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.

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

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. :(

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!



2nd birthday party (Lots of pics!)

Emily's 2nd birthday party went great! I was nervous because she was sleeping at the beginning and she slept through her entire 1st birthday party. She woke up just in time and had a great time! She was happy and smiling the whole time!



Sleeping beauty before the party began



I made over 75 cupcakes for her party. I was trying to save money this year and it was a success! I even made my own icing! My best friend, Angie, came over and helped me decorate all of them! It was a lot of fun to do!

I love this picture of Sha, the children's minister at my church, praying because if you look all the way to the left of the picture just under the cross you will see Micheal praying. I just love the innocence of a child praying and Micheal has prayed for Emily many times before :) such a sweet boy.

This is Emily's cousin, Sam, "kissing" (more like rooting) Emily's forehead. Emily was still snoozing and we leaned him over and it just look precious!

Emily with her grandma and grandpa Johnson.

 Family pic minus Cayla, again. Dang, we gotta get this girl in some pics soon! Come back from Florida Cayla! We miss you aunt sissy!!

Singing "Happy Birthday". Looks like she is singing too! 

Yummy!

happy girl!

Love my family!

My sister, Amy, and our babes. Love this pic of Emily! She looks very mischievous!

The woman behind all the beautiful photos!

This is Rebecca, she is an amazing photographer. She also took our last family pictures. You can click on her name and check out her blog, which is fantastic too! You can also go here to see Rebecca's photography facebook page.



Thank you so much Rebecca! I love having such great pictures to look back on.

Also, thanks to everyone who helped with the party and came and celebrated with us! We are so thankful for each one of you!!

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.

James

The past two posts I have talked about my online support and their kids.

This is one of them.

James.

Isn't he handsome?

James, much like Emily, has infantile spasms. He has had a rough start at life but he is a fighter!

He has an awesome mommy and daddy too!

His mommy, Stacy, is very crafty and has begun a small business.

She made this memory blanket out of James' clothes. It is beautiful and has so many memories sewn in!

She is also making hooded towels. What kid doesn't love a hooded towel? They are big too!

Summer is coming soon and wouldn't these be great for the pool or even in the kids Easter baskets!

Here is all her info. You can click on the picture to enlarge it.

You can also follow James' on facebook at Fan of James