Wednesday, March 31, 2010

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!!

Monday, March 29, 2010

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.


Sunday, March 28, 2010

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!




Saturday, March 27, 2010

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!!


Friday, March 26, 2010

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!!!







Thursday, March 25, 2010

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!

Wednesday, March 24, 2010

Thank you

To date Emily has spent roughly 38 days as a patient at Kosair Children's Hospital.




She is only 9 1/2 months old. Over a month of her life has been spent in a hospital or ER.



We never left her side, one of us is always with her. The accommodations are not 5 star. The choices of food are limited to McDonald's on the 1st floor or take out. Sleeping arrangements aren't the most comfy either. It is a little bench with a cushion on it under the window or a chair that pulls out to a bed-like object. It could be worse.



We have a private room with our own shower. We have access to a small kitchen. Oh and there is always the TV with cable. (we almost always forget to turn it on though)



The best thing about Kosair is the staff!
Emily has several doctors that she sees, including her neurologists. They are great and extremely helpful and knowledgeable. The staff are the ones who get us through the nights. Who sit here with us as she has hour long seizures. Who tends to her after surgery and laughs with us at the goofiness that is Emily!




These people are the ones who work 12 hour shifts to take care of our little Emily.


Family and friends: These are just a few of the nurses that have taken care of Emily over the past few months. I would like you all to look at their picture or name and pray over them. I know how much you all love Emily and I think for you all to be able to "see" the people who have cared for her and to be able to pray for them would be awesome. These are the nurses that would stay with Emily for hours while she would have her seizures and worry about her just as much as we would. Don't worry I got permission from each of them to use their picture and name. :) Also if you want you can send a card to Kosair (unit 5 west).



This is Alisha. We have a special bond with her. The very first time we were admitted Alisha was Emily's nurse. I will never forget that night and how scared we were. She is so amazing and even on days when she has to work another unit she stops by to see us! Thank you so much Alisha, that first night was the scariest night of our lives and you were so helpful and kept us calm.




This is Julie. We met Julie I believe our 2ND admission. Julie is very funny and very boisterous ! ha ha! Good thing you works days right? ha! Emily got to recognize her voice though and would turn her head to see her. She did not do that for just anyone! I think Julie has been Emily's nurse almost more than anyone else. Julie we love you! Thanks for doing such a great job!!




This is Stacy, Emily's dietitian. This girl is amazing too! She is super sweet and goes way above and beyond her job. She works Monday thru Friday but she asked for my number so she could check on us through the weekends. She listens to me talk about Emily even when it's not related to her diet. The ketogentic diet Emily is on is not an easy one. It takes a lot of calculating and "tweaking" and a lot of time! This is the easy part though because she is just on a formula with a little oil added. I can only imagine when Emily starts eating food again. Stacy, thank you so much for giving us hope. Hope that Emily will one day be seizure free and begin to thrive and make progress. You know more about this diet than everyone else does and this diet has done more for Emily than any medicine has. Your patient, hard work, and gentle caring attitude have been so appreciated! I consider you a friend now and can't wait to get know you more!

This is Britt. She is the nurse practitioner for the neurologists. This girl works her butt off! She is the nurse practitioner for the neurologists. We came into the hospital as an emergency on a Monday, within 24hours Britt had Emily's g-tube surgery scheduled and 2 tests that had to be done before the surgery to make sure everything in her belly was OK AND she got a MRI scheduled and the ketogenic diet started. Let me explain that ALL of those things can take days or weeks to schedule but we were not in our room for 24 hours and we had them all scheduled. That took some work! She has the kindest heart too. Britt, I am so thankful for all of the hard work you have done for Emily. I see how busy you are but you never show that once you are in her room. I would never now that you have other patients to take care of, you never rush us or make me feel like I am nuts for the crazy questions I have. Thank you so much!!!

This is Jenny. She is another one of Emily's fabulous nurses. I feel very comfortable when I see Jenny come in at night. Jenny is "on it" at all times. I am not sure you could catch her off her game ever. She works so hard and it shows. She is so confident and that makes Joe and I feel rest assured that during the night our little Emily will be well taken care of. Jenny, I know I had a hard time sleeping at night because I was so nervous, you made me feel that Emily was safe in your care. Thank you for all the time you spent with us, making us feel that Emily was your only patient!

In addition to the ones above there are so many other nurses, aides and staff that we are so thankful for.

