Friday, April 23, 2010

Seizures galore

Last night was a tough night. I was counting Jude's seizures, and when I was at a total count of 16 I decided to inform Mike. We came to the conclusion Jude had about 25 seizures last night in total, and maybe more throughout the day. I am blaming the Felbatol, but Mike thinks there is something else going on. Mike took Jude in the get his blood counts today, and we are waiting to hear the results. I am not sure they will be back today, but I did put an email into the doctor. I love the fact I can email my doctors office from work, and always receive a prompt response. Also, that same doctor has said they will be giving us a letter to support Jude's nurse. The fair hearing is 4/28, so say a prayer!

So I mentioned that on May 23rd there will be a fundraiser for Emily's Smile Boxes. Well I put out an event invitation to everyone I possibly knew on Facebook. To date I only have 12 people planning on attending, which is so sad. I know that there will be tons of people from Emily's school, but I was a little disappointed I didn't get a better result with people I know. Granted the event invitation went out to a few people that could never possible attend, but there are some that could. I reminded myself that people already have plans, work, and have other issues going on. I just hope that we have a great turn out that day, and I so appreciate those attending. The salon is offering hair cuts and more to anyone that wants to make an appointment, and all proceeds go to Emily's boxes. Outside we will be putting together 100 boxes, and every child that shows up will get to help decorate the boxes. In addition we will be selling Emily's Smile Boxes helper shirts, cokes, hot dogs, cotton candy, and more. My aunt may even come in from Springfield, and bring their amazing Askinosie Chocolate to sell,

I will keep everyone updated on Jude's blood results. Mike said Jude has had several large seizures again today. I was telling my grandmother about them yesterday, and mentioned we are used to them. She told me we shouldn't be "used" to them, but you just become accustomed to handling the situation you are in.


Sherry C said...

I'm so impressed with how much work Emily is doing for her Smile Boxes. She sure is make a difference in for many many children. What an awesome daughter you have. Sorry to hear Jude had such a rough night I hope he rests easy tonight.

I don't understand how you heath care system can deny you a nurse. I don't believe that would happen in Canada. My daughter Ashley has had nursing care since she came home from hospital. It has been invaluable. I don't understand how they can not clearly see Jude needs extra care. I pray you get your nurse.

Colleen said...

I will pray for sweet Jude and his seizures. It must be exhausting when he has that many. Hugs!

Katy said...

So sorry to hear that jude is having a rough time of it--hopefully they can get to the bottom of this soon.

Amee said...

I am praying for you Jude. I hope his levels come back ok, and they can figure out what is causing the mass amounts of seizures. That is wonderful that Emily is so involved in the smile boxes! I am also going to pray that Jude gets his nurse!