everyday moments...

Sophia was "training" the dog today.

Remember Mt. Laundry, the never ending mountain of laundry??

Today Sophia was squealing in delight as she had "trained" the dog to climb the mountain...

What mountain you ask?

Mt. Laundry of course.

Nothing like a 6 year old to humble you...

she then informed me that "Jazzy-Bell was far to scared to stay on the top of the mountain because it is way too tall, but she did go up and down"

Yep, humbled...

you know what I'm am doing tonight? Folding :)

my memories

Every once and a while I like to update on the "happenings around here"

My blog is not only my way of connecting with the outside world (since I spend my days trapped in this place with two monsters guarding my door) but it is also my journal. I love looking back at old blogs and reading what God has revealed to me at that time in my life, the important dates like Troy's first birthday, Sophia's cute little phrases, fun things we do together as a family... it's all on my blog... my blog is my journal to look back at the good memories and the not so good ones.

So tonight's blog is updating my memories :)

Tony is doing good at work. He is enjoying the new dealership. He likes working with his Dad, they make a good team. Tony is a good man, the kind of man who brings his exhausted wife a Coke Zero at the end of the night and kisses her forehead and tells her to go get a shower :) We have been staying up late every night working on the house, putting in new light fixtures, painting, building walkways outside at midnight (I'm sure our neighbors hate us). Tony's love for the Lord has grown and I'm so proud of him, happy for him and I see the change in his life. I adore him and I am so thankful that we have come this far. Our marriage is a blessing, it was fought for and it feels so good standing in the winner's circle with him. I'm holding out for a weekend getaway with my man soon, hint hint Tony... :)

Sophia is 6 years old, learning to read, loves math and continues to have her Daddy wrapped around her little finger. She never stops talking. She loves being homeschooled, co-op, Awana and most recently a little buckskin pony named, Coco. Most days Sophia is a joy to our home, she does like to provoke her brother as he does her, but most days she is our baby doll toting, makeup sneaking, always into something girly girl. Sophia hasn't had a seizure in a while now, we are seeking some alternative opinions and second opinions, I'm not ready yet but soon I'll give an update about all of that. We have some big appointments coming in the next two months, I'll keep you updated. She had her eye surgery and all went well, other than her new unique ability to breath out of her eyeball... I'm not kidding, I told her she's like a super hero now. I plan on talking to the doctor about it when she goes for her 3 month post op visit.



Troy is 4 years old, sweet little man, who loves his momma. He can't make a decision these days without "eni- meni- myni- mo-" which sounds cute but very well may drive me insane if he doesn't get over this phase soon. Troy eats everything, he is 35lbs now and quite proud of his skinny self. He walks around saying "I'm 35 points!" His favorite thing to eat is tomatoes... he eats them like apples. He waits all day for his Daddy to get home from work to "fight", he likes to wrestle and sword fight and would probably stay up all night "fighting" with his Daddy (his favorite super hero). He loves praying and every prayer starts with "Dear God, I hope we have a great day tomorrow-" Cutest. Thing. Ever.



That's all for now.. my productive day painting, playing outside, reading books and playing "Momma Bears" with the kids has worn me out.

Church bright and early tomorrow so I better get in bed... can't wait to worship our AWESOME God!!

first night in our house

Good Morning Everyone!

Last night was the first night we spent in our house. It was perfect! I slept like a rock, Tony right by my side, Sophia slept well (getting up only once) and Troy... well, he is still sleeping ;)

It really does feel like home, as much as we can feel like home on this earth anyway.

Now to put things where they belong... clean and settle in.

Only one big thing left to bring to the house, my craft hutch, I was waiting to find just the perfect place to put it. I think I've figured it out.. but need to empty some boxes first.

Most importantly I want to thank those of you who prayed for our sweet Sophia. :) She did great through her eye surgery yesterday. The staff at Shands were very kind and professional. The doctor believes the surgery was successful and so far it has proven successful, I'm amazed how great she is doing.. very little swelling and almost no bruising. She's tolerating the eye drops really well too, I was sure she would be freaking out about that. She gets 4-5 drops in her right eye 4 times a day for 5 days. Thanks again for your thoughts and prayers for our baby girl.

One on One

Yesterday my man was home...

lots needed to be done

and lots got accomplished.

There was plenty of running around on this day

Chores to be done, rooms to be cleaned out, plenty more to do...

Yet special time was spent with each parent and each child



Sophia got to run errands with Momma and then go to church and have dinner with Daddy

Troy got to work with Daddy and then spend an evening with Momma



We spend many days together but not much time is spent with one child at a time

Yesterday was special time...

Not a special activity but just special time...

time spent enjoying the kids one on one

Sophia is growing up so quickly she loved walking with Momma in the stores



I bought her a soda, she didn't say anything but I could tell it made her feel grown up...

it was nice to enjoy the simple moments like drinking a soda with her.

