We have moved

I am doing most of my updates about Emily on a facebook page for her. It is much easier to keep up with. I can text pictures and info in without having to log onto a computer.

https://www.facebook.com/pages/For-the-love-of-Emily/365099180170471

Click the link above and then click like on the page to receive updates to your facebook news feed.

been a while

I did not abandon my blog.

Just needed a break.

Losing your home, moving into a temporary apartment, then moving into a rental house will do that to you.

 I guess I have not really told anyone and since my blog is private I can share with you all.

Sadly, we lost our home. When I had to quit work to take care of Emily we just could not afford it. We tried and tried but could not do it.

I was hard, heartbreaking and very humbling.

Our home was not huge, luxurious, or lavish but it was ours. It was the first home Joe and I bought. We brought Emily home to this house. We had a lot of dreams but alas...

We are in a rental home right not and we like it. There is plenty of room and we have a small backyard. It's older but has "character" :)

The blue stove makes me smile.

Anyway...



Hot tubing it at Grandma and Grandpa Rollins' house.



Things have been good-ish. I say ish because with the good comes the bad.

Emily got her stander! yay! She is doing well, we bribe her with food but it works! Eventually she won't even realize she hates it ;)

She is cutting more molars (when will this end?) and that brings out the seizure monster. Nothing we can't treat at home but still sucks.

She is weight bearing through her legs so much more and has the desire to stand! She is taking more steps when you hold her up. She loves to walk! Its the cutest little prance you ever saw!

Love!

An angel named, Charlie, bought Emily a tumbleform chair and tray. We have one borrowed from first steps(EI) but will have to return the chair when she turns 3. He found out and bought her one. I can't explain the blessing it is! We are so thankful to have it and the tray! Now she can use her iPad better.

This is her old chair, the new one is purple but this is her tray! She loves it!

We are just enjoying Emily. She is doing so much and growing up so fast!

I will post more pics soon! Got some good pics with Santa :)

what's new

I have quite a bit to catch up on.

Emily has had her 3 month post cast check up. That went great! You would never know she was in a body cast for 3 months 3 months ago! Her left hip socket is still very shallow and the ball is much smaller than the right. It's to be expected. We are in the process of getting her a stander. Praying that insurance will cover it.

You can see where the purple arrow is pointing how her left hip socket is a bow not curved in like the right socket. You can also see how small her ball is compaired to her right. When the hip is out of socket the ball does not grown.

In therory, if we can get her in a stander it will help push her femur and ball into her socket and help form her pelvix correctly.

She had a MRI of her brain and also had good news, no new atrophy. Which means her brain has no shrunk any more! Yay!

She had to be sedated with the MRI so we went ahead and had them do the ABR which is a sedated hearing test.

She had tubes in her ears and electrodes taped to her forehead and behind her ears. The result of this was great too! She even said the word NORMAL! I made her reapeat herself! :)

Emily has really been enjoying her iPad. She loves the fireworks app and anything with animal sounds. Her favorite is a kitty. Joe keep teasing that we need to get her a cat because she responds so well to it.

The new medicine, clobazam, is still helping. She has days with more spasms and seizures but her recovery time is so much better. The rescue drugs are working faster, when we need to use them.

The side effects are also minimal.

We went to Riley Children's Hospital to get Emily fit for a wheelchair, stander and car seat. They gave us a new car seat then. It was through the foundation and it is very nice and big! The car seat she was in was getting too short to keep her rear facing much longer. With Emily lack of head control we need to keep her rear facing as long as possible!

Now onto the fun stuff!

Emily loved the swings this time around!

My cute kitty cat!

She got lots of candy!

Me, Emily, Ava, and Angie at Halloween.

Just a reminder, my blog will not show up in your blog feed or on google reader.

Privacy

I have made this blog private for the time being.

It is not going to be permanently private.

The reason I started this blog was to connect with other parents going through what we are.

I have learned more from reading about other people's journeys.

I have met some wonderful friends as well.

Our family is going through some things right now that requires privacy. We promise to be transparent as soon as we can.

Please pray for us though.

What we are getting ready to go through is going to be tough and we will need all the prayers we can get.

I plan on updating about Emily very soon. She has been doing lots of things lately that I need to get in the blog for my own memory as well.

Thanks for sticking with us!!

laughter is the best medicine

The other night Emily was laughing at the noises Joe was making.
She was laughing so hard she could hardly catch her breath!

Love her laugh!

New med update

What a difference a week makes.

This time last week was bad. Non stop seizures, tons of meds, no sleep for me kinda bad.

This past week has been much better, thankfully!

On Monday we upped her clobazam to 5mg in the morning and night. Adding that night dose has made such an improvement with her seizures.

Before clobazam she was having a bad day, recovery day, good day and then start over. All week. A horrible cycle.

This past week she has had one bad day and it was not "that" bad.

She seems more alert and interactive. It really makes me wonder if she wasn't having more seizures that we did not see that was keeping her in a fog.

Little things like making a face at her gets a smile out of her (That means she is seeing more) I was bouncing her in the bed and she was giggling(used to she would crack a smile at best) Her appetite is tremendous! We are watching her calories close to she dose not gain too much weight.

She is also much more vocal! The funny sound she is making melts my heart. :)

She is also developing some new reflexes. Her OT is pretty excited about these. I need to do more research on them to understand better but from what she said it's a good thing!

Oh, and she did this too ;)

Joe was not holding her he was just on stand by in case she tipped over. She held 4 point for about 15 seconds. This is BIG! We have been working on her arm strength for a while and I think it's starting to show!

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.