What a rollercoaster ride!!!

As mentioned previously, my oldest had an accident and ended up with stitches in her upper lip.  Well, the following day.........ok, maybe I should do a disclaimer, if you are eating or drinking any sort of liquid especially if that substance is milk or anything else milky looking or if you have a weak stomach, please move on and read something that will not make your skin crawl and make you hate my blog for life.  With that said, the following day we noticed puss oozing (one word I do not particularly care for but it is what it was doing) out of her stitches and her lip was extremely swollen.  We took her into her pediatrician and he told us what we knew already, it was infected.  He asked how it could have become so extremely infected (so much so that he squeezed a ton of puss out of her lip and still it proceeded to come out, he even mentioned it exploding and popping stitches if not taken care of), I had no clue, she hadn't been eating and we were cleaning it really good and I thought back tot our trip to the ER and that's when it hit me, they never cleaned her wound.  Not once, she was seen by a doc and a plastic surgeon was called and nothing was ever used to clean the wound.  She was simply stitched up.  How could I have missed that and not said something?!!  Needless to say, our doc told us they should have cleaned it but there was nothing we could do about that now, however she would need to have surgery to fix the problem.  The surgery would go a little something like this, sedate my girl, proceed to open her lip back up and then some, clean it out like it is spring cleaning and stitch her back up.  My heart dropped.  The thing is, I would normally be nervous for sedating my child but in this case, even more so.  between the meds my girl takes and her Epilepsy, being sedated can be very scary.  I have been told by many a doctor how she would stop breathing and they would be breathing for her and then all of the nightmares she would be having coming out of the anesthetic.  Stop breathing?  Breathing for her?  I know this to be routine for them but it is not for me and I was scared beyond measure.  I had that brief nightmare of them telling me that she didn't wake back up and me having to go in and see her poor lifeless body on the table and say goodbye.  Yes, that may be morbid but lets not lie here and say you never think those things.  It is a brief moment of "this can happen" and then you snap yourself out of it and pray and hope that everything turns out int he complete opposite way.  And in this case, it did.  the plastic surgeon cut a small incision in her lip (while she was wide awake) and said it looked a lot better than the previous day and that the anti-biotic she was on seemed to be working and that as long as we drain it and clean it a couple of times a day, she would be alright.  I wanted to shout a good ol "HALLELUJAH" right there in the office but I waited until we were outside int he hallway.  As soon as the door shut to the office my sweet girl let out a huge breath and grabbed me and hugged me so tight.  I did so in return and we rejoiced for no surgery!!  and in the best way to celebrate, we went across the way to the mall and let her pick out something, Lord knows the girl deserves something special for being a rock star through all of this.  I am hoping to have much brighter and shinier posts now, along with pictures and hopefully funny stories.  thank you for all of the prayers and support for me and my girl through all of this!!!

Controversial?

Yesterday my co-leader, her husband and myself, took all of our Girl Scouts to the San Diego Zoo.  It was cookie kick-off day and we were excited to start the season and see some animals.  When you do any sort of Girl Scout event, we always like to have our girls wear their uniform.  Recently the Girls Scouts on Camp Pendleton made some shirts, simple t-shirts so that people would know what service unit our girls are from.  Just as if you make tie dye shirts, it is just something to show off our pride of being Camp Pendleton Girl Scouts.  The shirts are camouflaged and in bright pink on the front, it says Camp Pendleton Girl Scouts.  We have always had people thank us and smile at our girls, knowing that they sacrifice their time with one or both of their parents.  However, yesterday was completely different.  I had noticed that people were looking, I assumed because #1, we were all matching and #2, they wanted to see what was on our shirts.  It was then that my co-leaders husband pointed out that people were saying things like "did you see those shirts?!!!"  and "how could they have their girls wear shirts like that?!"  I think I even heard once "those shirts are inappropriate", really?  I understand that people are against the war and don't support what our military is doing overseas, but do you really think that our girls should not be supporting their own parents who are the fighters in that war?  I am not telling my children or anybody elses what to think, all they know is that they love their moms and dads and they live on Camp Pendleton and they are proud of where they are.  Even if they grow up not supporting war, I am 100% certain they will still support their parents. When did wearing camo become so controversial?  If we lived on a farm and had farming parents, we probably would have cow print shirts, it was not about being pro-war and parading our children around the zoo to support the cause, we were there to have a good time.  And to be honest, they are children, they are children who are already self conscious and staring and making comments about what they are wearing isn't going to help them.  So, if you live near us and happen to see any of the girls wearing their shirts, just smile.  And if you are offended, please just look the other way.

