Two steps forward, one step back

"Two steps forward, one step back" I feel like this is a common phrase that goes through our head alot lately... whenever we seem to be making progress with Ellie something seems to happen or come along, that puts us back a few steps... What has made me think this, this time around??  

Up until 1 week ago, Ellie was making real progress with her exercises to help improve her strength, weight bear through her legs, and eventually help her to sit on her own. Just as she was doing really well with these, she had the seizure, now she also has a horrid cough and cold. I know this doesnt sound that bad, but due to all this I have had to cancel her phsio appointment today with early intervention and also her occupational therapy appointment tomorrow, as she doesnt have the strength at the moment. I know she needs all the rest she can get at the moment, to get her strength back, but its just hard, when we were making such progress with her exercises.

On a more positive note, we have received a appointment for Ellies MRI, this will be done on the 20 October at 8:30am, unfortunately they need to put her under a anaesthetic for this as she needs to lie very still, (which for those who know Ellie well, know this is hard for her... She was born with 'ants in her pants')

Anyway, Ellie sleeping at the moment, so will make the most I can of the 'me' time : )

Grand Final Day

Would have loved to dress Ellie up in 'Saints' Gear today, but unfortunatley they dont make any of it small enough to fit her...

Ellie seems to be doing well after her seizure, but the meds seem to be making her quite sleepy throughout the day, so we just need to keep a record of how much she is sleeping to see if it slowly decreases. The drowsiness may be due to her being on 2 meds tegretol and phenytoin, so that is another thing, but she is only on 2 for another 18 days, then it will drop to 1.

Mind you I must say it is nice to have a bit more of a break during the day with her sleeping a bit more, as normally Ellie is the queen of catnaps. She has also developed a really bad cough in the last few days, which has made her vomit twice... so am hoping this goes away as well...  otherwise we will be back to the doctor as in the last year Ellie has had mild bronchitis twice and been hospitialised both times. Aside from that all is well, just a pity that the Saints couldnt win.

Our first blog

This whole blogging thing is a new world to me. I dont even think I have read someone elses blog, until I decided I wanted to start one for Ellie. The purpose of this blog is keep you all up to date with how Ellie is doing.

The last few days have been a bit of a blur. Whilst away for the weekend in Rye, Ellie suffered her first seizure at 1:30am on Sunday 20 Sept. This was frightening to say the least. Once paramedics arrived her seizure went for about 1 hour before it was brought under control, at which point Ellie was taken by helicopter from Rosebud hospital to Monash Clayton... this was painstaking, as Luke an I had to drive ourselves to Monash. I think that car trip was a blur, Luke safely running red lights to get us there ASAP.

Unfortunatley seizures are a part of WHS but we thought Ellie was lucky enough to escape them. Currently she is on 2 anti seizure medications, and over the next 20 days this will drop to one. Hopefully the medications will reduce the severity of any further seizures, if not prevent them.

Whilst in hospital she had a EEG that showed some abnormalities, however it is what they expected due to WHS. In the next 4 weeks she will need a MRI to rule out any other reasons for the seizure, however the doctors are confident that it was due to WHS. I will keep you all updated with the MRI date and results.

Ellie is back home now after 4 days in hospital and is slowly coming back to her happy smiley self.