picture post

My friend Angie and her family came to visit us in the hospital yesterday.

She has a daughter, Ava, that is 3 months younger than Emily.

We are just sure they will grow up to be best friends!

How cute are they with their chubby cheeks!!

Come on friend, lets go play!

Ava reached out and held her hand. It was so sweet!





They were talking to each other, there is no telling what they said about us! hahaha!

This is my favorite picture! I was talking to Joe and did not even realize that Emily was holding my thumb. Like I said on my previous post Emily does not normally grab things purposefully, so when I looked down and saw this it just made my day!! I love this little girl!!

*Quick update-We are still in the hospital. Emily is not eating enough by mouth. They said she should be eating appx 32oz and yesterday she took in about 17oz. So we will see what the doctor has to say today.

Emily loves her daddy

We had a pretty good day.

It started out rough because she had to have a NG-tube placed but she did so good. She barely cried. They put 4 ounces of formula and breast milk in and she tolerated it very well.

4 hours later they wanted us to try and feed her a bottle and what she did not eat they would put down her tube. Well she ate it all! The doctor said sometimes it just takes a jump start.

We just fed her again and she ate almost 3 ounces. She is very tired because she just had a pretty long spasm so they put the last ounce down her tube with her pm medicine.

I have to share what a daddy's girl Emily is.

She has been pretty content all day. Not happy not fussy just OK.

Joe walks in the room and sets down behind her and he said one word and her face lit up! She began looking for him and he walked around and she could not stop smiling!

Even with a feeding tube she was so happy to see her daddy!

My friend Angie took me out for dinner tonight. I was so nice to just get out of the hospital even just to eat dinner and chat with my friend.

While we were eating Joe text me and said, "Emily is grabbing the bars on her bed." I know that might not seem much to you all but to us it's a big deal. For her to know that something is there and that she can use her hands to touch it is a new thing. She is learning more and that is so great!!!

He sent me this picture. With the caption "Get me out of here!"

Oh, I almost forgot! If Emily keeps eating the way she is we just may get to go home tomorrow!!! It's a big maybe but hey it's still a chance.

tubes and changes

We are still in the hospital and from the looks of things we won't be leaving until next week some time.

Emily is still not eating much at all. Today she had a grand total of 3 1/4 ounces of formula or breast milk. Yesterday was even less than that.

We knew it was coming but we still did not want to hear it...The Dr. is putting a NG tube in tomorrow. For those of you who don't know what that is, it is a small tube that goes in one nostril and down the throat into her belly. It allows us to feed her or give her medicine when she can't or don't want to eat.

I know it is temporary but still its hard to hear.

Right now it is what Emily needs to grow and get better.

Also, in the morning we are going to stop her klonopin and keppra all together and we will be increasing her sabril.

Her spasms have returned but she has not had one big seizure!! They are fewer and shorter also. She is down to 3-9 and mostly under 3-4 minutes.

The doctors are not worried about her spasms right now and they believe with the sabril increase she should stop that too.

You know we came into the hospital on Tuesday just to give her fluids for 24hours then go back home. Little did we know this was going to be our longest stay yet.

Emily is still very sleepy. We don't know if its from the klonopin/sabril combo or just the sabril itself. She has never became this sleepy on any med before so I think its probably the sabril.

They also think she may be coming down with a little virus. It just sounds like she can't clear her throat, but only when she eats or tries to breath through her nose. She does not have a fever or cough so I am not sure I agree with them on this one. Personally I feel like its due to low muscle tone and that may also explain why she is not eating. I think its just too hard to swallow because all of her meds have made her muscles so very weak and to swallow properly you have to have some muscle control.

No pictures today. Joe has to go home and get more clothes and wash the ones we have here after work tomorrow, so I am gonna have him bring my camera up.

Hint hint honey if you are reading this!! love ya :)

So if you will just pray for our day tomorrow. It will be a hard one.

Can I get an AMEN!!!

Ok Ladies and Gentlemen, hold on to your hats cause we have some great, fantastic, wonderful, and A-MA-ZING news!!!

Emily started sabril on Monday night at 9pm, she had 3 infantile spasms episodes after the medicine was started (no big seizures though)

Yesterday she had a total of 3 all day with the longest lasting 3 minutes and that was at 7pm.

