I hate seizures….just sayin’
What other people say about Veronika….Wednesday, January 5, 2011
What other People Say About Veronika Last year I came across a resource called “What I’d Like You to Know About Me” or “About Me” for short. I was offered to opportunity to create one
To google or not to google…Wednesday, January 12, 2011
To Google or not to Google…. To Google or not to Google?, That is the question…..Last October when we saw Veronika’s paediatrician, I asked if we could see a baby neurologist. I was shocked when
Tuesday, January 25, 2011
Stop yelling at me! Another busy couple of weeks have passed. We are back to the normal 4-5 Doctor and allied health appointments a week, so there is still never a dull moment in the
Wednesday, January 26, 2011
Maybe some answers tomorrow!?!? Tomorrow we are off to see Veronikas occupational therapist early in the afternoon, then after that we are off to see the pediatrician. Maybe we might get some answers about the
Friday, February 11, 2011
My Little Climber….. Miss Veronika has learnt to climb! She climbed onto the couch all by herself in late January. I was and still am one very HAPPY Mummy. I have to admit it was
Wednesday, February 16, 2011
Back to the normal routine….. Well our boys Jordan 8 and Jakob 6, have been back at school for 2 weeks, which means that Veronika and I have gotten back into the swing of the
Sunday, February 20, 2011
My Little Project…. When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika
Thursday, February 24, 2011
Thankyou, Thankyou, Thankyou….No really THANKYOU. Oh my goodness, What a week. What started our as my latest blog post, about my little project, to get Veronika a hydrotherapy spa, to give her every chance to
So Miss Veronika had a big seizure sunday last week during the night, that went for 10 minutes and we couldn’t wake her….She wasnt making any noise, and I only noticed her through the video monitor we have above her bed, that has a screen that we can use to watch her(this is the one we have http://www.uniden.com.au/australia/p_bw2101_index.asp )I was just about to go to bed myself, so I put the monitor back on the charger, and then went to put my heat pack in the microwave, on the way back to turn the TV off I noticed Veronika seizing….so I raced up to her bedroom…. and 10 very long minutes later she ‘came to’ and tried to sit up. We had already called an ambulance and they were on the way…
Monday saw her admitted to HDU in our local hospital for a couple of nights, where Veronika decided she needed to do her own Ob’s, along with directing the Doctor to then check her ears, her mouth, her heart and her eyes, Veronika knows the routine!
Veronika’s recovery from the seizure wasnt too bad, she was tired, but this one didn’t seem to regress her langauge, Thankfully….but her left hand had become incredibly fisted and she wasnt really using it.
We went up to the play room, and Veronika wanted to play with the cars and the car park. Whilst we were playing with them, we had her iPad out with her communication app proloquo2go on it, and we were talking about up and down as well as the colours of the cars.
Later that afternoon the clown Doctors came and visited the ward, and Veronika had a lovely time singing, and blowing up balloons…
Wednesday afternoon one of the Professors from the hospital, who we have talked to quite a few times before, came to see Veronika and myself, and asked if it would be ok to bring in a group of medical students to talk to us about Veronika’s diagnosis of Trisomy 21(Down Syndrome) and Cerebral Palsy. Of course I said that was fine, I feel that this is one way that we can give back to the medical profession for the care they show towards Veronika and myself. So we chatted to them for half and hour or so, and I hope they have left with an understanding of how amazing Veronika is, not because of any diagnosis she has, but for being the amazing strong determined beautiful girl she is.
The play therapist gave Veronika some paper and textas to do some colouring in. So out came proloquo2go to work on colours, and before Veronika even picked up a texta she pressed ‘yellow’, then said ‘yellow’ and then got out the ‘yellow texta’….and I all but burst into tears, another milestone there and then. I was so proud.
And then there was the EEG, Veronika was so good, and sat really still while all the leads were ‘stuck’ onto her head…and while the EEG was done.
Veronika’s EEG didn’t show anything new, obviously it showed an abnormal result, but this was consistent with her brain injury. We were discharged with a big change to her anti seizure meds, and changes to her seizure management plan and will follow-up with Veronika’s Paed in a couple of weeks.
We had already booked in some intensive therapy with Veronika’s physio for the school holiday, so it was good timing for her physio to see Veronika post seizure, and to see the changes. So the end of last week and this week have been very focused on therapy….and we continue to work on Veronika’s left arm and hand as it has been really affected by the seizure, regression in skills is so upsetting following seizure activity….which is why I hate seizures….I hate the seizures and the regression that follows….
