what's new

I have quite a bit to catch up on.

Emily has had her 3 month post cast check up. That went great! You would never know she was in a body cast for 3 months 3 months ago! Her left hip socket is still very shallow and the ball is much smaller than the right. It's to be expected. We are in the process of getting her a stander. Praying that insurance will cover it.

You can see where the purple arrow is pointing how her left hip socket is a bow not curved in like the right socket. You can also see how small her ball is compaired to her right. When the hip is out of socket the ball does not grown.

In therory, if we can get her in a stander it will help push her femur and ball into her socket and help form her pelvix correctly.

She had a MRI of her brain and also had good news, no new atrophy. Which means her brain has no shrunk any more! Yay!

She had to be sedated with the MRI so we went ahead and had them do the ABR which is a sedated hearing test.

She had tubes in her ears and electrodes taped to her forehead and behind her ears. The result of this was great too! She even said the word NORMAL! I made her reapeat herself! :)

Emily has really been enjoying her iPad. She loves the fireworks app and anything with animal sounds. Her favorite is a kitty. Joe keep teasing that we need to get her a cat because she responds so well to it.

The new medicine, clobazam, is still helping. She has days with more spasms and seizures but her recovery time is so much better. The rescue drugs are working faster, when we need to use them.

The side effects are also minimal.

We went to Riley Children's Hospital to get Emily fit for a wheelchair, stander and car seat. They gave us a new car seat then. It was through the foundation and it is very nice and big! The car seat she was in was getting too short to keep her rear facing much longer. With Emily lack of head control we need to keep her rear facing as long as possible!

Now onto the fun stuff!

Emily loved the swings this time around!

My cute kitty cat!

She got lots of candy!

Me, Emily, Ava, and Angie at Halloween.

Just a reminder, my blog will not show up in your blog feed or on google reader.

New med update

What a difference a week makes.

This time last week was bad. Non stop seizures, tons of meds, no sleep for me kinda bad.

This past week has been much better, thankfully!

On Monday we upped her clobazam to 5mg in the morning and night. Adding that night dose has made such an improvement with her seizures.

Before clobazam she was having a bad day, recovery day, good day and then start over. All week. A horrible cycle.

This past week she has had one bad day and it was not "that" bad.

She seems more alert and interactive. It really makes me wonder if she wasn't having more seizures that we did not see that was keeping her in a fog.

Little things like making a face at her gets a smile out of her (That means she is seeing more) I was bouncing her in the bed and she was giggling(used to she would crack a smile at best) Her appetite is tremendous! We are watching her calories close to she dose not gain too much weight.

She is also much more vocal! The funny sound she is making melts my heart. :)

She is also developing some new reflexes. Her OT is pretty excited about these. I need to do more research on them to understand better but from what she said it's a good thing!

Oh, and she did this too ;)

Joe was not holding her he was just on stand by in case she tipped over. She held 4 point for about 15 seconds. This is BIG! We have been working on her arm strength for a while and I think it's starting to show!

what's recent

Sigh...

With the good comes the bad, it seems.

Emily's seizures have gotten out of hand again.

We went from just a hand full of seizure per week to 60-80 on one day, resulting in multiple doses of emergency meds and multiple calls to her neuro.

All day seizures for Emily equals no sleep. Most kids sleep a lot after seizures but not Emily.

Just last night she only slept maybe 4-5 hours and none of that was in a row.

She just had a sleep deprived eeg to see whats going on. When we do a sleep deprived eeg Emily can sleep from 11pm until 4am. I have to wake her up and keep her awake (fun)

We did a really good job, both of us were ready for a nap when we got home.

Her eeg showed an increase in seizure activity compared to the last eeg. There are some other changes too and she is already scheduled for a brain MRI to see whats new.

She did just pop another tooth through but she is still having daily seizures so that rules that out.

She also had another UTI when her seizures picked up, we treated that and did a recheck and her urine is clean now, so that rules that out as well.

While we are on the subject of UTI...

Emily has had several and while we do the very best we can to prevent them, (keep her well hydrated, clean, probiotics ect...) she keeps getting them.

Kids like Emily with low muscle tone can have bladder reflux where the urine goes back up into your kidneys and causes infections.

Our pediatrician suggested we do a kidney ultra sound to check for damage. If anything showed anything we would do a more invasive test.

Thankfully it was normal.



She was such a good girl during testing!

So here we are. Back to the drawing board.

We are waiting on new medicine from Canada called clobazam.

It is not FDA approved in the US, yet.

I just want to take a minute and say how thankful I am for Emily's neuro.