Courtney, Laura, Emily, Jenny, Alisha, Theresa, Nicole, Stacy (sorry if I left your name off or misspelled it I just can't remember everyones name )

Joe and I want to thank each and everyone of you for all the time you gave to our Emily. She is the most important thing to us and we appreciate all that you all have done for her. I know she, at times, required a lot of time but you all made us feel that she was your priority. Words can not express how scary this horrible, sad and painful journey is but we are thankful to have the comfort that we received from you all. We are thankful you all have chose the selfless careers that you did. You all are amazing! God bless each and everyone of you. We will never forget the love you showed our beautiful girl. Hopefully the next time we see you all it will be a visit. Also if any of you have facebook you can add me (profile is on the side of this page) I update there with little things and more pictures. I would love to keep up with you all.

Monday, March 22, 2010

Quick update. We are still in the hospital.

Emily had a few big seizures on Thursday and for some reason she has a very high tolerance to most medicine so we had to come back to the hospital.
She was doing really well and we were getting ready to come home yesterday. They took her IV out, Joe loaded up the van, and I got her dressed then she started with her twitching episode. She will slightly shake/twitch her feet and mouth for just a few seconds (we know this is seizure activity from her latest eeg) and then stop, recover and then repeat. Normally this will go on anywhere from 1-3 hours at the longest but this time she did not stop for almost 7 hours. It was not a constant seizure but it is still bad.

The doctor ordered phenobarbital and it worked. She stopped and slept all night. Those of you who know Emily know how resistant to meds she is. Nothing ever makes her sleepy and this did. So sleep was had by all!!

She is still pretty sleepy today but having a marathon of seizures and a new medicine is enough to make you sleep for days.
Also we have taken her off her sabril(vigabatrin). It did not make a difference with her seizures.
We have also increased her ketogentic diet to a 4:1 ratio. It means more fat intake because she is not passing enough ketones.
We are hoping to go home in the morning.

Friday, March 19, 2010

she's baaaack

Guess what! Oh I am sure everyone can guess by now,
we are back in the hospital.

She actually had a really great night when we came home, her last seizure was at 8pm and she did not have another one until 11am the next morning. Then she had 2 but they were under 5 min. each.

So fast forward a couple hours and BAM! It was over 3 hours worth of seizures. Emily is very talented and her seizures manifests themselves in a couple ways. One is her newest , twitching. And twitch she did. I gave her all the klonopin I could give her, she passed out for a few minutes and then started having big seizures (cloninc/tonic) We called EMS and they witnesses a few so....here we are.


Around midnight she started again, with the twitching. This time she gets IV ativan (stronger than klonopin). She got than 3 times and IV dilantin and still her seizures(twitching) are not stopping. By the was this whole time she is not even falling asleep and should have been knocked out with the 1st IV ativan dose.
So they gave her diastat which is rectal valium and it seemed to have done the trick. She is not all the was asleep but resting for now. I am getting ready to try and sleep myself.

I just really wanted to lay in my bed and relax for a few days. We are just pretty down today. Kinda feeling a little defeated.

I am just so tired and for someone to help us they would pretty much have to live with us because Emily ,by no means, fits any mold. She changes day to day. Joe and I questioned each other all the time "Is this a seizure". So for someone to come from the outside to help would pretty much be impossible at this moment.


I am just really scared and want this all to stop. I hate it for Emily so much. Sometimes in between seizures she looks at me with the saddest eyes and I can't imagine what is going through her mind. I am her mommy, I am supposed to protect her and keep her from hurting! I have no control over this and it is killing me.

Thursday, March 18, 2010

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.






Tuesday, March 16, 2010

Happy Anniversary!



Yesterday was mine and Joe's 6th wedding anniversary, and we spent it in the hospital.




Needless to say this is not how we expected to spend this day. It is ok because I would spend as much time as I had to to help Emily get better.









6 years ago Joe and I along with his mom and step-dad, my mom and step-dad, and my best friend and her husband went down to Gatlinburg for our wedding.






We got married in a beautiful chalet on top of the mountain. Me and my best friend Angie decorated the chalet with white Christmas lights and tulle, tons of white candles of all shapes and sizes, and rose petals all over the place.



It was perfect!



We came back home and had a fun reception with the rest of the family and friends who could not make it to our wedding.



