Monday, December 5, 2011

AFOs & Button

We spent the good part of another day in Fairfax this past Friday.  Our first stop was Orthotic Solutions to pick up Callie's AFOs.  I was surprised that it took over an hour to tweak their fit.  The orthotist added straps and several pieces of foam to help them best fit Callie.  Unfortunately we haven't been able to try them yet because they won't fit into her shoes.  I spent a couple hours today shopping for shoes that would fit them with no luck.  She wears about a 5 1/2 W toddler shoe.  They need to be about a 6 1/2 XXXXXXW to accommodate these things.  Hopefully we can make due to a 6 1/2 XW or XXW if I can find one.  A wonderful man at the Stride Rite outlet tried just about every shoe in the store on her tonight without any luck.  I am hoping I will be able to order a pair online.

Our next stop last Friday was Fairfax Hospital.  Callie was scheduled for another endoscopy (to check for EoE flare ups) and then a G tube swap.  They replaced her PEG tube with a MIC-KEY button.  It is much more compact and I like how the tube does not extend from her tummy any more.  I wanted to go straight to the super low profile Mini One button, but the hospital does not stock them, so we will change to this type in 3 months (the button will be changed every 3 months going forward, which I will learn to do at home).  While it was hard seeing Callie put under yet again, for the first time I did not cry so I guess I am getting used to this routine.  The scope looked clear indicating we are safe with the foods that have been introduced so far (apples, bananas, sweet potatoes, and carrots).  Biopsies were taken to confirm the results.  We will meet with the EoE team next week to discuss her case and next foods to try.

After the hospital procedure we headed to the G tube clinic for training from the GI's nurse.  After I was shown how the button & extension tubing works and should be cared for, we were sent home.  Callie & I were both exhausted and took much needed naps.

Callie's belly seems tender and she is defensive when I lift her shirt to hook up her feeds.  She fussed a little before every meal this weekend, which is not like her.  Hopefully the discomfort will pass soon.  She continues to be a brave little girl who endures so much.  I wish I could take all the pain on myself so she would not have to deal with any of this.  I will wish that for the rest of my life.


Joanna said...

I hope her tummy is feeling better! You are BOTH so brave and strong!! It constantly amazes me.


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