Not the life I chose.

As I sit here watching my girl seize I am brought to tears.

In spite of valium, clonazepam, ativan, clobazam, and phenobarb (some multiple doses) she still seizes.

This means Joe and I sleep in shifts and more than likely we won't be going to church in the morning.

I have a very close knit group of lifelong friends on facebook in my infantile spasms group and tonight I learned of a sweet girl at the end stages of her disease.

Yesterday, I heard of a sweet little boy that passed away, most likely, due to a seizure in his sleep.

Brave Liam is still in the hospital on bipap now. He has been on a ventilator for some time now. His last MRI shows atrophy in his brain stem.

These families have to make horribly painful decisions for their children.

I did not choose this life, nor do I want it. I would do anything to heal my daughter.

I don't want to have my family so fractured that I go a year without seeing the people you think would be there for you the most. I don't want Emily to go the rest of her life not knowing some of the closest family members.

I don't want to have so many people in and out of my house during the week. I don't want to know all the best medical supply companies.

I don't want to have to have a neurologist, cardiologist, opthamologist, and a nurse case manager.

I don't want a feeding pump on a pole next to my daughters crib.

I don't want to have to drive 2 hours to have Emily fit for a wheel chair.
I don't want to have to fight over a parking space in front of my apartment and I don't want the handicapped tag checked with the word permanent that comes with said spot.

I begged and pleaded for this cup to pass by. God wanted us to have all of this. I don't know why, I may never know.

What I do know is God is the same before all of this and He will be the same after.

I run my fingers through her fine, wispy hair and I know she is what I want.

I love her more than I ever thought possible.

Some days are harder than others. Today is hard. Today I am mad at the crazy parking space lady. I am mad at selfish family members who I will never be able to change. I am just mad.

I have that right.

So, for now I will cry and vent and cuddle with my seizing girl.

Tomorrow is a new day and it may be better.

I hope.

Just proud

I feel like a lot of the time when we talk about or describe our children we tell what they can't do or what is "wrong" with them.

The list can be very long and extensive.

We tell how much they can't do physically.

We tell the words they have not said or the toys they can't yet play with.

Right now I just want to share the awesome, amazing, she-makes-me-so-freaking-proud-to-be-her-mom things that Emily CAN do!

Emily can lay on her belly and lift her head up off the floor long enough to turn it from side to side.

When we are holding her she automatically puts her arm around you holding on.

She can now stretch her left leg (the one that was out of socket) completely straight on her own without pain!

She can activate several toys.

Today she squeezed a ball with both hands during OT.

She can say mom and addy (daddy).

When you say show me your teeth she says ahhhhhhh :)

She can get her fingers in her mouth.

She can hold her hands mid line!

Emily can roll to her side from her back.

She mimics you if you make a sound she will grunt back.

If you do something she likes and ask her if she wants to do it again she grunts.

If you are in the kitchen cooking or she hears the microwave she starts smacking her lips and says ummmm.

She is eating most of 3 meals by mouth.

She smiles all the time.

She is the happiest kid I have ever seen!

She makes me want to be a better mom.

To some people her accoplishments may not be big but to me they are huge!

I am just so proud.

Happy 2nd Birthday Ava!

Emily and Ava have been friends since Ava was born. :)

Just 3 months apart, we were so excited for them to grow up together.

Ava's mom, Angie, and I have been the best of friends since we were 14. 

I am thankful Angie is raising her children to know that Emily is different but it's ok to be different.

They know that Emily, or ma-lee as Ava calls her, gets her water and food through a tube in her belly.

Angie's son Jakob saw someone in public with a feeding pump and explained when the other kids asked what that was.

Ava knows that Emily plays differently than her, and that is ok with Ava.

Ava accepts Emily for who she is, she knows no different.

Emily adores Ava and loves the attention Ava gives her.

 Ava.

I hope that one day you will read this and know how much we love you.

I hope you will learn how much it means to me that you are Emily's friend.

She will need you when she gets older and people are not kind.

She will learn from you and you will learn from her.

I am thankful that God chooses people to be in our lives and I am glad he chose you to be Emily's friend.

You are a feisty, opinionated little spit fire and I pray that you never change.

You know what you want and you know how to get it :)

Use that when you are older to change the world!

Happy 2nd Birthday Ava!!

Love you!

Erica, Joe and Emily

sucess!