Funny thing though, when we returned to our rental house the electricity was shut off. I called and they said we never paid our deposit and no one was available to turn it on until the next day.



It was cold and very dark but we made it haha. I still swear we never got a bill!!






Joe and I met at work. I was working in a hospital in Louisville and Joe had just moved here. The moment I saw him I knew he was different than anyone else I have ever dated.



I asked him to lunch one day and the rest was history!





Our first date we walked around the waterfront then went back to my apartment and watched sweet home Alabama, he was such a gentleman.




The next day I went to work and told all of my friends that I was going to marry that man! No one thought I was serious but I really was.



We began dating Oct. 24 and we were engaged Nov. 16th. We were married March 16th 2004.


Our marriage has not been a piece of cake. We have gone through several struggles. We have suffered infertilty and the loss of a pregnancy. Most recent we are struggling with our precious Emily's diagnosis of infantile spasms.

"There is no one else in the world I would rather go through this with"




Joseph Edward Rollins,



I love you more today than I could have ever imagined loving someone. You are truly my best friend. Some days when I am nothing more than just a puddle you become my rock. You are my hero and I honestly have no idea what I would possibly do without you. I promised you on March 16th 2004 to love you no matter what, sickness and health, til death do us part and I meant every single word! You are an amazing dad. Emily looks at you with such love and amazement. She adores you almost as much as I do. Thank you for loving me even when I am horrible and moody and don't deserve it. Thank you for being my provider, cheering section, companion, comfort, hand to hold, baby daddy :), and my lover. My world is complete with you and Emily.



Thank you God for my wonderful family!

Sunday, March 14, 2010

bad news

I have been holding off blogging about this just because it is hard to type.
We got the results of Emily's follow up MRI of her brain.
Compared to the MRI in Dec. her brain has suffered mild to moderate atrophy, which means it has shrunk.


We are getting a 2ND opinion within a month at the Cleavland clinic.

Another thing that could have happened is that her brain just did not grow with her skull, which is what we were hoping.


We were just so taken aback because she has actually made PROGRESS the past few days. She rolled to one side and brought her hands together (like praying). She is smiling more and laughing appropriately. She is even making more eye contact too.


So needless to say we are pretty upset with this news.
I am holding out hope though, this is one doctors opinion, and as we all now Emily is a mystery so we can't compare her to anyone else.


She started the ketogentic diet and tonight it seems to be kicking in. We have to test her blood sugar and check for keytones in her urine. The goal is to get her blood sugar somewhere in the 70's (normal is over 100) today she got done in the 80's. She is already having moderate keytones in her urine too.
We are only 2 days into the diet so I have not seen a huge improvement in her spasms. Yesterday was a very bad day for spasms but today they are not nearly as long, so maybe that is the diet kicking in.


So please pray for Emily and us. This is so hard to go through.

I just wished we had answers. None of her genetics are saying anything. We are currently waiting for the 3rd round to come back.


I love her so much. She is all we ever wanted.


One last thing. Emily's daddy ,Joe, has started blogging about his princess. Go check it out.

Friday, March 12, 2010

tons of pictures!

We are still in the hospital. Hopefully we will be able to go home on Monday.



Emily has started the ketogentic diet, we have not seen a huge change but she really has not been on it a full 24hours yet. We started it Tuesday but had to stop for her surgery, started it today again but had to stop again for some testing that required her belly to be empty for a while.

From what we can see she is tolerating the diet well.




Today she had another MRI of her brain and a lumbar puncture. The MRI is a follow up of the first one done. They are checking to see if any thing has changed over the past 3 months. The lumbar puncture is where they take some spinal fluid and test it for genetic stuff, enzymes, and other brain related chemicals.


Joe's dad, step-mom and grandma all came in from Ohio to stay for a little bit and we got a 4 generation picture.






Lonnie, Brenda, Joe and Emily







We have not seen them to have Christmas yet so that is what we did. We opened our Christmas presents in the hospital.



Here is Emily surrounded by all of her Christmas gifts!





We also had a friend from church , Christy, bring us a wonderful dinner. She has cooked for us before and it was one of Joe's favorites, lasagna. So when she called and asked if she could bring us lasagna Joe said YES before she could finish asking! Needless to say I did not expect all of this!!



Yes folks, that is real dishes and linen napkins! It was soooo good. Thank you Christy!!


