Privacy

I have made this blog private for the time being.

It is not going to be permanently private.

The reason I started this blog was to connect with other parents going through what we are.

I have learned more from reading about other people's journeys.

I have met some wonderful friends as well.

Our family is going through some things right now that requires privacy. We promise to be transparent as soon as we can.

Please pray for us though.

What we are getting ready to go through is going to be tough and we will need all the prayers we can get.

I plan on updating about Emily very soon. She has been doing lots of things lately that I need to get in the blog for my own memory as well.

Thanks for sticking with us!!

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.



Play date

Emily had a little play date with her friend, Ava, today.

Ava loves Emily!

She squeals when she sees her and wants to touch and hug Emily.

It's so sweet!

I love this picture of them! They look so much like Angie and myself!

Laying on the floor, Ava was holding her hand.

Emily love kisses on her forehead. It's a guaranteed smile!

Ava will be 2 next week! I can't believe how fast these girls are growing up!

This afternoon has not been a great one.

Emily is cutting 7, yes that is seven, teeth! We seem to have the pain under control but for whatever reason it is really increasing her seizures! Today I saw some very strong and much longer than normal ones.

After multiple doses of 3 different meds things seem to have calmed down.

Praying the night goes good. It always gets worse at night.


I just wish there was something I could do to help her while she is teething. :(

Women of Faith Round 2/dr appts

I am leaving in the morning for the Women of Faith conference in Indianapolis. I am so excited and very much looking forward to this weekend.

Most moms can agree with me that you are never really "off". Even in my sleep I am "on". I hear beeps from monitors or feeding pumps. I wake up if she is breathing different. I can hear her paci drop.

It's not a break from Emily that I am needing, I am actually dreading the fact that this will be the first night I have spent away from her.

I need a recharge so that I can be a better mom and a better wife.

Emily is in great hands. Our wonderful nurse, Kathy, will have her Friday until Joe gets off work and then daddy gets to spend the weekend with her. Good thing for her she likes to watch football!

Please pray that it goes well, we have safe travels, and that Emily stays healthy. If anyone remembers what happened last year click here to read.

Emily had a great neuro appt. He is pleased with her progress. I still can't believe the things she is doing!

I finally got some pictures of her and her neuro, Dr. Farber. Don't worry he gave me permission to post these. ;)

We had a time getting a smile out of her.

Finally, a grin!

It really is nice to have a doctor who listens to you and really cares about your child.

We are very thankful to have Dr. Farber in our lives. Wish it were a different reason though.

Emily also had a swallow study done. She is a picky eater. We tried to warn them but they have to add contrast in the liquid and food so that they can see the food going down under the x-ray. They gave her some pink liquid  and she gagged and chocked (new that was going to happen) it was overly sweet and she does not care for overly sweet anything! She aspirated on that which means the liquid went into her airway. They tried a baby food but she would not eat it-told you picky! I did bring one of her favorite jarred food, macaroni and beef. I know, yuck, but she LOVES it! She ate that great and did not aspirate on it.

We tried her regular pediasure and she aspirated on it too.

SO, no liquids at all by mouth for now. Any baby food is allowed and we will repeat the study in 3 months.

Sucks, but not the end of the world. We have work to do. Hopefully as her muscles strengthen so will her swallow.

Love this face!

2nd hip surgery

2 blog post in one day! *Gasp*

Just wanted to update on Emily's next hip procedure.

We go back to the hospital in the morning. She did not get the 1st surgery of the morning like last time so I hope she does not get too hungry.

Under general anesthesia they will remove her cast and recheck her hips by injecting dye and using another arthrogram.

IF her hips show improvement since she was casted 6 weeks ago he will recast her in a new cast for 4-6 more weeks.



My sun bathing beauty!

 I am praying the first 6 weeks of casting has shown improvement!

Now to decide on another cast color. Maybe red, white, and blue!

Please keep Emily in your prayers tomorrow. This is not a major surgery but anesthesia can be hard on any child with epilepsy.

Surgery and home

Emily's surgery went well.

