Hey all! So, I've had a few people read this or hear me talk about Isaiah and a lot of them respond with "you are such an AMAZING mom!" Or, "I don't know how you do it!" And it got me thinking...
See, I don't write this blog for sympathy or praise, one of my main reasons is for people to see how AMAZING God is! You see, I'm not an amazing mom, or even a great mom, b/c of what I deal with regarding Isaiah. It's God living in me, it's the fact that Jesus is the Lord of my life and with that comes the blessings of peace, strength, hope and the endurance to push through the trials of having a special needs child.
It may look easy or it may seem like I have it all together, but the reality is that without Jesus I would be slap drunk and overdosing on pain meds to deal with the drama (and don't think those ideas haven't come to mind at times!). This is the hardest thing I have ever had to go through. I mean, I've been through my own drama that only affected me, but now it's my son and I can't do anything about it. On top of that, the doctor basically blamed me for Isaiah having Spina Bifida. So, if I didn't have Jesus, I would have no hope. I would EASILY be able to drown in my sorrows.
Some of you may say, "there she goes, she off in lala land thinking this Jesus thing is real, but all she is doing is using Him as a crutch, instead of dealing with her emotions" or some such thing, but I lived a lot of my life without Him, thinking He didn't care about me or what I did. It was a lonely, hopeless, dark road to death. But when I truly allowed Him to be Lord of my life, He gave me what I needed to live again! And, yes, at one point He was my crutch, b/c there was no way I could stand without Him, but as an awesome friend of mine said in our homegroup, He is now my legs upon which I stand!
When I was faced with the news that I could lose my son, I was immediately overwhelmed with peace, knowing that Isaiah is really God's little boy and if He wanted to take him at that time, then it was for a purpose. You see, every good and perfect gift comes from God and sometimes those gifts may look kind of crummy at first, but it's to grow us into perfection!
So, my hope is that when you read these posts, you (if you know Christ as your Lord and Savior) walk away encouraged to face whatever trails you must face or (if you do not know Jesus as your Lord and Savior) you see the Light at the end of the tunnel that is beckoning you to come to Him, so He can remove the heavy load that you are carrying. He loves you so much. He wants you to be able to praise in the tough times. He wants you to be able to laugh when it looks like there is no reason to! But most of all, He wants to gush all over you with the love of a Father that truly misses His child.
Saturday, February 18, 2012
Friday, February 10, 2012
WWWAAAYYY to close for comfort!!!
Sorry, folks! I am NOT good with keeping up with this thing! Plus, last year was a pretty good year! Then, December hit....
So, Isaiah was in class with only a few days left till Christmas break and his teacher texts me that he was kind of lethargic, but that they were going to feed him lunch and see how he does. Less than ten minutes later she calls telling me he vomited everywhere. Unfortunately, it was a self declared "pajama day". So, Jeremiah and I were NOT dressed to go anywhere and as some of you know, it's tough enough dressing yourself in a hurry, but a 3 year old?! It's a WHOLE other ballgame!
Well, we FINALLY made it out the door about twenty minutes later and all I could think is, "maybe, it's the shunt", "should I even waste my time taking him to the doc or should I go straight to the hospital?". I will tell you, though, that it does stink paying $150 to go the emergency room to be sent home with nothing. So, all I could do is get to him and figure it out from there.
We get to the school and I'm trying not to stress too much, since the nurse was waiting at the door for me and it only sounds like shunt issues, which we have had. So I know I can handle shunt issues and Isaiah would go through it like a walk in the park. But, then I got to his classroom.....
He looked lifeless in his teachers arms and she was crying and completely stressed out. I desperately wanted to hold him, but knew that I needed to act quickly without adding any stress to the people there.
I gently, but quickly grabbed him and started loading him onto his wheelchair, since that's the only way he can travel in my van and started getting him ready to go! Since I hadn't expected what I saw there, I still had Jeremiah with me, but since we go through so much with Isaiah, I have made it a habit to give Richard a heads up that I may have to dump Jeremiah and run with Isaiah to the hospital, which became the case. I drove as quickly and safely as I could to Richards job to give him Jeremiah, all the while checking Isaiah in my rear view mirror. It seemed as though he was getting worse by the second! Dear, Lord, what was wrong with my baby?! This is NOT a shunt issue!!!
