he started cracking up! I mean, he didn't stop laughing the whole time they were there! Now, he's "matured" and will still play with them, but doesn't find them as humorous. It's such a blessing, though, to finally see him playing with them, since they've been here since Saturday night.

So, here's what's going on: we are going to finally take the drainage tubes out tomorrow, so that's two tubes off! Then, we found out that the MACE is beyond repair, so he's going to have surgery putting in a Chait tube, which is basically a tubes with a little door that we'll open and be able to flush him that way and then close it back up. Then, his mitrofanoff may be messed up as well, but we are to just keep an eye on that and hopefully THAT won't need more surgery, too.

Wednesday, we are tentatively scheduled for his shunt revision. The sucky thing is that instead of having it drain into his belly, which is where it's always drained, it is now going to drain into his heart! Now, they told me that it's ok and that it's not a high risk thing, but is it just me? Does it seem like messing with a five year olds heart is a little strange???? They make it seem like it's no big deal and all I can think is "WHAT?!?!?! AM I THE ONLY ONE THAT REALIZES YOU ARE MESSING WITH MY SONS HEART?!?!?!?!"

You know, what frustrates me even more is the fact that God just keeps reminding me that I only know in part. And it's not even that that's frustrating me, it's the fact that everyone seems so CALM about it all! I mean, am I the only one that prefers for everyone else to act frantically? They're just to calm to be talking about messing with my babies heart!

Anyway, that's where we're at and I guess I can just smile and nod for now.

OMGOSH!

So, yesterday my husband was giving me another break and I took Jeremiah and Isabella to a birthday party, since I wasn't going to be able to theirs today. Then, we went to church, which gave me the wonderful break I needed, until I called my husband on the way home.

I found out that Isaiah had projectile vomited and was looking extremely pale. And of course while I'm finding this out, my cell phone DIES!!!! So, I went flying home to put my phone on the charger, but I coulndt find it anywhere!!! Doesn't it just figure?! So, instead I went flying to my mom's house and hurried up and called Richard to find out that Isaiah wasn't doing well and that he wasn't seeming to get anywhere with the nurse.

Thank God for my mom, who immediately took Jeremiah and Isabella so I can fly to the hospital. When I got here his eyes were sunken and he looked so pale and sickly. After a few minutes he projectile vomited again! Then, he got even more pale and literally looked like he was dying right before our eyes. I couldn't take it anymore! I asked to get the doctor on the phone, but the nurse did me one better and told me that his urologist was on his way to the hospital as we spoke!

When he got there was such a blessing, b/c he was able to assess what was going on and didn't look at me with a blank stare when I tried to explain what was going on with the MACE and the mitrofanoff. So, it turns out that Isaiah's kidneys have "fallen asleep". Basically, when your body undergoes that trauma that his has, your kidneys will just go to sleep. So, now they have a bigger NG tube in his nose that goes to his belly and is draining the contents to try to keep him from throwing up.

Today, he looks a lot more aware, which is making me feel so much better. I don't understand how he can go through so much. I mean, I would think that a body can only handle so much, especially such a tiny one, you know? I wish I could take it all away, though. But, God apparently has a bigger plan for him!

Thank God for Knights in Shining Armor!

OK, so today I started out the morning finding out that Isaiah has VRE (Vancomycin-Resistant Enterococci), which basically a bacteria that has been created from the tons of antibiotics, surgery, and hospital stays. YEA!!! I also found out that it's contagious, which means that everyone has to now come in with a gown and gloves. It's the hardest part is watching the staff and doctor's acting like my sweet baby has cooties! I know that they have to keep themselves safe, so as not to spread anything and I would be MAD if my child got this bacteria from another child, b/c people were being unsafe. BUT, it's MY baby that's the "cooty" child!

