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!!

Sunny day!

Today was very sunny, not so warm but it was very inviting so me and Emily ventured out for just a little while.

She really likes it outside too. Its been a while since we have been able to get out because of weather, seizures, or hospital stays.

We have a couple of doctor appointments today and this is the first time I have drove in the car by myself with Emily in a long time. So please say a little prayer. It is going to be a long day her appt is at 9:45 and mine is at 12:40 so I have to take her feeding pump with us in case she won't take her bottles. I am just a little nervous.

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.

Another good day

Today was another good day for us.

Emily actually sleep most of the night (on my pillow) and so that meant I got a little more sleep than normal. I am so used to staying up that sometimes it is hard to fall asleep when normal people do.

Joe took over in the morning and let me sleep a lot more!

Joe and Emily got to spend some daddy daughter time today and I went shopping. Well, I use the word shopping but I had some gifts to take back that Emily can't use this summer. With that money I got Emily's Easter dress plus 2 more dresses! Children's Place was having a great sale! I love a good sale.

I have decided that dresses will probably be the easiest thing for Emily to wear this summer so that I can have easy access to her g-tube if we are out anywhere.

Emily and Joe had a little more excitement than I did though. Anything that Emily could expel from her body she did. She spit up several times, her g-tube leaked, and then she had a major blow diaper blow out so he had to change her clothes. Needless to say they were both pretty happy when I came home.

Also I am almost positive that Emily is saying mom. When I walked in the door she made that same sound as she did on the video from my last post. It sounds just like mom. Even Joe had to admit that it sounded like it!

She has been such a happy girl too! Last night she could not stop laughing! I got some great pictures of her and another video of her laughing. I could never get tired listening to that sound!

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!!

I am aware!

Today is epilepsy awareness day and I never in a million years thought I would have to be dealing with this.

Emily's form of epilepsy is labeled as catastrophic. It is also rare. Some sites say 1 in 2500 are diagnosised.

Most of the time they find a reason infantile spasms begin.

Genetic, traumatic birth, premature birth, or different types of infections in the spinal cord or brain are a few of the reasons.

So far we have done 3 rounds of genetic testing, including a lumbar puncture and all have come back normal. She was delivered via c-section at 38 weeks and she just had her very first fever in the hospital after surgery a couple weeks ago.

We cannot find a reason for Emily to have this horrible disorder.

There are many other theories as to what might cause this such as vaccines and I have even read somewhere stress. I am not sure I believe those things though.

Emily's prognosis is poor. She has had brain atrophy (shrinking) and is delayed. We don't know if these things are caused from her seizures alone or if it is indeed a genetic issue that the doctors just have not found yet.

It is hard to watch my almost 10 month old not sitting or crawling, barely able to hold her head up, or be able to say mama or dada.

I know that I am partial but Emily really is a beautiful baby. She does not have one blemish or birthmark and her eyes sometimes seem green and other times blue. She has the most perfectly shaped lips that I could just kiss off and my grandma's little upturned nose.

I pray that one day Emily will be seizure free. I also pray that the seizures she has had have not caused too much damage. I long for her to run and play and sneak my fingernail polish and write on the walls!

God gave me Emily because He loves me. That I know. Why she has this horrible disorder is something that I just can't figure out. I trust and have faith that one day we will figure it out. Until then I have a beautiful, amazing blessing that has epilepsy, but epilepsy does not have her!

So I am asking all of you to pray for a cure not just for Emily but for all the people suffering with this nightmare.

All of these pictures where taken before her diagnosis. I will get our picture of us wearing purple up later on today, she has had a very rough night so far and is asleep from all the meds. Please also pray that we don't have to go back to the hospital.

Thank you all so much for your support!!!

Grrr!

Well we had 2 1/2 wonderful, amazing, blissful, BORING, uneventful, SEIZURE-FREE days. Then BAM it started again!

Around 6:30pm yesterday she started and this episode of clusters went on for an hour.

We were warned that this could happen, she would have a few good days then a few bad. I know she is still adjusting to the diet but man 2 1/2 days with not one seizure was so great!

I was so afraid to tell anyone too so that I did not jinx myself (not that I believe that but when your kid has seizures you don't want to tempt the seizure monster!)

So back to square one. I know that this diet has already helped immensely, I just want it to help 100%.

I am so not patient, can you tell? lol

Oh and something happened when we came home, Emily has decided that she wants to be held more or she will cry tears, the most pitiful tears you have ever seen, until you pick her up.

We were in the hospital for almost 2 weeks and never once did she do that. I guess she knows what she wants huh? Truth be told I really don't mind being wanted. :)

I love her!