I may be a little premature in rejoicing, but what the heck I am gonna rejoice!!!

Since 7pm yesterday she has not had ONE SEIZURE, SPASMS, TWITCH, OR JERK!!!!

PRAISE THE LORD!!!

I do understand that this may be what they call a "honeymoon stage" where it works for a while then her body gets used to it and it stops working. I am not gonna focus on that right now though.

We have something positive to look at now!!

On Monday night before we gave her the sabril I sent out a mass text to my prayer warriors and had everyone pray with us at the same time.

Joe and I held this little syringe of liquid and we prayed and asked God to let this work.

Even if its only one day she is seizure free I will still rejoice and Praise the Lord!!

This is a victory and I don't know about you but most people celebrate victories!!

Heck who needs a gold medal in the Olympics just give me one seizure free day with my baby.

repeat

I feel like my life is stuck on repeat.

We are back in the hospital....again.

On Monday morning Emily had her first grand mal seizure. She actually had 2 of them about 12 hours later had another one.

We were terrified so we took her to the ER. After 5 hours of waiting to see a doctor they just sent us to her neurologist office.

Pretty much all he told us is she has seizures and this will happen. He also said that we have all the meds that they will give her in the ER at home and he wants to keep her out of the hospital so she doesn't get sick.

So logically where do we come the very next day.........THE HOSPITAL!!!

We started the sabril on Monday night ( More on that on the next post) and it completly knocked her out. She is on a very high dose of klonopin already so I guess it was just a lot on her system because she quit eating. Monday she barely ate more than 4 ounces, yesterday I had to force 1/2 an ounce in her and so far today she has not had anything to eat.

So they admitted her for 24hours to give her fliud and decrease her klonopin a little.

Bless her heart, from all of her recent stays she had no veins good enough to put an IV in so they had to put it in her head. :( They really tried everywhere else first but it was they only place left.

Its not the greatest pic but you can see her little head.

OK I am off to do another post!

happy video

I took this video the day before we had to go back to the hospital last week.

Emily is starting to laugh more and I just love to hear that little laugh.

Let me warn you though, she has just eaten a little bit so she is messy.
I was getting ready to give her a bath so I didn't clean her up after eating.

It's so cute, sometimes if I laugh she will laugh back at me.

I think we all need something funny to lift our spirits!!!

Listening to her laugh just makes me want to cry! ( tears of joy ) I love her so much!!

Too much

Some days are just too much and today is one of them.

I try to stay positive and be calm and strong but today I am none of those.

I am not wanting pity or anything, I am just venting.

Emily has starting a new seizure and its scary. I got a video of it but for some reason I can't upload any videos...grrr

It starts out as a small twitch then turns into her shaking a lot harder, much more recognizable as a real "seizure". It only last 15 seconds or so but it is terrifying.

The crazy this is though, when Emily is having a seizure she stills smiles and sometimes laughs. Every single doctor keeps saying she shouldn't be doing that but Emily is different from the rest. She is a princess!!

We gave her an extra dose of klonopin like we were told but it did not stop it. We called the on-call neurologist and it was the same Dr. that sent us to the ER on Wed so she knew us. Thank goodness.

We were getting ready to give her oral valium when she starting crying, that is a good sign. It means she is coming out of it. So for now we hold the valium because with all of the klonopin she is on it could suppress her respiratory system because the two meds are in the same category.

We did have to give her that extra dose of klonopin and she is already on such a high dose the dr. told me to make sure and watch her closely tonight. So.... no sleep for me.

I really try not to complain too much. We are so blessed and I don't want to look ungrateful for any of it.

Sometimes though its just too much. Sometimes I can't stop crying. Sometimes I get so mad because I have no one to be mad at. I can't hit seizures. There is nothing for me to get mad at but I am still so mad!

If you have ever had to deal with seizures than you know the feeling when your baby/child is having one and all you can do is watch. You know the damage that is happening and all of the potential danger that could happen.

It hurts me so deep that I feel sick sometimes.

I would take this from her a million times over if I could.

Please pray for us today. I really don't want to go back to the ER. We will if we have to but....

We start the sabril on Monday, I am holding out hope that this medicine will help her.