Troy is such a sweet guy, he keeps reminding me, "I'm four now"



He wants to be big "like Sissy" We made pizza, snuggled and read books and watched Power Rangers, I think he enjoyed the freedom of this one on one time.

Today, Daddy is back to work

First thing this morning Troy wanted Sophia to watch the Power Ranger movie he watched last night.. he doesn't want her to miss out.

She really wasn't interested but seeing his excitement- they are on the couch together watching the episode.

I hear them making plans about what they are going to do today, play dogs, jump on the trampoline, play in the playroom...

I'm glad they like being together

talking to God

Sophia got into some trouble this afternoon...

Her troubles usually land her in a quiet place where she can sit to think about what she did, why she did it and what she could do next time.

As she sat there she began to talk...

She was talking to God...



As she began to pray, she knew I was listening...

God my mommy is so mean...

She doesn't treat me nice...

I'm so mad...

Then she stopped...

I know God...

She isn't mean...

She does treat me nice...

I know, she makes me mac n cheese, she helps me wash my hair, she makes sure I have clean sheets on my bed...

She is a good mommy...

I know...

I know...

I know...

Amen.

She began to cry as she looked up at me.

I smiled and told her I love her and that I think she is a really great daughter.

She cried and told me that she knew I was a good momma...

She told me she talked to God because she was mad, but God talked to her,

Actually it was Abuelita, God let her tell me how good of a momma you are to me...

She told me she likes it when God lets Abuelita talk to her and she wished she could talk to her more...

I told her I was glad she got to talk to Abuelita too.

Girls Night Out

In honor of Breast Cancer Awareness, Sophia and I took off and got pink hair extensions...


She loved it, felt very grown up... and it was a great opportunity to explain to her why she sees people wearing pink ribbons and pink decor around town. It was nice to enjoy her company...


Then my girl friends and I went out to Japanese Steak House for dinner and then shopping at the craft shop...


I got stuff for Sophia's Halloween costume, she wants to be a vampire... she she's going to be a princess vampire :)

CURE:Citizens United for Research in Epilepsy

Today Sophia got her picture taken by Brian Williams, an awesome photographer in Central Florida, I was so excited to have him take her picture.

This picture will be used to help us raise money for CURE. CURE is an organization that raises money for epilepsy research. This is an organization that has taught me so much about seizures and has been a real encouragement to me during those dark moments in raising a child with a seizure disorder.

Our goal is to raise $5,000 this year for epilepsy research. 94 cents from every dollar donated to CURE goes back into epilepsy research and that is exciting! Not only that but we desire to raise awareness of this disease. Most people have no idea but epilepsy kills more people than breast cancer. This is a disease that can be cured and we want to be a part of that. We want our story to be heard and we want to help others who deal with this sometimes devastating disease.

Look for more to come, events and donation opportunities, we are going to do great things in honor of our girl.

Here is her story and some of my favorite photos from today.

Sophia was born on September 9, 2005. She was our first child, our little angel baby. Sophia was nine months old when I first recognized that Sophia may be having a seizure. Actually it was her grandmother who recognized it. I thought she was just teething, wincing in pain, I didn’t recognize that those unexplained facial expressions were actually focal seizures. We spent her first Easter in the hospital, EEGs, CT scans, and MRI tests, nothing was conclusive, yet, on a nine month old sometimes that can happen.

During the next three years Sophia had many seizures, many different types of seizures; absence seizures, myoclonic seizures, and tonic clonic seizures. Sophia has tried many different cocktails of medications. We traveled from our small town to larger areas with children’s hospitals and neuro-specialists. Doctor after doctor was mesmerized by our girl. They couldn’t believe with her history that she could walk, talk and function the way she did/does. They warned of us the reality of this disease and prepared us for the worst.

Today, Sophia is a wide eyed five year old. She is sensitive and caring. She is living with epilepsy, and for that we are thankful. She takes daily medication and still has ‘breakthrough seizures’ from time to time.
We understand the heartache and lives that are destroyed by epilepsy and while our daughter has been one of the lucky ones, there is a very scary reality that is constant in our minds.

Join us in remembering those who live day to day with epilepsy and those who have lost their lives to this disease.





Amazing pictures... Thank you Brian Williams Photography!!!

Josh Wilson came to our church!!

How cool is that!!!

This Sunday Josh Wilson blessed our church by leading worship and sharing his musical talent with us.

Music always reaches me... I'm sure it does that to many people. It gives me goosebumps, makes my heart ache, it connects the spiritual, the emotional, and the physical... it makes me feel the unseen.

A good worship service makes me cry and leaves me wanting to know more, learn more, be better.

Josh sang a few songs but there was one 'Before the Morning'.

He spoke about his friends and their son. They were told their child wouldn't live, that he would not survive a terrible heart condition. This "baby" is nine years old now.

