Thursday, January 27, 2011

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


Monday, January 24, 2011

Why we fight

Yesterday I told you about my online support system.
Today I will show you why we fight.

This video was created by Karen. You can check out Karen's blog about her beautiful daughter, Charli. Charli also has infantile spasms and has had a hemispherectomy(half her brain removed) to stop her seizures. Thank you so much Karen!
These kids are strong. So much stronger than we are.

Everyone of these kids have been effected by infantile spasms or epilepsy.
They are my heroes!






Sunday, January 23, 2011

my online support

“In the End, we will remember not the words of our enemies, but the silence of our friends.” Dr. Martin Luther King, JR.


That quote it so true and if you ask any parent or caregiver of a child or adult with disabilities they really understand.

Living with someone or caring for someone with chronic illness, disabilities, or special needs can be very isolating.

People don't know what to say so they don't.

Joe and I personally have experienced this. We have had family that won't call for months on end and when they do it is short and uncomfortable. We have lost friends and became very distant with others.
It is the nature of the beast.

I cannot tell you how valuable my epilepsy/infantile spasms support groups have been. In the beginning I was quite hesitant to join and talk. It is odd telling complete strangers personal things. Now they are family. We have a common bond that you can only understand if you have a child that suffers as ours do.
While most of us have never met in person we hurt for each other and rejoice with each and every tiny miracle that happens. When one of our kids is sick or having a bad day you can bet someone in the group knows and before long we all know and can pray and send well wishes asap.
My support group understands my fears and does not judge because they too have the same fears and understanding of how fragile our children's lives are.

My life has become consumed with seizures. All day everyday. Emily has them every. single. day.
I don't say that on my blog or update my fb status to say "Emily has had another seizure" but she does. We have had really good days but she cycles, she is currently on the bad part with lots of seizures.

If you or someone you know needs a group to join you can start out looking on yahoo groups, that is what I did. From there I found other parents on facebook and one of them started a private facebook group.


Some posted on facebook a list of what not to say and what to say to parents of special needs kids. I don't agree with all of it. Most people just don't know what to say. This is the what TO say list. You can go here and read the whole page it you would like.


- I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!

- I don’t know what to say to you, but I love you.


- How are you doing? (and actually listen to the answer)


- Quote from Elaine Hall: “How Can I Help?”


- Just wanted you to know I was thinking about you.

- I just made an extra dinner when I was cooking for us, can I drop it by now?

- I know you had an appointment yesterday, how did it go?

- Want to drop your kids off with us for an hour or so? (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)

- I’m on my way to the store, want me to grab you some milk or bread?

- Need any help at bedtime with the kids?

- I’m coming over to watch the kids right now for an hour so you can take a nap.

- We’re on our way to take care of the yard work.

- Sounds like you’re doing a great job.

- Here’s some things that worked for us. (preferably from people who “get it.”)


Mine and Joe's own that we would like to add is- Can I come over and learn how to help take care of Emily.
We would love to have someone be able to help us out every now and then. Besides Courtney, our nurse though the agency, we do not have one single person that can take care of Emily by themselves.
We need a break sometimes and we need to make sure that we take time to take care of our marriage.

The divorce rate among families with a child with special needs is 80-90%! I know that the divorce rate among "normal" couples is about 50% but add a child with lots going on and you are about guaranteed a divorce.

It is incredibly important to work on your marriage. I am so thankful to have such an amazing husband. I honestly know I would never in a million years be able to do this day in day out with out Joe. We fight and we are not perfect by any means but we all are Emily has. She needs us to take are of her. We need each other as well.

Will you please pray for my online support group. They have helped me more than they will ever know. We have a few kiddos right now that are pretty sick and having lots of seizures.

I love you my epilepsy family! As Keely put it-"your my glue!"

Saturday, January 15, 2011

Whats new?

When I started this blog I did it so that I could document Emily's life.
I am not great about keeping up her baby book, plus there is just not a baby book out there that would work for us.
I have decided that I will print my blog out (eventually) so I can keep all of these memories. So some blog posts you might be boring to you. :)

I just wanted to update what Emily is doing lately.

Emily is 19 months old now! I can't believe she will be 2 this June.
She is 21lbs and 29 1/2 inches.
She has 4 teeth. 2 top, 2 bottom

She loves her puppy Violet.

Talking to Violet

She will talk to it and laugh at it! It is programed to say her name and favorite things. She loves the bedtime music the most.

Emily loves anything with music! We keep musical toys all around the house to distract her when she gets crabby.
She likes watching tv now too. Most recently it is the Little Mermaid and she just watched Aladdin the other day and liked it too.


She is tolerating therapy much better.
We have seen quite a bit of improvement the past month. Most recently she is setting for about 30 seconds unassisted.
This is the best she has done! The boppy is behind her to catch her is she fell but she put her hands down herself and lifted her head up!
We are so proud!

