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.

what's recent

Sigh...

With the good comes the bad, it seems.

Emily's seizures have gotten out of hand again.

We went from just a hand full of seizure per week to 60-80 on one day, resulting in multiple doses of emergency meds and multiple calls to her neuro.

All day seizures for Emily equals no sleep. Most kids sleep a lot after seizures but not Emily.

Just last night she only slept maybe 4-5 hours and none of that was in a row.

She just had a sleep deprived eeg to see whats going on. When we do a sleep deprived eeg Emily can sleep from 11pm until 4am. I have to wake her up and keep her awake (fun)

We did a really good job, both of us were ready for a nap when we got home.

Her eeg showed an increase in seizure activity compared to the last eeg. There are some other changes too and she is already scheduled for a brain MRI to see whats new.

She did just pop another tooth through but she is still having daily seizures so that rules that out.

She also had another UTI when her seizures picked up, we treated that and did a recheck and her urine is clean now, so that rules that out as well.

While we are on the subject of UTI...

Emily has had several and while we do the very best we can to prevent them, (keep her well hydrated, clean, probiotics ect...) she keeps getting them.

Kids like Emily with low muscle tone can have bladder reflux where the urine goes back up into your kidneys and causes infections.

Our pediatrician suggested we do a kidney ultra sound to check for damage. If anything showed anything we would do a more invasive test.

Thankfully it was normal.



She was such a good girl during testing!

So here we are. Back to the drawing board.

We are waiting on new medicine from Canada called clobazam.

It is not FDA approved in the US, yet.

I just want to take a minute and say how thankful I am for Emily's neuro.

He makes himself available to us all the time. We have his cell phone but for after hours I don't want to bother him :) The on call neuro called him and within minutes I had a call from him wanting to know why we did not just call his cell phone to begin with.

It makes me thankful to know that someone cares for my daughter so much. He does not have to do that.

Please pray that this new medicine will help Emily.

I hate trying a new medicine, especially with all the recent development she has had.



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....





hard day

I wish this were a happy, fluffy, everything is great post-it is not.

14 weeks spasm free came to a screeching halt this morning.

The first arm flailing, heart sinking jerk was obvious and very painful to watch.

We are heartbroken and devastated. We knew it could come back but were praying it would not.

So far she has had two clusters.

She does not have many other options left.

We will keep fighting but tonight we are weak and hurt.

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.

Prayer

We are preparing for the hospital tomorrow. Emily will be admitted for a day or two and have an overnight video eeg so see whats going on with her seizures and to start ACTH again.

Emily is weaned off the ketogenic diet now because we have decided to do another round of ACTH.

If you remember it was the very first medicine we tried when she was diagnosed with IS.

This is what it did.

She got very swollen, stopped smiling and well stopped pretty much everything else.

We are very aware of the risks but we also are VERY aware of the risks of uncontrolled spasms and seizures.

We have postponed her surgery until the swelling has gone down, so probably some time this summer is when she will have it.

So I ask you tonight to please pray. Pray that we can get our miracle. Pray that we can control these horrible, life altering, life ending seizures.

We are desperate for a cure.



off

I don't really want to blog right now but I am making myself.

Things have not been good lately.

Emily's seizures have picked up in spite of everything we are doing.

She has what we think are seizure-free days once or twice every week to two weeks but I am not sure that they are really seizure free.

The past few days have gotten really bad.  She is having so many seizures and we are giving her a lot of meds to TRY and slow them down but they are not working well anymore.

She is weaker than she has ever been and has not been herself in a few days.

She is twitchy and very seizurey looking.

We took her to the ped yesterday just to check labs and urine to make sure it's not something simple like an infection or off labs we are dealing with but they were normal.

I really don't want to go the hospital (especially during cold and flu season) we have oxygen and and a monitor at home and we have been using it lately. She has only needed oxygen once but we are thankful we had it.

We are taking her in to see the neuro the beginning of next week and hopefully we can figure something out.

I want my happy smiling baby back.

lot of bad, little bit of good

Since my last post Emily has had some pretty bad days.

