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.



off

I don't really want to blog right now but I am making myself.

Things have not been good lately.

Emily's seizures have picked up in spite of everything we are doing.

She has what we think are seizure-free days once or twice every week to two weeks but I am not sure that they are really seizure free.

The past few days have gotten really bad.  She is having so many seizures and we are giving her a lot of meds to TRY and slow them down but they are not working well anymore.

She is weaker than she has ever been and has not been herself in a few days.

She is twitchy and very seizurey looking.

We took her to the ped yesterday just to check labs and urine to make sure it's not something simple like an infection or off labs we are dealing with but they were normal.

I really don't want to go the hospital (especially during cold and flu season) we have oxygen and and a monitor at home and we have been using it lately. She has only needed oxygen once but we are thankful we had it.

We are taking her in to see the neuro the beginning of next week and hopefully we can figure something out.

I want my happy smiling baby back.

Infantile spasms awareness week

As I set here feeding my 16 month old daughter through her g-tube, I am aware.

This is infantile spasms awareness week. It is sponsored by the company ,Questor, who manufactures the steroid injection ACTH (acthar gel). The same company who makes almost $30,000 per vial (we used 3!) eye roll
This is what she looked like on the ACTH.

Anyway....
No other company or organization is doing anything to bring awareness. I had planned on this week doing several blogs, posting videos and stats but Emily ended up back in the hospital again on Monday night. So I have not had the time to do it all.

It was the quickest stay yet. She was admitted around 11pm and we were home by 3pm Tuesday.

She had been doing really well, Saturday and Sunday she had no seizures and then Monday morning it all changed. Her spasms are usually an indicator of how her seizures will be. Less and more mild spasms usually equals little to no seizures and when she has frequent, harder spasms her seizures are crazy.
She woke up to a lot more spasms and the clusters were lasting pretty long too.

Just as predicted she started seizing just a couple hours after waking up and they "seemed" to be under control. Never trust a seizure! :)
Joe got sent home early from work so we laid down and were napping when Emily's nurse hollered for us. We ran out to the living room and she said she had a new scary seizure.
She described it and right on cue Emily did it again. It was a tonic-clonic (grand mal) but she was screaming with it. They were not long but she quickly began clustering them. I gave diastat and called neuro gave some more meds.....they were not stopping. It was only sedating her and my biggest fear is aspiration. Once she could not clear her throat I get nervous.
There was really no changes made this time, they just monitored her and gave some IV ativan.
Today she has only had 1 seizure.

Were are working on getting an oxygen monitor for home so that we can avoid hospitalizations like this one. If we can monitor her oxygen at home when she is that sedated hopefully we can stay out of the hospital during cold and flu season.

I am aware, aware that infantile spasms is scary, destructive, and life altering.
Before the diagnosis

 After the diagnosis

We have had to make choices no parent should.  We have sacrificed a lot and will sacrifice more. We have gone days without sleep, food or showers. We lost half of our income when I quit work to take care of Emily. I have lost relationships with people who in most families are their greatest support system. People just don't knock down your door to visit, we don't have must else to talk about these days other than Emily and everything that revolves around taking care of her.

Dec. 3 2009 was probably the worst day. When I heard the diagnosis of IS I felt relieved. A name like that CAN'T be that bad, right? Then I saw the sadness in the neurologist eyes, he knew how hard this road was going to be. I am so thankful we have such a great neurology team. Our neurologist is kind and helps with whatever we need. I am pretty sure Emily is his favorite patient (wink wink) :) The whole office is always very helpful and most of them know us well. When we are in the hospital the nurses know us well and take great care of us.  We have a great relationship with the neurology nurse practitioner and Emily's dietitian also. While I wished with every ounce of my being that we did not have to have those people in our lives, I am thankful that we do have those people who take such great care of her.

I pray one day we can find a cure for IS and epilepsy in general. I have many friends I have met through blogs, forums and facebook and watching so many kids suffer daily from seizures and spasms is devastating. Since last Dec, I have seen 5 kids pass away from epilepsy, we NEED a cure!

slacker

I am a blog slacker.

I guess I should update you all about Emily huh?

We have had lots going on here lately. Just too much some times to actually set down and write it all out.