UPDATE: As I was writing this, one of my dear friends was finding out that one fo her sons friends had just lost his dad who was serving in Afghanistan.  Someones dad people.  Not just a soldier fighting a war, a father and a husband who will never come home.

Oh Come On!!!

Back in June I started having some major medical issues.  I had no clue what was going on and neither did my doctor.  I basically felt like I was dying and my doctor started to think I had some rare disease because all of the tests she was doing were coming back normal, yet I was still feeling like I was dying.  This is the test I got to do last week...........

Hooray for heart monitors!!

Before that I had a heart ultrasound.  And good thing that my heart was fine because during the 24 hours I had to monitor on, I also had the stomach flu.  So, the diary they wanted me to do was lovely; 6pm threw up, 6:30pm threw up, that went on every 30 minutes for almost 24 hours, it was fantastic!!!  Anyways, flash forward to today and my follow up.  Like I said before, my heart is fine.  But what did I also figure out in the last 2 weeks?  When I would have my "episodes" and felt like I was passing out and my blood pressure was sky-rocketed and my heart was palpitating and I was almost going to pass out......I had just had coffee or iced tea or even Excedrin Migraine.....what do they all have in common?  Caffeine!!  Some more testing and guess what?  I have a severe allergy to caffeine!!!  Kind of like the kids who cant have nuts or even look at a nut without going berserk?  Yeah, that's now me, only from caffeine.  Don't get me wrong, I am glad we found out what has been wrong with me and it is isn't going to kill me or have me go through any type of treatment, so I am happy.  But no chocolate?  That cant be right!  So, what did I do?  I came home and had a hand full of chocolate covered Dibs.....and right about now I feel like I am dying.....I think I have a severe caffeine allergy!

