Tuesday, December 20, 2011

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 :)

Tuesday, November 15, 2011

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.

Thursday, November 10, 2011

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!!

Sunday, October 23, 2011

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!

Saturday, October 22, 2011

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!




Saturday, October 15, 2011

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.


Sunday, October 9, 2011

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.


Thursday, September 22, 2011

Kind of a big deal!



Emily literally just began to bear weight on her legs this past week.
We do lots of practicing with it.

So tonight I stood her up and tada....she took a few steps towards me!!!!!
I yelled for Joe to grab the camera and we did it again.

She is so amazing!!!!



Friday, September 16, 2011

She rocks my socks!

Tonight she decided to show off ;)







Emily sat up against the couch for about 30 seconds at a time but started thinking it was funny to fall over.

She is so silly!

Wednesday, September 14, 2011

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.

Friday, September 9, 2011

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

Thursday, September 1, 2011

Play date

Emily had a little play date with her friend, Ava, today.
Ava loves Emily!
She squeals when she sees her and wants to touch and hug Emily.
It's so sweet!


I love this picture of them! They look so much like Angie and myself!

Laying on the floor, Ava was holding her hand.


Emily love kisses on her forehead. It's a guaranteed smile!


Ava will be 2 next week! I can't believe how fast these girls are growing up!


This afternoon has not been a great one.
Emily is cutting 7, yes that is seven, teeth! We seem to have the pain under control but for whatever reason it is really increasing her seizures! Today I saw some very strong and much longer than normal ones.

After multiple doses of 3 different meds things seem to have calmed down.
Praying the night goes good. It always gets worse at night.

I just wish there was something I could do to help her while she is teething. :(

Monday, August 22, 2011

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!








Thursday, August 18, 2011

Women of Faith Round 2/dr appts

I am leaving in the morning for the Women of Faith conference in Indianapolis. I am so excited and very much looking forward to this weekend.
Most moms can agree with me that you are never really "off". Even in my sleep I am "on". I hear beeps from monitors or feeding pumps. I wake up if she is breathing different. I can hear her paci drop.

It's not a break from Emily that I am needing, I am actually dreading the fact that this will be the first night I have spent away from her.
I need a recharge so that I can be a better mom and a better wife.

Emily is in great hands. Our wonderful nurse, Kathy, will have her Friday until Joe gets off work and then daddy gets to spend the weekend with her. Good thing for her she likes to watch football!

Please pray that it goes well, we have safe travels, and that Emily stays healthy. If anyone remembers what happened last year click here to read.

Emily had a great neuro appt. He is pleased with her progress. I still can't believe the things she is doing!
I finally got some pictures of her and her neuro, Dr. Farber. Don't worry he gave me permission to post these. ;)

We had a time getting a smile out of her.

Finally, a grin!


It really is nice to have a doctor who listens to you and really cares about your child.
We are very thankful to have Dr. Farber in our lives. Wish it were a different reason though.

Emily also had a swallow study done. She is a picky eater. We tried to warn them but they have to add contrast in the liquid and food so that they can see the food going down under the x-ray. They gave her some pink liquid  and she gagged and chocked (new that was going to happen) it was overly sweet and she does not care for overly sweet anything! She aspirated on that which means the liquid went into her airway. They tried a baby food but she would not eat it-told you picky! I did bring one of her favorite jarred food, macaroni and beef. I know, yuck, but she LOVES it! She ate that great and did not aspirate on it.
We tried her regular pediasure and she aspirated on it too.
SO, no liquids at all by mouth for now. Any baby food is allowed and we will repeat the study in 3 months.
Sucks, but not the end of the world. We have work to do. Hopefully as her muscles strengthen so will her swallow.

Love this face!

Tuesday, August 9, 2011

Creative therapy

I bought a small child's stool at Target for $2.50.


Covered it with a thick blanket and tada, a cheap therapy tool!


It serves multiple use. Makes Emily hold her own head up, in turn will strengthen her neck and head control



It makes her bear weight through her arms and knees and engages those joints so that hopefully she will learn to use those joints appropriately one day.

She wants to keep her fists closed so I have to keep opening them and showing her that she can keep her hands open while do this.


Yay, open hands!


She really enjoyed this! When I took her off she fussed so I let her do it again for a little bit, such a go getter :)

Working hard and dr appt


Emily's left leg is still very tight and sore but we are stretching it more and more each day.
She is working really hard!

She is still getting lots of pool time in her water way babies pool. She knows when she wants to swim and if you don't get her in the pool asap she will let you know!

Emily finally had her 2 year check up. We had to wait until the cast was off for it.

She hates the paper on the table!


She cringes and wiggles and fusses.



So I put her back in her chair :)

She looks so big in this picture.


She is small. 20.11lbs and 30 in long. She will probably always be little.

They were pleased with the progress she has been making and commented on how alert she was.
3 hours later we had blood drawn, urine checked (they made her mad so she peed on the wall and the nurses ha!) a swallow study scheduled, a referral to a seating clinic at Riley Children's hospital to get fitting for a stander and a plan to help get some weight back on her.

She lost several pounds while in the cast and is not tolerating the over night feeds right now. 4am puke is never fun to clean up.


I am so thankful to have a pediatrician who really listens and a case manager who really does all the work ;). It is so important you and your child's doctor see eye to eye on their care.