Thursday, September 30, 2010


Katie's tongue has been hanging out like this for about 10 days and it's driving me nuts!!  I took her to see the pediatrician and I've asked all of her therapists about it and even the orthotist. I was told that kids do this when they have a sore throat but I am pretty sure this is not the case.  The other idea is that because she is working so hard on walking right now, that other things might regress.  And because the tongue is a big muscle, maybe she can't focus on keeping it in while also working on walking.  Geez, I hope this is the case!

This happened once before over the summer for less than a week and then it just went away.  I had forgotten all about it, until now!

If I had a margarita in hand I'd be toasting to the hope of this tongue phase being done with, soon!  


Thursday, September 23, 2010

Getting taller!

Katie has always been a small fry for her age.  Her weight recently made it on the charts however, her head size and height are still lingering somewhere else. Katie's gastroenterologist has had me add Carnation Instant Breakfast Drink to all of her milk for the past few years which has worked very well to put weight on her.  I see now how adding weight when you're a  kid (if you're underweight) causes you to grow.

Katie's (too short) braces she has outgrown
I took Katie to see her orthotist (who is in charge of her leg braces) in June.  At that time he said they fit her well and that she probably would not need new ones until October or later.  Well, all of a sudden last week she was outgrowing them!  I noticed her toes were at the edge of the AFO (ankle foot orthosis) which is a molded boot that goes inside the brace. I took her in right away and Brett (the orthotist) seemed amazed at how quickly they didn't fit her anymore.  He pointed out how the braces are really short on her because they come way down below her knee - where three months ago, that was not the case. He also said that when kids start walking, generally they really start growing, fast.  Whoa - I guess!!!

  With Katie spending the summer in Tucson at Conductive Education - walking so much, and now the treadmill therapy and walking with us at home, she is just sprouting up really fast!  We always thought we'd have a tall girl since Paul is no shorty at 6'2" and I am 5'6".  Keep growing Katie!  I'd love to have you in size 4 pants by the time you are 5!

When we get her new braces in a few weeks I'll post a picture here next to this one to show how high up the braces really should be, and how much she has grown out of these ones.

Friday, September 17, 2010


Katie has a few sensory issues like combing her hair, putting on her glasses (I have to sneak up from behind so she doesn't see them coming) and sometimes getting a bit messy.  A note was sent home from school last year saying that she was not having a good time while they were trying to get a footprint for an art project, and she was doing some head butting and screaming.  They suggested I do more of that type of thing with her.  So, here she is having a good time with some finger paints. She really enjoyed it (although I didn't put her foot in it! ) and I was happy she transitioned well from painting to bathing.

Saturday, September 4, 2010

Amazing Progress!

Katie has no fear and keeps walking from the couch to me - usually 5 or 10 good steps (and sometimes not so good steps, but steps nonetheless!).  It is incredible to see her confidence building and she is always reaching for our hands to take her for a walk around the house.  Last night it was nice enough outside that we were able to walk her -each of us holding a hand- down to the end of the block, which is about 3 houses worth of walking.  She did terrific! I can't beieve this is happening right before my eyes! 

We are definitely headed in the right direction - take a look at this video!

10 steps plus a bit of dancing!