Being happy doesnt mean that everything is perfect.

It means that you have decided to look beyond the imperfections...

Monday, November 30, 2009

Back home again.... as a family & a update on the last few weeks

YAY!!! Ellie and I have finally moved back into the house with Luke... And so much work has been done on the house. Luke has worked so hard and done an amazing job.

I have to admit though it was a help that I was at my parents for the last 4 weeks, as Ellie has kept me on my toes, with being un well and unexpected hospital visits, so it was nice to have an extra pair of hands to help.

In my last post I talked about how the meds that Ellie was on had changed her demeanour so much. Well.... Last week I had an appointment with her neurologist to chat about this, and I also mentioned that I felt we didnt have great seizure control either with the Tegretol. So the plan was to change her to Trileptil, this was to happen after the weekend as she was spending the weekend with my parents while Luke and I got the house ready to bring Ellie home. Well the following morning, Ellie seized on and off for about 1 1/2 hours, so under her paediatricians instructions we were to giver her midazolam to stop the seizure and see how she recovered. However her seizure got worse and her breathing became erartic. We ended up at monash overnight to monitor her and watch her whilst they changed her meds (to trileptil) and went home last Thursday (26 November) She was also sent home on another medication that is to act as a bit of a bandaid while we find the right level of trileptil to have her on.

This bandaid didnt work so well, as on Saturday and Sunday (28 & 29 November) Ellies seizure activity increased, and alot of them consisted of very absent seizures, this involved no jerking or stiffness, it was like the lights were on but no one was home, this was a new type of seizure for Ellie. She had a couple over the 2 days that lasted 20 minutes, and our plan was to call her neurologist first thing monday to discuss what to do when these type of seizures happen. Are we to administer midazolam? However, late sunday afternoon, she had another 15 minute absebnt seizure, which was followed 30 minutes latter by another one, however this one wouldnt stop and she had facial twitching and jerking. Again, we had to administer midazolam. This time we only stayed in the ED for about 4 hours, so there was no overnight stay. (Thank goodness!!)

We were aware that in the midst of changing meds there would be increased seizure activity, but that still doesnt make it easier to deal with or watch. We just need to be paitent whilst we play around with Ellies medications and doses till we find the right one for her.

I said to Luke yesterday when she was having a seizure, "I wonder if Ellie is aware of what is going on" "If she remembers the seizures" I hope not...

On a positive note, Ellie is doing really well with her sitting at her table and playing with toys and sitting in the Bumbo. Over the last 4 weeks as Ellie has not been 100% I havent pushed her therapy wise, but she has really taken to sitting in these 2 chairs. She looks so grown up when she is in them...

We have another busy week this week, with Ellie in for day surgery on Wednesday to get tubes put in her ears. I am very excited about this operations as it has been postponed twice due to seizures, and Ellie already being in hospital. I am quite interested to see how her hearing is after this, and what her reaction is. I will keep you all updated.


  1. I am so sorry Ellie is going through so much with her seizures. I hope they come to an end for good soon. She looks so good in the pictures. I love how well she is sitting up and playing with toys. We are thinking about you guys.

  2. Yea! You are back home. BOOOO Ellie is having so many seizures. Hope that the right med and dosage are found soon! Welcome back to your home!

  3. Hi Melissa,
    I've been checking your blog for about a week now. I saw yours through Hannah and Riley's blog. I'm sorry you guys are having a rough time right now. Our thoughts and prayers are with you and your family. Ellie is a beautiful baby:) I have Tanner who just turned 9 months with WHS. Lauren got me into blogging and I'm so glad she did. I love being able to meet other WHS families and sharing stories. I hoe you don't mind me following. Take care.