cousin and cast adjustments

Things are going pretty good with Emily. No seizures or spasms in quite a few days. I think the problem was teething pain. Once we realized how much pain she was in we switched some meds and tada!

We had a great Memorial Day weekend.

Sunday Joe's mom and step-dad came over for a little cook out.

Then on Monday Emily met her cousin, Zoiee, for the 1st time. Zoiee is such a sweet and smart little girl. She just loved Emily and Emily loved the attention!

We really enjoyed our time with Joe's step brother, Jeff, his wife, Megan and Zoiee. Wish I would have gotten more pictures though.

Emily's cast has been irritating her g-tube lately. She has lost a little weight and settled down into her cast and the cast is not pushing up on her g-tube when we set her up to feed her.

We took her to ortho and the cut it down a little bit. I was afraid she would hate the cast saw but it actually made her laugh!



Before cutting it down. This is with her laying down, so imagine setting up!




This is after. SO much better. She was so happy to get to eat again!



Less than 2 weeks away from her next surgery. I can not believe how quickly time has flown by!

They will remove the cast under general anesthesia, recheck her hips with a dye injection, and if it shows improvement they will recast her for 4-6 more weeks. I am praying that the recast her because I really want this to work!



I love this laugh!



We have also a new nurse. I won't go into details but our last nurse that we had for over a year is no longer with us. Our new nurse is fantastic! From our past experience we chose to only have her 2 days per weeks, that is enough for us for now. I am so thankful to have found a great nurse with Emily now that we can trust!

Still abnormal BUT........

Emily had her 1st post ACTH eeg. It was sleep deprived so that we could catch her falling asleep and then waking up.



Slap happy from keeping her up until midnight!



Love this smile!

She did great! She was not a happy camper when I woke her up at 4am (neither was I).

They hooked her up to the eeg and we wait. I am horrible about staring at the eeg reading the whole time. I can't read them but I can sort of tell the really bad stuff (I did not see that).

Normally you wait a week to get results but her fabulous neuro just happened to be there and he looked at it for us and said....

It is still abnormal (slow background and some spikes) but no seizures and even bigger NO HYPSARRYTHMIA!!!!!!!

This is huge!!!

Emily, at her worst, had over 200 seizures and hundreds of spasms in one day. Completely uncontrolled.

While I still long for her to have a totally normal eeg one day, I will take this!!!

Thank you Jesus!!!!

I promised pics last time so here are a few to hold you over. :)



Emily and her new cousin Sammy.





I had to tell Emily that she could not eat her baby cousin!





You can tell how much shorter her left leg is. It is up and out of socket :(





She is saying "Thanks Kathy for my new chair!" ha she does really well in it. I need to get a newer picture, her head control has already improved so much!! Thanks so much Kathy!!!





Loving on grandma!

She has become very attentive when you talk to her and she smiles at everything!

Emily loves the sound of a clicking pen and loves going from dark to light.

I love that she loves things, no matter how small.

 

We have so much to be thankful for and thankful we are!

 

Our God is the same in the good and bad and we praise Him the same!!!!

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.

Get your purple ready!

Saturday is Purple Day!

This is from the website..Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. In 2010, people in dozens of countries on all continents except Antarctica worldwide participated in Purple Day. With your help, Purple Day 2011 will be even bigger!

If you go to the website you can see many ways you can help.

If you chose to wear purple don't stop there, talk about it! Tell people why you are wearing purple, tell them Epilepsy affects over 50 million people worldwide or approximately 1 in 100 people. That's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. Tell them epilepsy keeps getting research funding cut.

Look up your local epilepsy foundation and see what you can do to help. Do a fundraiser, involve your kids, co-workers, family or school. Educate yourself on what you do if you witness a seizure epilepsy.com is a great site.

There is SO much information out there!

This is last years purple day picture, my goodness how things have changed!

Emily has 12 more days of ACTH shots left. She is doing very well with the wean. We are seeing a little bit of her personality each day. She is still not sleeping well but that is not new :). She woke up yesterday at 4:30am but she was so happy and smiley. I have missed those smiles so much!

My cousin got Emily this shirt from the facebook page polkadot whimsy, isn't it cute!

