Seriously need to CLEAR my head and regroup!

This is the time when my mind starts spinning! Right when my kids are asleep.. and all is quiet! And I am left here to sit with my thoughts. My mind races. Some nights its fine, and im at peace, no worries, or fears, or thinking at all...

Tonight unfortunately is NOT one of those nights...

I am just so tired... EXHAUSTED! Having 2 children alone is hard work. But having 2 children, and then one who has Epilepsy, and another who hasnt stopped wheezing in 2 1/2 months... and then being almost 3 months pregnant! I AM SOOOOOO EXHAUSTED! I am so tired that I can barely stay awake to finish my homework! It sucks!

Everyone keeps saying, you need a break, take a break, get someone to give you a break! But its not that easy... and people can say it how they want, its easy for them to say it... its easy for them to take a break! But they dont have a child with Epilepsy... they dont know how I feel. Its not that easy to just get a sitter and up and leave and go do something. I have seen what happens when my daughter goes into Status, I have seen what happens when she starts clustering... and it scares me IMMENSLY to even think about leaving her right now!!!! NO WAY!

Aurora's seizures come when they want, and I have SEEN way to many times, people who DIDNT know what to do, or didnt think it was a seizure because they had there OWN thoughts on what seizures were! Not to offend them, but uneducated that there are MORE than one different kind of seizure!!!! I dont EVER risk my daughters life, I am her advocate, and I have been there since she was Born, and know my child inside and out, better than I know myself... and I just havent learned to "TRUST" yet! I know I trust myself when it comes to taking care of her.... but I havent yet trusted others... in fear that it could take ONE mistake and risk her life in an emergency situation....

I am not saying this to be offensive, this is my blog, my diary, my vent! And these are my feelings! I love EVERYONE who has been there for us! So my trust doesnt steam from personal issues, it steams from watching over and over again the medical feild brush things off, or not handle things how they should have been handled... that is WHY I am not trusting! I know that if Aurora is with me, I know what is going on, I am educated about her E, I know what needs to happen, and I know how to take care of her when she is seizing! That comforts me! My daughter for the past 9 months has been having seizures... just in the past month alone she has had over 40!!!! and they come unexpedately... I dont have a time for a break!!! They strike out of nowhere, and the one's who read my blog with children with E, you know exactly HOW this is... because we have talked about it on the forums.... its not that easy!

Aurora is my life, my soul, the reason why I breath everyday (Along of course with Mr.Wesley)... these 2 complete me! And I am just not ready to take a break! My idea of a break is being able to take a uninterrupted shower! But you know what you learn to live with how things are happening... our life for the past 9 months has been hectic, crazy, scarey... but in between there has been laughter, fun, and love!!!! I dont have time for a break, and I wish people would stop saying that to me!!!!! Like I wouldnt LOVE to go shopping, but with what money? Like I wouldnt love to go for a couple hours and do something BY MYSELF.. but who will watch the kids? And when they watch them, whose gonna pay them? And who is going to be there when Aurora has a seizure and the Sitter freaks and doesnt DO WHAT is needed when its an emergency! I will seriously take a break when my daughter goes for MONTHS without a seizure and is controlled! That is when I will ENJOY being away from them for a break... but right now, even if I was to go... I would STILL be worried EVERY SECOND about how she was doing. If she was ok.... BLAH BLAH BLAH BLAH BLAH!

So if someone wants to give me a break, I can always use a helping hand around my home... dusting, cleaning, laundry, dishes, meals... or coming to let me take a shower.... or get some homework done! That is what I need.

ANYWAYS!

God I love these blogs, that felt good... now moving on to something else to cleanse my mind!