She did great after we began her phenobarb wean! She had several days with no seizures and we saw so much more of her personality too.

Unfortunately things got really bad on Saturday afternoon. Joe went to a football game and Emily I were hanging out at the house and she began to have a few very small seizures. All of the sudden she had a tonic/clonic (grand mal) seizure.

Emily has probably had 5 or 6 ever and on Saturday she began to cluster them. I was more terrified in that moment than I ever have been.  They were not lasting long, less than a minute each, but were just coming back to back. I gave her diastat (rectal valium) and it did nothing! I was alone and was trying to get through to the on-call neurologist but there was some miscommunication with the answering service so I could not get a hold of them quickly.

I called an ambulance because at this point she had over 10. She was coming back in between them but the diastat should have calmed things down.

Now I live in a very small town and half of the town are volunteer first responders and I am pretty sure most of them came. I am thankful to have so many people to help but sometimes it's just too much.

So in the ER after a whopping dose of phenobarb and 6 attempts at an IV she was admitted just for 20 hours. Our best time ever!

So back to the drawing board with the phenobarb wean. We will just wait and take it much slower this time.

Emily's seizures come and go. She just had over 48 hours without any and then she had 15 today. There is not rhyme or reason and definitely not a pattern.

We do know now that she responds with a less is more approach when it comes to medicine.

Her sleep is still pretty sporadic but we did sleep 6 1/2 hours last night which was great! I am praying for another good night of sleep tonight.

This is the smile I got when we came home from the hospital.

Soooooo

I did not quite make it to the women of faith conference.

I did get to go shopping with the girls at an outlet mall and check into the hotel but that is as far as I got.

Joe took off work to stay with Emily and he called while I was shopping and told me she had been seizing and he had given her just about all the meds he could. I told him to give her the last dose and call the on-call neuro.

So I am sure you can guess the rest of the story. I made it home pretty quickly  and met him in the ER and they admitted her.

IV steroids and Valium did not do a lot to help but we did find out that her labs are off. Because of the zonegran and the ketogenic diet she has metabolic acidosis the short description is-----metabolic acidosis is a condition that occurs when the body produces too much acid or when the kidneys are not removing enough acid from the body. If unchecked, metabolic acidosis leads to acidemia, i.e., blood pH is low (less than 7.35) due to increased production of hydrogen by the body or the inability of the body to form bicarbonate (HCO3-) in the kidney.

We are now taking her off the zonegran, she has been on it for several months and have not seen enough improvement and we added sodium bicarb.

We also are going to retry topamax. The 1st time she tried it she stopped eating and at that point she did not have her g-tube.

On Friday she had over 166 seizures and yesterday she had 83. That is a 50% reduction.

We are also going to adjust her ketogenic diet to allow more protein and see if that helps with some more seizure control.

Joe did such a great job on Friday, checking into the ER with Emily is no small task! I am thankful to have such a hands on husband. I just hate that we feel so confined to home. I was so afraid and nervous to leave and all this did was make those fears worse. So no trips for momma any time soon!

Lately

It has been a pretty eventful week or so.

Emily's seizures were still pretty frequent after her last hospital stay so Last Monday I called her neurologist to talk about what is next and we decided to bring her in to do a couple days of IV steroids. In the past it has always worked very good for her.

It seemed that they got worse this time. We made a few med changes and sped up the process of switching her to food from formula. She is still on the ketogenic diet I just make her meals now instead of the ketocal formula. Personally i think that has made a difference. She is not nearly as gassy and hardly spits up at all.

She is eating at least a portion of each meal and what she does not eat I just put down her tube.

We finally have stopped her clonazepam and as of Monday she will be off her lamictal too. I never saw any side effects of the lamictal but we also never saw an improvement.

Stopping the clonezepam has been such a blessing though! Emily is so much more alert and you can see in her eyes that she is seeing more too!

On Saturday while I was sleeping Joe got a video with his cell phone of Emily laughing. It is the most awesome thing ever! She has not laughed (awake) in so so long! Joe said that he opened his pop can and she cracked up so he snapped his fingers and she laughed again. He then coughed and she was laughing so hard all she could do was squeal! She has done this two nights in a row now. I got a video but it is too long. I will work on getting a shorter one to upload.