They ended up not actually cutting her hip. he was able to get it back into place by putting her under general anesthesia. He did have to make one tiny incision to release a tendon but that was it.

We got to go home at 2pm! Woo hoo!!



Daddy holding her before the surgery.



Her pelvis is very shallow and when he put the ball into the socket it wants to fall to the back so he compensated by making her cast tight behind her bottom to push up on the back of her hip.



On her bean bag, she is so uncomfortable :(



We go back in 6 weeks, the surgeon will remove her cast, recheck her hip placement and then (if they are healing well) recast for 4-6 more weeks.

It is much harder than I thought, especially not being able to comfort her better. She just wants to be held and snuggled and it is breaking my heart.

Praying we all get some sleep tonight!

Nerves

My nerves are kicking in.

Maybe it is the surgery tomorrow.

Maybe it is the 3 months in a body cast.

I am trying to stay calm but...

We had a great day today. We went to church and she was so loud (happy talking) we had to take her downstairs to be watched

After that we went to the zoo.

Emily really enjoyed herself! She was awake and alert the entire time! I am so proud of her!

After the zoo we all stopped and got ice cream and Emily ate some of my orange sherbet cone. She loves ice cream!

We are just trying really hard to enjoy today. I know she will not enjoy the next three months very much but we will do the best we can.

She got an early b-day gift from her g-ma and g-pa Rollins.

She will be spending a lot of time here after her surgery. She will be very limited in the seating options with such a big cast. Good thing she is little :)

I was telling Emily the other night about her surgery and was telling her not to be scared. That we know it will hurt and it won't be any fun but we are only doing this to make her better and to help make the rest of her life better.

Joe overheard me talking and said "I wonder if Jesus says that about us?"

Emily is not going to understand why her mommy and daddy put in this horrible hot and itchy cast for 3 months. She is not going to understand why she can't have a bath or be cuddled tight.

She is not going to understand that what we are doing IS for the best.

I think that is how we are sometimes. The painful things we go through could be for the best. When we are in pain and hurting from our problems in life we can't see why it is for the best. We can't see past the pain to know that it is making our future with Him better.

I do not know why Emily has to go through what she does.

I don't.

 Epilepsy is way more than enough, then to add this painful surgery and even more painful recovery on top just seems too much.

We just have to trust that it is what is best for us and our family.

Well friends, I just ask if you will pray for my little princess.

Pray for the surgeon and the OR team. Give them the wisdom they need to take the best care of Emily. Pray for Joe and I during the 3 month recovery. It will be trying on our patience I am sure.

Most of all pray for Emily.

Thank you friends!!

good times

Things are still going really well with Emily. It has been almost 10 weeks since her last seizure and spasm.

The side effects of ACTH are slowly going away and we are seeing a very happy little girl.

She is very aware of her surroundings and is doing new stuff everyday. She is lifting her arms up and even touching her face and mouth a little. Her head control is getting stronger and she even tries to correct herself sometimes when she falls over.

I have tons of pictures I need to put on here too.

Emily is having her hip surgery in a couple weeks so please pray with us about that. It will be very a long and painful 6 weeks for Emily. I am praying it goes by quickly.

We have so much to be thankful for right now. We are blessed to have these past 10 weeks, I am praying so hard this continues!!

I know so many kids that are fighting this battle with epilepsy and can't get any relief and it breaks my heart. I just wish we had a cure.

good bye ACTH

That is it! All done!

Emily had her last shot of ACTH yesterday (Tue)

24 hours without it has already made a difference. We have seen more smiles and more of her personality.

Emily started ACTH on Feb 4th and has been spasm free since day 8 of the shots. Almost 8 weeks with no seizure or spasms has been fantastic!!

She is sleeping 8-9 hours at night! Not always straight but when she does wake up usually a diaper change and repositioning does the trick. She takes melatonin and a little valium, we finally found the magic combination.

She is happier all around. The past month or so she began grunting when you did anything to her that she did not want to do, which was pretty much everything. The grunting went down a lot just in one day.

Her eating has not changed either. Many kids go on a food strike when coming off ACTH but Emily's appetite has not changed thankfully because she is only in the 5th percentile of her height and weight. We need to beef this girl up! She looks like a chunky girl but she really isn't.

