The Eve of Jordan's Annual Evaluation

Every year Jordan is evaluated by the Neurodevelopmental Specialist.
Every year I plan for several weeks; writing down concerns and questions.
Every year I get to the eve of that appointment and I am terrified.
Every year the evaluation goes well.
Every year I tell myself that it's no big deal.

Tonight I am finalizing my list of questions and wondering if I have covered everything.  I know that there is more that I have thought about or that has concerned me over the past year, but I don't feel like I can keep thinking about it without losing my mind.   I am sure that tomorrow morning things will go well and Jordan will be on her best behavior and we will come back home and I will wonder why I get so worked up over these things.

I plan to discuss some of our "normal" issues - weight gain/growth, temper tantrums and behavioral concerns, potty training...and the lack of success, etc.  All of these are easily covered and we are normally on the same page with things and they may give me some handouts and suggestions.  Easy.

However, this year I have some additional things that I am planning on being a little pushy about.
     *Jordan has only been in feeding therapy for 12 weeks out of the past 1.5 years.  I am sick and tired of waiting for her to get older so the therapists at Mary Free Bed will work with her to teach her to swallow!  I want my daughter evaluated by a recognized pediatric feeding program that will provide her therapy now...and I want Vital Stim therapy.  We are looking at Cleveland, Cincinnatti, Mayo or any other the doc recommends - we will figure out how to make it happen later.
     *I want her to be evaluated by a GI doc - someone that will tell me why we are keeping her on reflux meds but we have no medical documentation (other than the visual appearance of her esophagus during her scope a year ago) to explain what is going on in there - I want an upper gi, esophageal ph study, and any other tests that can help us understand her better.
     *I want an evaluation for her sensory processing issues - she is really struggling with this at times and I need to know how I can help her.
     *I want her to be referred to a dental specialist for the horrible brown stains that cover her teeth - having them partially cleaned twice a year by her dentist is unacceptable.  We need to figure out what is causing them and get them completely cleaned.
     *I want to know why she has told me several times a day for 4 months that her "bottom hurts" and I have taken her to her peds office twice and they can't figure out what is wrong.  We have tried all sorts of things and nothing helps.  She doesn't like to sit in her high chair, hold her on my hip, or anything that puts pressure on her bottom.  Something is wrong and I need to know what!
     *I want another MRI done.  She had one when she was about a year old and the doc that recommended it said it should be done as a baseline so another could be done in 3-4 years.  Well, it's been almost 4 years.  I want to see if anything has changed and if anything else can be detected.

That's all...

I sure hope she'll listen...and be willing to understand that I will do ANYTHING to understand Jordan better and to help her to move forward in her development.

More than anything I need to know that Jordan and I and our appointment tomorrow is covered in prayer.  I know that God loves Jordan even more than I do and that He is in control (not me) and that I need to let Him lead me tomorrow so that I don't try to stray from the path He has marked for her.  I love my baby girl and would do anything for her, but sometimes I need to pull back and let Him handle things.  Please pray that He is in control of tomorrow's evaluation.

Thank you!

Feeding Tube Awareness Week - February 5-11, 2012

Well, I might as well post about Feeding Tube Awareness Week on my blog that I somehow never manage to keep updated!  I just found out about this a few months ago and it wasn't until a few weeks ago that I decided I wanted to do something for it.  I contacted Jordan's Early Childhood Special Education teacher, Pam, and asked her if I could come in to her class and talk to the kids about Jordan and her feeding tube.  Pam loved the idea and I am scheduled to go in on Wednesday morning.  That led me to thinking about who else Jordan has regular contact with that may benefit from learning more about her and her tube.  I checked with our church's Children's Ministry Director, Michelle, and she also loved the idea of telling the other preschool kids at church about it.

Yesterday, I went in and spoke with the kids and teachers.  It went pretty well.  I read the book "My Tubey" and then shared a little bit about Jordan and told them how she gets her food (fortunate for me, it was feeding time so we put on her backpack and hooked her up).  My favorite comment was the little boy who raised his hand and responded "when I was a baby, I was sick and that's how I got my food." 

I also wrote a letter and had a list of helpful resources that I sent home with the parents.  Please take the time to read and learn :)
Feeding Tube Awareness Week Letter
Feeding Tube Awareness Week Resources

Thanks for taking the time to learn more about feeding tubes and those who live with them or love someone who has one!!