late Easter post

We had a great Easter. Emily spent time with both sets of grandparents (Rollins and Johnson)

This year was much better than last-no seizures to fight!!

What a difference a year makes!!



Emily with her loot!




Holding onto her all purple basket her g-ma and g-pa Rollins got her

 

Emily and her aunt Cayla




I can't believe how little she was last year! This year she kept trying to knock the eggs off the tray!




She is loving Easter this year!





Still abnormal BUT........

Emily had her 1st post ACTH eeg. It was sleep deprived so that we could catch her falling asleep and then waking up.



Slap happy from keeping her up until midnight!



Love this smile!

She did great! She was not a happy camper when I woke her up at 4am (neither was I).

They hooked her up to the eeg and we wait. I am horrible about staring at the eeg reading the whole time. I can't read them but I can sort of tell the really bad stuff (I did not see that).

Normally you wait a week to get results but her fabulous neuro just happened to be there and he looked at it for us and said....

It is still abnormal (slow background and some spikes) but no seizures and even bigger NO HYPSARRYTHMIA!!!!!!!

This is huge!!!

Emily, at her worst, had over 200 seizures and hundreds of spasms in one day. Completely uncontrolled.

While I still long for her to have a totally normal eeg one day, I will take this!!!

Thank you Jesus!!!!

I promised pics last time so here are a few to hold you over. :)



Emily and her new cousin Sammy.





I had to tell Emily that she could not eat her baby cousin!





You can tell how much shorter her left leg is. It is up and out of socket :(





She is saying "Thanks Kathy for my new chair!" ha she does really well in it. I need to get a newer picture, her head control has already improved so much!! Thanks so much Kathy!!!





Loving on grandma!

She has become very attentive when you talk to her and she smiles at everything!

Emily loves the sound of a clicking pen and loves going from dark to light.

I love that she loves things, no matter how small.

 

We have so much to be thankful for and thankful we are!

 

Our God is the same in the good and bad and we praise Him the same!!!!

good times

Things are still going really well with Emily. It has been almost 10 weeks since her last seizure and spasm.

The side effects of ACTH are slowly going away and we are seeing a very happy little girl.

She is very aware of her surroundings and is doing new stuff everyday. She is lifting her arms up and even touching her face and mouth a little. Her head control is getting stronger and she even tries to correct herself sometimes when she falls over.

I have tons of pictures I need to put on here too.

Emily is having her hip surgery in a couple weeks so please pray with us about that. It will be very a long and painful 6 weeks for Emily. I am praying it goes by quickly.

We have so much to be thankful for right now. We are blessed to have these past 10 weeks, I am praying so hard this continues!!

I know so many kids that are fighting this battle with epilepsy and can't get any relief and it breaks my heart. I just wish we had a cure.

good bye ACTH

That is it! All done!

Emily had her last shot of ACTH yesterday (Tue)

24 hours without it has already made a difference. We have seen more smiles and more of her personality.

Emily started ACTH on Feb 4th and has been spasm free since day 8 of the shots. Almost 8 weeks with no seizure or spasms has been fantastic!!

She is sleeping 8-9 hours at night! Not always straight but when she does wake up usually a diaper change and repositioning does the trick. She takes melatonin and a little valium, we finally found the magic combination.

She is happier all around. The past month or so she began grunting when you did anything to her that she did not want to do, which was pretty much everything. The grunting went down a lot just in one day.

Her eating has not changed either. Many kids go on a food strike when coming off ACTH but Emily's appetite has not changed thankfully because she is only in the 5th percentile of her height and weight. We need to beef this girl up! She looks like a chunky girl but she really isn't.

I am just so thankful she is such a good eater. She is still eating 100% by mouth. Only meds and water in her g-tube. We try giving her water by mouth after each meal but she does not like it and tends to choke. We are working on it though.

We have so much to be thankful for. I know that in a heartbeat all of this can change. I am aware how vicious and mean epilepsy is. I am also aware how strong my little girl is and we are celebrating each day!!

We are praying this continues.

Get your purple ready!

Saturday is Purple Day!

This is from the website..Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website you can see many ways you can help.

If you chose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure epilepsy.com is a great site.

There is SO much information out there!

This is last years purple day picture, my goodness how things have changed!

Emily has 12 more days of ACTH shots left. She is doing very well with the wean. We are seeing a little bit of her personality each day. She is still not sleeping well but that is not new :). She woke up yesterday at 4:30am but she was so happy and smiley. I have missed those smiles so much!

My cousin got Emily this shirt from the facebook page polkadot whimsy, isn't it cute!

It has been almost 6 weeks since Emily's last spasm, I can hardly believe it. I get scared saying that, afraid that "they" will return. We don't know if or when they will ever return but we cannot live our lives in fear of "ifs and "whens" so we are celebrating Emily.

She is an amazing little girl and I am lucky to be her mom.

Marry me...again?

7 years ago I married my best friend.

From the moment I met you I told everyone that I was going to marry you. They thought I was joking.

They told me "don't do it", "you don't know him well enough", "it is just lust", "it won't last".

There has NEVER been a doubt in my mind that you were the one.

It's the little things you do that show me how much you love me.

Leaving me notes around the house, letting me sleep in on the weekends, and the way you love Emily.

You love me at my worst and help me to be my best.

 

I would not want to go though what we do with anyone else.

We do not have a typical marriage, our live is not typical. We have to fight for things most couples don't. We take nothing for granted and are thankful for every minute we have.

Joe, I would marry you over and over again.

I love you!

beginning to wean

We have begun to wean ACTH. We are holding our breath, praying and crossing our fingers.

It will be a slow process, about a month.

Since being on ACTH Emily has definitely regressed in most areas. She does not open her eyes all the way, her cvi has really gotten worse,she stopped smiling and being happy in general, she does not tolerate ANYTHING, and her sleeping is still crappy.

The only things that got better are eating and seizure control. We still have not seen any seizures or spasms.

She has been doing a lot of grunting lately. We took her to the pediatrician just to make sure it is not something respiratory and it was not. They said it was seizures-HOWEVER- I can stop what she is doing and the rule of thumb is if you can stop the movement it is most likely NOT a seizure. I called her neuro and he agrees and we have an appointment on Tuesday. ACTH has so many side effect the grunting is probably just one of them. At least I am praying so.

We did see a smile two days ago! It was just one but she has had at least one per day since we began weaning.

Loving this little grin!

Please keep praying that the ACTH is working and will continue to work!