I am just so thankful she is such a good eater. She is still eating 100% by mouth. Only meds and water in her g-tube. We try giving her water by mouth after each meal but she does not like it and tends to choke. We are working on it though.

We have so much to be thankful for. I know that in a heartbeat all of this can change. I am aware how vicious and mean epilepsy is. I am also aware how strong my little girl is and we are celebrating each day!!

We are praying this continues.

Baby shower and acth

This past Sunday we had my sister's baby shower.  Amy and I are only 19 months apart and have been very close for most of our lives. We have had times in our lives were we went in different directions but somehow we always end up going in the same direction eventually.

Here lately me and Amy have had to depend on each other a lot when it comes to family support. Now that she is having her first child we have more in common too.

Sammy will be here in just a few weeks if not sooner so time to celebrate!!

Me, the soon-to-be-momma, and Stacy (Amy's friend)

Sisters and our nephew, Ryder.

Amy and her mother-in-law, Betty, she is going to be a great grandma!

Stacy, Amy and Stacy's mom, Cathy.

Cathy was such a help. I am so thankful she was there!

Cathy helping Amy with the gifts.

Me, aunt Shirley, and Amy

Aunt Shirley and Amy.

I am so thankful that Emily and now Sammy will have their great-aunt Shirley. I have some of the best memories of her when we were little kids. She reminds me so much of my grandma Jean. I was so very close to my grandma and I miss her more everyday. I know she would be so proud of aunt Shirley for stepping up and becoming the person me and Amy have needed.

It was such a great shower and I can't wait to meet my nephew. He is very loved already! Thank you so much to the people who came and the ones who helped make Amy's day great!

...................

Today was day 32 of ACTH. Day 23 of no spasms and 17 days with no seizures. We are so thankful for every second without those horrible things.

The side effects are beginning to creep up on us though. The swelling is still minimal and her blood pressure has been good. She is just getting very uncomfortable and miserable. There is not a lot of things that she likes right now beside eating and being held. She hates any therapy or anything physical and her muscles are getting pretty tight so stretching has not been fun. She knows that if she holds her breath she gets out of doing whatever it is.

We will begin weaning the medicine soon so please pray with us that it has worked and that we won't have to seen another seizure or spasm again.

ACTH update again

Day 27 of ACTH and things are still good.

Her blood pressure has regulated and swelling is still pretty minimal.

The extreme fussiness was helped with the addition of zantac.

She is still not sleeping well. Some days she will sleep great and other days she will sleep just a few hours all day.

Her appetite has calmed down a little. She is still eating 100% by mouth without any supplement of pediasure. We just started giving her stage 3 baby food last week with speech therapy and she did great and so far she has not chocked or gagged on it.

Also last week in speech therapy she had her first Gerber cheese puff and a grape sucker! She loved both especially the sucker.

She was a purple mess when it was over :)

It is crazy to think something as simple as a sucker can be a great therapy tool. We are teaching her to use her tongue more so that one day she will chew her food and that will also help with forming words one day too.

We are noticing a little more eye contact lately. She does seem a little more alert. I just miss her personality so much. Can't wait for the fog of ACTH to be over.

We are still celebrating...18 days no spasms and 12 days not seizures.

Praying everyday that this will continue once she is off the ACTH injections.

Thank you Jesus!!

another ACTH update

Emily is on day 17 of ACTH injections.

This time around is much different.

The first time she was on ACTH Emily swelled quite a bit pretty quickly and had no increase in her blood pressure or blood sugar.

This time she has not had much swelling and her blood pressure is higher.We have had to decrease her dosage once because of her blood pressure. She is also SO fussy. She can scream for hours on end. We have found a few things that help-a warm bath and eating. We do lots of baths and eating around here!

Here are a couple hospital pics.

Her first non-keto meal, mashed potatoes!! Her favorite now.

Totally wore out! (notice we go no where without her weighted cat and her puppy violet)

She has definitely regressed in all areas. She does not make eye contact and is not looking at things or the tv any longer. Smiles are very few and far between. She is just overall grumpy. We are praying that all of this will come back pretty quick!