Normally, I go to the cafeteria, get my food and come straight back to the room to be with him. But, for the first time ever I couldn't take it. I had to walk away. I felt like as the year progresses it's just getting worse and worse AND IT'S NOT EVEN HALFWAY OVER!!!!!!!!!!! I cried so much. I felt like how can it get any worse??? I called my husband and no matter how much I tried to fight it, I busted out crying on the phone for the umteenth time this week. My husband asked if I wanted him to come, but I couldn't ask him to do that, since he is the only bread winner in the house. Then, a few minutes later he called me and said that he was about to go home, shower and come out here to me! I was SO EXCITED!!!!

When he got here he took me to the cafeteria for lunch and he made me roam around and get my mind off everything. Then after about an hour he made me leave. I felt AWFUL! I mean, this is my job! To be here with my son! But, I had to remember that Richard is Isaiah's daddy. He loves and cares about Isaiah as much as I do . So, I'm leaving him in the best hands! I will tell you, though, when I got in my truck and drove out of the parking lot, I felt so free! I went home and got my clothes and everything I needed and drove as fast as I could to my moms house to see Isabella and Jeremiah. I didn't realize how much I missed them! It was so awesome to see them laughing and playing! I can't tell you what a blessing it is to have parents that are right there and WILLING to help!

Well, I finally had to leave them and get back to the hospital. On the way here, I found out that Isaiah was going into his surgery! So, now I'm trying to hurry up and get here and OF COURSE go the WRONG WAY on 285!!!!!! DURING RUSH HOUR!!!! UGH! BUT!!!! Thank God for GPS!!!! I took the most beautiful backroads drive to the hospital that calmed me down so much! Then, when I got to the hospital, Isaiah was still in surgery and Richard made me play putt-putt and basketball with him! It was SOOOO fun! When Isaiah got out of surgery I was ready and at peace with the whole thing! It was such a blessing to walk away for a minute.

PRAISE GOD FOR MY KNIGHT IN SHINING ARMOR!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

June 11, 2010

So, what started as a trip to the hospital for a mild fever has turned into 4 operations and another one scheduled for tomorrow. I tell you what, these were operations 22-26 and I STILL can't get used to seeing his little body going through it. It really makes me appreciate his smiles and laughs. It's something that I wish I could freeze time for. To see that smile on his face, even though he just came out of yet another surgery, blesses me more than I can even explain.

But, I have to admit that it's so hard with our family. I miss my husband so much. I called my mom, who is watching Isabella and Jeremiah. She put Jeremiah on the phone and he kept saying Isaiah's name and as soon as I told him Isaiah missed him, he got so excited and started screaming. I don't know how much he understands, but I do know that he misses his big brother. I wish I could just take Isaiah home and at least get a little bit of family time in. I mean, as much time that we spend together, I can't take any of it for granted, you know? B/c I never know when we will be back at the hospital. Think about it, I took him to the hospital on Sunday and we were back home that night. Then, Tuesday I got the kids up to get them ready for the chiropractor and found that his fever went up. So, I took him back to the hospital thinking we would be back home later that night or maybe Wednesday at the latest. Now, I'm finding out that we will definitely be here through the weekend and, depending on the damage that has been done, we could be here much longer.

I think about that and all I can think is; "maybe, we can get away or something someday, so we can spend some time together." But, even that thought is interrupted with the thought that maybe we shouldn't try to take Isaiah anywhere right now, b/c something may happen again. When you have a child with special needs, everything pretty much revolves around them. Not b/c you want to spoil them, but b/c their health can be so iffy that you constantly have to be prepared to rush to the hospital for any little thing.

I can't explain how much I miss Richard right now. Totally random thought, I know, but I think we have been in the hospital more than we have been home this year and it's only the beginning of June. I mean, he can come visit me here, so I can go home and visit with the kids for a while, but I can't really go home to him or go spend real time with him, so it does start to stink after a while.

I could really use a BIG hug from God right now! So, I wonder how He's going to give it to me, b/c He always gives me one when I ask!

That's it for now!

Okay, so let's go present day!

So, I'm sick of rehashing all of the drama that's gone on, especially since we are in the middle of a ton of it now!

