January 30th, 2009

Kinnick and Carver did more treadmill training this past Wednesday.  Kinnick walked 9 minutes on the treadmill with us holding her torso.  She doesn't like the harness.  She's doing really good with her walking - just needs to work on her balance.  Carver walked 10 minutes with the harness.    He's still trying to walk on his toes.  He gets molded for his DAFO's on Tuesday.  

Kinnick and Carver's OT worked with Kinnick - trying to teach her to side step.  She also helped Kinnick walk from the great room to the kitchen by feeling the furniture all the way to the highchair in the kitchen.  Kinnick seems to be doing a little better about touching things while walking.  She's pretty picky about what she'll touch.  Kinnick's PT is also working with Kinnick to teach her how to get from sitting to standing.  I don't think it will take her long to figure it out.  She really wants to pull herself up.  We're still working with teaching Carver to sit without help.  He still really struggles, but is doing a little better.  

Kinnick and Carver got their synagis shots again on Wednesday.   They always get weighed before getting their shots.  Kinnick gained 4 oz.  She now weighs 17 lb 14 oz.  Carver gained 2 oz.  He now weighs 20 lb .05 oz.  He finally hit 20 lbs.    

We're still working to get off pureed foods.   Colds don't help.  Anytime they get colds, the eating goes down hill.  In addition, the fact that they are quickly approaching 2 years old doesn't help.  Those terrible twos.   Right now, they're eating pretty good for us.  We are still breaking up puffs and mixing them into their pureed foods.  We are putting 8 puffs in Carver's fruits and vegetables.  Kinnick is getting 4 puffs in hers.  We're hoping that if we gradually increase the crushed puffs that they'll get used to eating foods with a little more texture and consistency and will graduate to a little chunkier baby food.  So far, it's going pretty good.   In fact, Nurse Marci fed Carver 1/2 of a baby cookie the other day - not crushed.  He loved it.  He just gets carried away and we freak out and dig the cookie back out of his mouth.  He still gags a lot.

We see a developmental specialist on Thursday.  I can't wait to see what she has to say and to hear her suggestions.

I contacted a new eye doctor this past week that specializes in low vision and the blind.  He is new to Wichita and comes from Michigan.  In fact, at one point he worked at William Beaumont Hospital - where we travel several times a year to see Dr. Micheal Trace.  I'm excited to meet with him.  Prior to meeting him, I'm going to have a phone interview with him.  Our phone interview is scheduled for Wednesday afternoon.   He's supposed to be able to fit babies with contact lenses that have a built in iris replacement and a yellow color or tint that can help make lights more crisp.  Kinnick really struggles with light sensitivity and if she has light perception, it would be fabulous if we could make the lights more crisp.  If you've ever driven at night and the lights were blurry, this yellow color or tint that they add to the lenses makes the blurred light more crisp.   He's also supposed to be able to tell me K&C's actual visual acuity.  This is something no other eye doctor has committed to being able to do.  Because he is able to determine their visual acuity, he should be able to fit them with the best possible lenses and should be able to recommend the best rehabilitation program for them to optimize the vision they have.  I'm not sure how much he knows about CVI (cortical vision impairment), but he works with stroke patients and traumatic brain injury patients, so my hope is that he knows a lot about CVI.  Perhaps he can offer a rehabilitation program for Carver to help with his CVI.