She is also resting so much better. She is sleeping at least part of the night since we got home and just seems much more rested when she wakes up.

Since leaving the hospital her seizures have gone down to 5-10 per day plus her spasms. They are super short too.

It was a long hospital stay and it always sucks but since Emily has been in so many times we have really gotten to know a lot of the staff and it is nice to have friends while we are there. People that set down and pray with us and for her or just set down and talk. There are a couple of night shift nurses we have grown to love, Alisha and Stephanie kept me company many nights and I am thankful they love Emily and take such good care of her. There are so many people there that love her!

I had a couple rough days in the hospital watching my baby seize over and over for hours on end. Over the last week I have had a couple of wonderful emails from parents who understand, I know I am not alone in these emotions.

On a completely different note...

I was thinking about my post a little while back where I was just honest and raw with my emotions. While I am terribly sad that people have chosen to remove themselves from our lives I am much more sad for them. They are missing the opportunity to get to know an amazing little girl. Emily is such a blessing and to see her smile and laugh brings such joy to my heart.

Thank you all so much for the prayers

Another hospital visit

So Emily made it back to the hospital...again.

This time for some IV steroids. Her seizures have been relentless and we just can't seem to stop them. When we do it is not for very long.

So lots of tylenol (in case it is teething) and a couple med changes we are hoping to do the trick.

It has been a rough couple of days. We NEED to get these seizures to stop.

We are supposed to go home in the morning so I will try and do a better job at updating everyone then.

Thanks for all the prayers!!

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!

out of ICU

Emily got moved to a regular floor yesterday (friday).

This is her "room" in ICU. One wall and a curtain.

We have never had to go there before and I can honestly say I don't ever want to go back. It was not bad for us, it was just heart breaking to see all of the other kids there.

Emily was there because she was given a lot of medicine to stop her seizures, so they needed to monitor her very closely and fortunately she did great!

Privacy is definitely something you don't get there so you hear and see a lot of things you don't want to.

To hear the cry of a mother who just lost her baby is a sound I don't think I will ever forget. I have never been so thankful for Emily. I don't have to give specifics but please pray for that young mother.

The nurses and doctors that work there are some very special people and I have a lot of respect for them.

Enough with sad things.....

So, good news is Emily did not have a seizure that we saw yesterday. She has been extremely drugged and now that I think of it I did not see any spasms either, I will have to ask Joe if he did. Actually it's been 27 hours since her last one but hey who's counting? :)

I had a great talk with Emily's neuro dream team :) and we have decided to add a new medicine, lamictal. That drug will slowly be increased to her max dose along with zonegran. Once she is on those we are going to wean her off phenobarb and we have already began to wean klonopin.

So while she has been here she has been getting iv steroids and oral valium, that combination seems to really work when she has a major cluster like she had. In the coarse of two days Emily had over 120 seizures, that we saw, and that is not including her spasms that she has almost every time she wakes up. On top of her g-tube balloon exploding again, it has been a rough couple days for her.

I want to thank everyone who called and left us messages or send us messages on facebook. I am sorry if we were unable to return all of the phone calls but know that we listened to them all. We were not allowed to have our phones turned on in the ICU. I am thankful for the people who support us!!!

So if Emily behaves tonight we just may get to go home in morning. Keep your fingers crossed! If not we will go home on Sunday.

Please keep in mind if you plan on visiting in the hospital or at home please make sure you are healthy. Emily has taken another round of steroids which can lower her immune system and we need to continue to keep her healthy. Seizures are enough for this girl!

One last thing, June 19th is the epilepsy walk and we still have not met our goal of raising $500. Every dollar helps!

Click here -> Epilepsy walk

If you would like to walk with our team just click join team, if not you can donate any amount you like. It looks like we are going to have a pretty good sized team!! I can't wait. I am going to try my best to get shirts made so if you are for sure walking and would like one send me an email or message on FB and let me know sizes.

burst your bubble

We had to make a trip to the ER last night and it had nothing to do with seizures!

Who ever thought that would be an exciting comment haha!!

