Splint Review

Yesterday we had Violet's Second Skin Splint Review. Violet is due for a new arm splint as she has out-grown this one. She has grown so much this past year!

We are aiming for the new one to be ready around May, which gives us enough time to get another funding application underway and hopefully approved.

Genetics Appointment

Had Genetics Appointment yesterday. They had a few Vascular Specialists visiting from overseas and ended up with 12 in the room examining Violet. She was the perfect little model, standing there in just her knickers turning around for them all to examine her medical conditions!

This appointment is the first time I have had a chance to show the Geneticists and Vascular Specialists her lumps in her abdomen below her naval and the one on her collarbone since our last appointment. They were very intrigued by them.

They decided to take some blood for genetic testing and have sent it off overseas to have the testing performed. Extracting all the cells/DNA from her blood to test for various syndromes that can cause lumps like she has.

If the bloods come back negative for these, they will then take a biopsy from the lumps.

Should get bloods results back in next few months.

Violet Crawls!!!

CIMT Study...8 week Review

Had Violet's CIMT Study 8 week Assessment today. Went very well, she will be having her 6 month Assessment on 3rd July and that will mark the the end of the CIMT study officially for us!

Up until half way thru this study she made some noticeable changes, although she hasn't made any new ones since then, she has maintained them.

This study has definitely been worth the hard work, especially when you do see even small changes.

Neurologist Appointment

Neurologist has looked at Violet's EEG results and said there is definate epileptic activity which confirms her recent seizures.

Until her seizure frequency increases, he going to hold off on fully medicating her.

At least now we have Midazolam on hand in case she has another prolonged episode.