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!

Not the life I chose.

As I sit here watching my girl seize I am brought to tears.

In spite of valium, clonazepam, ativan, clobazam, and phenobarb (some multiple doses) she still seizes.

This means Joe and I sleep in shifts and more than likely we won't be going to church in the morning.

I have a very close knit group of lifelong friends on facebook in my infantile spasms group and tonight I learned of a sweet girl at the end stages of her disease.

Yesterday, I heard of a sweet little boy that passed away, most likely, due to a seizure in his sleep.

Brave Liam is still in the hospital on bipap now. He has been on a ventilator for some time now. His last MRI shows atrophy in his brain stem.

These families have to make horribly painful decisions for their children.

I did not choose this life, nor do I want it. I would do anything to heal my daughter.

I don't want to have my family so fractured that I go a year without seeing the people you think would be there for you the most. I don't want Emily to go the rest of her life not knowing some of the closest family members.

I don't want to have so many people in and out of my house during the week. I don't want to know all the best medical supply companies.

I don't want to have to have a neurologist, cardiologist, opthamologist, and a nurse case manager.

I don't want a feeding pump on a pole next to my daughters crib.

I don't want to have to drive 2 hours to have Emily fit for a wheel chair.
I don't want to have to fight over a parking space in front of my apartment and I don't want the handicapped tag checked with the word permanent that comes with said spot.

I begged and pleaded for this cup to pass by. God wanted us to have all of this. I don't know why, I may never know.

What I do know is God is the same before all of this and He will be the same after.

I run my fingers through her fine, wispy hair and I know she is what I want.

I love her more than I ever thought possible.

Some days are harder than others. Today is hard. Today I am mad at the crazy parking space lady. I am mad at selfish family members who I will never be able to change. I am just mad.

I have that right.

So, for now I will cry and vent and cuddle with my seizing girl.

Tomorrow is a new day and it may be better.

I hope.

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. :(

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.

Why we fight

Yesterday I told you about my online support system.

Today I will show you why we fight.

This video was created by Karen. You can check out Karen's blog about her beautiful daughter, Charli. Charli also has infantile spasms and has had a hemispherectomy(half her brain removed) to stop her seizures. Thank you so much Karen!

These kids are strong. So much stronger than we are.

Everyone of these kids have been effected by infantile spasms or epilepsy.

They are my heroes!



Make an on-line slide show at www.OneTrueMedia.com

my online support

“In the End, we will remember not the words of our enemies, but the silence of our friends.” Dr. Martin Luther King, JR.

That quote it so true and if you ask any parent or caregiver of a child or adult with disabilities they really understand.

Living with someone or caring for someone with chronic illness, disabilities, or special needs can be very isolating.

People don't know what to say so they don't.

Joe and I personally have experienced this. We have had family that won't call for months on end and when they do it is short and uncomfortable. We have lost friends and became very distant with others.

It is the nature of the beast.

I cannot tell you how valuable my epilepsy/infantile spasms support groups have been. In the beginning I was quite hesitant to join and talk. It is odd telling complete strangers personal things. Now they are family. We have a common bond that you can only understand if you have a child that suffers as ours do.

While most of us have never met in person we hurt for each other and rejoice with each and every tiny miracle that happens. When one of our kids is sick or having a bad day you can bet someone in the group knows and before long we all know and can pray and send well wishes asap.

My support group understands my fears and does not judge because they too have the same fears and understanding of how fragile our children's lives are.

My life has become consumed with seizures. All day everyday. Emily has them every. single. day.

I don't say that on my blog or update my fb status to say "Emily has had another seizure" but she does. We have had really good days but she cycles, she is currently on the bad part with lots of seizures.

If you or someone you know needs a group to join you can start out looking on yahoo groups, that is what I did. From there I found other parents on facebook and one of them started a private facebook group.

Some posted on facebook a list of what not to say and what to say to parents of special needs kids. I don't agree with all of it. Most people just don't know what to say. This is the what TO say list. You can go here and read the whole page it you would like.

- I’ll be over on Saturday to help do laundry/wash dishes/scrub floors!

- I don’t know what to say to you, but I love you.