Anniversary

Yesterday marked an important milestone in my older girls life.  One year to the day was the first time she ever had a seizure and the day we were told she had Epilepsy.  The day still stands out in my mind, I can relive it like it was yesterday.  Cass was so excited.  For months she was excited because on August 22, 2009 she would be taking her first plane ride with her Grandma to go see her Aunt, Uncle and cousins in Washington.  The day had finally come.  Grandma was spending the night so they could get up super early to go to the airport.  I went to her room around 4 am.  I remember her waking up all sweetly and giving her a hug.  I told her it was time to get ready and how much I would miss her.  She looked straight in my eyes and told me that she would be ok, everything would be ok.  I didn't know then but those words would be something I would come to cling to in the next 24 hours.  It was a quick morning, she got dressed in a sweat outfit so she would be comfy on the plane, I threw her hair up in a ponytail and she was good to go.  Will was up too and we all headed downstairs.  My mom was still getting ready in the bathroom around he corner and Will, Cass and I were sitting on the couches in the living room.  Cass was sitting with Will and he was telling her to be good and he would miss her.  She said he was silly, walked across the room and onto my lap.  That's when it happened.  I didn't know what was going on at first, her face was looking away from me so I couldn't see her, but I heard this strange noise she was making.  I looked her way (still on my lap) and her arms were frozen up near her chest.  Since I couldn't see her face I assumed she was joking around being a dinosaur or something.  I even told her "Cass what are you doing?.............Cass?  Cassidy?!!!!"  As I was saying this, her head was slowly turning toward me.  And when I say slow, I mean slooooow.  As soon as she turned to me, her eyes met mine and I could see her mouth was blue and her eyes half back in her head.  "Oh my God, she isn't breathing!!!!!!"  As soon those words came out of my mouth Will jumped up and my mom came running.  I was standing by then with her in my arms, lifeless but stiff as a board.  Then the shaking began, a violent shaking so rough I felt I would drop her and so I put her on the floor.  My world at that moment was spinning.  My mom was standing over her trying to get her to come to.  Foam started to come out of her mouth and by then I was running up the stairs to get to the phone.  I came down with 911 on the phone and all I could see was my pale faced unconscious little girl.  My mom asking her to wake up......I ran outside.  I screamed for help, 911 was not there and I wanted help!!!!  Please someone, help my little girl.  My neighbors heard my screams and came running.  They dashed inside, another neighbor came to see if I was ok.  She just held on to me and waited for the paramedics to come.  And they took forever!!!  I know we live in new housing but they should know their dang streets!!!  A police officer was driving by and we flagged him down and he was able to get a hold of the crew and tell them where to go.  The operator kept asking me if she was breathing, I just couldn't bring myself to go inside.  I knew my mom and Will could handle it, I was a mess and seeing my girl on the floor not moving scared the hell out of me!!!  That's when the flashing lights started coming down my street.  The paramedics jumped out and went inside.  I followed, a little more comforted knowing they could help my sweet girl.  She was laying there with her head to the side blankly staring at the couch, not responding to anyone.  About 5 minutes after the paramedics got there all of a sudden she looked at my mom.  She looked so confused, I wanted to grab her and hold her and tell her how much I loved her, how sorry I was for running and leaving her, to let her know I would never run again.  But I couldn't, they needed their space to run tests.  They were very sweet to her but you could tell she had no clue what was going on.  To her, she was just sitting on my lap ready to go on a trip and the next thing she was on the floor with grandma and the paramedics surrounding her.  They said she was stable and that we would be going by ambulance to the hospital.  I knew I needed to go with her, I would not be able to drive first of all and not knowing if she was ok would drive me nuts.  Will drove behind us and my mom stayed with the younger 2 girls.  Before we left I remember asking my mom if she was ok because I was a wreck, she said she would be but I knew she was just as shaken as I was.  We made it to the local hospital where they would put in an IV, do a cat scan and run some blood work.  All the while calling around to local children's hospitals because after all, it was Saturday at 5 am and no specialists seemed to be working at any hospital that day.  Eventually they got confirmation from Children's Hospital of Orange County (CHOC) and withing 2 hours we were being transported again.  The people at CHOC were amazing!  They made my little one feel good and tried to put me at ease.  Will was able to get there within the next hour.  We had a nurse come in to perform an EEG, that's where they stick little nodules on your head that connect to a computer and they read your brain activity.  I was looking at the screen but of course had no clue what any of it meant.  But I knew it was not right.  The nurse had this look on her face and kept highlighting certain areas.  She kept telling Cass it was ok every time the lines went funny and Cass would curl her toes and get tense.  The nurse didn't even finish.  She excused herself and came running back in with the neurologist.  He looked at the screen, saw the parts she highlighted and told her she could stop the test.  He said that he would be back in to see us in just a bit.  They took the stuff off her head, which is held on by weird gooey sticky glue.  Will and I took our little girl into the bathroom and gently washed her hair and all the yuck away.  When we came out our doc was in the room.  Cass was put back in bed.  The doc said he just wanted to do one more test.  He had Cass sit up a little and start breathing heavily as if she had been running.  He was doing it too and having her follow him and before I knew it, she was back into a seizure.  He seemed pleased to know that happened but I looked away and couldn't help but cry.  What was going on?!!!!!  She was fine yesterday, she was healthy!!!!!  He sat us down and gave us some papers.  He told us she had something called Epilepsy.  That she would be getting an MRI done to make sure that no damage had been done to her brain and then we would start her on medicine, medicine she would be taking for the rest of her life.  He left the room and I told Will I had to leave for a minute.  I went down the hallway, into the elevator and lost it.  I felt so empty, I felt like the weight of the world was on top of me, I felt like someone had ripped open my chest and took my heart out.  I had to go outside and breath.  I had to call my mom, call my family.  I told them about this thing called Epilepsy, what it was, what it meant, saying the word was so strange to me.  But I knew I had to face it. I knew I needed to  cry, to scream and ask why......and then I knew I needed to go upstairs and be my little girls rock.  To make her laugh and see her smile.  So I did.  The nurse wasn't too sure if the MRI would be a success that day, the anesthesiologists were gone for the weekend and most kids and even adults needed to be sedated for the MRI because they had a hard time keeping still.  We said we would try and if it failed we would come back during the week.  Can I just say, my little girl rocked!!!!!!!  She laid still the whole time, for 45 minutes she laid there and didn't move a muscle!!  The doc told us everything looked fine but would have the other doc read it and let us know for sure before we left the hospital.  All of the nurses were so proud of Cass, they all came in with gifts and hugs.  Did I mention  how amazing the people at CHOC are?  That night was rough.  Cass slept the whole night but I think I only got 30 minutes.  I kept waking up to check on her, scared something would happen once I closed my eyes.  So I opted to stay awake.  I sat and watched her, I cried, I prayed to God for her to be ok.  The papers they give you to read have some awful stuff on them, I know they need to give you all the scenarios but it is a scary thing to read!  And the video they had us watch wasn't much better.  We left the hospital the next day, with her new meds in hand and a sweet smiling little girl.  She was pretty tired for the next 3 weeks, just wanting  to lay on the couch but week by week she was stronger.  We are now on her third medication.  The first 2 didn't work and she would have small seizures.  She is doing fantastic these days!!  Her last EEG was her best one to date and she is a champ at them.  She still has some problems and I know that even though things are great now, that they may not be in the future, but I stronger and know that whatever happens, we will get through it.
Whenever I read stories of tragedy and triumph or kids who are sick, I always want to know how I can help.  There are many ways to help Cass and other kids (and adults) just like her who are living with Epilepsy.  You can donate money to causes that help find a cure.  We love the Epilepsy Foundation, they are a nationwide organization but they also had different local branches.  You can also participate in activities that raise awareness and money to help find a cure.  On October 17 we will be walking for a cure in the Epilepsy Freedom Walk, if you would like to walk with us as part of team Cassidy, let me know, we would love to have as many people as possible!!!!!  And if you cannot donate money or time, please take a moment and be informed.  There are many amazing sites that give great information.  Helping someone while they have a seizure is easier than you think.  Here are just a few things:

1. Never try to stop a person from having a seizure, holding them down can hurt them more.
2. Never stick anything in the persons mouth.  They cannot swallow their tongue!!!!!
3. If at all possible, try to turn the person on their side if you see they might be choking, by doing this any saliva or blood from biting their tongue will come out of their mouth instead of down their throat.
4.  Try to clear the area around the person, hard or sharp objects could pose a major risk.

Thank you for reading.  I know this is a huge post and many who read it wont think twice.  But if this has touched you in any way, please do what you feel you can.  I am hoping that one day we will find a cure, that no one will have to have any more moments of their life lost to a seizure.

I will leave you with some pictures.  I have contemplated on whether to post her picture of her first EEG.  I feel like it would put an image in your mind that would hopefully light a fire but at the same time, it saddens me.  I can see the fear on her face and for that very fact I don't feel comfortable posting it.

This was taken the day after, we were still in the hospital and had gone down to their play room.  she was making a picture to bring home to Grandma.

This was earlier this year at a Purple Day Celebration, put on by a wonderful neurologist in this area.  she was able to meet other kids who have Epilepsy just like her!!!!

Power Of Prayer

How many people have had something happen to them  in a physical nature and prayed for God to heal them and had it happen?  I know many a people out there in the blog world may not be Christians and may not believe in the healing power of God but hopefully reading this will impact someone in such a way that they may pick up that dusty book in their drawer called the Bible and read how awesome our God is! 

I haven't posted a lot about my medical issues I have been dealing with lately but it has had me enduring numerous tests and on different meds.  Nothing thus far has turned up and no meds have really helped.  I like to think that I am a good Christian girl but it seems with everything going on lately I have not taken the time to sit down and pray.  Not for me and not for others and that is not a good thing.  I normally have a routine and have not been sticking to it as of late.  But this whole time I have been dealing with my issues I have had that sense that something was telling me to pray to God.  Instead of looking to my doctors, look to the ultimate healer.  And trust me, I have given things to God before and asked for things and they haven't happened.  In those moments I don't think that He is ignoring me, I know He hears but He also knows what is best for me, what will make me stronger in Him.  But a couple of days ago I started praying that God would heal me.  That whatever is going on, He would heal me so that I could live a normal life, being able to be the best mom to my kids that I can be, because with my ailments, there are times I have had to "check out" of the whole mommy duties.  And I can honestly say that since I have been handing it over to God, I have not had any of the feelings I have had before.  That is not to say that they wont come back r that God wants these to go away to make room for something else, but as of now, I am feeling amazing!!!  Many people who don't believe can chalk it up to anything medical.  Maybe something in my body chemistry has changed, maybe I have done something else with my lifestyle to make that change.  But I know the real reason. I prayed to an amazing God and He had been waiting for me to call upon Him.  To seek out His medical advice.  Our God is an amazing God!!!!!!!!!!!!!!!!!!  I pray that if you have a personal relationship with God that you nuture it and care for it.  And for those of you who may not have that relationship, I pray that one day you will.  That whatever is holding you back will not defeat you and you will give in and listen, He can change your life!!!!!