Monday, May 31, 2010
Sunday, May 30, 2010
I think this was the quickest admission ever!
They got her stabilized pretty quick too. She got a round of IV steroids again. They always do help her seizures pretty well for a short time but they have never stopped her spasms but this time it did.
Drum roll please......................Emily's last seizure and spasms that we have seen was at 9:30pm on Thursday!!!! That is amazing because for over 48 hours she has not had any!!! WOO HOO!!!
We are having a problem with the lamictal though. When we went to pick up her meds they said they did not have any and when they did get it in it was gonna cost us $1100 AFTER insurance!! We have really good insurance too! UGH! So Tuesday is going to be busy making phone calls and figuring this out. Emily does have medicaid now but it does not go into effect until June 1st and they said it would require prior authorization.
Good news is that I remembered while we were in the hospital they made a bottle of compounded lamictal for Emily because she is still on the ketogenic diet but we found out that the chewable tablets were fine for her to take so we never used the compounded bottle. I called after we left and they still had it!! Since she was charged for the whole bottle the pharmacy let us have it!! It is only a 2 week supply though so hopefully we can get this all figured out by then.
We are hoping for a calm boring week. Also hoping her g-tube stays were it is supposed to!
Emily's 1st birthday is this weekend. I can not believe she will be one already! Her party is the next weekend, Sunday the 13th at 3pm. It will be at our church in Greenville. Everyone is welcome to come. If you would like to come just email me or comment and let me know so I can have a head count. I am looking forward to spending time with everyone!!
Friday, May 28, 2010
Privacy is definitely something you don't get there so you hear and see a lot of things you don't want to.
Thursday, May 27, 2010
Tuesday, May 25, 2010
Monday, May 24, 2010
Sunday, May 23, 2010
It was a beautiful day for pictures! We took them outside at a local winery/farm. It was through the littlest hero's project. I talked about this in a previous post . Shanna Simpson, the photographer was so great! She was super nice and it was a pleasure getting our pictures taken by her! I can't wait to see them. Emily looked so cute in her tutu our friend Chandra made for Emily's 1st birthday. She is very creative, Chandra is also the one who made Emily's "hospital" blanket. We took this blanket with us the very first time she was ever in the hospital and from then on anytime we have to go somewhere we take it because it is such a comfort to her. We get so many compliments too!
Emily would not smile for her pictures though. We tried and tried and made complete fools of ourselves but I am sure we still got some great pictures!! Thank you Shanna for being a part of the Littlest Hero's project!
Ok onto the small victory...............
I have always been very hesitant about "bragging" when she has fewer seizures, most times Joe and I call her seizures the monster as to not let her seizures hear us and come back with force. I have realized though we may not always have good days or even great days so I NEED to celebrate all of her victories, large and small.
Two days ago Emily had 4 seizures, the day before yesterday 3, and yesterday she had 1. Now that is not including her spasms that she still has almost every time she wakes up, but even those are getting weaker and weaker. I also realize that Emily has many more seizures than we actually see but still this is a huge improvement from 70+ seizures/day.
I do not know if Emily is just having a good day or if we are actually seeing an improvement in her seizure control. I would love to say the later but only time will tell. Thank you all so much for your prayers!!
Also, I would love to get shirts made for the Epilepsy walk for our team. If anyone knows of a cheap place please send me let me know. Thank you all for all of the support we have already gotten for the walk. Emily just may raise the most money!!!
Saturday, May 22, 2010
It will be at the Louisville Zoo.
Friday, May 21, 2010
Wednesday, May 19, 2010
Saturday, May 15, 2010
ahhh bath time or nap time?
sleeping so good!
what do you have glued to my head??
We stopped at lake Erie and took a few pics.
Yay! We are staying in another hotel!!
Seriously thinking about getting a hotel bed for her to sleep in at home.
She did not want her sunglasses off!
Thursday, May 13, 2010
Wednesday, May 12, 2010
Tuesday, May 11, 2010
On a positive note, they left the hospital bed in the room so we have that to sleep on and a pull out chair/bed thing. The Ronald McDonald house is full so we could not get a room but they are letting both of us stay here so we don't need it now. They have a Ronald McDonald room on the floor for all the pediatric patients family's that has a couple computers, TVs, showers and laundry that we can use while we are here.
Monday, May 10, 2010
Sunday, May 9, 2010
Mother's Day is not a happy day for everyone though. I know many people who still struggle with infertility and loss and I know how it feels. I pray for peace for all of those who are still struggling. One day we will rejoice in meeting our angels in heaven!