A rare grin! Food on her face because eating makes her happy!

It has been a huge change coming off the ketogenic diet. She was on it for 11 months. The first time I gave her liquid Tylenol I freaked out. She has not had liquid medicine for such a long time.

I am so very thankful that we tried the ketogenic diet and if needed (I pray she does not) we will go back on it.

Just to make things a tad bit more complicated, Emily has had a bad uti again (on antibiotics) and it teething.



So I guess I should get to what everyone is wondering.

Is it working?!?!?!?!

Well today has been the 8th day with no spasms!!!

Days 1-5 she continued to have clusters of spasms and then a couple days with none and then 2 days with just a few single spasms and none since.

As far a seizures go we are not seeing an actual seizure the past few days. There have been a couple of "movements" we are questioning but nothing noteworthy.

We keep a daily journal on Emily. It has been a lifesaver! It has every medicine she has ever taken in the front and daily we write down her meds, food, vitals, diapers, and seizures/spasms (or lack thereof!)

Joe suggested we do this in the hospital when Emily was first diagnosed and we have not missed one day since. We can go back and see trends of what meds worked better than other and when she had appts an tests. It has made our life so much easier.

Keep praying friends! I can not begin to tell you how amazing it feels to watch your daughter fall asleep and not have a seizure or wake up and not have a spasm. I watched a video the other night of Emily having a spasm and it hurt to watch.

I have had so many sweet comments and messages and I am so thankful for every one of you! Emily is lucky to have so many people praying for her.

update on ACTH

Emily is on day 8 of her ACTH injections.

She just had 3 whole days of no spasms, only seizures, and then this evening she had a couple single, weak spasms.

It was a heart wrenching feeling.

We are pumping our little girl full of steroids that make her cry, swell, elevate her blood pressure and blood sugar and make her have an insatiable appetite.

She screams for hours on end. It is hard to not be able to help her.

She is just starting to swell a little and her blood pressure is just starting to climb, we are watching it very closely.

Her very loose muscles are getting increasingly tighter, we stretch her daily to combat this.

All of these things are what we are doing in a desperate attempt to stop her infantile spasms.

Infantile spasms are that bad.

Emily is having seizures but only when she is falling asleep or waking up and they are pretty manageable.

I am praying so hard that all of this is worth it.

It is hard on Joe and myself also. We are stressed and tired. Our only nurse has been off all week because of a back injury and like I said before we have no one else that knows how to take care of Emily so it is just us.

Joe had a death in the family and had to travel out of town for the night so it was just me and Emily. I was never so glad to see Joe come home.

I am trying so hard to pray and be faithful to God and trust that His will is best for us. I am not going to lie, it is hard. I know that God loves us and He loves Emily more than we do. I know that. Some days I just don't feel that.
Some days I feel so incredibly alone.
Isolated.
Scared.
A sweet friend sent me a psalm she has been reading a lot lately and I have read it and reread it. Psalm 27.
Also 2 Corinthians 4:16-18 has helped.
16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.


This life is temporary.

I can not wait until the day comes when I can meet Emily in heaven and she will walk up to me and hug me and tell me she loves me.
One day she will be healthy and without seizures.
One day we WILL defeat epilepsy. It will not control us forever.

Until then we will fight.

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.



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!

Momma's weekend

I am leaving Friday morning to go with a group of women from my church , along with Emily's nurse Courtney, and we are to the Women of Faith conference. 

I have been several times before and it has always been an amazing experience.

I have to be honest though, this is my very first time to spend the night away from Emily and I am super nervous about it.

Emily's grandma and grandpa (Lonnie and Brenda) will be coming down Friday evening to stay the weekend to help Joe out.

Thankfully since she is still on the ketogenic diet I can make her meals out before I leave so Joe does not have to worry about that.

I know she will be fine with them I just think it is more me that I am worried about. I hate being away from her and since she has been diagnosed with epilepsy I don't think I have spent more than a couple hours away.

Please pray for Emily and that she will have a boring uneventful weekend. Pray for safety for everyone traveling to Indianapolis.