Well friends, I did it! I successfully went out of town, stayed the night, enjoyed myself, and came home to what I left.

~~~sigh~~~

I was so very nervous, more than I am afraid to admit.

I have never left Emily overnight. Tried once last year, it ended in failure and a trip to the er.

I can not tell how much this trip to Women of Faith helped my soul.

I missed Emily but I did not worry (Much ;))

She was well, happy and I had lots of pictures texted to me.

She did great and slept ok(ish) and ate most of her food.

All the things I worry about.

To be able to have a girls weekend, enjoy fellowship with 33 members from our church and 10,000 women in one arena was amazing!

Our group!

Michelle, Angie, and myself.

Jordan, refused to conform and wear pink.

My best-friend. Angie, it's a good picture!

At one point they had us all hold hands. In the row in front of us were a mother and daughter, Sha and Vicki. I just love this picture!

Worshipping.

I was so excited to hear Angie Smith speak. She has a blog and has written a book about loosing her daughter. She just started on the women of faith tour this year.

She is a fantastic speaker and so real! She had us laughing and then the next second crying.

I had already read her first book about the lose of her daughter and I bought her 2nd book while we were there.

It is about fear.

How appropriate, huh?

As a mother to a little girl with lots going on, I fear a lot.

What happens to her when I am gone?

What if we loose her 2nd insurance?

What if Joe lost his job?

What if we lost Joe, how will I provide for her?

What if I get hurt and can't take care of her?

What if I have to put her in a home one day?

What is she is a statistic and does not make it though childhood?

How would I live without her?

This list really is overwhelming but sadly I think about these things often.

Telling myself to trust in the Lord, He will provide, does not comfort me as people say it should.

Praying does not take those fears away either and telling me they are irrational will just make me angry at you.

They are mine and they are all real!

I have to learn a healthy way to control them.

So I was pretty pumped when I got to meet Angie Smith!

AHHH, I know right. I wanted to scream too but I totally had to play it cool.

I wanted to say many things but I am afraid it all came out in one word.

Ohmygoshyouaresuchablessingthankyousomuchforbeingsohonestandopen...breath.

She just smiles and asked a few questions about Emily.

I know she is just a person but i got to meet her!!

ok I am over it now ;)

I came home to a happy girl ready to eat her spaghetti!

Bathtime followed!

We even had a shirt made for Emily.

Sunday, Joe let me sleep for a few hours in the other room. Emily was up for a while and he knew how tired I was.

I went to get them up for church and this is what I found.

Yes, I crawled in bed and snuggled!

I love them!



Missing her

My grandma Jean has been gone for 4 years today.

I miss her as much today as I did 4 years ago, probably more.

I was rarely without her.

Growing up she was my partner in crime, my best friend, my secret keeper.

Heck, I even slept in her bed until I was 6 or 7!



my birthday. Grandma and my sister Amy.





Grandma and her 3rd husband Oscar.



She was stylish and refused to wear "old people clothes"!

She had an obsession with perfume and lotion. Hand lotion, self tanner lotion, foot lotion. It was a sickness :) haha!

She hated the thought that she would ever stink! 

She was hilarious and most definitely not politically correct!



My 16th birthday. Grandma and my brother Tyler.

She loved me so. She would tease and say with a wink that I was her favorite ;)

She loved Joe and was so proud of me for marrying such a wonderful man.

She wanted to see my children and was heartbroken with me as we struggled with infertility.

I was so thankful to have a long conversation with her right before she passed.

She told me she would always be with me and that she loved me more that she could explain.

I promised her that if I ever had a girl I would name her Emily Jean. Her favorite girls name was Emily.

I talk to her pictures often and think about how different life would be if she were still here.

So different.

She was our glue.

We all needed her to keep us together.

God, knows how I miss her.

Until then....





Happy Father's Day

Father's Day is very bitter sweet for me.

I love it because I get to celebrate the wonderful father that Joe is. Emily is lucky to have such a devoted and loving daddy.

It is hard because my biological father has not really even been in my life. I think I was 11 or 12 the last time I saw him (which was in the court house).

My step-dad, Mark, came into our lives when I was just 7. He really is the only father I have ever known.

Sadly, I lost him 3 years ago next month.

I often wonder how things would be now if Mark was still alive.

If you really knew Mark you know he could be loud, rough, and he cussed constantly! BUT, he was always there for us! Every time me and my sister moved he helped, every time our car broke down he would help us fix it.

He was literally cleaning his shot gun when my first date picked me up!

He was protective of us!

He NEVER turned his back on us.

More than anything he loved us!

I wish he could have met Emily.

He will one day though.

So, today I will focus on the wonderful father Joe is.