After dropping Jeremiah with Richard, his Neurosurgeon's nurse called and I told her what was going on and she (THANK GOD!) told me that, if I needed to, pull over and have an ambulance meet me! Which is EXACTLY what I did! I had them meet me at my parents house that was less than 5 minutes away. And, on a side note, if you have someone flashing their lights at you, frantically waving for you to scoot over, just do it! My son was literally dying in the back of my van and this guy wanted to play around on the road, instead of letting me pass! It was the scariest thing ever! Isaiah looked like he was NOT going to make it to the hospital!!!
When we finally got to the hospital, my suspicions were confirmed when we were taken straight to trauma! I had never been there before, so I didn't know what was going on! I asked why we were there and they simply said that it helps the doctors and everyone to move faster with him, since they can have everything set up. Now, keep in mind that the furthest my brain is going is shunt issue, since everything has been totally fine with his cathings and flushings....up until they cathed him.
They put him on a bag and BROWN urine came out! BROWN! Not dark yellow, not yellow with traces of blood, BROWN!!!!! Then, they started asking me if he could have possibly gotten to some drugs that he wasn't supposed to take or if he could have drank any chemicals and I'm like, "WHAT?!" I am totally LOST!!!! Then, they tell me that we taken and kept in the PICU for a while and I am still lost! No one is telling me what is going on and I still can't seem to wrap my brain around what I am seeing!
We get up to the PICU and I am immediately kicked out for them to put a PIC (sp?) line in. A PIC line, as I found out in 2010, is a bigger version of an IV, also a more stable version. It's only used, though, when totally necessary, it's not a first choice kind of thing. Well, in 2010 his veins started collapsing from all of the IV's and that was why they went with the PIC line. So, I thought that was why they did it again. I was SO wrong!
Let me insert here that 10:30 am was when his teacher had originally text me, we got to the PICU at about 5:30 in the afternoon and at about 9:30 was when a doctor FINALLY spoke to me to give me an idea of what the heck was going on!
So, I'm sitting in the waiting room, well after my husband has left (he had to get our other two children from my parents house) and a girlfriend of mine was with me. The doctor FINALLY comes in to tell me what is going on and she isn't really telling me much, b/c she has NO CLUE what is wrong with him! I'm in SHOCK! She's supposed to know! She's supposed to come in, tell me "this is what is wrong and this is what we are going to do to fix it!" Instead, she tells me that they are running all kinds of tests and they can't find anything, but that something is attacking my sons ENTIRE body and he is dying! They have placed him in critical condition! I'm still stuck on "Wait, wait, WHAT? So, his shunt isn't malfunctioning?!"
They FINALLY let us in the room with him and he's has more tubes coming out of him than I have EVER seen on ANYONE! They think his lungs may collapse, so they have him on a breathing tube. They are pumping him full of the STRONGEST drugs they have, which is why they have 2 PIC lines going (for my nurse friends, I'm sorry I can't remember the real name of the one that is in his thigh). Then, I found out why he is considered "critical": it's b/c if they take him off any of those powerful drugs, he will die. My son was being kept alive by all the drugs being pumped into him. I was told "he is the worst case in the PICU" by one of the nurses. Now, before my nurse friends or anyone else gets upset at her for telling me that, I asked her to give it to me straight, b/c everyone was fluffing it up so much that I couldn't understand what was going on. I was thinking a day or two in the PICU and then we would go to a regular room for a while. No, his body was in shock when he got to he hospital. He WAS dying in my van.
I've had to do CPR on my son twice and this was the closest I had EVER come to losing him.
Now, some of you may ask: Hold up, I thought she was a Christian! How could God allow this to happen?! Surely, she would have turned from Him this time!
I am a Christian. And no where in the Bible does it say that it is going to be an easy road just b/c of it. As a matter of fact, I am doing a Beth Moore study right now on the book of James and he says "Consider it PURE JOY, my brothers, when facing trials of many kinds. B/c, you know, the testing of your faith develops perseverance. Perseverance much finish its work for you to become mature and complete, not lacking anything!" See, it's not easy. It's sometimes not fun, but "every good and perfect gift is from above" (James 1:17) and as I have recently learned in this study, "perfect" doesn't mean what we think it means, it means that it is a gift that is growing us into perfection in Him. So, even this trial is a gift from Him to grow me into perfection in Him!