I let Sophia and Troy sit in on worship service this Sunday and I held tight onto my little girl during this song.

The little girl who neurologists said may not learn to walk or talk because of the lack of oxygen to her developing brain because her seizures were so severe, the little girl who still baffles doctors with her abilities.

The five year old who walked through church that morning sporting her "grown up dress".

The one who says, "In heaven I won't have to take medicine that hurts my tummy and I won't have seizures."

Last week was a hard week for her... how I hate to see her struggle.. yet God uses her, and she continues, even in her struggle, to teach me, led me, being a reminder of what is really important and that in Christ we have hope.

My sweet girl who dares to believe, that we still have a reason to sing, because the pain can't compare to the joy that's coming...

Oh how you have blessed my life Sophia Ann, I thank God everyday for letting me be your Momma.

Everyday we have with you,
may not be easy,
we'll take the good and the bad....

I refuse to let your life, your hurt and your sucess be in vain. Your life is a testimony, you will do great things in this life sweet girl. You an inspiration to me, God is using you...

Life is not a snap shot, it may take a little time but you'll see the bigger picture, would you dare, would you dare to believe, that you've still got a reason to sing, 'cause the pain that you've been feeling, can't compare to the joy that's coming, so hold on you gotta wait for the light, press on and just fight the good fight, cause the pain that you've been feeling, it's just the dark before the morning...

Here's the music video so you can watch the song I'm raving about...
may it be an inspiration to you as well, may you find joy in knowing it's just the dark before the morning...

still need my momma, always need her.

Snuck away from the 'blog world' for a few days.

We have been keeping busy visiting with family. My sister was in town for the weekend. My mom took a few days off work. We went to some community events and took a day trip to a lake with a local playgroup. I have lots of pictures I want to share but that will have to wait until later.

I wasn't planning on a blog tonight, but I'm laying in Sophia's room keeping a close eye on her tonight and the only thing that I can do that is quiet and won't wake her is to blog. ;)

I snooped around Facebook for about thirty minutes and then decided to write a blog. I wasn't going to because I hate thinking of and remembering the stressful moments in life, but they are moments that we all face in one way or another.

Today was a very fun, productive day. The kids and I slept in and I really thought we weren't going to get much done but we
cleaned the garage,
I painted an old rocking chair that I'm going to 'upcycle',
I upcycled some busted up picture frames,
then we went to the fabric shop,
we had Chick Fil A for lunch,
I was going to attempt a trip to Walmart but decided we should go home for a nap... a nap that they didn't take.
So we ended up going to a friend's house to play for a hour,
then we went to the farm to help my mom with the horses,
the kids rode...
and what we thought would be a low key day, ended up being SUPER BUSY and lots of fun!
I came home bathed the kids, fed them a quick dinner, grilled cheese, veggie chips, and apple slices, put them to bed and my awesome hubby offered to treat me and my mom to Outback while he stayed home while the monsters slept. So we took off about 8:30 for a late dinner.

We had a nice time. My mom and I haven't been to dinner just the two of us in a really long time. I enjoy this bonding time, just the two of us. Twenty-six and I still need my momma, I'll always need her`. I like spending time with my mom, more now that ever, I get why she did the things she did and I really respect her as a mother and a woman. We have our differences but I can say I enjoy her in a different way now that I am an adult. Our fun night out got brought to a halt when I sent Tony a text message to see how things were going. He said that Sophia had been up in a panic, disoriented, and he was doing his best but he didn't know what to do with her that it was just getting worse.

I rushed home, told him to try and get her to calm down because she would end up having a seizure if she doesn't relax. She starts hyperventilating and that rapid breathing can provoke a seizure.

So much to worry about with this child.

She only recently started listening to music at bedtime and she told me that she "freaked out when the music turned off" and she thought she was going to throw up. I can't even pretend to understand but I do know that it has to do with the sensory dysfunction and while I don't understand how she thinks and feels I do know what I can do to help her get through it.

I scooped her up off of the bathroom floor and carried her into her bed. I turned all the lights off and grabbed a cold washcloth and rubbed it on her red, hot face. She was crying "I needed you." She needed her momma, like I needed mine.

I'm here sweet girl. I don't understand, but I'm here. That's all she really needs, a calm voice to tell her she is not alone.

I reminded her to breath deeply, taking all the air in through her nose and blowing it out of her mouth. While we breathed together I prayed, prayed that God would take this away. Prayed that God would give her peace. She said, "Mommy you are falling alseep."

No, baby, I'm praying.

"I like it when you pray for me."

I always pray for you.

It breaks my heart to see her struggle. Struggle with noise, light, textures, emotions... I don't understand it, but I know how to make it better, or at least more bearable. Thank God for that.

Once she was resting, the chaos was over, I called my momma. I needed her, I'll always need her.

