Saturday, December 18, 2010

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!

Friday, December 17, 2010

stuff and more good things

I love stuff.
 By stuff I mean things people use for therapy, positioning, seating, toys etc etc....

Insurance pays for a very selected amount of "stuff" each year and most of that you have to fight for. If you chose to buy said "stuff" out of pocket and it is labeled for therapy, special needs, or medical it will be incredibly expensive!
So we try to find things that can be turned into therapy use.

Right now Emily's vision is taking off so we are trying to stimulate her in different ways. It seems that she loves lights a lot so after some thinking what we can do.......
Turn your baby activity gym into a light show!

She even grabbed the lights!

Here is a couple of pics from yesterday when she was holding her head up. She did this for 3 minutes straight!!!!!!!

I am so proud of my little girl!!

What kind of "stuff" do you use to make therapy creative?

Thursday, December 16, 2010

good stuff

Hard to see but Emily is pushing up through her arms and holding her head up!!

Tuesday, December 14, 2010

18 month check up

Emily had her 18 month check up today.
She is almost 21 lbs now! Her head, height and weight are all small, on the charts though and proportionate.

We were very frustrated this time because we had to wait 1 1/2 hours for a scheduled well baby check up. She is not getting vaccines right now so all the doctor needed to do is check most orifices-all were clear. I don't think she even looked at Joe or myself once. She never once asked how Emily was doing or if she was doing anything new since her 12 month check up. She never asked if Joe and I were doing ok or if we needed anything.

She was rude and angry that her nurse was not there to write her prescriptions and notes.
The reason we have stayed as long as we have is because of the awesome nurse case manager. Thankfully we don't see the pediatrician often.

It just makes me so sad to see a doctor who is doing their job because she has to do it, not because she loves to do it. You know a doctor who does it because he loves to do it when you see one.

Emily has had much better head control lately. She still has far to come but her PT thinks we may have her setting up within the next 6 months! I can't wait to see my baby setting!!!
She has two teeth on the bottom and one on top is getting ready to break through.
We know that teething is a seizure trigger for her and because we keep a daily journal on all of her seizure activity we can see trends.


The good thing is 3 months ago when Emily would have bad days she would have over 200+ seizures on top of her spasms. The past month or so during her bad days she is only having 20-30 seizures! That is a huge improvement! The only change we have made is wean her topamax.
Every time we decrease a med we see improvement. She gets her last dose of topamax on New Years Eve. We will be bringing in the new year one less med!!!

She loves the computer!
Another good thing is we finally got speech therapy approved and found a ST in our area to take her case! I am told she is the best and is very hard to get.
We have dropped her occupational therapist for now. The therapist told us that we over-medicate Emily and that every blink of the eye we see seizures (prob because we do!!) we spoil Emily, the list goes on and on. This was a fight I did not have the energy to fight and in our little country town there are not any other OTs right now. So she is getting PT twice per week, Speech once per week, and vision once per month.
Really into something!
Oh I almost forgot! I don't want to say this very loud but she has been sleeping 6-7 hours at night! Normal people sleeping time!! WOO HOO!!

Friday, December 3, 2010

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.