As though that wasn't enough, as most of you know, I'm a minister of dance. While I was in the hospital with Isaiah, I was given the opportunity to minister to "Praise You in this Storm" by Casting Crowns. I was able to minister to the other parents and children in the same position I was in! See, what we see as hopeless, God sees as an opportunity! Isaiah isn't mine for me to get the glory (or even the fun) out of. He's God's little boy that He's going to bring others to Him by! My son is bringing people to Christ that we would have NEVER reached had he been a "healthy" boy!
Welp, I'll get off my podium now. I pray God helps you to see His plan in your trials!
So, Isaiah was in class with only a few days left till Christmas break and his teacher texts me that he was kind of lethargic, but that they were going to feed him lunch and see how he does. Less than ten minutes later she calls telling me he vomited everywhere. Unfortunately, it was a self declared "pajama day". So, Jeremiah and I were NOT dressed to go anywhere and as some of you know, it's tough enough dressing yourself in a hurry, but a 3 year old?! It's a WHOLE other ballgame!
Well, we FINALLY made it out the door about twenty minutes later and all I could think is, "maybe, it's the shunt", "should I even waste my time taking him to the doc or should I go straight to the hospital?". I will tell you, though, that it does stink paying $150 to go the emergency room to be sent home with nothing. So, all I could do is get to him and figure it out from there.
We get to the school and I'm trying not to stress too much, since the nurse was waiting at the door for me and it only sounds like shunt issues, which we have had. So I know I can handle shunt issues and Isaiah would go through it like a walk in the park. But, then I got to his classroom.....
He looked lifeless in his teachers arms and she was crying and completely stressed out. I desperately wanted to hold him, but knew that I needed to act quickly without adding any stress to the people there.
I gently, but quickly grabbed him and started loading him onto his wheelchair, since that's the only way he can travel in my van and started getting him ready to go! Since I hadn't expected what I saw there, I still had Jeremiah with me, but since we go through so much with Isaiah, I have made it a habit to give Richard a heads up that I may have to dump Jeremiah and run with Isaiah to the hospital, which became the case. I drove as quickly and safely as I could to Richards job to give him Jeremiah, all the while checking Isaiah in my rear view mirror. It seemed as though he was getting worse by the second! Dear, Lord, what was wrong with my baby?! This is NOT a shunt issue!!!
After dropping Jeremiah with Richard, his Neurosurgeon's nurse called and I told her what was going on and she (THANK GOD!) told me that, if I needed to, pull over and have an ambulance meet me! Which is EXACTLY what I did! I had them meet me at my parents house that was less than 5 minutes away. And, on a side note, if you have someone flashing their lights at you, frantically waving for you to scoot over, just do it! My son was literally dying in the back of my van and this guy wanted to play around on the road, instead of letting me pass! It was the scariest thing ever! Isaiah looked like he was NOT going to make it to the hospital!!!
When we finally got to the hospital, my suspicions were confirmed when we were taken straight to trauma! I had never been there before, so I didn't know what was going on! I asked why we were there and they simply said that it helps the doctors and everyone to move faster with him, since they can have everything set up. Now, keep in mind that the furthest my brain is going is shunt issue, since everything has been totally fine with his cathings and flushings....up until they cathed him.
They put him on a bag and BROWN urine came out! BROWN! Not dark yellow, not yellow with traces of blood, BROWN!!!!! Then, they started asking me if he could have possibly gotten to some drugs that he wasn't supposed to take or if he could have drank any chemicals and I'm like, "WHAT?!" I am totally LOST!!!! Then, they tell me that we taken and kept in the PICU for a while and I am still lost! No one is telling me what is going on and I still can't seem to wrap my brain around what I am seeing!
We get up to the PICU and I am immediately kicked out for them to put a PIC (sp?) line in. A PIC line, as I found out in 2010, is a bigger version of an IV, also a more stable version. It's only used, though, when totally necessary, it's not a first choice kind of thing. Well, in 2010 his veins started collapsing from all of the IV's and that was why they went with the PIC line. So, I thought that was why they did it again. I was SO wrong!