I thought about how this type of thing used to happen. How frustrated I used to get. Why was she acting like this? Why was she freaking out, making herself have seizures? What is wrong with her?

Now that we know there is something wrong it makes it so much easier to be compassionate, easier to be understanding, easier to help her cope with it.

So thankful God gave us good doctors, a good occupational therapist, she is surrounded by people who can help her, people who love her and want to see her succeed, even if she has to do it in her own way.

So thankful...

saying I'm sorry

I may not do to many things well in this life, but I know without a doubt that I treasure every moment with my children.
Even the rotten moments, and yes, believe it or not we have our fair share of those too.
Sometimes more than I'd like to admit.
I'm never one to play the "mother of perfection" role, I probably make more mistakes than successes but I know, my children know, without a doubt, that they mean the world to me.



My sweet Sophia.
I lost my temper with you tonight.
I bit my tongue,
prayed for God to quiet my tone.
I know you don't respond to angry words,
not many people do.
I asked you for forgivness,
and we talked calmly.
I wiped your tears,
held you tight,
I may have cried a little too.
This life is not always an easy one,
and getting angry only makes it harder.
I am sorry, sweet girl.



As I crawled into bed tonight, over tired and restless, I thought about a woman I met, you told me you should never apoligize to your children. She as a proud woman. I thought about how many times I heard the words "I'm sorry" from the mouth of my mother.
How many times?
Not too many, but when my mother spoke these words she always meant them.
She didn't use the word forgiveness lightly, she taught us that it was important.
That we shouldn't ask for forgiveness unless we really mean we are sorry,
and then we have to really try to not do those things again.
My mother taught good lessons, she is a good momma.
I'm thankful for that good momma tonight.
The momma that taught me it is ok to say "I'm sorry" to a five year old. The momma who taught by example to put others first.

Do nothing from rivalry or conceit, but in humility count others more significant than yourselves. -Philippians 2:3

a letter to my monsters

Sophia, my first born, the one who made me a mother.
My little darling. I love you more than I know how to put into words. From first breath you have brought me my greatest joy. You have a way of humbling me, swirling me out of control, only to show me what is really important in this life. I want the best for you, I want you to thrive. I lay awake at night wondering how I can enrich your life, teach you better, be a better example.

Troy, my little man, the one who made me a better mother.
Sweet boy. You melt my heart. You are carefree and wild. You have taught me not to be caught up in the happenings of this world, but focus on the happenings of the heart. You make me stop to play. You are consistent and balanced. You bring superheros to life and can make anyone smile. I strive to bring balance and joy to your life. I don't want to hinder your spirit. I want to see you flourish, help you, teach you, and watch you run, so fast and so free.

To my Children,
I hope when you look back on your childhood you look back with found memories of love and laughter. I hope you think of all the fun things we have done together, but mostly I hope you know that I loved you. I read once that the most important thing for a child to know is that they were loved. So my sweet ones, I acknowledge I make mistakes, I may not meet every situation with grace and compassion, but know that I loved you more I ever knew was possible. The kind of love that taught me how God must love us. I didn't understand the power of God's love until I experienced life with you two. You made me a better person and every morning when I get up I pray to God that he will lead me, so that I can be an example for you. I pray that God use me to show you His love, for as your mother, there is no greater gift I can give you than to show you how God loves. I love you Sophia Ann and Troy Anthony.
Love,
Mommy

whoa baby! this is an update!