It has been almost 6 weeks since Emily's last spasm, I can hardly believe it. I get scared saying that, afraid that "they" will return. We don't know if or when they will ever return but we cannot live our lives in fear of "ifs and "whens" so we are celebrating Emily.

She is an amazing little girl and I am lucky to be her mom.

beginning to wean

We have begun to wean ACTH. We are holding our breath, praying and crossing our fingers.

It will be a slow process, about a month.

Since being on ACTH Emily has definitely regressed in most areas. She does not open her eyes all the way, her cvi has really gotten worse,she stopped smiling and being happy in general, she does not tolerate ANYTHING, and her sleeping is still crappy.

The only things that got better are eating and seizure control. We still have not seen any seizures or spasms.

She has been doing a lot of grunting lately. We took her to the pediatrician just to make sure it is not something respiratory and it was not. They said it was seizures-HOWEVER- I can stop what she is doing and the rule of thumb is if you can stop the movement it is most likely NOT a seizure. I called her neuro and he agrees and we have an appointment on Tuesday. ACTH has so many side effect the grunting is probably just one of them. At least I am praying so.

We did see a smile two days ago! It was just one but she has had at least one per day since we began weaning.

Loving this little grin!

Please keep praying that the ACTH is working and will continue to work!

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!!

Good days

We have had several good days now. I think we are at 5 or 6 really good days! Thank you Jesus!

By good I mean little to no seizures, minimal spasms (but still there) she is alert, responsive, visually tracking us and toys and babbling like crazy!

She has been such a joy the last week! I don't think she has really cried much either. She is sleeping at least 5-6 hours at night. Most nights she does not go to sleep until 12:30 or 1am but I will take it!

Previous to our really good week she had probably some of her worst weeks, hence the no blogging.

She was seizing like crazy no matter how much meds we gave her. You could tell she was just so out of it and "off". Long story short-low grade temp, strong smelling urine, extremely fussy and increased seizures= massive urinary tract infection (e coli to be specific) Things got worse once we started the antibiotics and I was so nervous because she has never needed them before so I did not know how she would react. Just a couple days in and she was doing SO much better.

We noticed the weather forecast was calling for mid to upper 70's last Friday and Joe and I really wanted to get some family/18 months/Christmas picture taken so we asked our good friend Rebecca to take them for us. Also Joe's dad, step-mom (Brenda) and his grandma Mae were coming in that week too so that was a bonus. They were originally coming next week to celebrate Thanksgiving but Brenda and Lonnie are going to be grandparents again and they were cutting it close to the due date. Can't wait to meet Ava!

We got some great pictures! Rebecca is so talented and I am so thankful to have these pictures to look back on. I don't think she understood how grateful we are! To capture such great pictures on a beautiful day and one that Emily was feeling great, we will always have these to look at on bad days to remind us that it is not always going to be bad. Thanks again aunt Bec!! You can follow her here on facebook.

So I will leave you with a few of the pics! Have a blessed week!



One of my favorites!



This color was amazing!



She amazes me!



slacker

I am a blog slacker! I admit it.

I, sometimes, just get tired of saying the same things..seizures, seizures, seizures....

So since her last hospital admit Emily has been ok. Seizures daily but they are manageable.

We got her home oxygen and oxygen saturation monitor delivered last week. Getting those, hopefully, will keep her out of the hospital more during cold and flu season. The main reason she goes in the hospital is because we have to give her so much medicine to stop her seizures she gets sedated and needs to be monitored. This way we can throw the monitor on her and feel more confident about staying home and avoid a chance at her getting sick from germs in the hospital.

I am not holding my breath but she is SUPPOSED to get shower chair and new medical stroller today. Once I get them I will post pics.

Right now it has been 2 1/2 days since her last seizure. She is still having spasms this whole time but no seizures that I have seen. She even slept last night from 10:30PM-4AM.

We did get to go to church on Sunday. I was nervous because we, along with two other men, we asked to speak on the topic of suffering. So, yea that was hard. In the end I felt good about letting my church family know how we feel. We feel so blessed to have them care so much about us!!

