laughter is the best medicine

The other night Emily was laughing at the noises Joe was making.
She was laughing so hard she could hardly catch her breath!

Love her laugh!

More great things!

Emily's OT left this toy for Emily to play with this week. We decided to try it out after dinner last night, so excuse the messy face. When you have a good thing going you do not stop to clean up ;).

She gets so proud of herself when she pushes the flowers.

By the way, I am not moving the flowers to her hands, she is doing it all by her self.

The next video is awesome because you can see she opens her hand all the way before pushing the flower.

This is another big deal! I am so stinking proud of my girl!



Good Stuff

This is a big deal people!

Emily drank about 10cc from a sippy cup today!!!

We found a cup she will drink from!

You can go here if you want to check out the cup.



So proud of her!

My Montage 5/13/11 at OneTrueMedia.com

Emily is starting to use her hands more!

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

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

seeing is believing

Emily had her first session with her vision therapist yesterday.  We have enrolled Emily into VIPS  (visually impaired preschool) from Louisville. Two of the sweetest ladies came out and they were so good with Emily. She really liked them too. They will come and see Emily at home once a month and then we can go to the school every Wednesday for a mommy and me type class, plus she will be able to socialize with other kids and I will get to meet some other parents going through similar things.

Emily's friend Colin goes there so we will see them too. If you have not gone lately go check out Colin's blog, he is doing some great things!

They brought her a bag of goodies that she just loved!

One of which was a gold shimmery pom pom. I was speaking with one lady and the other was playing with Emily in the floor. I looked over and Emily was holding the pom pom BY HERSELF!

She held it for several minutes too. Emily has never held a toy!

She was looking at their faces a lot too. It is amazing what happens when you don't have seizures for two days.

Yes, she is still doing great with her seizures. It has been almost 48 hours since her last one. She is still having spasms though.

I could not be more proud of her.

Here is a little video of her holding the pom pom.

 This is from the other night after her bath we cuddled on my bed and she fell asleep, she looked so sweet.

Things may not be good everyday but on the good days I will celebrate!

The past week

After my last blog post we had to take Emily to the hospital. It ended up being a short stay, just overnight. She ended up having over 100 seizures within that 24 hour time. We tried everything we could to stay home because the more she is in the hospital the more germs we expose her to.

We got some more of the testing back from Cleveland and all it showed was a vitamin D deficiency. More normal genetics. We just had another genetic test sent out and that will take several weeks.

We are currently trying to stitch her from the ketogenic formula to ketogenic meals. We are changing it slowly so her body can adjust to actual food. So she is getting one of her five meals in food and she is eating about half of that by mouth. She really does not like the meat baby food ( i don't blame her) so we are looking into different protein sources.

She is still having many seizures a day. I think it may be her teeth, she wants to bite and chew on anything that gets close to her face. We are giving her oragel swab and Tylenol pretty often and it helps a little bit.

So that is pretty much it. She still is not sleeping at night. We did get our nurse back (yay!)

Here is a video (if it works) turn up the volume, Emily is laughing in her sleep. Whenever she hears me talk she starts laughing again. It is the cutest laugh!!

haha Daddy! I took your chair!

Happy Father's Day!

Emily has an amazing father. I know I am biased but he really is a great dad!

Being a parent of a child that has special needs it hard. Much harder than I ever thought it would be.

Emily does not show her love like "typical" kids do. She may not crawl, roll over or play with toys but we know she loves her daddy!

When he comes home from work everyday she hears the kitchen door open and she turns her head in that direction knowing her daddy will be walking in soon.

As soon as he says one word her face lights up and soon to follow is usually a big ole grin!

Thank you Joe for being the daddy that God has chosen you to be.

I love this song! You may not be chasing monster from under her bed but you sure do chase a "monster" from her!!

I love you daddy -pretty pretty!

more swimming

We have been pretty busy the past few days.

Emily is feeling much better. No more fever so the party is on!!!!

Yesterday we put her in her pool again and she did so great!!

I have never seen her move so much. I have a couple pics and a short video of her.

Can't wait for her party tomorrow at 3pm. If you need directions let me know.

Happy Mother's Day

Happy Mother's Day!

This mother's day is the first time I am truly excited about.

Many of you know I struggled with infertility for years. After one miscarriage, tons of medicine, shots, procedures, and countless negative pregnancy tests here I am.

This is the first time I saw Emily. I had to be put under general anesthesia for my c-section because the epidural only took on half of my body. I was very sick here too. I could not believe she was mine.

I am so thankful for Emily. She made me what I had always wanted, a mom.