Lots going on... as always but I have so much to update family and friends on.
First off, we had a great time homeschooling this week, for the most part of the week we have been learning at home, we did go to co-op on Tuesday. I enjoy low key weeks when we stick around the house. I know it is important for the kids to socialize with other children, but I feel like we go- go- go- all the time so I enjoy the days we hang around the house.
Now that I said we had a low key week and hung around the house- besides co-op, we did have gymnastics, cheerleading, and karate :) and it's only Thursday (well, 12:45am on Friday morning). I just finished my homework for school. Sophia has a basketball game to cheer for on Saturday morning too.
I love this crazy busy life. :)
OK- so an update on my school. This week I made it official. I'm going to complete my Masters in Education with a minor in Education Technology, so that I can, in the future, teach at the college level. I'm hoping while the kids are still small that I can teach online classes (thus the minor). I'm excited and this is always something I wanted to do but there was something kind of intimidating about making it 'official'.
I'm holding on to my Dean's List status and I'm pretty proud to announce that I have a 3.91 GPA. There really is something about paying for your own school that makes you want to do better. I did four years of college with a scholarship and assistance from my mom.. I did good.. well, I did ok, I did just enough to not loose my scholarship.. but now that I'm paying for it myself.. I want to do my best! I remember taking a freshman class with an 'older woman' she was probably only in her 30s, but to me she was 'older', she always made As and I remember thinking. She has no life, she doesn't go out, she doesn't have friends in college, no wonder she makes good grades. What was I thinking?? She was only a mom of 3 kids, who worked a full time job, and she probably was paying for those classes... yea, she didn't have anything to do. OH- how stupid was I??
UPDATE ON SOPHIA
Sophia is doing great. She is excelling with her school work. The neurologist and I have been in close contact. We have met with an occupational therapist and common with high functioning cerebral palsy is a disorder called Sensory Integration Dysfunction (aka Sensory Processing Disorder). Initially I had called the doctor because Tony and I were at a total loss with her behavior. Our days were filled with high emotion and stress, by the time Tony would come home I would be frustrated and need help. Tony would step in and in the few hours of him getting home and her going to bed he would be worn out as well. Tony has always been very patient with Sophia so to see him loose his temper I knew it wasn't just something I was struggling with. It's hard to pin point what was so wrong. There were tons of scenarios and we would constantly play them in our heads, what could we do different, why wasn't she responding, she's so dramatic!! I called the neurologist about 8 weeks ago and talked with him about it. I have read and re-read so many parenting books, I had tried so many different parenting/discipline styles but I felt that the situation was out of control. He listened and listened, and waiting to respond, he then set us up an appointment with an occupational therapist who specializes in neurology disorders... and after an observation, answering LOTS of questions, the conclusion was Sensory Processing Disorder. A name, finally, but what did this mean? Basically Sensory Processing is the way we perceive what happens in the world around us and the way we respond to it. So- sights, smells, sounds, touch, textures, and experiences... it affects many different areas in a person's life. With tools people can live productive lives- awareness and work are key! If you are interested I will suggest reading "The Out of Sync Child" this book was recommended by the occupational therapist and by a friend. At this point the OT has given us plenty to work on and we have already seen HUGE gains. Finally we are hopeful and we are no longer wondering.. does the medicine make her act like this? Why does she seem so out of control? Now, that said, we are not making excuses for her behavior but we do understand it and when we understand it we can better help her handle these high stress emotions.
As far as her seizures are going, she is doing good. Adjusted to the 100mg per day since her last seizure episode. She always amazes me. She is really into baby dolls and animals right now. She is always carrying around a baby doll pretending she is mommy or an stuffed animal. She's getting older now, she gets shy when I watch her play with her toys. She likes privacy :) It kind of makes me sad but I'm also so glad to see her growing and turning into a little girl. She loves getting into my make up, coloring, and play-doh.
UPDATE ON TROY
Last but not least, Troy- Last year I wrote a blog about Troy's breathing issues. The pulmonologist was encouraging us to do a lung biopsy- one of the things they were looking for was Cystic Fibrosis. This really scared me, he had a positive stool test and a negative sweat test... so the next step was a lung biopsy, which I have been 'ignoring'. I just figured his breathing has been doing really well with a daily oral medication and an inhaled steroid and other than a few illnesses when he required additional breathing treatments or higher dose steroids he has been doing really well. This hasn't been an urgent thing and well, to be honest, Sophia has been. Troy has had bouts with "bathroom issues" and I just summed it up to him being lactose intolerant and the possible diagnosis of cystic fibrosis. TMI: but chronic diarrhea, extremely stinky poos, bloating, and poops that float, yes float, these are all symptoms of cystic fibrosis.. along with the well known, breathing complications. Troy hasn't grown, height or weight for close to 17 months and I knew it was time to get back to the doctor because we had to figure out what was going on. So we went to the pediatrician to talk to him about everything last Friday. He ordered some blood work and was going to make the appointment for the pulmonologist for Troy. Then- blood work came back and the levels of nutrition in Troy's blood were very low. His body isn't absorbing nutrients in food. He ordered more blood tests (luckily they did those off of the blood they already had) and turns out Troy has Celiac Disease (sounds scary, but it means he needs a gluten free diet because the gluten in foods prevent his body from absorbing nutrients- that's why he isn't growing). The stool test of Celiac and C.F. are the similar, measure the fat content in poo, thus the positive stool test. So yes, he has asthma and breathing issues but at this point the doctors have ruled out C.F. and instead discovered that Troy has Celiac Disease. Which is great news because it can be controlled with a strict diet. So again, life is changing... Troy is on a Gluten Free diet and in a few weeks he should have no more "bowel issues". HURRAY! There is a ton more to this but I am totally tired of typing.. and I'm sure you are sick of reading. :)
Oh- this is a genetic thing... and once Troy was diagnosed, I requested the blood test as well, yes- I have some "bowel issues" (which I am lactose intolerant so I always related it to that)I have always thought this was just a part of life.. well- my test came up positive as well. So Troy and I are on the special diet together. Sophia has never had bathroom issues so there is no need for her to be tested, but she and Tony are changing there eating habits when they are at home because for Troy and I it is not an option. It is important that I take care of myself, and Troy is growing, his brain is developing, all the more reason he needs to follow the diet so his body can use the vitamins and minerals in food. We are only on day 3 of this so it is still very much a learning experience but I'm so glad there is hope for no more tummy aches! And- Troy should start growing again!!! :) My little man! :) Oh baby- am I going to have some hilarious cooking stories for you in the coming days! ahaha!
Troy is doing great though. He is loving gymnastics class and karate. He is really into super heros, he loves Hulk, Ironman, and Spiderman... I think Troy lives his life to the Ironman theme song.
Yes- Tony is still around :) Good old man! His birthday is this month and if I had not spent wayyy to much time updating everyone on the kids I'd blog about Tony :) But, I'll have to save it for another day.