I was changing Emily's diaper, getting her ready for OT, laid her down and her g-tube was sticking out much further than normal. I pushed it back in and quickly checked the amount of fluid in the balloon that holds it in place and all I got was formula.

That meant that the balloon in her belly had popped and I was pulling formula from her stomach that I had just fed her. I taped a gauze dressing tightly over the g-tube (which was still in place) and we took her to the ER.

The balloon on the bottom is what is inside of her stomach.

The dr. in the ER took out the old and popped a new one right in. No problems at all. Emily slept in daddy's lap the whole time.

We were told that we are model parents! Yay pat on the back for us. Her stoma site (hole in her belly) was perfect and very clean.

You know its bad when the ER doctor walks in the room and is happy that we are there for just a g-tube issue.

You see some very interesting things in the ER waiting room. Some people use the ER as their pediatrician. One mom brought her 6 or 7 year old in because she "threw up last night" seriously lady! Another brought her 2-3 year old in because he was chewing on glass and she was afraid he may have swallowed some hmmm perhaps.

Having a sick child makes you look at other peoples emergencies and almost laugh. Ha, your kid swallowed glass, well mine can seize for hours on end. Do they make bumper stickers that say that? haha

Sometimes you just have to laugh!

cleveland update

First I want to start off by saying thank you.

Thank you all so much for all of the kind words, prayers, and very thoughtful messages. It really did help us get through a horrible day. So many people love and care about Emily, even complete strangers, and for that we are eternally grateful!

Emily had a MUCH better day today. We did not see any visible seizures but with that being said since she is still on an eeg we saw many on the screen, mostly when she is sleeping or when she is falling asleep or just waking up.

She was much happier today also. We got lots of smiles and some pretty good eye contact too!

She saw the ophthalmologist, who was also great, and he said she does have CVI. Her eyes are healthy and her vision is perfect, her brain does not let her see properly right now. When we get home with will start a vi son program for her to help her see better.

Yesterday we met with the neuro/metabolic specialist, he was so great! He explained what he thought and what we are going to look for. He thinks Emily may have an early onset of Rett's syndrome or cdkl5. She has actually been tested for cdkl5 before and it was negative but apparently the lab the preformed the test is not "the best" so if all of the other testing comes back negative we are going to re-test her for that one. He was explaining that finding Emily's disorder is going to be very difficult. He described it to us like this-finding a typo in a book with 20 trillion letters in it.

Finding what is "wrong" with her may not change anything, but if we do find out we can prepare ourselves for what is to come and some disorders have other problems that arise in the future like heart or kidney issues and we can already be on top of things if we have a heads up.

So blood and urine were sent off and we should hear something in 4-8 weeks.

Also we have decided to change her diet slightly. Stacy if you are reading this I am going to email you all of the new info this weekend :)

She is currently on a 4:1 ratio *4 fat to 1 carb* and the formula that she is on has artificial sweetener and some people are much more sensitive to it so we are changing formulas and ratios to see if that will help at all.

I will leave you with a few pictures.

This is Emily's very first hotel stay. She looks pretty darn comfy.

Her eeg leads on. She did so great with them, all 4 days worth!

bad to worse

I am blogging this because it is too hard to tell 35 people the same thing over and over. Please do not get your feelings hurt because we did not call you and tell you personally. We are choosing not to call anyone right now. It is too hard to say what we are going to say. If you would like, you may call us later tonight and ask questions but right now this is how we are choosing to update about Emily.

Last night she had a really bad night. Really bad seizures that would not respond to ANY meds and they were very strong. They were getting ready to send her to the PICU-(pediatric intensive care unit) when she finally stopped.

So that was our night-BAD

This morning the neurologist-neurosurgeon/epiologist came in to give us the results of her PET scan. Emily's seizures are from everywhere in her brain. She is not a surgery candidate. He also said from monitoring her on a constant eeg the past few days she has a very severe form of epilepsy. We already knew that but we had hoped that the PET scan would show that she was a surgery candidate so that was a huge blow.

She does not respond to most meds so we are adding some meds to her already extensive list. Once she is on the new drugs well we will begin to wean her off her klonopin and then use klonopin as an emergency drug instead of ativan and diastat because neither of those are working for her.