He makes himself available to us all the time. We have his cell phone but for after hours I don't want to bother him :) The on call neuro called him and within minutes I had a call from him wanting to know why we did not just call his cell phone to begin with.

It makes me thankful to know that someone cares for my daughter so much. He does not have to do that.

Please pray that this new medicine will help Emily.

I hate trying a new medicine, especially with all the recent development she has had.



adapting

We are slowly figuring things out.

Emily is not in much pain during the day, mostly just at night. When she is uncomfortable it is eased with a minimum dose of Tylenol or Valium.

I am going to post the things that work and don't work while she is in the spica. I am so thankful to have found a few parents who have already gone through this. Jenny over at http://colofisch.blogspot.com/ has been so helpful! Her little girl Cici has had to have a spica and is going though it again soon.

Our hardest thing is to figure out how to get Emily setting up straight enough to eat without chocking. So for now she is only eating a few bites per day and the rest is going down her tube. She is not really interested right now for some reason too.

The way her legs bent she can not set in a chair or on the couch.

We are working with her therapist to try and figure something out.



Here we are using her boppy, a pillow under that to elevate her, a tummy time pillow behind her back to take the pressure off her cast on her back and a total pillow to support her head.



She loves to be outside. Emily's grandma and grandpa Johnson bought her a nice wagon for Christmas but it is not wide enough for Emily to use right now. She will be able to use that wagon once she is out of her cast.

For now we are using one a friend gave us.

We used a wedge pillow for her to lay on and a memory foam pillow under her bottom to keep her up.

It was warm that day so we did not get so stay out long but she liked it.

We got this inflatable shampoo basin from amazon. It is large for her but it worked well. She did not care for it but she got over it quickly.

I love this face that she makes!

She instantly started reaching up and grabbing the lights and toys. After this pic I added some more toys for her to play with. I am trying to get a video together when she was playing with this. She was talking and what we call singing. It was so cute!

She is really moving her arms so much more since she can't move her legs.

We are really going to kick up therapy the next few months and hopefully when the cast comes off she will retain what she learned!

Christmas, vacation, surgery and teething oh my!!

Lots and lots of updates. I will be brief though.

I need to do several post to explain everything but I thought tonight I will catch everyone up.

Christmas was nice. Quite and calm. Just like we like it.

We had an impromptu mini vacation for New Years. The three of us went to Joe's dad and step-moms (Lonnie and Brenda) house Thur-Mon. It went so well. It was a 4 1/2 hour drive and Emily did fantastic! We all felt so relaxed the entire time we were there. It was so nice to have extra hands around to help with Emily. Of course Emily loved having her grandma and grandpa to love on her too!

I am proud of us for doing it. We only forgot one thing too HER KETO SCALE!! No worries though, I made enough meals to last a few days and then we bought another from Walmart.

It is hard to travel with Emily and we can't do it often but this trip was so worth it!

As long as she had her little puppy ,Violet, she was fine. :)

We had an appointment with ortho. Emily's left hip is out of socket and most likely has been for a while.

They will surgically fix it on Feb 14th. After the surgery she will be in a spica cast for 3 month and then bracing for a while after that.

This is what the cast will look like. She will be in the bilateral long leg hip spica.



She is off of topamax now!! Yay!!! Only on phenobarb and the ketogentic diet. This is the best seizure control she has ever had!

She is having a few-20 seizures per day BUT they are all very very short and only when she is falling asleep, waking up or after a very hard cluster of spasms. If we can get her all the way asleep or wake her up she stops.

She is incredibly alert and really looks for people. You can just see it in her eyes how much better she feels!

She is cutting her 4th tooth. Two on bottom and now two on top. This 4th one has caused her more pain though. Lots of tylenol and oragel and snuggles.

I will update more soon with lots and lots of pics!

Hope everyone has had a great New Years!!!

18 month check up

Emily had her 18 month check up today.

She is almost 21 lbs now! Her head, height and weight are all small, on the charts though and proportionate.

We were very frustrated this time because we had to wait 1 1/2 hours for a scheduled well baby check up. She is not getting vaccines right now so all the doctor needed to do is check most orifices-all were clear. I don't think she even looked at Joe or myself once. She never once asked how Emily was doing or if she was doing anything new since her 12 month check up. She never asked if Joe and I were doing ok or if we needed anything.

She was rude and angry that her nurse was not there to write her prescriptions and notes.

The reason we have stayed as long as we have is because of the awesome nurse case manager. Thankfully we don't see the pediatrician often.

It just makes me so sad to see a doctor who is doing their job because she has to do it, not because she loves to do it. You know a doctor who does it because he loves to do it when you see one.

Emily has had much better head control lately. She still has far to come but her PT thinks we may have her setting up within the next 6 months! I can't wait to see my baby setting!!!