Sophia's Cheerleading Half Time Dance.

I figured this was appropriate to post after the video of Troy at karate :)



She's hard to spot... they all look the same. She is in the front row, next to Abby ,the tiny one, the girls are side by side and it's hard to see them because Coach Kelly kind of blocks them :) She's got purple Nikes and her hair is in a pony tail, if that helps :)

what's next?

Sophia has been doing excellent in her studies! She is so smart and so witty. We are having a lot of fun homeschooling and have decided that this "trial year" has gone so well we decided to continue again next year. This year was Sophia's Pre-K 4 year, she missed the cut off for Kindergarten by 7 days, but we have been doing a mix of Kindergarten and Preschool activities. I haven't wanted to hold her back, but I don't want her jumping to far ahead either, I didn't want her to be bored if we decided to put her into a Kindergarten class next year.
A few things led us to make the decision to continue homeschooling, a few of the things are major reasons and the others are just bonus reasons that make us feel very comfortable with our decision.
The most important reason we decided to homeschool is because the school system will not give the anti-seizure drug to her should she have a seizure while at school. You see we keep a medication called Diastat (Diazepam)that we give her when she has a seizure. This is a valium that stops the convulsing and allows for healthy oxygen flow to her brain. We only give this when she has a Grand Mal seizure that lasts more than 4 minutes, or if she has Grand Mal seizures one after another, cluster seizures. The goal is to stop the seizures so that her brain is not deprived of oxygen. This medication has always worked and we haven't had to give it to her in a while, but it is important that whoever is with her knows how to use it and has it available should it be required. Sounds simple enough right? Wrong... the school does not handle this drug because it is given rectally, just like a rectal thermometer or a suppository and they "don't want to be put in a position to have to give this drug." YES- I realize that I could argue this, but from what I have heard, if she was in school she would be put in a special needs class due to her medical needs, which is not necessary because until this point academically Sophia is right with other children her age and does not have learning disability.
There are other reasons that we feel comfortable with homeschooling and have already considered this as an option for our family.. this is what we are going with.
I love being with my children and I believe that no one will care of them, nurture them, and take the time to educate them based on their individual learning styles.
I feel confident with my degree and experience as an educator that this is a task I am qualified to do.
We have meet a lot of friends who homeschool and this year we established ourself with an awesome co-op that we love spending time with so I am not concerned with socialization as a major factor. The kids have lots of friends, they are both involved in sports, and we are apart of a great church community with plenty of rugrats!
I feel like this day in age parents have to be advocates for their children's innocence, with the influence of world views, standardized testing, and demanding schedules I take this role very seriously and my goal is to let our children be children.
I don't know how long we will homeschool for but at this time this is the best option for our family... and I am proud of my children and their enthusiasm about staying home with mommy and I'm excited to watch them enjoy learning.
That said, I do not take this decision lightly, I have a commitment to my children and to their education, I take this seriously and it is a heck of a lot of work! :) But there is nothing more rewarding than instilling them with a love of learning and a personalized, quality education. So here we go...

And Miss Sophia, she loves nothing more than to do her school work with her best pal in the world, Jazzy-Bell :)

strong one

My girl went through another bout of seizures Monday.
I'd say there were around three grand mal seizures, from 1pm till around 5ish. She was "out of it" for about 4 hours. It was very difficult to see her struggling. Her senses were so heightened I was holding her and rubbing her back and she cried saying I was punching her. Troy came in to check on her and asked if she was ok, he touched her leg and she screamed that he hit her. It was hard to see her acting so out of control. She would scream that she smelled gold and her tummy hurt. She had a headache. She had trouble walking, coordinating her movements. I had to stay right by her side because I didn't want her to hurt herself, by falling. She did trip, trying to get out of her bed when I was turning on a movie for Troy. If the lights were on she would grab her eyes and cry. This was how she acted between her seizures, when she wasn't sleeping. Her dog never left her side... Jazzy-Bell even came and got me once when Sophia was trying to get out of bed.