- How are you doing? (and actually listen to the answer)

- Quote from Elaine Hall: “How Can I Help?”

- Just wanted you to know I was thinking about you.

- I just made an extra dinner when I was cooking for us, can I drop it by now?

- I know you had an appointment yesterday, how did it go?

- Want to drop your kids off with us for an hour or so? (Because people are afraid to take care of my kids, when this happens, it feels like acceptance and support.)

- I’m on my way to the store, want me to grab you some milk or bread?

- Need any help at bedtime with the kids?

- I’m coming over to watch the kids right now for an hour so you can take a nap.

- We’re on our way to take care of the yard work.

- Sounds like you’re doing a great job.

- Here’s some things that worked for us. (preferably from people who “get it.”)

Mine and Joe's own that we would like to add is- Can I come over and learn how to help take care of Emily.

We would love to have someone be able to help us out every now and then. Besides Courtney, our nurse though the agency, we do not have one single person that can take care of Emily by themselves.

We need a break sometimes and we need to make sure that we take time to take care of our marriage.

The divorce rate among families with a child with special needs is 80-90%! I know that the divorce rate among "normal" couples is about 50% but add a child with lots going on and you are about guaranteed a divorce.

It is incredibly important to work on your marriage. I am so thankful to have such an amazing husband. I honestly know I would never in a million years be able to do this day in day out with out Joe. We fight and we are not perfect by any means but we all are Emily has. She needs us to take are of her. We need each other as well.

Will you please pray for my online support group. They have helped me more than they will ever know. We have a few kiddos right now that are pretty sick and having lots of seizures.

I love you my epilepsy family! As Keely put it-"your my glue!"

Whats new?

When I started this blog I did it so that I could document Emily's life.

I am not great about keeping up her baby book, plus there is just not a baby book out there that would work for us.

I have decided that I will print my blog out (eventually) so I can keep all of these memories. So some blog posts you might be boring to you. :)

I just wanted to update what Emily is doing lately.

Emily is 19 months old now! I can't believe she will be 2 this June.

She is 21lbs and 29 1/2 inches.

She has 4 teeth. 2 top, 2 bottom

She loves her puppy Violet.



Talking to Violet



She will talk to it and laugh at it! It is programed to say her name and favorite things. She loves the bedtime music the most.

Emily loves anything with music! We keep musical toys all around the house to distract her when she gets crabby.

She likes watching tv now too. Most recently it is the Little Mermaid and she just watched Aladdin the other day and liked it too.

She is tolerating therapy much better.

We have seen quite a bit of improvement the past month. Most recently she is setting for about 30 seconds unassisted.

This is the best she has done! The boppy is behind her to catch her is she fell but she put her hands down herself and lifted her head up!

We are so proud!

We started Speech therapy 3 weeks ago. The therapist is amazing! I have learned so much from her already and Emily has already shown improvement with eating since she started.

Speaking of eating....Emily is eating, yes I said eating, 2-3 of 5 meals per day by mouth!! This is HUGE!!!

Prior to the diagnosis of IS Emily was breastfed and ate homemade baby food great. We did not have any problems at all.



Big bite!



After we weaned the ACTH and started seizures drugs on her she slowly stopped eating. That is when the g-tube was placed.

The ST taught us how to get the spoon in her mouth without Emily gagging or pushing it out with her tongue. Emily has discovered that she LOVES to eat again! I am so thankful we have found something new that she likes.

We have even seen some hungry signs lately too. You could never tell she was hungry but once she started eating we are seeing signs again!

Emily's seizures are pretty stable. By stable I mean she is having them daily but they are not clustering out of control often. I think once the past 2 weeks or so she had a seizure cluster that required extra meds to stop. They only time she is having seizures is falling asleep or waking up and if we can get to all the way asleep or fully awake she stops.

 The big issue we are having now is her spasms. She has hundreds of spasms daily. Spasms are seizures too. Most of the time they are bad but at least once per day she has a really hard cluster and the really hard ones lead to other seizures so we have to get rescue meds in her fast to stop the seizures from starting after the spasms have stopped.

It could be a lot worse but it could be A LOT better. We also realize this can all change in a moments notice.