Well, here's the dealio...we have been in the hospital more times than I can remember since January. He's had 7 procedures just this year. And to top it off, his 5th birthday is today and we are at the hospital AGAIN. AND he has two more procedures in the morning. His temp has gone up to 102.5 and since he can't talk, I don't know how much pain he is in. He had a MACE and Mitrofinoff done last month. They are both essentially the same thing - a tube created by his intestines that creates a hole on his belly and connects to his bowels and bladder (two different tubes and holes).

It turns out that something has gone wrong and he now has to abscesses in his belly (basically, there sections of puss in his belly) that are making him extremely sick. He threw up this morning and has basically been sleeping since yesterday. Fortunately, the needles haven't been too bad, though. I'm dreading tomorrow. I just hate the way he looks after surgery.

The hardest part of this whole thing is that I can't do anything for him. I can't take the pain away, I can't save him from more procedures, all I can do is watch and pray. In that, I find that I am totally dependent on God. All I can do is trust that He has everything in control and trust His Word that Isaiah is fearfully and wonderfully made and that He knitted Isaiah in my belly and has plans to prosper and not to harm him. I will tell you, being able to know that the One who created EVERYTHING has my baby covered gives me so much more peace than all of the best specialists in the world!

Surprise!

A few months after Isabella was born I found out I was pregnant again! As you can tell from the title, it wasn't planned! The day the doctor told me the nurse came to me apologizing profusely. I asked her why she was sorry and she said that she knew how difficult it was just with Isaiah, let alone Isabella and now to be pregnant again. Well, I have a lot of friends who are unable to have any children, so I refused to be one of those spoiled brat people that would actually complain that God would unexpectedly bless me, whether or not it was convenient.

A few weeks after finding out about the pregnancy I started to bleed. Later that same day the doctor confirmed that I was most likely losing the baby. I didn't know what to think. I broke down everything I did to see how I could have caused this. After agonizing over every little thing I had done, I remembered that I had taken a class that had us doing some crazy intense stomach exercises. I felt so stupid. I mean, how do you forget your pregnant AND top it off with a stomach workout that most likely caused a miscarriage?! Richard and I decided his name was Judah and he's in heaven and we'll see him later.

Then, a few months later, YEP! You guessed it! I found out I was pregnant AGAIN! I finally came to the realization that I couldn't even look at my husband without getting pregnant! We found out he was a healthy boy! OMGOSH! It was the most painful pregnancy! I was so excited when I started going into labor at 35 weeks until I found out that the doctor could stop the labor! THEY STOPPED HIM FROM COMING!!!! I mean, did they not realize how much pain I was in?! The next four weeks seemed like three months, b/c I was not only ready for Jeremiah to get here, but I kid you not EVERYTHING was labor pains! A pain in my foot was labor pains, back pain was labor pain, I mean everything was labor pains!!! But according to the doctors, none of it was. I had to wait the full four weeks before my c-section. It was also the most painful birthing! When the big huge guy and my tiny doctor finally shoved him out of me, my belly turned BLACK! I don't mean black and blue, I mean B-L-A-C-K! I tell you what, though, Jeremiah stinkin ROCKS! He's HILARIOUS!

Welp, that's it for now!

The Birth of Isabella and Isaiah's 1st Birthday!

On June 5th, 2005 I gave birth to a beautiful, HEALTHY baby girl. Hoping that since Isaiah's shunt had been working since January of that year, things would be great! One month after his first birthday proved that to be VERY wrong.

We were all sitting in the living room and my husband was feeding Isaiah his lunch. Richard was holding Isaiah on one knee while the food was on his other knee (SB keeps him much smaller than normal). Richard decided he wanted to shift everything, so he set the plate on the couch so he could adjust Isaiah. All of a sudden Isaiah started screaming his head off and became very rigid. Finally, he stopped breathing! I was holding my son DEAD in my arms! I started freaking out wanting so much to scream at God "HOW COULD YOU TAKE HIM FROM ME AFTER EVERYTHING?!?!?!" But, when you are a mom, you just have to pull yourself together and git 'er done! So, I'm checking him and totally lost on what to do, when I clearly heard God tell me "Well, you can keep freaking out and lose him OR you can do the CPR that I taught you in the beginning and save him!" I love the way He just talks to me so matter of factly!