Troy said, "Sissy is sick, God knows Momma, He's trying to make her better" Oh- it gives me goosebumps to think about it. He was so brave and so patient during these few hours. Eventually she did sleep and I was able to take him outside to play in the backyard. He said, "I'm worried about Sophi, she's not sick, like sick, but she's sick." Sweet boy.
When she did finally get up, around 5:40, she didn't really remember any of what we had just been through. She said she knew she was not feeling good, but didn't remember anything else. I just told her "you had a rough day" and she agreed that she had a rough day.
I called the doctor and they decided to raise her daily medication from 75mg a day to 100mg per day. He said any hopes we had to wean her off of medication in September were going to be delayed. He said, "her brain is not well." I really like the new doctor he sounded disappointed that she had a day like that, it was nice to feel that he shared our disappointments but acknowledged our hope. He stressed the importance of allowing her brain down time (nap time) and keeping her on a sleep schedule. The doctor was very calming.
God gave us peace that day. It was a bummer but I think we have all accepted that this is part of her life. We pray for God to intervene and have faith that He can, but we also accept that this maybe His plan and He is in control.
Doesn't change the fact that it is very difficult to see her going through things like this... I am just soo glad that she doesn't remember how terrified and combative she was, it was a different part of her brain in control, very scary.
We are very blessed two days later she is sassy as ever,

laughing,

jumping on the trampoline,

and loving her brother.

Even Jazzy-Bell is resting easy, now that her girl is feeling better.

Thanks for your thoughts and prayers!! We are so blessed to be surrounded by people who love and support us.

HOMESCHOOL & RAINY DAY GAMES

My children are some outdoor loving fools! Today is a rainy day in the sunshine state. Lucky for me, Sophia had some schoolwork to keep her busy, we had to change our schedule because of co-op, so we are having "school time" on Monday, Thursday, and Friday mornings now. Troy participates somewhat during "school time".
He usually does the "welcome" part of school. During this time we sing songs about the days of the week, months of the year, remembering our address, and some quick alphabet/shape/number/color recognition games.
Then he is off to watch Spider-Man cartoons while Sophia and I do reading, math, and history or science.
Then Troy joins us again for art. (Today they could pick from a variety of art supplies and make a picture of their favorite thing to do.) Sophia used every medium offered and made a picture of herself playing with her dog, Jazzy-Bell. Troy used a white sheet of paper and a black marker, made a few scribbles and a long line. After they are done we sit on the couch and I let them take turns telling about their art. Sophia went into an elaborate story about how she loves playing with her dog, and how she is "the best dog in the whole wide world". And Troy stood up, held up his picture, and said, "I like poking spiders with sticks".
They had some computer time, navigating www.pbskids.org (which I love).
Then it was the "end of school" song and off they went to play in their rooms.
I wasted some time on the computer, my sister came over and we played on the Wii, then time to make lunch.
After lunch the kids normally go outside and they were pretty discouraged to see that rain falling from the sky. So I got out the animal flash cards and we played "zoo keeper". I hold up a card and they pretend to be that animal while I read facts about the animal they are pretending to be...
We talked about the anteaters very long spiny tongue that they use get down in the ant tunnels,to eat ants. (Sophia and Troy stuck out their tongues and crawled around on the living room floor.)
We talked about the giraffes being the tallest animal, the babies are 6 feet tall when they are born, we measured it out with a tape measure. We talked about how they have to spread their front legs wide just to put their heads down to eat the grass. (They crawled and made themselves appear as tall as possible).
Howler Monkeys... wonder what the neighbors thought we I read that the howler monkeys howl can be heard up to three miles away?
Fun Times!!!
Then of course- we had to play "momma bear" -I crawl around with them pretending to be their momma bear, we go from the cave (Troy's bed) to the meadow (the living room) and my baby bears are quite mischievous, seems I can't get away without playing that with them. They love it!
Well- it is nap time now. So I need to take advantage of this time, get a shower and great ready to take Troy to karate this evening. *More on that later, but he is pretty excited to be going to karate.

back from the doctor... (Neurology Appointment Today)