I think a lot of times special needs father's don't get enough credit. They are expected to be strong all the time. Most of the work outside of the house.

They miss out on a lot of things because they are working 50-60 hour work weeks to make ends meet. If you did not know raising a child is very expensive when you add tons of medicine, therapy visits, multiple specialists, equipment and specialty toys if can get VERY expensive.

Joe works hard for us.

On the weekends Emily knows that is her daddy time.

Her face lights up when he talks, I am pretty sure she thinks he hung the moon.

Thank you, Joe, for doing all that you do for me and Emily.

Thank you for loving us just where we are.

We love you so much!!

Happy Father's Day!



Nerves

My nerves are kicking in.

Maybe it is the surgery tomorrow.

Maybe it is the 3 months in a body cast.

I am trying to stay calm but...

We had a great day today. We went to church and she was so loud (happy talking) we had to take her downstairs to be watched

After that we went to the zoo.

Emily really enjoyed herself! She was awake and alert the entire time! I am so proud of her!

After the zoo we all stopped and got ice cream and Emily ate some of my orange sherbet cone. She loves ice cream!

We are just trying really hard to enjoy today. I know she will not enjoy the next three months very much but we will do the best we can.

She got an early b-day gift from her g-ma and g-pa Rollins.

She will be spending a lot of time here after her surgery. She will be very limited in the seating options with such a big cast. Good thing she is little :)

I was telling Emily the other night about her surgery and was telling her not to be scared. That we know it will hurt and it won't be any fun but we are only doing this to make her better and to help make the rest of her life better.

Joe overheard me talking and said "I wonder if Jesus says that about us?"

Emily is not going to understand why her mommy and daddy put in this horrible hot and itchy cast for 3 months. She is not going to understand why she can't have a bath or be cuddled tight.

She is not going to understand that what we are doing IS for the best.

I think that is how we are sometimes. The painful things we go through could be for the best. When we are in pain and hurting from our problems in life we can't see why it is for the best. We can't see past the pain to know that it is making our future with Him better.

I do not know why Emily has to go through what she does.

I don't.

 Epilepsy is way more than enough, then to add this painful surgery and even more painful recovery on top just seems too much.

We just have to trust that it is what is best for us and our family.

Well friends, I just ask if you will pray for my little princess.

Pray for the surgeon and the OR team. Give them the wisdom they need to take the best care of Emily. Pray for Joe and I during the 3 month recovery. It will be trying on our patience I am sure.

Most of all pray for Emily.

Thank you friends!!

another first

I had this grand vision of the first time Emily got to swing on the swings. It know to most it sounds like a silly vision. To me it was a big deal because Emily is very limited physically. She is about a 3-6 month age range developmentally.

She got a huggabebe for Christmas and it is just perfect for her in one of the bucket swings.

Joe and I had this planned and Emily was in a great mood!

We found a local park and to my excitement no one was at the swings. Emily tends to shut down it there is too much noise and by shut down I mean fall asleep.

We get everything ready, put her in her huggabebe, stick her in the swing, and then instantly this......

She HATED it!!! Every single second.

We will try again sometime in the fall. She will be in a cast for 3 month next week so maybe after some time she will enjoy it :), we'll see.

My girl would just rather I hold her and snuggle at the park then swing. That is ok. She is only little for a while.

We are just so proud of her. She is doing new stuff everyday! Just yesterday she held her arms up when I unbuckled her car seat (she knew she wanted me to pick her up!!)

She is holding her trunk better and better everyday.

When we hold her she does not just lay her head down on our shoulders, she holds her own head up when she is not tired.

I could go on and on about the inch stones she is making.

Emily may not have many milestones, some days they will be inchstones, centimeterstones, or even millimeterstones but heck they are something!!

I just love her so and I am so thankful I get to watch her grow up, no matter how far she may get.

Still abnormal BUT........

Emily had her 1st post ACTH eeg. It was sleep deprived so that we could catch her falling asleep and then waking up.



Slap happy from keeping her up until midnight!



Love this smile!

She did great! She was not a happy camper when I woke her up at 4am (neither was I).

They hooked her up to the eeg and we wait. I am horrible about staring at the eeg reading the whole time. I can't read them but I can sort of tell the really bad stuff (I did not see that).

Normally you wait a week to get results but her fabulous neuro just happened to be there and he looked at it for us and said....

It is still abnormal (slow background and some spikes) but no seizures and even bigger NO HYPSARRYTHMIA!!!!!!!

This is huge!!!

Emily, at her worst, had over 200 seizures and hundreds of spasms in one day. Completely uncontrolled.