Her seizures just went nuts.  We made it through that rough patch with only one phone call to neurology, no hospital visits this time. We did get very close one night though.

I have had a very hard time ,emotionally, lately. I can handle having a child with disabilities, special needs, developmentally delayed-whatever you like to call it. I can not handle that fact that I have a child with very serious medical needs. It is hard knowing that her life if so fragile. Every attempt to stop or even slow seizures have failed and we all know that 100-200 seizures per day plus her 10+ clusters of spasms she still has daily is not good for her.

I have mentioned before besides our nurse who works 4 days/week we have no one that can help us take care of Emily. There is not one single person who can care for her if something, God forbid, happens to Joe or myself. I know that sounds morbid but that is something we have to think about. Don't get me wrong, we have a couple family members and some church members that have and continue to help us out financially and bring us delicious meals or bring over groceries. We are incredibly thankful for all of the assistance we get! We love getting cards in the mail or phone calls to check on us. Those things we truly appreciate!

Some days, especially bad seizure days, it is hard to deal with all of our daily responsibilities on top of everything with Emily. Dishes don't do themselves and the laundry just does not jump into the washer just because we are having a bad day. Life must go on.

So now that we are done with the bad stuff and complaining.... on to the good!

Emily has not had a seizure since Thursday at 2am. When she has seizure free days she does so much better with holding her head up and assisted setting.

She had her 15 month check up (it was actually 16 months though) and her head, height and weight at all way under normal but proportionate. The only thing we are watching right now is her hips. Emily legs tend to fall to the right when she is laying flat and she is going to be prone to dislocation so we have to try to keep her hips rotated to the left more.

Trying really hard to set up



Giving her PT the "get off off me" look.





Holding her head up so much better





Emily loves her sensory cat!! It has 3lbs of rice in it to help with her sensory issues.



Thank you Colin for the wonderful gift!!



She loves it!

Praying that this seizure-free streak will continue!!



grandma

Today is my grandma Jeans birthday. She passed away in July of 2007, she was 81.

I was very close to my grandma. For years my mom, sister and myself lived with her. I even slept with her in the same bed. She loved to tell me the story that when we did not live with her and I was just old enough to stand I would scream and cry out the window when she left until she would come back and get me to stay the night with her.

I was defiantly grandma's girl.

 Grandma knew she was dying. She had cancer and did not want treatment. She was ready to go.

The last time I saw her was just a couple days before she passed. She was in the hospital and my aunt Shirley was arranging for hospice to bring her out to her home.

I came into her hospital room to visit not knowing that was going to be the last time I saw her.

She knew otherwise.

Some how we managed to have a few minutes alone. She held my hand and with tears that I had never seen before she told me how proud of me she was and how much she loved me and that she was so thankful that I had Joe and she knew one day I would be a great mom.

I remembered a conversation we had not too long before then about baby names and she said she loved the name Emily. I promised her if I ever had a girl that is what I would name her. She told me she was not scared and that she knew where she was going and that she could not wait to see Jesus .

Our conversation was not long but I can still remember every word. I remember how her skin felt and that the room smelled like her perfume. I have so many wonderful memories of her.

She loved (borderline obsession) lotion, perfumes, candles and self tanner. She collected sandals, purses and coats. No matter how many she had she always needed more. She never wanted to dress like an "old lady" and always acted much younger than she was.

Her death was really hard on me because she always said she just wanted to see my kids. I had a really hard time conceiving so that is one thing she did not get to see.

I miss her so much and not a day goes by that I don't wish she was here. Things would be so different.

Happy birthday grandama!!

You can shed tears that she is gone,

Or you can smile because she has lived.

You can close your eyes and pray that she’ll come back,

Or you can open your eyes and see all she’s left behind.

Your heart can be empty because you can’t see her,

Or you can be full of the love you’ve shared.

You can turn your back on tomorrow and live only for yesterday,

Or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone,

Or you can cherish her memory and let it live on.

You can cry and close your mind,

Be empty and turn your back on the world.

Or you can do what she would want-smile,

open your eyes, love and go on

( I found this on someone's blog -don't know who wrote it)