She has two teeth on the bottom and one on top is getting ready to break through.

We know that teething is a seizure trigger for her and because we keep a daily journal on all of her seizure activity we can see trends.

Teeth!

The good thing is 3 months ago when Emily would have bad days she would have over 200+ seizures on top of her spasms. The past month or so during her bad days she is only having 20-30 seizures! That is a huge improvement! The only change we have made is wean her topamax.

Every time we decrease a med we see improvement. She gets her last dose of topamax on New Years Eve. We will be bringing in the new year one less med!!!

She loves the computer!

Another good thing is we finally got speech therapy approved and found a ST in our area to take her case! I am told she is the best and is very hard to get.

We have dropped her occupational therapist for now. The therapist told us that we over-medicate Emily and that every blink of the eye we see seizures (prob because we do!!) we spoil Emily, the list goes on and on. This was a fight I did not have the energy to fight and in our little country town there are not any other OTs right now. So she is getting PT twice per week, Speech once per week, and vision once per month.

Really into something!

Oh I almost forgot! I don't want to say this very loud but she has been sleeping 6-7 hours at night! Normal people sleeping time!! WOO HOO!!

more updates

Two posts in one day!! AHHH!

Emily is doing much better the past few days. She is finally over the uti and her first TWO teeth have broken through. I thought this girl would never have teeth. She now has two bottom teeth that came one right after the other.

She is still having clusters of spasms and a few seizures daily. The past few days her seizures have been down to 3 or fewer.

So now we know that a uti and teething are seizure triggers for Emily. Now we are dealing with biting. Fun.

Visually, Emily is really progressing. She is seeing so much better and is tracking and following more objects. Used to you would have to introduce something to her from the side and hope it would catch her attention but now we can start closer to mid line.

Another big thing is she is interested in the TV! She does not care for therapy so her PT suggested we turn on cartoons, I laughed to myself because she has never been interested in cartoons before, well she proved me wrong! She loved it and we got through PT without any major melt downs!

A friend gave us some DVDs to try and she loves them!

Here are a couple pics of her watching TV.

She really likes baby Einstein.

Emily and her daddy watching videos on the computer.

I want to get her an ipad so badly. I know she would love it!

We are weaning her topamax slowly and when she is off of that she will only be on phenobarb. We are defiantly seeing more of Emily since we began weaning meds. She is pretty happy but she is very opinionated if she does not like something. Especially when she is tired.

She finally broke the 20 pound mark! She has always been on the small side and now that she is on the ketogenic diet she does not gain weight very quickly. She is small but proportionate.

We did get Emily's bath chair. We decided to go with the Rifton Blue wave bath chair with a tub stand to make it taller when we need it. Emily seems to enjoy it and it supports her so much better.

All of the support straps are movable. We don't use the chest and leg straps because she does not move enough to use them yet. She loves kicking her legs in the water.

We also got her stroller. We decided to go with the Special tomato EIO. I don't have a great picture of it yet. There are many reason we chose it. It holds up to 90lbs and it reclines all the way back so she can sleep. We also got the special tomato soft touch liners to support her better and they can also be removed and used in a chair for more support later.

So far I am very pleased with it. I wish it had a bigger basket under the chair to hold her diaper bag. We carry so much stuff when we go anywhere.

So that is pretty much it. Oh and I turned 30.

Looking forward to some more good days.

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.

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.

holding my breath

It has been a little over 24 hours since Emily's last seizure. Yes, you read that correct! She went from having 100-200 seizures on Sun and Mon to only having 2 on Tues early morning and now none.

She had a neuro appt on Monday and we made some changes with her meds. We stopped her keppra, began to wean her phenobarb and increased her topamax. Almost instantly we saw an improvement.

Yesterday she was so much more alert and awake. She did great with her OT too.

Emily had her first hearing test, besides the one when she was born, and she passed it perfectly. I never questioned her hearing but some doctors and therapist have because she is very selective with whom she interacts with.

She has been so happy and smiley too! I love to see her feel better.

Unfortunately because of all of her seizures her sleep schedule is crazy again.

It is 3am right now and this is the cute face sitting next to me!!

 Can you hear her scream "talking"? It is funny but dang I am tired. :)

Just so glad I am up with her at 3am doing this and not counting seizures.

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!

Better?

So Emily has been sleeping A LOT lately but the past couple days it seems she is much more awake.

Yesterday she was definitely awake more than she has been in a long time.

It was nice to see her not so drugged up.

She has also been babbling a lot more too. She is making new sounds and using her tongue more. She "talks" a lot if we are having a conversation, it's like she knows we are not giving her all of our attention. :)

I don't know what parent would be happy about this next story but I was.

