For the Love of Ivey

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 cra...

Ivey had a rough day yesterday. Seizures. They started yesterday morning and continued until late into the night. They ended in the ER - after an IV of anti-seizure medications. She has one banged up right arm from attempts to get blood. When can we transplant my veins into my daughter's body? Last night I was reminded of how blessed we are to have an extra member in our family that we don't talk about often here on the blog. However, any one around us knows. Christa is one amazing person. She is not just a sitter, but part of our family in an adopted sort of way. She is my right arm at times. A lot of times actually. Over the years she taken on responsibilities that go beyond what should be expected of her... Obviously she is not your typical college girl. She can man-handle a trach. Run pumps and machines. Work a mickey button. Put in hearing aids and prosthetics eyes. Handle seizures. Once upon a time she even put down ng-tubes. All the while wrestling two littl...

On film with Bert, Ivey's PT. How great is that? Standing!

The Mother at the Swings is an ice-breaker on so many levels. Good conversation. And, there are many different points of view. It is a subject that should not be so uneasy - Gavin's mom , Karen, once called it their 'big pink elephant' that followed them around…. Not many of us grow up interacting with special need children on a daily basis. I did not. This is a new world for me too. That reminds me, on several occasions I have thought of writing a book – The 'What to Expect When You Are Not Expecting ….a special needs child'. Personally, I think the book would sell millions…… ……………………………………………. Or maybe I should go for one of those 'Idiot's Guides'. ……………………………………………..

I am working on a mental project right now. Actually the project is formally in the works, but mentally I have to figure exactly how to present various pieces of information about our family and Ivey. It is easy to put information up on the blog, to sift through the day-to-day routine and pick out the pieces. Even the most descriptive of my presentations here falls short of the actual live events, and even those tend to be biased. I try. And I also build walls. So, I have been thinking about a conversation I had earlier this week with another special needs mama. You would think that I talk to lots of other moms with special needs children, but I do not. It is rare. Even the internet moms I talk with outline their day-to-day humdrum. No, these deep conversations do not happen often. We spoke about our children, each with their own unique talents. Easy conversation. And then the conversation turned to personal inquiry. Note that this mom and I had never met and I was willing to reveal th...

Sitting on the Firetruck next to her buddy 'C'.

This afternoon Walker was helping me to set up Ivey's feeding pump. He loves pushing buttons. And more importantly, he loves to be the big brother in charge, which does not happen as often as he would like whenever Knox is around. Obviously Knox was not here. Anyway, we got the pump set up, I was carrying the pump; Walker was carrying the feeding bag - he stopped suddenly, looked at the bag and asked "Mommy, aren't we going to make Ivey chocolate milk now?" Big brother looking out for his baby sister. I wonder what Doctor M. would think about chocolate formula in a j-tube? Not so much. Then later in the day the door bell rang. And who should be at our door? In Walker's world, the PBS man! What he really means is the UPS man, but who am I to correct him? And guess what? The PBS man brought him a Buzz Light Year suit..... Never mind that some one had to order it. My kiddos love ToyStory. Why is that? Remember Knox sang "You've Got A Friend In Me...

Update II: We were instructed by our neurologist to take Ivey in to the ER if she continues to seize after we administer her Diastat and if continues having cluster seizures. Do you have Diastat ? Once in the ER, they always start an IV of medication, the first typically Ativan . Under normal circumstances it takes three meds on top of her Diastat to get them controlled. You need to talk to your neurologist and ask him to help you setup a 'plan' for days like this. I would do that today. Then have it with you in the ER. I would ask the neuro . to recommend the order of medications that he thinks would work best for Reagan's seizures. He knows best and that way everyone is on the same page. We were lucky the first few times we took Ivey in to our home ER, they were able to get our neurologist on the phone. Since then, the ER staff pulls up her records and do the same routine each time, because it seems to work. Ivey's seizures have been lasting one complete hour so...

So far we have not nailed down the eye issue. However, as of this moment, Ivey is not wearing them either. She needs a break, and so do we. Thank you everyone who left advice. We are heeding it all. This is one of those times where we must weigh out Ivey's best interest in light of medical opinion. If she could speak for herself, what would she want? Then again, I think she is speaking loud and clear. She hates those blamed eyes. So do I. So obviously, I am not the winner in the eye category. But I've got something even better. For my own sake I do not have anything for comparison, so you must all take my word on this……I win- Not long ago Ivey learned how to sign 'Momma'. Well, what do you think about this? Sorry Matt...I Win....That's a 'Momma' if I ever heard one. Ask Dee, she is my witness!! For the record, Ivey was saying 'Mommma'. But in the time it took me to run to grab the camera and get back she was down to 'Mom'. But Dee was ther...

As of this moment, I am officially at wits end. Hands shaking– light headed from a very generous rush of adrenaline. I don't know what else to do. I have tried everything. So now I am extending this to anyone who may have experience to help me. This is about Ivey's prosthetic eyes. Just five minutes ago Ivey was BLUE – gasping for what little air she could – because she had removed her eyes, both of them, and slipped them into her mouth, where they lodged in her throat. In the past we have made light about it, and this is not the first time Ivey has choked on them; however, today she truly s.c.a.r.e.d me. I have asked our ocularist, ophthalmologist, members of my MAPS group, visual teachers, therapists and any one else who might have experience or ideas with this issue. Here's the thing, the suggestions that maybe she is bored, needs to be kept busy, enjoys the attention that she gets from us telling her 'no', the idea that I should be able to watch her literally ...