This was also the first time I have let anyone watch Emily at church. During first service my friend, Angie, just set in service and held her so I could see her the whole time. During 2nd service she took her down stairs and said if she needed me she would send someone up to get me. About half way through someone stuck their head in and motioned me to come. When I got down there she was crying so hard and as soon as I took her she stopped. We have been having some separation anxiety issues lately especially when she wants comforted. I hate that others have so much trouble calming her down BUT it is a normal 17 month old behavior :)

I was afraid Emily would just shut down but she did very well with all the sounds and one of our friends, Chasity, even got her to smile. That is a pretty big deal because normally she will only smile for us.

Later that evening we had a visit from Emily's great-aunt Shirley and Emily really enjoyed being loved on and started to fall asleep in her arms without her paci! Emily loves her paci :)

It was a fun but busy day and I am so proud of Emily, she was such a good girl!

She had her cardiology appt yesterday and it went well. She still has a "very tiny" pvo (hole) in her heart but he feels it will be just fine on its own. She also has an innocent murmur because she has false tendons, he described them as like "pumpkin guts" and when the blood flows over them you hear an extra sound. He is actually the only one to ever hear it. So we don't have to go back and see him for 1-2 years!

Yesterday I changed Emily's g-tube! I know this sounds silly but I was very nervous and I made sure Emily's nurse was here but I did it all myself so that I would feel comfortable in the future. I piece of the tab you use to open it broke off, it was still usable but it would have to be changed soon anyway.  It was easy and now I don't worry if I have to do it again.

Sorry for the lack of picture, I need to download them from my camera. I promise more next blog, whenever that will be :)

general update all things Emily

I just thought I would update everyone on Emily in general.

I talk about her seizures more than anything and it gets easy not to talk about the other things she has going on.

Lets get the seizures out of the way first.

She went 7 days with no seizures and had a 50% reduction in spasms. On the 7th day her spasms increased and she began to seize again. This time it only lasted 3 days and only 2 of those days required minimal extra meds to control them. Right now she is at almost 36 hours with no seizures and her spasms are super short and very weak and are down about 50% from what she normally does.

We changed one of her her fat sources on the ketogentic diet from canola oil to butter and we have seen an improvement with seizures. Don't know if it is just a coincidence or not but I will take it!

Developmentally she is right around a 4 month age level. I look back at video of her at 4 months old and she is doing things all over again. She is moving so much while she is laying down. She wants to badly to set up and I think she will get there soon! Her head control is getting pretty consistent, it of course is weak when she is tired but she is doing really well with it.

Emily has always been a clingy baby but lately it has gotten worse. She knows who she wants and will let you know if it is not you. Sometimes she only wants me and other times she just wants her daddy.

She has never liked any type of seat. She hates everything we have tried so she sets on the couch with us a lot on her boppy with a pillow under it to set her up but the last couple of weeks she just gets fussy and won't take her passy and it gets hard to hold her all of the time. One day when she was not happy I just set her up on the couch next to me and she was happy as a lark! Now that is all she wants to do. I think it is great because she is tolerating setting up and it is making her core stronger.

Her vision is getting so much better as well! Before I would have to say something to get her attention but now I can just walk in the room and she smiles because she sees me and recognizes my face. This makes me very happy. I have noticed her looking at the computer and the ceiling fan most recently too.

She still does not have teeth. At her most recent ped appt she said not to worry about it until she is 18 months old (she is 16 now) and then she would get x-rays. We have seen her teeth on an MRI before so I know they are there, just don't know why the won't break through.

She has no desire to eat ANYTHING. I try but she acts like I am feeding her acid. She especially dislikes water. She always has. Thank goodness for a g-tube. :)

We still have a long way to go with her sensory issues. She completely shuts down when we go out. Her pediatrician does not know her well, thankfully we don't go often, so last week she looked at Emily, who just got finished crying her self to sleep, and she asked if she looks at things or me. I am sure she did not believe me when I told her everything she is doing but I can't make her like going out and I can't make her tolerate a million sounds and smells at one time. We are working on it.

Last but not least...sleep.

Clearly there has not been an improvement (hence the blog at 4AM)

When she we seizure-free for 7 days I was beginning to get her on a better schedule but one seizure can ruin all of my work. Right now she is laying next to me kicking her legs and "talking" to me. I am giving daddy a couple more hours and then I am going to bed.

I could go on for days but I will stop.

I have another blog to post tomorrow. We have a friend ,Christy, who is doing a small fundraiser for us. It is more for locals but I will tell everyone the details tomorrow.

lot of bad, little bit of good

Since my last post Emily has had some pretty bad days.