I am looking forward to sleeping straight through the night! I may end up trying to put a paci in someones mouth in the middle of the night though. :)

I am also really looking forward to just spending some time with my Jesus. It can be really hard to focus on Him while I am doing everything else with Emily. I know this is an area I need to work on. This will be a good weekend for everyone.

Also the DME guy is coming out tomorrow so we can pick out a stroller/wheelchair and a shower chair for Emily. It will be an interesting meeting because I do not want the chair he thinks is best for Emily. I do not want a chair that looks like a wheelchair, not yet. She is only one and I know this sounds vain but they have so many other medical strollers that will work.

shhh I am whispering this-no seizures yesterday!!! yay.

Have a great weekend everyone!!!

raw

Seizures returned tonight.

sigh.......

Emily had gone over 3 weeks with no seizures, just lots of spasms.

It was nice. Nice to not have to count seizure after seemingly endless seizure.

I got to get out of the house for a day, I almost put my guard down. Almost.....

I watch Emily like a hawk. Every movement every twitch and eye flicker. I watch other people kids for seizures. I look at kids in the grocery store afraid one of the will have one.

It sucks. Their is no other way around it. It's not fair.

It's not fair to watch her not develop with other babies her age. It's not fair that she slept through her birthday party because she could not process all of the noise. It's not fair that I have to sacrifice any sleep I might get to watch her because the seizures have screwed up her sleep cycle and during the day she has therapy 3 days/week. Today , even with a nurse, I got woke up 3 times with phone calls for appts, testing, insurance.......

It's not fair that people have removed themselves from our lives. I have very little family support. Those who do help us financially and emotionally we are incredibly grateful for and they know who they are. Our church has been a HUGE source of help, honestly we would have lost everything without them.

Others are just too busy with their own lives. I get it but it is still just not fair.

I am not good. If you ask and I say yes I am lying. Things are ok, I am just ok. Most day are good enough and we do get by. Some days are easier than others. Days like today not so much. One day I will be good. I know I will, just not today.

I know to some I sound like an whiney ungrateful brat but this is how I feel. My emotions are raw and I am just being honest. Things tonight are not ok.

Tomorrow is a new day blah blah blah I know but right now I can't stop crying. I hurt for Emily. I hurt for me and Joe.

45 seiuzres in and I am praying they will stop soon.

I debated posting this. It was very theraptic typing it all out. Maybe it will give someone else the nerve to be honest with themselves too.

bad blogger

Sorry I have been absent the past few days.

We have just been trying to regroup and figure out why Emily started seizing and having spasms again.

We are pretty sure constipation was to blame for her seizures. Once we got her to go on Sunday the seizures stopped and we have not seen any since then. The spasms are a different story.

They too started when she got constipated but they have not stopped. At times I think they are getting shorter and less frequent and then last night happens.

I ended up giving her medicine to stop her spasms in the middle of the night. It felt like they were going on forever and the poor thing could not fall asleep.

So Emily's nurse is here and I am going to go to bed now and try to catch up on some much needed sleep.

Thank you all for the thoughts and prayers!

10,080

10,080 sounds like a strange way to title a blog post huh?

10,080 is a pretty large number.

To most people 10,080 is a pretty meaningless number.

To us it means a lot.

To us it represents many things.

Mainly it means minutes in a week.

10, 080 minutes in one week.

One week that Emily has been seizure and spasm free!!!!!!!!!!!!

So see why 10,080 means a lot!

For one week we have been able to laugh more, rest better, and breath!

Emily acts like she feels better too!

I pray this continues!

Thank you all so much for all of the prayers!!

boring, sunshine and butterflies!!

Things are still going great!

Emily made it through day 5 of no seizures or spasms!! Woo hoo!! PTL!!!

I also found out that her medicaid is going to pay for the $1100 co-pay on her lamictal another WOO HOO!

I still can't wrap my head around an $1100 co-pay. How do those people sleep at night? We have great insurance too. So now we have 2 insurances, that takes a lot of stress off of us!

Praying for more boring, sunshine and butterflies!!!