I did the CPR on him while Richard spoke to the 911 operator. It seemed like the police showed up 2 seconds later! The first officer that showed up said that he almost lost control of his car when he took the turn onto our street at 90 miles an hour, b/c he just didn't play with a child not breathing! It seems like nothing big deal, but when it's your child it's great to know that people are taking it seriously, you know? We had to take him in the ambulance to the hospital and what's funny is that we found out from the doctor's that he had a "breathing spell", which seems like such an ironic name for it!

The next year was a blur of speech, physical and occupational therapy. Isaiah couldn't even raise his head without therapy. And things seemed to get better in regards to surgeries and hospital stays until he was two. About two months after his second birthday he had ANOTHER breathing spell! At six minutes into doing CPR the ambulance showed up.

I grew up feeling that no one wants to be near someone crying. So, I never cried around anyone. Even when holding Isaiah limp in my arms, I couldn't cry! I don't know if it's just that there's no time to go through the emotions or if it's that I just don't want to. Maybe it's a mom thing...I don't know. Anyway, that's all I've got for now.

Getting him home!

So, I finally got to really meet Isaiah when he was in the hospital, but then I was released from the hospital and he had to stay for further observation and so on. He was only there for a total of five days, but those five days felt like five years. Each night I felt like a horrible mother for being able to sleep while my newborn child was in the hospital. Although I slept, it was after hours and hours of agonizing over who was caring for him? Was he warm? Was he crying? Were they actually caring for him or treating him like he was just a number?

Finally, the visit came that they told us what we were longing to hear! "He's ready to go!" But, there was a stipulation; we had to be CPR certified, which about to make me chase a really cool (at least to me) rabbit trail. Now, you remember how I said that I found out he had the SB from a test I took during the pregnancy? This is how awesome God is! That test was the ONLY test I agreed to take out of the TONS of them that were offered! Had I not agreed to that one, I wouldn't have known, until the birth, that Isaiah had SB! Now, get this! The nurse is telling me I have to be CPR certified (keep that info in mind for a later blog) and OMGOSH! My sister TEACHES CPR! So, I don't have to find a class to try to get in to, my sister brought everything to me that night, tested us the next morning, gave us our licenses and we went and got Isaiah out of the hospital later that day!

Well, that's about it as far as the good news goes for a while, regarding Isaiah. Two weeks after his birth he had his second surgery. He had to get a shunt put in, b/c fluid was building up in his brain. Two and a half months later I found out I was pregnant again with my daughter, Isabella. I pretty much spent that entire pregnancy in the hospital with Isaiah. He was in and out of the hospital so much that I got to know what nurses I did and didn't like. What rooms I did and didn't like and so on. Isaiah, all the while, had this wonderfully awesome attitude. He was so laid back.

Then, when we were in for one of our long stints in the hospital, he started making a noise that scared me and the nurses and got everyone up in a frenzy, but then he all of a sudden stopped and was totally fine. I was so exhausted from the lack of sleep and the pregnancy that I was an emotional wreck when we finally got home. The day after coming home, I put him in his swing so I could work on something, but I started crying from all the drama and all of a sudden he started making a noise again! I freaked out and ran over to him (still crying, mind you) to find that he was CRACKING UP! He was laughing so hard he couldn't catch his breath! I couldn't believe it! His first laugh! God showed me at that point that He really knows what we need and when we need it!

Welp, that's it for now! Hope this one got at least a little smile from you!

Introduction...

I don't know if anyone will ever read this, but I figured I would give it a try! It's nothing fancy, just my joys and struggles of raising a special needs child. I just hope that it may encourage someone out there who may be going through it as well.