This is an amazing song!

Mother's Day is not a happy day for everyone though. I know many people who still struggle with infertility and loss and I know how it feels. I pray for peace for all of those who are still struggling. One day we will rejoice in meeting our angels in heaven!

I am blessed to have many mother's in my life, my mom, in-laws and the other women in my life who love me like their own daughter. I am blessed to have each one of you! I love you all.

I love you

So I think we are going to start Emily on baby food again! Before the horrible side effects of her many seizure meds Emily was a fantastic eater! I made all of her baby food and she was not picky at all. She loved her veggies most though.

She slowly quit eating and it was so sad for me to see her not be able to eat. The past few days though she had tried to bite whatever comes close to her mouth! It is kinda funny. So I think she is ready.

So I got several ketogenic recipes from our amazing, wonderful, and newly engaged ;) dietitian, Stacy. I am a little nervous about it though. Change in anything with a seizure kiddo can bring on seizures so I am praying for a smooth transition.

I just wish there was something I could do to get her to sleep at night. Currently it is 2:10AM and she is squealing and kicking with delight. Don't get me wrong I am to the moon happy that she is in a good mood, I would just love to sleep at night because though the night there is less care to be done for her. In the morning, when she sleeps the best, I have to do her meds, g-tube care, feedings, make phone call, appts, deal with crappy home health companies (haha! can you tell i don't like them?) and it does not make it very easy for me to get good sleep.

I got a video of her last night, I say I love you to her probably a million times a day and last night it sounded like she was trying to say it! Just ignore me repeating myself over and over.

I was trying so hard to get a picture of her smiling but she would only smile after the flash went off. Also I understand that there are a few students in Mrs. Rollins class that check-up on Emily and like to see her pictures so I put this one on her for you all today. Thanks for thinking about Emily I told her that you all think she is cute and she smiled!

Doctor, doctor, doctor!

Between Emily and myself we had 3 doctor appointments yesterday!

I was very nervous about driving with Emily by myself but it all went well.

I did not realize how much stuff I needed to take for a day out. I had 2 diaper bags packed plus her backpack with her feeding pump and my purse. There is just so much stuff that could go wrong and if I forget something important it could mean a trip to the ER.

First up was Emily's neurologist. The appointment was pretty uneventful. Same ole same ole. Her 3rd round of genetic testing (lumbar puncture) was normal. We are waiting for one more test to come back though. They did check her carnitine level. (click the word for the long explanation)

Carnitine plays a critical role in energy production. It transports long-chain fatty acids into the mitochondria so they can be oxidized ("burned") to produce energy. It also transports the toxic compounds generated out of this cellular organelle to prevent their accumulation. Given these key functions, carnitine is concentrated in tissues like skeletal and cardiac muscle that utilize fatty acids as a dietary fuel.

Emily's was a little low so we are starting her on a supplement to bump that up.

The neurologist was very pleased about Emily's progress with talking and her alertness. She of course, in true Emily fashion, would not wake up for him. I honestly think he has seen her awake a couple times. We go back in a month and he said hopefully by then we will have an appt to go to Cleavland.

Joe called while I was parking and said his work was sending people home (involuntary) for the day and he got cut so he was going to be able to come to all the appts and help me (YAY for help but BOO for no money). Speaking of daddy he is a quick video of Emily saying dada. I think it is around 21 sec where she says it the best. She has him wrapped around her little finger. WARNING: Be prepared to turn your volume down! She gets so loud! Its funny but loud. I warned ya!

Next up was my appointment. My blood pressure has been high and the med I was on was not working any longer. So new med. Done.

While I had my appt Joe took Emily next door to her pediatrician to see if she needed reflux meds. The answer was we don't know yet. HA! The reason is that we have a very long appt with the main pediatrician next week. Because of Emily's needs we needed one with a little more experience with Emily's condition. So we are going to wait until we see her plus that gives us a little more time to see if it is truly reflux.

Beautiful week ahead so hopefully we can get out and to the park!!

Little turd!

Emily is being a turd! ha!

It is currently 3:50 AM and we are still awake. She took a very short power nap and now she is ready to go!

She is not in a bad mood either. She is super happy. I got another video of her, she has learned that she has a VERY loud voice and she knows how to use it too. Again it is dark (we are TRYING to go to sleep)

Isn't she funny?

Another fun thing I believe she has learned is separation anxiety. She threw the most awful fit tonight after Joe went to bed and I was getting her formula ready for her pump.

