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.

Comments

Shannon said…

I'll be waiting for those pics! How fun to actually have Ivey's very first Halloween. I will be saying some extra prayers for you sweet Ivey.
Love,
The Best Family
Austin

October 31, 2008 at 10:57 AM

And Sometimes Feeding Your Kiddo Looks Like This...

A simple sentence. No one said it to me in the beginning, but boy did that tube cause a lot of chaos. The NG tube graduated to the G-tube which morphed to a GJ- tube…. A brief history of Ivey's feeding tubes: *The NG tube was in place the first time I ever saw my daughter in the NICU. My only memory of her without a feeding tube is them placing her in my arms immediately following her birth. *The G-tube, well, that is a story within itself. That decision did not come lightly. Another hole in her. Another decision on our plate, but not really on our plate, it was apparent it was a medical necessity for her survival. Literally to give her a chance to live. A permanent decision. A 5am panic attack in the Scottish Rite elevator that happened to coincide with Dr. Meyers arriving at the hospital at the same time as me.... Our intersection in the elevator set the stage for the years to follow. From that point on, he knew I was a little nuts and a lot...

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Siblings of kiddos with disabilities are amazing humans walking amongst us. They live a life, most often, in the shadows of their sibling who simply needs "more". More time. More direct attention. More of more. We have now come to a fork in our road. Our boys are young men, and, our daughter is a young lady. I'll be honest, I was uncertain what life would look like once the boys left this home, once they had their own time, in their own personal sunshine. We found out quickly once Knox left for college his freshman year what that would look like. And then, when Walker left, we knew what life would feel like in their absence. There was too much space. Ivey felt it. We get many compliments about the relationship the boys and Ivey have with one another. Hints here and there that, maybe, Matt and I had some secret recipe to parenting a household with a child that is very medically complex and a very complex communicator. This is what I can tell you - there is no re...

For the Love of Ivey

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