We started Speech therapy 3 weeks ago. The therapist is amazing! I have learned so much from her already and Emily has already shown improvement with eating since she started.
Speaking of eating....Emily is eating, yes I said eating, 2-3 of 5 meals per day by mouth!! This is HUGE!!!
Prior to the diagnosis of IS Emily was breastfed and ate homemade baby food great. We did not have any problems at all.


Big bite!

After we weaned the ACTH and started seizures drugs on her she slowly stopped eating. That is when the g-tube was placed.
The ST taught us how to get the spoon in her mouth without Emily gagging or pushing it out with her tongue. Emily has discovered that she LOVES to eat again! I am so thankful we have found something new that she likes.
We have even seen some hungry signs lately too. You could never tell she was hungry but once she started eating we are seeing signs again!


Emily's seizures are pretty stable. By stable I mean she is having them daily but they are not clustering out of control often. I think once the past 2 weeks or so she had a seizure cluster that required extra meds to stop. They only time she is having seizures is falling asleep or waking up and if we can get to all the way asleep or fully awake she stops.
 The big issue we are having now is her spasms. She has hundreds of spasms daily. Spasms are seizures too. Most of the time they are bad but at least once per day she has a really hard cluster and the really hard ones lead to other seizures so we have to get rescue meds in her fast to stop the seizures from starting after the spasms have stopped.
It could be a lot worse but it could be A LOT better. We also realize this can all change in a moments notice.

She has been very alert since we weaned her topamax. She watches us when we talk to her and looks for us if we call her name.

We are preparing as much as we can for her upcoming hip surgery. I will update that later.

I am so thankful for good days. I cherish good days.

Thursday, January 13, 2011

New years/vacation in Ohio

As I said in my previous post we had an impromptu mini vacation for New Years.
Joe found out that he had off Friday and Monday so that made it a 4 day weekend. We left on Thur afternoon. It was a 4 1/2 hour drive and Emily did so good!

If you have a child with multiple needs you know that leaving your comfort zone is very difficult. We had to pack a lot of things to make sure Emily would be comfortable. We have a mini van and took the back row out and it was FULL.

That little stinker slept pretty good too. At home we have such a hard time getting her to stay asleep but at her grandparents she was such an angel. She did not cry one time! She is not an extremely fussy girl anymore BUT she defiantly has her moments---except at grandma and grandpa's house!!

She got her very first(prob her last too haha) sink bath in the very same sink that her grandma b did!


One night she was so happy and talking up a storm! She was making the most funny sounds and facial expressions too! 
Tell Charlie about her puppy, Violet.

Talking to Charlie on the phone.




You listening grandma??

Cheering on the cards! Even though they lost, she loves watching sports!!

Holding grandpa's arm while she sleeps. 




The best part was meeting ,Ava, Emily's newest cousin!






Lego liked her chair too!

We had such a great time and can't wait to go back!!

Tuesday, January 4, 2011

Christmas, vacation, surgery and teething oh my!!

Lots and lots of updates. I will be brief though.
I need to do several post to explain everything but I thought tonight I will catch everyone up.

Christmas was nice. Quite and calm. Just like we like it.

We had an impromptu mini vacation for New Years. The three of us went to Joe's dad and step-moms (Lonnie and Brenda) house Thur-Mon. It went so well. It was a 4 1/2 hour drive and Emily did fantastic! We all felt so relaxed the entire time we were there. It was so nice to have extra hands around to help with Emily. Of course Emily loved having her grandma and grandpa to love on her too!
I am proud of us for doing it. We only forgot one thing too HER KETO SCALE!! No worries though, I made enough meals to last a few days and then we bought another from Walmart.
It is hard to travel with Emily and we can't do it often but this trip was so worth it!

As long as she had her little puppy ,Violet, she was fine. :)


We had an appointment with ortho. Emily's left hip is out of socket and most likely has been for a while.
They will surgically fix it on Feb 14th. After the surgery she will be in a spica cast for 3 month and then bracing for a while after that.
This is what the cast will look like. She will be in the bilateral long leg hip spica.



She is off of topamax now!! Yay!!! Only on phenobarb and the ketogentic diet. This is the best seizure control she has ever had!
She is having a few-20 seizures per day BUT they are all very very short and only when she is falling asleep, waking up or after a very hard cluster of spasms. If we can get her all the way asleep or wake her up she stops.
She is incredibly alert and really looks for people. You can just see it in her eyes how much better she feels!
She is cutting her 4th tooth. Two on bottom and now two on top. This 4th one has caused her more pain though. Lots of tylenol and oragel and snuggles.

I will update more soon with lots and lots of pics!

Hope everyone has had a great New Years!!!