One thing about being in the hospital that I hate is I don't get to cuddle with Emily. Ever since she was diagnosed with infantile spasms she has slept with me. She used to sleep with Joe and I before but she has her days and nights mixed up and Joe has to get sleep at night so he can work so now its just us two. She is my cuddle bug and it is so hard to do that with an IV in her head, cardiac leads on her chest, an oxygen probe on her toe, an incision in her belly button and a new g-tube.
So this is as close to cuddling as I can get for now.



This is how Emily used to always sleep. We said it looked like she was praying. Bringing her hands together was one of her skills that she lost and tonight she did it again!

Also while we she was getting ready to have her MRI done she rolled to one side! That was another skill she lost. I was signing the consent and almost cried!! I think they thought I was crazy! hahaha


Wednesday, March 10, 2010

surgery day





It's been a very long day.


Emily had her g-tube placed this morning at 9:30am.


Everything was pretty much text book. It took at long as they said it would for the actual surgery and recovery went well. She woke up within an hour and they brought her to us and she has slept most of the day.


She finally woke up and starting having her spasms. She only had 4 clusters of spasms yesterday and 2 before surgery. I was hoping this pattern would continue. Once she started it was really hard to get her to stop again.






Her spasms only lasted about 10 minutes then she went into her twitching seizures. Her mouth and feet twitch very slightly (in cluster also) and this went on for over an hour. We gave her 2 doses of .25mg of klonopin and an iv dose of ativan. Sister has a major tolerance to medicine that's for sure.







You would not even know she had surgery, she has been so happy and kicking her legs. I even just got a good laugh laugh of her!






Emily with her Louisville doll her grandma got her today. We love the Cards!!!
This is just 12 hours after her surgery, kids are so resilient!




We are praying for a uneventful night and lots of sleep for all! Sleep would be great!
We just want to thank everyone for all the support and prayers we have and continue to get.
I can't fathom how many people are praying for our little girl!
Thank you!



Monday, March 8, 2010

Good?



We are in the hospital....again. I am pretty sure I have said that a couple of time before.


This morning around 3am she started having her spasms and they lead into a massive seizure/spasms chaotic hour and a half.

After tons and tons of valium and klonopin and calls to the neurologist she still did not stop. After her last big seizure we called 911 because we could not give her any more meds without suppressing her breathing and we live over 30 minutes away from the hospital and it was almost rush hour at this point.


Honestly this was the best ER visit we have ever had. We were in the ER around 6am and we were in our room by 9am. Of course Emily did not have anymore seizures or spasms until we were admitted to the unit.


She had 3 more of her big seizures and a few more clusters of spasms. More meds and still no sleeping baby. I do not for the life of me know how she was awake.

Since midnight she had 6 doses of klonopin, 2 of valium and 1 IV ativan and this is what she looks like

It's almost 8pm and she fell asleep about an hour ago..finally.


So listen to how great everything is working for us!
We were hoping to start the keto diet and get a g-tube placed in the next week or so. It takes a little time to get everyone coordinated for all of this.
To get a g-tube it requires a couple of tests, both require sedation. To get the keto diet started requires a dietitian free for almost a day to do education and get her started on the formula.
Drum roll please...............................................................................


WE STARTED THE DIET TODAY!!!!!!

We are scheduled for all of the testing first thing is the morning!!!!
Everyone keeps saying " I can't believe how everything is falling into place!" Well I can believe it(wink to GOD) ;)
If all of her tests are OK then she will get her g-tube on Wednesday.


Just please keep Emily in your prayers. Lots of test tomorrow, lots of sedation and then possible surgery on Wednesday. Pray this diet helps her.
I want her healed so badly.



p.s. Dear seizures......I HATE YOU!!!!!
thanks!

Sunday, March 7, 2010

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!!




video



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!

Saturday, March 6, 2010

I think I can I think I can

A while back I signed Emily up for a free book club through our public library ( thanks to Dolly Parton) and she got her very first book!








How appropriate is this book? Not to give up, keep trying, we can do this, we can do this! Never thought I would get inspiration from a children's book. HA! God teaches us in many ways doesn't He.



The second thing that really inspired me was a song. I had to run to the pharmacy and I was actually alone so I grabbed one of my favorite Cd's (Natalie Grant) and turned up the volume as loud as it would go and started singing one of my favorite songs of her but his time was different. I found myself crying and unable to get any of the words out because it was exactly how I was feeling.