So I am missing my Grandma.... She hasnt escaped my mind! I keep thinking, GOD IS SHE REALLY GONE? It just seems so impossible! The preacher was GREAT! He couldnt have performed a better funeral... his words were touching! It was weird to have all my family there and NOT her! I miss her. The preacher had everyone close there eyes and think of a great thought of her... and this was mine:

Well a couple :)

I remember my grandmother would have this little rubber green frog that layed on its on lily pad plate. Now that I am older, I know it must have been a sex gag... The frog had a big penis! BUT.... my grandmother of course didnt want me knowing that so she said it was his 3rd leg. AND I loved this frog. Now dont get my gram wrong, I dont think it was wrong AT ALL of her not to put the frog away... because I didnt know... and I seriously LOVED the frog. I thought it was sooooooo cool that he had 3 back legs! She said that EVERY time I came over I asked where frog was. Well I guess one time my grandmother, grandfather and I were all sitting around the living room, and gram had some church people come. And I kept on telling them about my Grams 3 legged frog, and asking her to show them! She was so embarrased... and WAS LIKE NO MEGAN! LOL LOL LOL!

Another memory that I had thought of while I was in the church with my eyes closed was....

My mother always let me take the bus to my grandmother after school. This one time when I got off the bus I didnt look both ways and ran across the street. My grandmother was SO FRIGHTNED that she spanked my butt.... and I cried! Of course I thought she was so mean for doing that!!!!! But she had told me a couple years back the story again, and she said that it had scared the life right out of her, and that she wouldnt know what to do if something had happened to me...

The priest than said "You should be thinking of these amazing memories of Charlene, and they shouldnt make you cry, they should bring a smile to your face!!!"

And these did!!!! My heart is so filled with memories from her! She was such an important person in my life. She was my Grandmother, I was her first grandchild!!!

I cannot tell you how much I miss her!!!

Well enough for tonight... I have to wake Aurora up in 30 minutes to give her, her meds.. . that sucks! She falls asleep, and I have to wake her up for her night dose. There is NO way around it. I tried to work out different times, but NO MATTER what its either the Tegretol or Keppra that I have to wake her up for, they have to be 2 hours apart from each other!!! SUCKS!!!!

For now... Goodnight!

Were home, all seems peaceful!

Aurora is home. She is sound asleep! Things are ok... wanted to just update that we are home, and if you want to call that is where we are!

Thanks for the flowers, and cards and such!!! It meant alot to Aurora!

I have my fingers crossed that this new med on top of the other is the RIGHT combo!!!

Back in the Hospital with Miss Aurora.

Well Aurora went almost 5 weeks without seizures! And yesterday afternoon she had 1 seizure, and then went 1 hour, and had another... and then went into clusters. The visiting nurse was there and witnessed what her seizures looked like.

Of course I had to call 911, and she took the ambulance down to the hospital where they gave her an IV, and gave her meds to stop puking from the emergency meds they were going to give her.

This time it felt more organized... maybe they are use to her coming in..? This time they KNEW what to do... not asking me A MILLION questions! So that was nice that they finally had the clue and worked right away to get everything done to help her!

They added a second seizure med in. Tegrotal. She will take it 3 times a day, and will also still take her Keppra 2 times a day.

She will need to get regular blood check ups to make sure this new med isnt affecting her white blood count, or her liver! Scares the shit out of me... but they said AS LONG as she is on a safe level than it shouldnt affect her blood count or liver at all!

I AM PRAYING that these 2 drugs will be the combo that will give her seizure control! I keep telling myself that they said from the start that it will take trying different meds, and different doses... EVERYONE is not the same, and some drugs that work for others, MAY not work for another person!

I have heard that Keppra works sometimes ALONE for some people with CERTAIN seizures, but its usually an ADD ON. So maybe with this new drug the 2 will work like they should!

It breaks my heart to watch my daughter go through this! When the ambulance was coming she said "Mommy, I dont want to have another seizure!" I didnt know what to say. I just picked her up and hugged her and told her Mommy was going to try EVERYTHING in her power to get her better!!!! Inside I was breaking!

Please pray for my angel! She doesnt deserve this. No child does! Pray that these drugs will stop the seizures, and that she can continue to lead a normal life... No more Ambulance rides, no more getting stab for an IV, no more med increases, or switches!