Let me insert here that 10:30 am was when his teacher had originally text me, we got to the PICU at about 5:30 in the afternoon and at about 9:30 was when a doctor FINALLY spoke to me to give me an idea of what the heck was going on!
So, I'm sitting in the waiting room, well after my husband has left (he had to get our other two children from my parents house) and a girlfriend of mine was with me. The doctor FINALLY comes in to tell me what is going on and she isn't really telling me much, b/c she has NO CLUE what is wrong with him! I'm in SHOCK! She's supposed to know! She's supposed to come in, tell me "this is what is wrong and this is what we are going to do to fix it!" Instead, she tells me that they are running all kinds of tests and they can't find anything, but that something is attacking my sons ENTIRE body and he is dying! They have placed him in critical condition! I'm still stuck on "Wait, wait, WHAT? So, his shunt isn't malfunctioning?!"
They FINALLY let us in the room with him and he's has more tubes coming out of him than I have EVER seen on ANYONE! They think his lungs may collapse, so they have him on a breathing tube. They are pumping him full of the STRONGEST drugs they have, which is why they have 2 PIC lines going (for my nurse friends, I'm sorry I can't remember the real name of the one that is in his thigh). Then, I found out why he is considered "critical": it's b/c if they take him off any of those powerful drugs, he will die. My son was being kept alive by all the drugs being pumped into him. I was told "he is the worst case in the PICU" by one of the nurses. Now, before my nurse friends or anyone else gets upset at her for telling me that, I asked her to give it to me straight, b/c everyone was fluffing it up so much that I couldn't understand what was going on. I was thinking a day or two in the PICU and then we would go to a regular room for a while. No, his body was in shock when he got to he hospital. He WAS dying in my van.
I've had to do CPR on my son twice and this was the closest I had EVER come to losing him.
Now, some of you may ask: Hold up, I thought she was a Christian! How could God allow this to happen?! Surely, she would have turned from Him this time!
I am a Christian. And no where in the Bible does it say that it is going to be an easy road just b/c of it. As a matter of fact, I am doing a Beth Moore study right now on the book of James and he says "Consider it PURE JOY, my brothers, when facing trials of many kinds. B/c, you know, the testing of your faith develops perseverance. Perseverance much finish its work for you to become mature and complete, not lacking anything!" See, it's not easy. It's sometimes not fun, but "every good and perfect gift is from above" (James 1:17) and as I have recently learned in this study, "perfect" doesn't mean what we think it means, it means that it is a gift that is growing us into perfection in Him. So, even this trial is a gift from Him to grow me into perfection in Him!
As though that wasn't enough, as most of you know, I'm a minister of dance. While I was in the hospital with Isaiah, I was given the opportunity to minister to "Praise You in this Storm" by Casting Crowns. I was able to minister to the other parents and children in the same position I was in! See, what we see as hopeless, God sees as an opportunity! Isaiah isn't mine for me to get the glory (or even the fun) out of. He's God's little boy that He's going to bring others to Him by! My son is bringing people to Christ that we would have NEVER reached had he been a "healthy" boy!
Welp, I'll get off my podium now. I pray God helps you to see His plan in your trials!
Thursday, October 20, 2011
AAAaaaaannnnnnnddddddd we're back!
Okay, so sadly I completely forgot I had even started this last year! But this morning I thought about it and tried to see if it was still up and here it is!!! Then, I got to thinking that I don't know some of the people following and they (and some of the people I haven't seen in a while) may be curious of what's been going on with my little man since the last time I posted. So, I'm gonna try to keep the communication lines open!
So, ummmmmm, last year one of my biggest prayers was that things would calm down by the end of the year with Isaiah, b/c we held him back from kindergarten one more year and I really wanted him not to be left hanging this year. I think I need to clarify that a little better! Well, we decided to keep him in pre-k last year, b/c he was in the hospital most of the time from January till the end of the school year. So, if we sent him to kindergarten (who looks at the progress from January till the end of the year!), they would have basically considered him a vegetable and left him in a corner. With that knowledge, I needed him to be out of the hospital from January to the end of the school year earlier this year. Well, finally on December 27th of last year, I received the news that he was okay. Then, in January, I had the appointments set up with his urologist and neurosurgeon and that's when I was told what was actually going on...