Emily almost (keyword almost) fell off the couch! I know this is wrong to be happy but dang it it means she is getting at least slightly stronger right ? When Emily is laying on her boppy on the couch she uses her stomach muscles to try and pull her self up. More often than not she does not go anywhere but this time I was not right next to her and Courtney (her nurse) took some things to the kitchen. Luckily I saw her and got to her in time. No harm no foul.

Seizure-wise, she is still having them. On the bright side she is not clustering them as much as she used to. Normally when she would start having seizures they would come in clusters of up to 100. It takes a lot of meds and time to stop them. The past couple days though (after med change) I have not had to give her any rescue meds because they are stopping on their own.

Emily is also sleeping SO MUCH better at night. Some night are better than others but over half of the week I am getting at least 6-7 hours of sleep. I am actually having to wake her up for breakfast and therapy some mornings.

It has been super hot here lately so we have just been staying inside, we cannot wait for fall so I can get her outside more!

I will leave you with this picture I took the other day. She fell asleep for a nap so sweetly I had to take it!

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

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.

they're back

We have had a rough night.

Emily started seizing around 6:45pm and has not stopped. She had 49 seizures yesterday and since midnight she has already had 9. They around 5 to 30 seconds long. I have given her all of the medicine I can give her for now.

Since we switched to oral Valium it really knocks her out, unlike the ativan.

She is not on her full dose of zonegran yet, we just increased it again last night so hopefully that will kick in. Until then we started her on another round of steroids last night but those usually take a few days to work.

I have to take her to the hospital in the morning for some blood work and I pray that she stops seizing before we leave.

Stupid seizures!

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.

rough night/morning

It's 6am and I still have not been to bed.

Emily started seizing shortly after midnight and I had just given her her dose of sleep medicine, which we increased. She was so so sleepy but her seizures just would not let her little body rest. She was laying there with her eyes closed but she was not asleep.

I had to call the on-call neuro and she instructed me on what meds to give and to call her back if she did not stop. She had not stopped and it was almost 2 hours later and now she was wide awake!

We gave her more sleeping meds and I can give her one more dose of ativan before I have to call back. So far she is asleep but I need to monitor her because she has gotten A LOT of very sedating meds. Every time she wakes up she has a seizure so right now I am just trying to keep her asleep.

We are pretty much out of options right now (med wise) and I desperately want to keep her out of the hospital.

I did find out that our insurance approved us for a private duty nurse 8 hours a day, 7 days a week. I did not want to tell everyone until we knew for sure but they start on Wednesday. I can't wait! This is going to be such a blessing. I will be able to rest or clean my house for a change!

Please pray that we don't have to go back to the hospital today. Thanks!

yea right

This is a picture of Emily I took yesterday a couple hours after she got her first dose of chloral hydrate. As you can tell the last thing she was was sleepy! She was talking and what I call singing NOT SLEEPING!! Hey at least she was happy.

Then after that she did not really ever sleep much until after 4pm. She needs her sleep so badly and I don't know what to do. I guess we will have to increase the dose. I hate giving her so much meds!!!

So far tonight she is sleeping but how long is the million dollar question.

Busy busy day tomorrow so I am praying for sleep, at least a couple hours.

My dear sweet husband was my hero yesterday. I finally got to go to sleep at 6am and I asked him just to let me sleep 6 or 7 hours, that would have been noon or 1pm. When he came in to wake me I could have sworn that I had only slept 2 hours and he said it was 4pm!! I slept for 10 hours!!!

The sad thing is that I honestly could have slept 10 more. haha

Cleavland or bust!

We are home! (again)

Emily was supposed to get choral hydrate while she was in the hospital to help her sleep better but we had just a tiny bit of drama with getting it. We found a compounding pharmacy in New Albany that could have it made and ready by the time we left the hospital, thank goodness!

We are so glad to be home again too. I love the nurses on 5W but I really love my bed and a few days on the chair/bed and the window bed are enough to kill your back for weeks.

While we were in the hospital this time we got a little bit of good news. We got her appointment for a 2ND opinion to Cleavland and it's in just 2 weeks!!

They have already scheduled a 3 day eeg. Doesn't that sound like fun? Three whole days with her head wrapped up with goop under it all. Her head always gets so hot to so I can not imagine how she will feel after 3 days. She will also be getting a PET scan. We will probably be there for a week.

This is what an eeg looks like.

So hear is to hoping and praying for a good night of rest!

I almost forgot something! This is what we came home to!!

A double rainbow!!

It was so beautiful! Thanks God!! :) Isn't He such a show off! haha!