As soon as I came back in the bedroom and touched her she was fine.
I know most parents hate this but with Emily it makes me happy because she is learning something first of all and secondly she figured out that when I leave the room she can't see me or touch me. That is exciting because she is learning new things. Albeit not the most fun but hey she is learning and that is all the matters!

The end of the week is supposed to be very warm, high 70's so I plan on lots of time at the park. So expect some pictures! It's not like I ever take pictures of this kid anyway. It is just so hard to not take a picture of her lately, she is just so happy. For the first 4 months of her life all she did was cry, we very rarely got a smile so most of her pictures were of her sleeping.

See, awake and crying.

Asleep and peaceful.

Not a bad day

We had a ton of people wearing purple for Emily today! I have a few more pictures coming so I will work on that blog post soon! I seriously can't believe all the support we got from complete strangers!

So if you posted a link to my blog telling others about Emily or wore purple for epilepsy awareness, thank you so much!!! We really do appreciate it!

So I have a funny story.

It seems Emily is beginning to have a little reflux when she is laying down so to combat that we have been propping her up while her tube feeding is running.

I got this great boppy-like pillow from my aunt Shirley that has a strap that holds her in so she can't slip down too far if she falls asleep. So we got ready for bed I got her situated, began her feeds and then she had a seizure (very mild). It stopped and then she began this horrible crying which she normally does not do after seizures anymore. I picked her up consoled her but to no avail. I tried everything, finally I gave up and just laid her on my pillow and then this.........

How darn cute is this little girl?

This is where she is supposed to be. Over on the pillow with the circles!

She was as happy as could be! That is where she currently is too. I got a cute video of her too, its dark because I do try to get her to go to sleep. After she was so happy on my pillow she started talking up a storm! Also listen closely, is that a mom I hear? hmmmm

I love this rotten little girl!!

ahhh home

We are home! Yay!

It's a little bittersweet though. I am still nervous about having a baby with seizures, that no one can understand, at home. It also does not help that we are about 35-40 minutes away from her hospital.

It was very difficult getting her medicine from the pharmacy too. Since Emily is on the ketogenic diet she can't take just any medicine. We have to make sure there is no sugar and low carbs. Of course the pharmacist has never heard of this diet and of course they did not have the klonopin I needed but the good thing about being in the hospital so long is I got to know the residents and the one that was on call was super sweet and we got a temporary order to get us through the night. Was the the longest run on sentence ever?! haha.

So tonight I am going to catch up on everything that has been dvr'd and pray that we have a boring uneventful night. I love boring!

I did get a video of Emily from the night before last, it is very dark but the sound is all you need. She got to laughing so hard she gave herself hiccups! I love this sound so much.

little bit if this and a little bit of that

Let's start this off with some cuteness!!

This is Emily's new thing, when she is getting mad or irritated with us or what we are doing she says "neen". I am pretty sure it's a warning, like if you don't stop what you are doing right now I am going to get mean. Or she could be telling us we are mean! Either way it's just so darn cute!!

Next, I would like to say that out in this massive blogging world I found a family that has a little boy named Collin, very cute I must add, who has infantile spasms too. They live near us and their journey has had quite a few similarities. He is on the diet Emily is getting ready to start. Click here to go check them out! Please pray for this family. I know how hard this is and every added prayer does help!

On to the seizure stuff. I have not updated on Emily's seizure activity over the weekend because we wanted to make sure what we tell everyone is actually what we are going to do.

On Friday evening Emily had one of her big seizures (aka scary) in her sleep. I was holding her and she never even woke up. If I was not holding her I don't think I would have even heard her. Not that we ever let her our of our sights. It was incredibly scary. It only lasted about 30 seconds, we did not even have to give her medicine. I was on the phone with the on call neurologist with in minutes. Luckily I got to talk with one of my favorite people, one of the nurse practitioners, and she knows Emily well. I told her what had happened and she agreed that it is time to start the Ketogentic diet and to place a g-tube. She is eating less and less by mouth everyday. Today she ate 5 ounces.

To do a much better job at explaining the ketogentic diet click here . This site has been very helpful to me.

Next, I know some of you don't know what a g-tube is. It is a feeding tube that goes directly into her stomach. On the outside all you see is a little "button".

Something similar to this. By the way I do not know who this is. Just googled it.

This was the only picture I could find on google of a smaller kid. My point is that it is not some huge tube coming out of her belly.

The nurse practitioner is going to call me on Monday evening to let me know the plans.

It will take probably close to a week stay in the hospital again. We will meet with the dietitian and she will lay out Emily's course as far as the diet goes. We have to slowly switch to the keto-cal formula and check her blood sugar among other levels to make sure her body is tolerating it. Some kids it works right away, others it may take a couple weeks. The goal with the diet is to take her off all of this medicine and obviously stop her seizures.

