Being happy doesnt mean that everything is perfect.

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

Monday, February 15, 2010

Appointment update - Neurology & Physio

Today we had an appointment with Ellies neurologist. Even though Ellie has had some breakthrough seziure activity over the last 4 weeks, we are both happy with where she is now compared to about 6 or more weeks ago. Our plan however is to drop one medication (clobozam) today, and leave Ellie just on the trileptil.

Ellies neurologist explained an interesting thing to me today about the trileptil. Obviously if you dont give Ellie enough of this medicine for her wieight than more than likely she would have seizures, however, if you give too much then this can also produce seizures. At the moment Ellie is having slightly more than what she should be, but not by much.... so the plan is now that she is off the clobozam if seizures reappear then we will actually reduce the amount of trileptil that she is having. Again it just all comes back to finding the right med and the right dose. But as I said above Ellie is in a much better place regarding her seizures and meds compared to 8 weeks ago. So we are very happy with how this is all going.

Then this afternoon we had physio, and I was very proud to tell Trish that Ellie has been sitting unassisted for about 1 minute (after I have set her up in the right position) so this is something that we will be working on over the next couple of weeks. Trish also brought a peanut roll for us to borrow till I get mine. A peanut roll is a fit ball shaped like.... you guessed it a peanut roll. It has a little groove in the middle that helps Ellie stay on the ball, and as it is alot smaller than my massive fit ball, her feet can touch the ground.

We are also going to work on Ellie standing with her splints on, against the coffee table, and work on Ellie taking more weight through her legs. Trish is also going to bring some catalogues of standing frames, as this is something we want to get Ellie in, as she really wants to be up and stand... but the problem with this is Ellies size. For a standing frame to work properly it needs to provide proper support to Ellies bottom, and hold it in, but as she is still little, most frames probably wont provide this support.... But we are on a mission to find one that works, and possible try them out first...

If anyone knows of a standing frame that works for 'little' kids, please let me know the name of it.


  1. Seizure management is a nightmare! Hope it goes well once she is down to 1 med. It really is a balancing act of finding the right med and the right dose.

    Great to hear she has been sitting a bit more. Those peanut rolls are great.

    Alot of people I know have got their hubbys to make a standing frame to get the right one for their child and get it quicker.

  2. We had an awesome standing frame for Ryley. Will email you a pic!

  3. Congratulations on 11 minutes sitting! That's wonderful!

  4. Ellie is amazing! You too Melissa!

  5. one company not for profit you can use in victoria is called 'tadvic'. They are a group of retired builders/carpenters/engineers who can make eqp that is not available on the market. Best to talk to your OT about it... that is unless Luke has already knocked something up!

  6. Thanks for all your comments. Got your pic Anna, that one looks good and looks like it accomodates 'little' kids

    But I am also interested in this Tadvic group, if I cant find one that works for Ellie..

    Thank you!!!!

  7. hai, i am mawaddah's aunt. i surfed the internet for the same thing to help my baby sit, and i found bumbo seat. but in Malaysia it is quite expensive, so i just let my baby seat by put her between my leg.hehe...
    nice to know u...