We just got back from Sophia's neurology appointment. Looks like we will not be weaning off of her medicines. I'm kind of relieved and sort of disappointed. I was hopeful that we could begin weaning and she wouldn't have to take medicines for a while, but I was also nervous that if we did wean her again it would open the doors for seizures to occur. She has been doing fabulous on her current medication so all in all I'm glad we get to stay the course.
I always wonder if the seizures will stop or continue once she is off medicines. I guess that is why they wean them every so often so see how they will respond. We did talk about her "diagnosis" which I was glad he was so willing talk about with me because the other neurologist kinda' beat around the bush and seemed reluctant to categorize Sophia. I just need a reason... give me something to call it so when people ask why she has seizures and why she walks on her tippy toes I don't have to say, "well, they think she has cerebral palsy" it just sounds so ignorant. Either you do or you don't right?
She does have cerebral palsy, which is why she has seizures, they are like secondary to the cerebral palsy. The new doctor seems like a tell it like it is kind of guy. He told us some things to be concerned with for the future and how he was impressed with her abilities given her history. He encouraged me that I was doing a good job, keeping her on a sleep schedule, healthy diet, and keeping her involved in activities like dance, cheerleading, and gymnastics, which all aid in coordination and muscle development. He did NOT refer us to a physical therapist but said to stay the course, keeping her involved in activities and continue to do exercises with her at home.
He said it was not necessary to do EEGs every three months because the results have been the same for the last 3 years and that was silly. No more MRIs every 6-9 months either, he said it was just putting her through added tests when the MRI results were the same since she was 2 1/2. I am relieved that we don't have to do any more unnecessary tests but the hope that they would reveal that everything was normal and everything is fine was kinda taken away.
It's always an awakening experience, every time I take her for these visits. I'm so glad Sophia is thriving, I just always pray for a miracle that we won't have to fight with insurance, worry about pills, seizures, and side-effects, I wish that seizures didn't exist, that cerebral palsy could be cured by magic juice!
I struggle with feeling sad and thankful.. I feel humbled and humiliated... we are so blessed so why do I feel sad? I feel spoiled and embarrassed... I have my daughter, she runs, jumps, talks and plays.. I shouldn't be sad about this- but the fear for what her future hold grips me sometimes. So- I'll be faithful and find strength in God's grace that He is in control and that He will provide for all of our needs.

Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you. Dueteronomy 31:6

I'm really not trying to be a downer or ungrateful.. just sharing my real feelings because isn't that why I write this? It's not always about our fun adventures, cute quotes, and adorable faces... this is real life and like our preacher said in a sermon a few weeks ago "Sometimes life stinks, but we can always find joy in knowing we have a faithful God who is always there when we need Him" Preach it Preacher! :)

Mission: Rescue Tracker

A few weeks ago my cousin and I met up for some Chick Fil A with the kids. Sophia and Troy loaded into the car with their handfuls of toys.
My children feel it is necessary to bring Barbies, action figures, Littlest Pet Shop babies, rocks, magnets, anything they can find on their way to the car. After multiple requests not to bring toys in the car, I have finally decided this is a battle I do not want to fight... so we have an understanding whatever they bring in the car they are responsible for. If it gets lost or broken it will not be replaced. Their toys are safe at home and if they get leave them in a store... oh well. Also, if they bring toys to a place where other children will be, they have to be prepared to share them.
On this trip Sophia brought her favorite beanie baby "Tracker". "Tracker" was one of the many beanie babies my sister and I acquired when we were little. My mom kept them all in a plastic bin and she has given some to Sophia, they are her favorite toys! "Tracker" went with Sophia to play in Chick Fil A, he joined us during lunch, and then he joined us on an errand to the post office, and when we went into JoAnn Fabrics. I warned Sophia that she should leave "Tracker" in the car... she didn't. And- the inevitable happened, "Tracker" got lost. We were loading back in the car and "Tracker" wasn't with us. I closed the door to the van and got in the driver seat, I knew this was going to happen...
Sophia was crying, I had to stick to my guns about this... I always warned them that they should they loose a toy it would NOT be replaced, I would not go searching for a lost toy...
"Sophia I am sorry but that is why I tell you not to bring your toys in the stores, I hope you have learned your lesson, but Mommy is not going to search through the store for your toy, we will call them later to see if someone turned him in."
She cried the whole way home. I felt that lump in my throat, I knew she loved "Tracker" because he belonged to me and my sister when we were young. Oh of all the things she could have lost! I called the store when we got home and they said it had not been found.
That night Tony and I went on a date. After dinner we decided we would go back to the fabric shop to see if we could rescue "Tracker"... we searched and searched... I am sure we were quite the sight, all dressed up, searching around the store, while I described to Tony which toy is was, "a small hound dog, sad eyes, brown and white spots, the TY paper tag has been ripped off, but it still has the red plastic in his ear..."
I asked a few employees if anyone had turned it in, they said no. Then just as we were giving up, one of the employees walked up, "Is this it?"
YES!!! She had found "Tracker"
We got home that night and we gave Sophia the missing pup, she was so excited! Mission Accomplished! "Tracker" is safe in Sophia's room... and he has stayed there ever since. :) Lesson learned, for now...
Isn't he the cutest?

Medical Update for Sophia

We are going Tuesday next week for our first "official" visit with the new neurologist. I say, official visit, because we did go to him for the meet and greet but we haven't been yet for an actual visit. I do know that he wants to refer her to a physical therapist for her tippy toe walking, I'm not sure what he will say as far as medication is concerned but she has been doing really well. We got the report from the other neurologist and the new doc is going to review everything and we will meet with him Tuesday.
Praying it goes well...
It always makes me nervous switching to a new doctor...

"There is something about the outside of a horse that is good for the inside of a man."