While I still long for her to have a totally normal eeg one day, I will take this!!!

Thank you Jesus!!!!

I promised pics last time so here are a few to hold you over. :)



Emily and her new cousin Sammy.





I had to tell Emily that she could not eat her baby cousin!





You can tell how much shorter her left leg is. It is up and out of socket :(





She is saying "Thanks Kathy for my new chair!" ha she does really well in it. I need to get a newer picture, her head control has already improved so much!! Thanks so much Kathy!!!





Loving on grandma!

She has become very attentive when you talk to her and she smiles at everything!

Emily loves the sound of a clicking pen and loves going from dark to light.

I love that she loves things, no matter how small.

 

We have so much to be thankful for and thankful we are!

 

Our God is the same in the good and bad and we praise Him the same!!!!

Get your purple ready!

Saturday is Purple Day!

This is from the website..Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website you can see many ways you can help.

If you chose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure epilepsy.com is a great site.

There is SO much information out there!

This is last years purple day picture, my goodness how things have changed!

Emily has 12 more days of ACTH shots left. She is doing very well with the wean. We are seeing a little bit of her personality each day. She is still not sleeping well but that is not new :). She woke up yesterday at 4:30am but she was so happy and smiley. I have missed those smiles so much!

My cousin got Emily this shirt from the facebook page polkadot whimsy, isn't it cute!

It has been almost 6 weeks since Emily's last spasm, I can hardly believe it. I get scared saying that, afraid that "they" will return. We don't know if or when they will ever return but we cannot live our lives in fear of "ifs and "whens" so we are celebrating Emily.

She is an amazing little girl and I am lucky to be her mom.

To you, my sisters

To You, My Sisters

By Maureen K. Higgins



Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.



I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."



Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.



We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.



All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.



We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.



We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.



We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.



We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.



We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.



We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.



We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.



We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.



But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.



But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

She's with me



update on ACTH

Emily is on day 8 of her ACTH injections.

She just had 3 whole days of no spasms, only seizures, and then this evening she had a couple single, weak spasms.

It was a heart wrenching feeling.

We are pumping our little girl full of steroids that make her cry, swell, elevate her blood pressure and blood sugar and make her have an insatiable appetite.

She screams for hours on end. It is hard to not be able to help her.

She is just starting to swell a little and her blood pressure is just starting to climb, we are watching it very closely.

Her very loose muscles are getting increasingly tighter, we stretch her daily to combat this.

All of these things are what we are doing in a desperate attempt to stop her infantile spasms.

Infantile spasms are that bad.

Emily is having seizures but only when she is falling asleep or waking up and they are pretty manageable.

I am praying so hard that all of this is worth it.

It is hard on Joe and myself also. We are stressed and tired. Our only nurse has been off all week because of a back injury and like I said before we have no one else that knows how to take care of Emily so it is just us.

Joe had a death in the family and had to travel out of town for the night so it was just me and Emily. I was never so glad to see Joe come home.

I am trying so hard to pray and be faithful to God and trust that His will is best for us. I am not going to lie, it is hard. I know that God loves us and He loves Emily more than we do. I know that. Some days I just don't feel that.
Some days I feel so incredibly alone.
Isolated.
Scared.
A sweet friend sent me a psalm she has been reading a lot lately and I have read it and reread it. Psalm 27.
Also 2 Corinthians 4:16-18 has helped.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.


This life is temporary.

I can not wait until the day comes when I can meet Emily in heaven and she will walk up to me and hug me and tell me she loves me.
One day she will be healthy and without seizures.
One day we WILL defeat epilepsy. It will not control us forever.

Until then we will fight.

Why we fight

Yesterday I told you about my online support system.

Today I will show you why we fight.

This video was created by Karen. You can check out Karen's blog about her beautiful daughter, Charli. Charli also has infantile spasms and has had a hemispherectomy(half her brain removed) to stop her seizures. Thank you so much Karen!

