Breaking The Curse

This year makes our third Halloween with Ivey. We have yet to have her home to dress all cute and go trick-or-treating. Tomorrow she will be the cutest Tinker Bell – ever.

Last year she pulled out her mickey button at 4:00 pm … no Halloween.

The year before she had just been trached… no Halloween.

This past Sunday the port for her g-tube popped out. We have tried to schedule the replacement of her mickey button all week….tomorrow is the only day. Not gonna do it. I have scheduled the replacement for next week. The g-tube port is taped - Praying it stays through the weekend. Breaking the curse.

We are having our first Halloween home. Two and a half years later.

Next week will be a busy week. On top of PT, OT, SLP, GA PINES and all of our other family obligations, Ivey will go to her ENT. Hopefully he will give us thumbs up that the trach site is completely closed. Cross your fingers. That same day we will have her mickey button replaced. Then later in the week I will take her to her cranio facial surgeon. Let's all hope that he will give some insight about Ivey's eyes and the issues that we have been having with her leaving them in.

Oh, and say a little prayer about her seizures. Last week another seizure medication was added to her cocktail of medications. After a few days, rash and vomiting – I realized that the medication had a component that I am allergic to and it seems she is also. So, we have taken her off the medication, leaving her on her current meds without increasing them. And, we are taking her off of Diastat and switching to another medication in hopes that we can by pass the ER in the event of her next seizure. Pray it works.

Happy Halloween…stay tuned for adorable pictures of Ivey's first real Halloween at home with Buzz Light Year and Indiana Jones.