Our new plan, since she does typically respond well to steroids (for a short time) is when she starts a big cluster of seizures we will begin a round of 3 days or so of oral steroids-starting now because as I am typing she is seizing.

We are also starting a new drug zonagran (tonight), there are only 3 drugs left he thinks could work for Emily and this is the first one we are choosing to try. We will also be increasing her phenobarb because her phenobarb level is still a little low and in higher doses she does respond for a little while.

We will also be meeting with the keto dietitian to see if there is any tweaking we can do with the diet because she is still not in large ketones. That meeting is tomorrow.

Our new goal with Emily is less seizures, seizure freedom is not realistic right now.-WORSE

The doctors here are amazing and incredible. Sadly there is just not much else to do for Emily. Only time will tell what the future holds.

This is the hardest thing to deal with because there has always been a next step, many other drug choices and tests. Now we are down to 3 drugs and that is it. We have hit a brick wall and it hurts.

So please be understanding that right now we are grieving again. It may sound horrible to say that but we are. We are grieving the hope that we had in new meds, new doctors, new tests, new outcomes for Emily.

The reason we chose not to call anyone is because this is hard enough to type let alone tell so many people. Emily does have a lot of people who love her. Again, it is not personal. It is actually selfish and right now that is what Joe and I need to worry about, ourselves and Emily.

We will be coming home on Friday probably. She is not stable for travel right now, so hopefully we will be home this weekend. We love you all so much and are so thankful for all the support we get. Please keep our family in your prayers. This is just more difficult then I thought it would be.

I love Emily so much and to see her suffer like this is beyond fathomable.

Cleveland-day one

We are in Cleveland now and Emily is all hooked up to her eeg for the next few days. They want to see all the different types of seizures she has on the monitor so they may back off some of her meds temporarily and see what happens.

It is defiantly a different world here. Don't get me wrong it seems like a fantastic hospital and they have an amazing reputation for the most modern technology it's just not our little,everyone knows you, hospital.

The accommodations are a def lacking comparing to our home hospital. We have a very tiny room and we share a bathroom with another room. There is one shower on the unit and the door does not lock (ha!) Honestly I think we are just spoiled with what we are used to.
On a positive note, they left the hospital bed in the room so we have that to sleep on and a pull out chair/bed thing. The Ronald McDonald house is full so we could not get a room but they are letting both of us stay here so we don't need it now. They have a Ronald McDonald room on the floor for all the pediatric patients family's that has a couple computers, TVs, showers and laundry that we can use while we are here.

So enough with the complaining.....We met the neurologist up here and he is incredibly thorough, he knows his stuff. Joe and I were both very impressed. He agrees that something is going on with Emily's brain that is causing her problems, seizures, developmental delays, and low muscle tone, we just need to find what. He said he finds the cause in about 60-70% of cases but even if we find out what it is it may not change what we are doing. Finding a cause may just may be just that and not being able to fix anything.

That is pretty much whats going on so far, in the morning she has a PET scan done. Unfortunately, she has to be NPO (nothing to eat) after midnight and her test is not until 11am. I am freaking out a bit because I know she will be. We were 1 1/2 hours late feeding her earlier and you would have though I had not fed her all day! Also when she does not eat her blood sugar drops because of the diet she is on so we are going to have to watch the pretty closely. So needless to say I am a nervous wreck about this. She also has to be sedated for the test.

So tomorrow is going to be a long day. We also meet with the metabolic specialist tomorrow and they had me fill out a 10+ page packet to help them fill in on Emily. Maybe they will see something no one else has so far.

I will update sometime tomorrow.

We are here

We are here. Safe and sound. Emily was a perfect angel the whole trip!

She did not cry one time on the 8 hour trip, which that in its self is a miracle. If you knew Emily when she was very little you knew she would not set in her car seat for 1 minute without screaming her head off. Driving anywhere with her was torture and by the time we got somewhere my nerves were shot and she was a blubbering mess.

So this trip was a peace of cake!

She had only had 4 seizures all day the day before and only 2 in the morning before we left so I thought things were going good, notice I said thought.

We got to our hotel, which is gorgeous! I love a good deal and I did a ton of research and found a room at the Hilton for $89!