We are in Middlebury this time, which is nice. Usually they ship us to Fletcher, but they decided to keep us here. Its been calm and quiet... private room! And my kids have been able to sleep! Which is EXACTLY what Aurora needs, a good night sleep! We might be here another night.... so that she can be monitored!

I will update again.

RIP my precious Gram!

My grandmother died a couple days ago. She had battled Colon Cancer for years. She had it and fought it, and was cancer free for 8 years. It came back full force... and it was too much that even Cemo wouldnt touch it.

So she chose to live the remainder of her life knowing that she had limited time. The docs gave her 2 years. She lived 2 years 3 months.

She was an amazing woman. I will miss her so much. We were very close... I was her Meggie Moo!

We have talked everyday for the past 6 years 2, 3 times a day. Its weird to not have her to talk to... She was a very big part of my life... and its so sad she is gone!

RIP Gram, Let the Angels carry you home.

Another good week so far.

Well all has still been quiet. Aurora is still having good seizure control. I cant complain!

Wesley just went on Pulmicort for his wheezing. He has had 2 doses and his wheezing has cleared up about 90% already. He slept for the first time last night THROUGH the night in 2 months! Probably because he could breath better... poor little guy.

For all the people who read our blog and I havent told yet. I found out I am expecting again. This was an unexpected thing. I am about 9-10 weeks along. I find out in a couple weeks exactly when my due date will be. This will be done with an ultrasound.

At first I was really worried. I have a 3 year old, and a 9 month old! Holy Crap... What am I thinking! Kelly was really concerned because when we had Aurora she had her first Status seizure when Wes was 3 weeks old. It was rough being in the hospital with her while she had tests done, and It was scarey... plus having a new baby... it was tiring! And my nerves felt shot. I called the Neurologist and told her my concerns and she made me feel alot better. She stated that Aurora is such a loving child, and such a great big sister... and that NO one should base having more children on someone with E. She said that is just silly. That if Aurora is going to have seizures, she will have them regardless of another baby added to the family. They said it will be good to see that she stays controlled anyways.

Kelly was pretty upset at first. I dont blame him. 3 kids is pretty overwhelming considering that they will all be under the age of 4. BUT, I do believe that things happen for a reason!

So my family is expanding! I dont mind. I love my children... they are my life! And this is what life is about! Having a family, and watching them grow and florish!

3 Weeks TODAY for no Seizures!

Today marks 3 weeks of no seizures for Aurora! I am so happy for her! It breaks my heart to watch her have siezures, and I would give anything for her to not have them! So 3 weeks is good... now lets see if she can keep going! Hopefully this new dose will keep her on the right track!

She will be having her blood levels checked just to make sure this level is good, the Neuro nurse said that kids metabilze there meds alot faster than adults... so it will be nice to make sure she is at a good level! I would have to say with her being sick again, and not feeling good, and no seizures YET, that this is a good sign!

I will keep everyone updated. We will be hearing from the Neuro this week about possibly doing a follow up MRI since its been over 2 years. THis will be reassuring to knwo that nothing has changed with her brain, or her scars, ect!

Until next time, Goodnight :)

Happy Halloween!

Halloween!!! Aurora was Miss Cinderella, and made the PERFECT one! She loved her makeup... it was adorable!

And Mr.Wes was a Kangeroo!

Both kids once again have a cold, that they caught from going to my parents house last weekend. Unfortunately everyone there was sick... and we didnt know until we had ALREADY been there!

So Aurora was a little off last night. Kelly kept saying how Spacey she was, and he was making me EXTREMELY nervous that she was going to have a bad night, BUT SHE DIDNT so YAY!!!! We made Trick or Treating quick, and went and had dinner and then came home and put the kids right to bed!

We only made 3 stops, My parents house, Aurora Great Grandmothers, and then Margo's Work... and she came out with a BUCKET FULL! More candy than I ever got on Halloween! LOL!

It was so cute, we went to Rockydales and got Nacho's and Pizza for dinner, and Wes ate some chedder cheese. When we were done, I found all the cheese in his Kangeroo Pouch! LOL!

Halloween was fun, now on to the next Holiday!