I have a beautiful son (Isaiah) who is going to be 5 in 3 days. He's had over 20 surgeries, the first of which was 2 hours after he was born. When I had him I wasn't able to see him until they finally brought him to my room for a couple of minutes before they rushed him across the street for his first surgery. Well, let me start from the beginning:

My husband and I met and were married about 5 minutes later in May of 2004. Three months later we found out we were pregnant. In about January of 2005 I received a frantic call from the doctor's office that he tested positive on his Spina Bifida (SB)/Down Syndrome test. Assured about 20 times before the call was over that there are tons of false positives, I was set up for an ultrasound at the hospital the following day to confirm the finding and find out the sex of our baby. Thinking all would be fine, my husband took the day off to go with me to this exciting visit.

Well, the tech did an ultrasound, then a doctor was brought in to do another one, finally a second doctor came in to confirm the first doctor's assessment and that was when we were told it was a boy! Thinking all was well, we were excited with the news until the doctor returned to the room and asked to speak with us in his office. When we entered his office and sat down, we knew our meeting was not going to be good. In a cool, calm demeanor the doctor explained to us that our son indeed has SB and that there is no telling what his condition will be when he is born. It seemed like it couldn't get any worse, but then the next words out of his mouth completely sucked the air right out of me as though I had be punched in the stomach...he asked if we wanted to terminate the pregnancy! I asked him if SB was fatal (since, I had never even heard of it until then) and he said "no, we just have to always give that option"! I was shocked! I couldn't imagine killing my unborn child, b/c he would be an inconvenience for me!

We left his office and the hospital in disbelief. Wanting to be excited over the news that we were having a boy, but so scared at same time that our future with him was so uncertain. With SB there is no telling what will be affected. Some children have it and don't even know it, some have it so severely that they are unable to function until they are much older. Some are able to walk, some will live the rest of their lives dependent on a wheelchair to get around. So, the doctors couldn't tell us anything other than, "if you're going to have SB, you definitely want the opening where his is", meaning with SB the spinal cord is filleted open and Isaiah's opening was at the base of his spine and only about 4 vertebrae long. But, even with this news, we still didn't know what to expect.

I finally gave birth to him on June 9th of 2005. They had to do an emergency c-section, b/c I was in labor for 2 days and wasn't dilating fast enough AND his heart rate kept dropping at each of the contractions. When they got him out they showed him to me quickly and took him and my husband away to explain to my husband (Richard) what the game plan was. Once they closed me up, they took me to the post-op room. I thought I was going to go crazy in there. Hearing the babies coming in and pictures being taken of the babies and the happy parents and the whole time wondering what was happening to my son. Where was he? Was I going to get to see him before he went into surgery? What did he look like? Now, keep in mind that they only allow the babies father to come into the post-op room and they took him with my son, so I am totally alone in this room listening to all of these sounds and left to my frantic thoughts!

Finally, I heard my husbands voice calling my name! He came to me with a picture of my beautiful son! You would think that would have been so wonderful, but I can't explain how that just seemed to make the fact that I couldn't see him SO MUCH WORSE! They finally took me to my room, PRAISE GOD! So, I didn't have to hear the happy couples and babies anymore! At that point I just conked out from exhaustion! A little while later they brought him in an incubator laying on his tummy. His back was bandaged up where the opening was, but the bandaging was already red from the blood that had seeped through. The doctor had told me in the beginning it wasn't my fault, but if I had taken in more folic acid, I could have probably prevented it. I tell you what, at that point, when I saw him in that incubator, I felt like the worst mother. Like, it was ALL my fault that my son was where he was.

For two days my nurses worked hard with me to get me walking, so I could go across the street to see him. And finally on the second day I went and got to hold him and I just melted. From that point forward, I never regretted our decision not to terminate the pregnancy, b/c he had (and still has) the face of an angel. I know that God gave him to us for a reason and that He has BIG plans for him.

Well, I guess that's all I'll write for now. I'll share more later. Until then, I pray that God's face will shine upon you through the wonderful gift He has given you of children.