We planned on going swimming when we got here but there were a few people already in the pool so we decided to wait and go in the morning because Emily has very much become a morning person now, well until 10am hits and then she is back asleep.

She normally gets up between 4-5am everyday but this morning it's almost 7am and she is still asleep because she had a ton of seizures last night and we had to give her a ton of meds so now she is wiped out.

So probably no swimming for us and we were hoping to get out around town a little too but we have to check into the hospital at 1pm so I don't think we have much time. That's ok though, we all had a pretty good nights sleep so now we are ready for this week.

I am excited but very nervous at the same to time to hear what they think. I really want to know whats going on with Emily but it really terrifies me that we will get a worse diagnosis.

I will try and update through the week. I am not sure how well the Internet service is there so it may be sporadic. Only one of us can stay the night so we are going to try and get a room at the Ronald Mcdonald house.

Busy and long week. Pray with us throughout this week, we pray for answers that will help us to help Emily, also for continued safety, and peace with whatever we may learn here.

Thank you all so much for your support and love!!

catching up/hospital update

So we are back in the hospital again. We came back on Thursday morning.

Emily began to seize right at 5am, after not sleeping all night again. I gave her ativan a few minutes in and nothing, repeated in 30 minutes, still nothing, repeated again 1 1/2 hours into and still nothing.

I called on-call neuro (love her too!!) and I was told to give her her morning dose of phenobarb early wait 20 minutes. Still not stopping I called back and was instructed to give her evening dose of phenobarb and if that did not stop in 20 minutes I would have to bring her in.

I waited a little longer because I really did not want to come back but she was still seizing, slowing down, but still seizing.

I thought she stopped when we got into the parking garage, we waiting a little bit but she had another one so into the ER we went.

Luckily the on-call neuro called ahead and we went straight to admit express, which means we avoided the ER for the most part.

By this time she was done with that cluster of seizures it was almost 3 1/2 hours long.

We talked with the neurologist about her not sleeping and everyone agreed we need to fix that and hopefully if we get her sleeping under control that will help her seizures that happen when she goes long periods of time without sleep.

So last night she was supposed to get the new med, chloral hydrate, to help her sleep but she had a pretty bad round of seizures again and we had to give her quite a bit more meds so we could not give her sleeping medicine on top of it. So we needed to stay another night to give the chloral hydrate in the hospital to see how she reacts to it first.

We did get some good news though. We found out today that our private insurance approved a private duty nurse for 8 hours a day, 7 days a week for 30 days! That is a huge deal because the home health company said this does not happen often. They are coming out the beginning of the week to meet with us and see what our needs are. This means I can sleep soon!!!!

So we are hoping for a better night than last night.

I did get a couple of pictures of her smiling in her sleep. She is just too darn cute!

Home.......

We got to come home yesterday.

This was probably the best hospital visit ever! Very planned and straight forward, nothing unexpected.

Going for a walk in a wagon at the hospital

Emily had 3 doses of IV solumedrol (steroids) and she responded very well to it. We were told she would come out of ketosis meaning her blood sugar would elevate and her ketones in her urine would stop but in true Emily fashion she did not do either.

Her blood sugar was 87 at the highest and her ketones only dropped to moderate.

She never does what the doctors and text books say she should do. What a rebel!! haha

We did miss a few of her regular nurses though. Missed you Britt and Julie!! Why you must go a learn things is beyond me! HA!

ALSO, I have some pretty darn good news. Saturday night in the hospital Emily went to bed at 12:30am and did not get up until 7 or 8am!!! I know!! I was freaking out too!!

She was woken up a few times by alarms and such but I got her right back to sleep every time. So that meant momma got sleep too!!! Yippee!!

She has been such a happy girl too!!

Currently as I am typing she is snoozing so I am praying that this is the beginning of a fantastic new tread for her!!

Mom! Get that stupid camera out of my face!!

I have met a few blogger friends so far and they have said the nicest and sweetest things to me and one in particular is Hallie. Sadly, on April 15Th she unexpectedly lost her son. Please click here to go to her site and please pray for this family. It breaks my heart to think of loosing Emily so I can not ever imagine how this family is feeling right now. Words cannot heal those wounds but we can cover this family in prayer!! I know Emily has a ton of prayer warriors too!!! Thank you all so much!