When I spoke to his urologist he told me what he really wanted to say, but didn't have time to at his last check up. He told me that Isaiah's MACE and mitrofinoff looked AMAZING! He said that he expected it to look fine, but he was amazed at how good it looked!!!! Then, when I took him in to see his neurosurgeon (who usually sees him right after a Cat-Scan, that we were planning on doing right after seeing him this time), he told us to take him home and leave him alone! He told me that he looked great and that he didn't think Isaiah needed to do anything else!!!!!!
So! Isaiah started Kindergarten this year and is being worked on and worked out!!! That, though was another interesting (at least to me) story...
Well, Isaiah had been in pre-k for three years. Same school, same teachers, same parapros, everything the same for THREE YEARS! On top of that, his Assistant Principal was in the marching band with me in high school! So, he loved all over Isaiah for THREE YEARS!!! On top of THAT, my daughter was going into his school this year for kindergarten!!!! Then, the bummer....Isaiah was moved to another school..........:o( I was so bummed that I actually cried about it a couple of times. They loved all over my little boy for three years and all of a sudden they were going to be replaced by someone that doesn't know Isaiah from a hole in the wall!!!
I felt bad for his new teachers. They had HUGE, AMAZING, BEDAZZLED shoes to fill!!!
I have to say that I am still not completely digging them. They are doing a great job, but they just aren't the same! And seeing that I am very pro "if it's not broke, don't fix it", it's REALLY hard for me to warm up to them! I'm usually okay with change, but this is NOT change that I like! Welp, I can't really do anything about it, since Isaiah has to go to a school that accommodates his special needs. So, I guess I'll suck it up and deal with it! LOL!!!
Well, there are more updates, but I will talk about those in the next coupla days.....
So, ummmmmm, last year one of my biggest prayers was that things would calm down by the end of the year with Isaiah, b/c we held him back from kindergarten one more year and I really wanted him not to be left hanging this year. I think I need to clarify that a little better! Well, we decided to keep him in pre-k last year, b/c he was in the hospital most of the time from January till the end of the school year. So, if we sent him to kindergarten (who looks at the progress from January till the end of the year!), they would have basically considered him a vegetable and left him in a corner. With that knowledge, I needed him to be out of the hospital from January to the end of the school year earlier this year. Well, finally on December 27th of last year, I received the news that he was okay. Then, in January, I had the appointments set up with his urologist and neurosurgeon and that's when I was told what was actually going on...
When I spoke to his urologist he told me what he really wanted to say, but didn't have time to at his last check up. He told me that Isaiah's MACE and mitrofinoff looked AMAZING! He said that he expected it to look fine, but he was amazed at how good it looked!!!! Then, when I took him in to see his neurosurgeon (who usually sees him right after a Cat-Scan, that we were planning on doing right after seeing him this time), he told us to take him home and leave him alone! He told me that he looked great and that he didn't think Isaiah needed to do anything else!!!!!!
So! Isaiah started Kindergarten this year and is being worked on and worked out!!! That, though was another interesting (at least to me) story...
Well, Isaiah had been in pre-k for three years. Same school, same teachers, same parapros, everything the same for THREE YEARS! On top of that, his Assistant Principal was in the marching band with me in high school! So, he loved all over Isaiah for THREE YEARS!!! On top of THAT, my daughter was going into his school this year for kindergarten!!!! Then, the bummer....Isaiah was moved to another school..........:o( I was so bummed that I actually cried about it a couple of times. They loved all over my little boy for three years and all of a sudden they were going to be replaced by someone that doesn't know Isaiah from a hole in the wall!!!
I felt bad for his new teachers. They had HUGE, AMAZING, BEDAZZLED shoes to fill!!!
I have to say that I am still not completely digging them. They are doing a great job, but they just aren't the same! And seeing that I am very pro "if it's not broke, don't fix it", it's REALLY hard for me to warm up to them! I'm usually okay with change, but this is NOT change that I like! Welp, I can't really do anything about it, since Isaiah has to go to a school that accommodates his special needs. So, I guess I'll suck it up and deal with it! LOL!!!
Well, there are more updates, but I will talk about those in the next coupla days.....
Friday, September 3, 2010
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!
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!
Thursday, August 19, 2010
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.
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.
Saturday, August 14, 2010
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!
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!
Friday, July 30, 2010
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!
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!
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