thankful

No, Emily did not have a seizure-free day and she did not do something new today either.

What she did do was not fuss (too much) and enjoyed going outside for over an hour (with out shutting down). She is also laying on the couch next to me smiling and laughing at everything.

On days with endless seizures or endless crying is it easy to forget the good days.

                                                         

  I never want to forget these moments.

     

       I never want to forget how she loves to cuddle or how she loves when I kiss her cheeks until she falls asleep.

                

 I never want to forget her sweet dimple just under her right eye that shows when she smiles.

Or the dimples on her chubby little hands.

She is the light of my life and being her mom is the greatest gift I have been given.



Most days are not easy and not so full of joy but today is.

Today I am thankful and full of joy and today is what matters. Tomorrow is not promised to us and yesterday is the past.





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.

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.

grandma

Today is my grandma Jeans birthday. She passed away in July of 2007, she was 81.

I was very close to my grandma. For years my mom, sister and myself lived with her. I even slept with her in the same bed. She loved to tell me the story that when we did not live with her and I was just old enough to stand I would scream and cry out the window when she left until she would come back and get me to stay the night with her.

I was defiantly grandma's girl.

 Grandma knew she was dying. She had cancer and did not want treatment. She was ready to go.

The last time I saw her was just a couple days before she passed. She was in the hospital and my aunt Shirley was arranging for hospice to bring her out to her home.

I came into her hospital room to visit not knowing that was going to be the last time I saw her.

She knew otherwise.

Some how we managed to have a few minutes alone. She held my hand and with tears that I had never seen before she told me how proud of me she was and how much she loved me and that she was so thankful that I had Joe and she knew one day I would be a great mom.

I remembered a conversation we had not too long before then about baby names and she said she loved the name Emily. I promised her if I ever had a girl that is what I would name her. She told me she was not scared and that she knew where she was going and that she could not wait to see Jesus .

Our conversation was not long but I can still remember every word. I remember how her skin felt and that the room smelled like her perfume. I have so many wonderful memories of her.

She loved (borderline obsession) lotion, perfumes, candles and self tanner. She collected sandals, purses and coats. No matter how many she had she always needed more. She never wanted to dress like an "old lady" and always acted much younger than she was.

Her death was really hard on me because she always said she just wanted to see my kids. I had a really hard time conceiving so that is one thing she did not get to see.

I miss her so much and not a day goes by that I don't wish she was here. Things would be so different.

Happy birthday grandama!!

You can shed tears that she is gone,

Or you can smile because she has lived.

You can close your eyes and pray that she’ll come back,

Or you can open your eyes and see all she’s left behind.

Your heart can be empty because you can’t see her,

Or you can be full of the love you’ve shared.

You can turn your back on tomorrow and live only for yesterday,

Or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone,

Or you can cherish her memory and let it live on.

You can cry and close your mind,

Be empty and turn your back on the world.

Or you can do what she would want-smile,

open your eyes, love and go on

( I found this on someone's blog -don't know who wrote it)

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!!