She's with me



another ACTH update

Emily is on day 17 of ACTH injections.

This time around is much different.

The first time she was on ACTH Emily swelled quite a bit pretty quickly and had no increase in her blood pressure or blood sugar.

This time she has not had much swelling and her blood pressure is higher.We have had to decrease her dosage once because of her blood pressure. She is also SO fussy. She can scream for hours on end. We have found a few things that help-a warm bath and eating. We do lots of baths and eating around here!

Here are a couple hospital pics.

Her first non-keto meal, mashed potatoes!! Her favorite now.

Totally wore out! (notice we go no where without her weighted cat and her puppy violet)

She has definitely regressed in all areas. She does not make eye contact and is not looking at things or the tv any longer. Smiles are very few and far between. She is just overall grumpy. We are praying that all of this will come back pretty quick!

A rare grin! Food on her face because eating makes her happy!

It has been a huge change coming off the ketogenic diet. She was on it for 11 months. The first time I gave her liquid Tylenol I freaked out. She has not had liquid medicine for such a long time.

I am so very thankful that we tried the ketogenic diet and if needed (I pray she does not) we will go back on it.

Just to make things a tad bit more complicated, Emily has had a bad uti again (on antibiotics) and it teething.



So I guess I should get to what everyone is wondering.

Is it working?!?!?!?!

Well today has been the 8th day with no spasms!!!

Days 1-5 she continued to have clusters of spasms and then a couple days with none and then 2 days with just a few single spasms and none since.

As far a seizures go we are not seeing an actual seizure the past few days. There have been a couple of "movements" we are questioning but nothing noteworthy.

We keep a daily journal on Emily. It has been a lifesaver! It has every medicine she has ever taken in the front and daily we write down her meds, food, vitals, diapers, and seizures/spasms (or lack thereof!)

Joe suggested we do this in the hospital when Emily was first diagnosed and we have not missed one day since. We can go back and see trends of what meds worked better than other and when she had appts an tests. It has made our life so much easier.

Keep praying friends! I can not begin to tell you how amazing it feels to watch your daughter fall asleep and not have a seizure or wake up and not have a spasm. I watched a video the other night of Emily having a spasm and it hurt to watch.

I have had so many sweet comments and messages and I am so thankful for every one of you! Emily is lucky to have so many people praying for her.

update on ACTH

Emily is on day 8 of her ACTH injections.

She just had 3 whole days of no spasms, only seizures, and then this evening she had a couple single, weak spasms.

It was a heart wrenching feeling.

We are pumping our little girl full of steroids that make her cry, swell, elevate her blood pressure and blood sugar and make her have an insatiable appetite.

She screams for hours on end. It is hard to not be able to help her.

She is just starting to swell a little and her blood pressure is just starting to climb, we are watching it very closely.

Her very loose muscles are getting increasingly tighter, we stretch her daily to combat this.

All of these things are what we are doing in a desperate attempt to stop her infantile spasms.

Infantile spasms are that bad.

Emily is having seizures but only when she is falling asleep or waking up and they are pretty manageable.

I am praying so hard that all of this is worth it.

It is hard on Joe and myself also. We are stressed and tired. Our only nurse has been off all week because of a back injury and like I said before we have no one else that knows how to take care of Emily so it is just us.

Joe had a death in the family and had to travel out of town for the night so it was just me and Emily. I was never so glad to see Joe come home.

I am trying so hard to pray and be faithful to God and trust that His will is best for us. I am not going to lie, it is hard. I know that God loves us and He loves Emily more than we do. I know that. Some days I just don't feel that.
Some days I feel so incredibly alone.
Isolated.
Scared.
A sweet friend sent me a psalm she has been reading a lot lately and I have read it and reread it. Psalm 27.
Also 2 Corinthians 4:16-18 has helped.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.


This life is temporary.

I can not wait until the day comes when I can meet Emily in heaven and she will walk up to me and hug me and tell me she loves me.
One day she will be healthy and without seizures.
One day we WILL defeat epilepsy. It will not control us forever.

Until then we will fight.

Prayer

We are preparing for the hospital tomorrow. Emily will be admitted for a day or two and have an overnight video eeg so see whats going on with her seizures and to start ACTH again.

Emily is weaned off the ketogenic diet now because we have decided to do another round of ACTH.

If you remember it was the very first medicine we tried when she was diagnosed with IS.

This is what it did.

She got very swollen, stopped smiling and well stopped pretty much everything else.

We are very aware of the risks but we also are VERY aware of the risks of uncontrolled spasms and seizures.

We have postponed her surgery until the swelling has gone down, so probably some time this summer is when she will have it.

So I ask you tonight to please pray. Pray that we can get our miracle. Pray that we can control these horrible, life altering, life ending seizures.

We are desperate for a cure.



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



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!



Make an on-line slide show at www.OneTrueMedia.com

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!"