Especially the lines that say "Bitterness has plagued my heart many times before, my life has been like broken glass and I have kept the score of all my shattered dreams......"


Lately I have been VERY bitter and jealous of a lot. I have defiantly kept the score of all of my shattered dreams. I have dreamed of what being a mom would be like and what our lives could have been like and then it hit me...... I have to create new dreams for us. For Emily.

If I just dwell on what could have been, what should have been, I will only being cheating Emily out of the best life I can give her.

I am not saying that everything is great and perfect or that I have it all together. Truth be told I will probably cry just about everyday and grieve the life I dreamed. That is ok though, as long as I am dreaming new dreams for us.

It's only by God's grace that I stand, that I get up and breath, that I go on hours and hours of no sleep, and that I have not given up my (new) dreams.

I will not be moved.

Thursday, March 4, 2010

Roller coaster

After I posted last night post things went downhill.


Emily had 5 spasms/seizures all day yesterday and just this morning from midnight to 9am she had 7. (9 total so far) The longest one was over 50 minutes long.


I gave her all the medicine I could give her and she just passed out eventually.


I called the neuro as soon as they opened at 8:30 and they said to up her klonopin back to three times/day and increase the dose. So far so good.


She doesn't usually start having increased or longer spasms until around midnight so we will see if the med increase helps.


He also said we don't have many other options, which was hard to hear. Our next step is the ketogenic diet and a g-tube.

I am going to give her through the weekend to see if the sabril will help or not. If on Monday we decide to start the diet she will be admitted again to start the diet to make sure her body can handle it and I am sure they will go ahead and do the g-tube placement while we are there.


She is super smiley today too! It's so cute, she can hardly keep her pacifier in her mouth because she keeps smiling so much.


I got this picture earlier on my cell phone.



Wednesday, March 3, 2010

Really good day!

We have had a really good day.




Emily is still not eating well, actually today she has eaten less than the past few days.






Her spasms are way down today! Normally she has anywhere between 8-20+ spasms/seizures a day that last from 1-45 minutes and so far today she has had 5 with the longest at 10 minutes! This is a huge improvement!






She has been much more awake which I am sure is because she slept for almost 5 hours straight this morning (4a-9a) She has never slept that long! That meant that I got to sleep that long too! We got a few afternoon naps too. I don't think I have felt this well rested in a long time.




We had a visit today from Lynn and she even commented how much more relaxed she was. She actually fell asleep while she was holding her.




I kinda enjoyed today. Well minus the feeding tube and the meds and the 4 seizures. For a little while I just felt "normal".


Don't get me wrong now I love everyday I get with my little girl, good day or not, and her daddy and I do thank God every night for giving us one more day with her.


It's just nice to have a day every now and then to relax just a little bit.




She was laying on the couch watching American Idol with me and just fell asleep.



She look pretty relaxed doesn't she? lol!

Monday, March 1, 2010

Home sweet home!

Ahhh, we are finally home!

After almost one week in the hospital, home feels like a dream!

Emily came home with her NG-tube and a feeding pump. She is to get 27 oz of a higher calorie formula. We are to let her eat as much as she wants during the day and then as night we figure out how much she needs to total that amount and set it over 10 hours. I never thought an IV pole would be a piece of furniture in my bedroom.
So far so good.
The doctors are going to give her about a month to improve her eating. The NG-tube is really only good for appx 30 days so at that point she will need a g-tube.(goes into her belly)
I am not scared of the g-tube itself, I am just afraid of the surgery. With a very unpredictable disorder things like anaesthesia scare me.

We have also increased her vigabitrin(sabril) to her max dose of 450mg twice a day. I am not sure its made a huge change with her spasms but it def stopped her big (and very scary) seizures.

Also, we have seen little things in her personality shine through. I can hear a difference in her cry or babble. Like if she gets mad at you she will let you know with a very distinctive grunt. Its very funny.

Emily did not sleep well at all last night. I stayed up until after 4am and then Joe took over. She would only sleep for 30 minutes at a time. She was not fussy just very awake and of course she has slept most of the day.
She is asleep right now so I am going to try and finish so I can sleep. We have an early PT sched in the morning.
Quick funny story- Early this morning in the hospital I was holding her and she has fell asleep. I saw her smile so I just stared at her and she started laughing! Not a giggle, it was a belly laugh! She must have had a very funny dream. I am sure it was about her daddy, he can always make her laugh.