I just pray this works. So far none of the medicine is working 100% and one seizure is one seizure too many!

happy video

I took this video the day before we had to go back to the hospital last week.

Emily is starting to laugh more and I just love to hear that little laugh.

Let me warn you though, she has just eaten a little bit so she is messy.
I was getting ready to give her a bath so I didn't clean her up after eating.

It's so cute, sometimes if I laugh she will laugh back at me.

I think we all need something funny to lift our spirits!!!

Listening to her laugh just makes me want to cry! ( tears of joy ) I love her so much!!

Update time!

We had a neurology and an eye doctor appt today. It was a VERY long day. We left the house at 9am and did not return until after 7pm. I am so proud of Emily though we had no major melt downs and she rides in the car so much better!

Our first appt was with neurology and let me just say I feel so much more confident with our neurologist. I feel this time that he really does care about us.

So Emily is still a mystery. He sent her latest eeg to the Cleavland clinic for them to look at. Emily presents with seizure-like activity but her eeg shows no active seziures. Her eeg is more organized and her hyps (bad pattern for an eeg) have cleared up but it seems she is still having spasms and very small seizures through the day.

Her newest seizure is very short, very small twitching of her hands, feet, and mouth. She actually did it in front of the dr. today. Here is an example of this type-this video is a couple weeks old, she now only will do this shaking for 10-15 seconds. Most of the time I probably miss it.

So today we increased her Keppra and Dilantin and he sent us to the eye doctor to get the ok to start the sabril (vigabitrin).

The eye dr was great and we did get the ok to start the medicine. We have to follow with him very closely because one of the side effects of this med is peripheral vision loss. Emily HATED the eye drops! That was her only melt down of the day. She was tired and hungry and she just did not want to be held anymore.

She loves to just lay on the couch on her bobby and stretch out so for her to be held or in her car seat all day was asking a lot of her but she did so good!

Our hopes with vigabitrin is that we will be able to start to wean her off of some of her seizure meds and that we will gain seizure control and she will begin to improve developmentally.

Her occupational therapist did notice better muscle tone and she is not a tight either.

Poor thing though she is losing her hair on the back and side of her head. She does not hold her head off the floor, pillow, boppy yet and she has begun to turn her head better. We turn her on her sides as much as she will tolerate it and she hates tummy time.

So I guess for now I just need to find some wide headbands to cover her little bald head. :)

We also are waiting on genetics testing. She doesn't really fit any obvious disorder so we wait and see what the next tests shows.

He does believe it is genetic but for some children its just such a rare cause they may never find it. I did get a letter about one of our tests and if insurance does not cover it they said it costs $5,000. So lets pray it covers it, i find out tomorrow.

From here if this medicine does not help will will start the Ketogenic diet. I can't explain it well it like Adkins on steroids. All fat with a little protein, no sugar at all. They don't know why it helps but for some kids it stops the seizures. We will do more research on that later.

We will be going to the Cleavland clinic soon for a 2nd opinion. After she gets started on the vigabitrin he wants us to go up there and see what they have to say. The neuro says its one of the best in the world. I have not done much reasearch on them yet though.

Pretty good day and the great news is we have nothing to do tomorrow, no therapy, no appts, just rest!! I get to sleep!! AHHH.....

seizures, what else?

Emily seems to be getting better (developmentally), but since we have weaned her off her ACTH it seems her seizures have picked up again. On the good side they are very short, most under 5 minutes. She has up to 10 or so a day, that I see.

I actually got a video of one of her seizures. She has a couple that she does now. I know she is talented. :)

One of her seizures is the classic spasm, some call it jack knife or jerking ( her arms and legs jerk up at the same time she does a crunch with her belly muscles) this one has gotten very weak though its mostly just her legs kick slightly now.

Another one is in this video she will just stop doing whatever she was doing and get really quiet and smack her lips a little or twitch her mouth a little. In the video her seizure starts around :25.

On a good note, she has begun to babble again and smile and laugh a lot more! I missed her babbling and her little voice so much. While she was on ACTH she did not do anything except cry and then that was even a different cry. It is so crazy how much that medicine changes them.

Emily is also trying to move a lot more. Joe was holding her and we usually have to hold her pacifier in her mouth until she gets a good hold on it but this time she put her little fist up there and was holding it in. She has been stretching her arms and kicking her legs more too!

I can't wait for next week when therapy starts, I am sure she will being doing a lot more soon!!