These kids are strong. So much stronger than we are.

Everyone of these kids have been effected by infantile spasms or epilepsy.

They are my heroes!



Make an on-line slide show at www.OneTrueMedia.com

my online support

“In the End, we will remember not the words of our enemies, but the silence of our friends.” Dr. Martin Luther King, JR.

That quote it so true and if you ask any parent or caregiver of a child or adult with disabilities they really understand.

Living with someone or caring for someone with chronic illness, disabilities, or special needs can be very isolating.

People don't know what to say so they don't.

Joe and I personally have experienced this. We have had family that won't call for months on end and when they do it is short and uncomfortable. We have lost friends and became very distant with others.

It is the nature of the beast.

I cannot tell you how valuable my epilepsy/infantile spasms support groups have been. In the beginning I was quite hesitant to join and talk. It is odd telling complete strangers personal things. Now they are family. We have a common bond that you can only understand if you have a child that suffers as ours do.

While most of us have never met in person we hurt for each other and rejoice with each and every tiny miracle that happens. When one of our kids is sick or having a bad day you can bet someone in the group knows and before long we all know and can pray and send well wishes asap.

My support group understands my fears and does not judge because they too have the same fears and understanding of how fragile our children's lives are.

My life has become consumed with seizures. All day everyday. Emily has them every. single. day.

I don't say that on my blog or update my fb status to say "Emily has had another seizure" but she does. We have had really good days but she cycles, she is currently on the bad part with lots of seizures.

If you or someone you know needs a group to join you can start out looking on yahoo groups, that is what I did. From there I found other parents on facebook and one of them started a private facebook group.

Some posted on facebook a list of what not to say and what to say to parents of special needs kids. I don't agree with all of it. Most people just don't know what to say. This is the what TO say list. You can go here and read the whole page it you would like.

- I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!

- I don’t know what to say to you, but I love you.

- How are you doing? (and actually listen to the answer)

- Quote from Elaine Hall: “How Can I Help?”

- Just wanted you to know I was thinking about you.

- I just made an extra dinner when I was cooking for us, can I drop it by now?

- I know you had an appointment yesterday, how did it go?

- Want to drop your kids off with us for an hour or so? (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)

- I’m on my way to the store, want me to grab you some milk or bread?

- Need any help at bedtime with the kids?

- I’m coming over to watch the kids right now for an hour so you can take a nap.

- We’re on our way to take care of the yard work.

- Sounds like you’re doing a great job.

- Here’s some things that worked for us. (preferably from people who “get it.”)

Mine and Joe's own that we would like to add is- Can I come over and learn how to help take care of Emily.

We would love to have someone be able to help us out every now and then. Besides Courtney, our nurse though the agency, we do not have one single person that can take care of Emily by themselves.

We need a break sometimes and we need to make sure that we take time to take care of our marriage.

The divorce rate among families with a child with special needs is 80-90%! I know that the divorce rate among "normal" couples is about 50% but add a child with lots going on and you are about guaranteed a divorce.

It is incredibly important to work on your marriage. I am so thankful to have such an amazing husband. I honestly know I would never in a million years be able to do this day in day out with out Joe. We fight and we are not perfect by any means but we all are Emily has. She needs us to take are of her. We need each other as well.

Will you please pray for my online support group. They have helped me more than they will ever know. We have a few kiddos right now that are pretty sick and having lots of seizures.

I love you my epilepsy family! As Keely put it-"your my glue!"

Christmas, vacation, surgery and teething oh my!!

Lots and lots of updates. I will be brief though.

I need to do several post to explain everything but I thought tonight I will catch everyone up.

Christmas was nice. Quite and calm. Just like we like it.

We had an impromptu mini vacation for New Years. The three of us went to Joe's dad and step-moms (Lonnie and Brenda) house Thur-Mon. It went so well. It was a 4 1/2 hour drive and Emily did fantastic! We all felt so relaxed the entire time we were there. It was so nice to have extra hands around to help with Emily. Of course Emily loved having her grandma and grandpa to love on her too!

I am proud of us for doing it. We only forgot one thing too HER KETO SCALE!! No worries though, I made enough meals to last a few days and then we bought another from Walmart.

It is hard to travel with Emily and we can't do it often but this trip was so worth it!

As long as she had her little puppy ,Violet, she was fine. :)

