Thursday, 27 January 2011


Ivy went to get her Helmet Yesterday, We showed up, the DR Put on the Sharp Jagged edged helmet then started marking where she needed to shave off areas for a better fit. It took awhile and taking the helmet on and off and on and off was not FUN for the little Miss. Finally after 2 1/2 hours of filing and bending and adding extra Vent holes it fit great! It is going to be a long 4 to 5 months, this helmet is SO hard to get on and off and and I know I am hurting her every time I do.. Yesterday we had to leave it on for an hour take it off for an hour and so on ALL DAY! Today is Two hours on one hour off, ALL DAY! tomorrow four hours on one hour off, then by Saturday it's on for 23 hours a day one hour off, for 4-5 months. Once it is on she is good with it and happy, I tell ya though I am glade it's not hot out here right now cause her head is SO sweaty in it. Next on her list is her eyes, By the time this Lady is one she will be shooting lasers from her eyes and crushing rocks with her head, BIONIC BABE!

Wednesday, 19 January 2011

Cranial orthosis

Well it's official we can't get enough of Ivy. The kids love her to death and Ivy knows it! SHe is growing well and is probably one of the happiest babies out there. I feel like she is just happy to be here. Ivy will be sporting a new helmet by next week or CRANIAL ORTHOSIS , and she will be having her eye surgery{ for her STRABISMUS} by next month. She will be also having her Genetic testing done on the 7th of Feb and then in for one more EKG before the big one.... the one that will determine it it's indefinite or not.. Fingers Crossed and lots of prayers. I put up a short video of her head scan below, she did awesome and looked cute while doing it. On the up side Ivy is holding her head better, Her physiotherapist is feeling like she is progressing ... Slowly but it's progress. Any progress makes us happy I think it makes her happy to!