Also I just wanted to say that I have a bunch of visitors and not so many comments. I just want to know who is reading this blog and how you found it. :) A few people told me they don't know how to comment. All you do is click on the word comment right below the post you want to comment on, type your message and follow the instructions below that. Pretty simple. Also my email address is on my profile and facebook page is on the side if you ever want to send a private message.

We are baaaacckkk! In the hospital that is.

Emily's neurologist and I had talked a while back about doing a round of IV steroids. At the time I wanted to hurry up and get her on the ketogenic diet. We made the choice to go ahead with the diet.

While the diet has been helping a lot her seizure control is not where we are wanting it to be. Since she has started the diet she has has 7 seizure-free days!! That is amazing to us but we know she can have more. So after some discussions with other IS mom's, a little research, talks with her neuro and a few prayers thrown in for good measure we decided to go ahead with the IV steroids.

When I discussed this with neuro he said when she starts to have another cluster of seizures go ahead and bring her in and we will start, right on cue Emily started just a few hours later. So here was are.

She has had her first dose. She will get a total of 3 doses in 3 days and then a little taper off. So that means a few days in the hospital.

This should be fun too because it is 4:30 and the princess does not want to sleep so I will sleep later I guess. Ha!

It's also thunder over Louisville this weekend and if you don't know what that is well let me just tell you. It is the largest fireworks display in North America. Over 500,000 people will attend and it is on the river and the hospital we are at is just a few blocks away. 500,000 people leaving at the same time just does not bode well if you are trying to get to the hospital so I am pretty glad we are already here.

So if you come down for Thunder stop by and see us!

good streak broken...

We were back in the ER this morning.

Emily starting having her spasms at 3:35am and then very quickly started having clusters of seizures. It started out with very short seizures, 30 minutes in we gave her ativan, we repeated 30 minutes later because they were getting stronger and more frequent. I called the on call neurologist because it was now 5am and she was not letting up and she also began have clonic/tonic seizures, most people would recognize them as "grand mal"

We were told to give her diastat (rectal valium) and call ems because she had so much medicine in here and we live so far away from the hospital. By the time ems got here she had over 30 seizures with almost half being the "big ones"

*Let me take this moment and vent about the ems worker that came. We have had her before but Emily was not as bad then. First thing that made me mad was she refused to let me stay in the back with her. She said I could not "handle" some of the procedures (starting an IV). So I quickly told her NO SUGAR! No dextrose, glucose of any form!!! She did not understand (HELLO that is why I need to be in the back with you Einstein!) Not many health professionals know much about the ketogentic diet and those that have heard of it know very minimal info on it. I then proceeded to tell her that Emily is a very hard stick to get an IV started and unless you must please wait for the IV nurse in the ER (they know her) to do it. She again did not listen to me and tried. Yes I said tried because SURPRISE she could not get it! We wasted 10 minutes setting in my road doing this! She gave her 2 IM (shots in the muscle) shots of valium on the way and checked her blood sugar and I pretty sure she used the biggest needle they make to do these two things because of the marks they left on her!

So to sum up this ambulance trip-It sucked!!

The ER knows Emily pretty well know and they are always very pleased with our record keeping. We keep a daily journal of all of her medicine, feedings, diapers, spasms, seizures, ketones, blood sugar. We would be so lost without that journal!

They checked her phenobarbital level and it was low so they increased her dose and made us stay a few hours to make sure she responded ok to it. They said that feeding food was fine so tonight we gave her one meal instead of two so we will see if we stay home tonight.

Praying for a good night, now off to watch Glee!

*Let me add something to the above rant. First I am so thankful to have EMS be able to come and pick us up and safely get Emily to the ER. I don't want anyone thinking otherwise. I just wish that they would listen to me. I am the mother of a child with a rare seizure disorder and an even more rare diet. I know more about Emily than they do. I do not know more than her (medically speaking) but I can hold my own I worked in a hospital for 8 years, I picked up a few things. I am not the average "oh my gosh something is wrong with my child, what could it be!" kind of mom. I know what is going on with Emily. This is our 4Th experience with EMS and 3 have been ok, just in combination with everything else it was too much!

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.

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.