We had an appointment with ortho. Emily's left hip is out of socket and most likely has been for a while.

They will surgically fix it on Feb 14th. After the surgery she will be in a spica cast for 3 month and then bracing for a while after that.

This is what the cast will look like. She will be in the bilateral long leg hip spica.



She is off of topamax now!! Yay!!! Only on phenobarb and the ketogentic diet. This is the best seizure control she has ever had!

She is having a few-20 seizures per day BUT they are all very very short and only when she is falling asleep, waking up or after a very hard cluster of spasms. If we can get her all the way asleep or wake her up she stops.

She is incredibly alert and really looks for people. You can just see it in her eyes how much better she feels!

She is cutting her 4th tooth. Two on bottom and now two on top. This 4th one has caused her more pain though. Lots of tylenol and oragel and snuggles.

I will update more soon with lots and lots of pics!

Hope everyone has had a great New Years!!!

sweet overload

"True friendship is seen through the heart, not through the eyes."



My best friend, Angie, had a little girl, Ava, 3 months after I had Emily. Angie and I were so happy to find out that we would be having little girls so close in age. I saw them going to kindergarten, prom, and graduation together. They still may do those things just in a different way. I still have all of those dreams for Emily they are just different now.

I am so thankful to have Angie, I honestly don't know what I would do without her. She can finish my sentences and tell what I am saying just with a look.

I am also very thankful that Emily will grow up with Ava. I know her and Emily are very different but I am just so excited to see what they will be able to teach each other.

Emily will teach tolerance, kindness and acceptance. She will watch Ava doing things she can't yet and I pray that she will learn from her.

Everyone needs that friend who can finish your sentence or just squeeze your neck :)

Ava was so sweet with Emily. She held her and kept hugging her neck and kissing her cheek.

They are growing up so fast!

1st Anniversary

Our appointment was for 6:30 pm. We arrived a little early. Our names were called. We laid our healthy 6 month old little girl on the exam table, the pediatrician walked in-that ladies and gentlemen is when our world crashed to a screeching halt.

One year ago today Emily was diagnosed with infantile spasms.

Our pediatrician was young, newly graduated. As soon as he saw Emily he new immediately what was going on with her.

He walked out of the room, called an ambulance and came back with the nurses to help.

They all looked at us with sad, tear filled eyes. They new the diagnosis. They new the long, hard, painful road we were just thrusted upon.

I did not understand....yet.

We sat in the ER for what seemed like forever.

We had so many different doctors come look at Emily. They all wanted to see "what she did".

They all had the same sadness in their eyes.

Before the night was over we saw over 15 different med students, residents, and attending physicians.

We were overwhelmed.

The next day our neurologist sat down and began to explain the diagnosis. I almost laughed! Infantile spasms, ha! That does not sound bad, but why does he look so sad?

After he left, I must admit, I was mad. I did not know who to be mad at so I was mad at him. The man who diagnosed my little girl with such a horrible thing.

I could not even bare to look at this man when he came back in. I needed a face to this diagnosis and he got it. I blamed him!

I quickly realized that was just my way a dealing with such pain.

Today, I could not be more thankful for Emily's neurologist.

I know he wants Emily to have the best life that we can possible give her. He has been patient with me and understanding especially in the beginning when we rushed Emily into the ER every time something new came up. He knew that we were scared. Every time we called the on-call doctor at 3am we were really scared and he would calmly say "bring her in I will be there in the morning". He could have been upset and frustrated with us and gotten sick and tired of me calling all of the time.

Instead he gave me his cell phone number.

Thank you Dr. F.

This past year I have learned a lot.

No one will ever understand what we go through on daily basis unless they actually do go through this on a daily basis.

I am much stronger that I ever gave myself credit for.

Some days I am not strong at all. I just get by and that is OK.

Some people are not strong enough to handle the person I have become. That is OK, too.

I need and love my husband more than I ever thought I could.

It is OK to admit when I need help. It has been very humbling.

Help does not always come from the places you expected it.

Support groups have been very helpful. They get it.

Isolation and loneliness are terrifying.

Crying helps.

Emily's smile make my day.

Emily's milestones may be few and far between but that just gives me longer to enjoy each one.

I get mad and yell and scream why to God. He is big enough to handle it. He also forgives me.

As much as I love Emily God loves her more. I can't fathom that.

I do not understand why Emily suffers, why we suffer. I probably never will.

God is the same God that he was before Emily was diagnosed. He has not changed, we have.

Joe and Emily complete me.

Emily is perfect.