Her seizures just went nuts.  We made it through that rough patch with only one phone call to neurology, no hospital visits this time. We did get very close one night though.

I have had a very hard time ,emotionally, lately. I can handle having a child with disabilities, special needs, developmentally delayed-whatever you like to call it. I can not handle that fact that I have a child with very serious medical needs. It is hard knowing that her life if so fragile. Every attempt to stop or even slow seizures have failed and we all know that 100-200 seizures per day plus her 10+ clusters of spasms she still has daily is not good for her.

I have mentioned before besides our nurse who works 4 days/week we have no one that can help us take care of Emily. There is not one single person who can care for her if something, God forbid, happens to Joe or myself. I know that sounds morbid but that is something we have to think about. Don't get me wrong, we have a couple family members and some church members that have and continue to help us out financially and bring us delicious meals or bring over groceries. We are incredibly thankful for all of the assistance we get! We love getting cards in the mail or phone calls to check on us. Those things we truly appreciate!

Some days, especially bad seizure days, it is hard to deal with all of our daily responsibilities on top of everything with Emily. Dishes don't do themselves and the laundry just does not jump into the washer just because we are having a bad day. Life must go on.

So now that we are done with the bad stuff and complaining.... on to the good!

Emily has not had a seizure since Thursday at 2am. When she has seizure free days she does so much better with holding her head up and assisted setting.

She had her 15 month check up (it was actually 16 months though) and her head, height and weight at all way under normal but proportionate. The only thing we are watching right now is her hips. Emily legs tend to fall to the right when she is laying flat and she is going to be prone to dislocation so we have to try to keep her hips rotated to the left more.

Trying really hard to set up



Giving her PT the "get off off me" look.





Holding her head up so much better





Emily loves her sensory cat!! It has 3lbs of rice in it to help with her sensory issues.



Thank you Colin for the wonderful gift!!



She loves it!

Praying that this seizure-free streak will continue!!



seeing is believing

Emily had her first session with her vision therapist yesterday.  We have enrolled Emily into VIPS  (visually impaired preschool) from Louisville. Two of the sweetest ladies came out and they were so good with Emily. She really liked them too. They will come and see Emily at home once a month and then we can go to the school every Wednesday for a mommy and me type class, plus she will be able to socialize with other kids and I will get to meet some other parents going through similar things.

Emily's friend Colin goes there so we will see them too. If you have not gone lately go check out Colin's blog, he is doing some great things!

They brought her a bag of goodies that she just loved!

One of which was a gold shimmery pom pom. I was speaking with one lady and the other was playing with Emily in the floor. I looked over and Emily was holding the pom pom BY HERSELF!

She held it for several minutes too. Emily has never held a toy!

She was looking at their faces a lot too. It is amazing what happens when you don't have seizures for two days.

Yes, she is still doing great with her seizures. It has been almost 48 hours since her last one. She is still having spasms though.

I could not be more proud of her.

Here is a little video of her holding the pom pom.

 This is from the other night after her bath we cuddled on my bed and she fell asleep, she looked so sweet.

Things may not be good everyday but on the good days I will celebrate!

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.

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!!!

epilepsy walk

We participated in the Louisville epilepsy walk today and it was great! It started storming first thing in the morning which turned out to be a great blessing because it kept it cooler for a while longer. Once the sun came out it heated up pretty quickly though.

The walk itself was only an hour and we cut if short and went to the cool exhibits until the awards ceremony.

Our team consisted of 25 walkers and we raised over $1000!!

In total the walkers raised over $50,000 for the foundation!

We had a really great time seeing lots of our friends, family and even several nurses from the hospital.

Thank you all so much for spending your morning with us and raising so much money in honor of Emily!!

We love you all !

Emily ready for the walk. I tied a few fans to her stroller to keep her cool.

A few of Emily's nurses from the hospital. They are the best!!

Lots of people were there for Emily!


Britt and Stacy both came too!

Jakob kissing Emily. He is such a sweet boy.

Group picture! Well partial, several of our team had to leave.

Emily's nurse made these ribbons for everyone!

Emily with Joe's mom, step-dad, and brother.

That is her shirt on the front of her stroller. That was the smallest they had!! haha

Joe was playing!

Haha!!