She has been very alert since we weaned her topamax. She watches us when we talk to her and looks for us if we call her name.

We are preparing as much as we can for her upcoming hip surgery. I will update that later.

I am so thankful for good days. I cherish good days.

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!!

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!



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 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!!



love

It has been pretty rough around here the past few days. Emily is seizing a lot in spite of lots of rescue meds.

There has been no changes at all with meds or her diet. She is still on the ketogenic diet and I have limited her food choices to help control it as much as possible.

We check her blood sugar and ketones and they are the same as they have been for weeks. I just don't get it.

There is a list of things you think through when her seizures flair up. Is she sick (cold, temp, runny nose), teething, rash, infection, pain, constipation, diarrhea I drive myself nuts trying to figure it out. By the way she has none of those.

The crazy thing is she will have a huge seizure and then look at me and smile. It is like she is reassuring me.

The other night Joe was saying goodnight to her and she just smiled and stared at him. She adores her daddy.

This is what I woke up to yesterday morning. This is after a horrible night of seizures too. She woke up so happy.





She is amazing.

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.

Not too bad

Things here are going ok. Emily had over 2 1/2 days with no seizures, just spasms, but they returned.

They are much much fewer and seem to be weaker.

Emily's seizures are not always what they seem. Not all of the things that look like seizures show up as seizure activity on an eeg. There are subtle differences that we are learning over time. Most of the time when she has an actual seizure she is dazed and very quite and you can't bring her out of it. The other thing she does that looks like seizure activity can be stopped by blowing in her face or doing something else to get her attention and she also does not get dazed and still will interact with us.

She is starting to hold her head up pretty consistently with the exception of seizures and when she is sleepy. She does not require max assist to set up, she still requires assistance but I think that within a few months she may be pretty close to setting by herself.

She is getting stronger everyday and her vision has improved tremendously. Some days are better than others but it is amazing to see her seeing things, she looks with this amazement and I love it!!

We got to go to church as a family for the first time in months. It was so nice to see everyone and Emily did great. She got overstimulated with worship music but we set in the front row ( you know the closer to the front the closer to God right? haha) so I think next time I will keep her out until the last song is on and slowly get her used to it. After church our friend Rebecca took us out for lunch and Emily still did great. I was nervous because she has been quite vocal lately but she sat quickly and watched football on tv.

Speaking of football, we love college football, specifically Louisville Cardinals. Eh, not the best team and they did not beat the rival team, Kentucky, but we still love them.

 We got Emily ready for the game!

On the sleep front: she is still not sleeping much at night, hence the blog post at 2:30am. Sucks but we have a nurse 4 days a week so I sleep then. I literally can sleep anytime of the day. If you knew me prior to having Emily you know that I LOVED sleep. I looked forward to sleep. I bought a 1200 thread count sheet to make my sleep better.  Oh well she is worth it.

It was so nice to have Joe home for a 3 day weekend. We got real spoiled and last night I was putting Emily in her pj's and Joe was kissing her good night and she almost started crying because he was leaving the room. It was the sweetest thing. She loves her daddy. I am so thankful Joe is so helpful, I know a lot of dads that are not or they work out of state or they just are not around. It takes a very strong women to raise a child with so many needs alone. I do not take a single moment for granted.

Hope you all had a wonderful weekend.

still not good

After Emily's most recent hospital stay she had a couple of good days but it has went right back to bad again.

Everyday she was going down in seizures by at least 50% and then Wednesday night she started and has not really stopped. She seized pretty much most of Thursday so I am holding my breath for this morning.

I am just so tired. So tired of seizures, so tired of being tired. I feel like I can't sleep because she has started having seizures in her sleep now.

It is hard because when she was having a couple of good days she could see so much better, she was so much stronger and was awake a lot more through the day. I makes me so sad to see her start seizing again and stop doing those things as much.

I did get a couple of pics of her holding her head up. She was not happy about it but she did it.

 She was watching football. It is the only thing she will watch on tv. Makes daddy proud!

 I moved her to see if she was really looking at the tv and you can see she leaned her head back to see it.

She is done holding her head up. Time for sleep!!