Monday, February 22, 2010


Proprioception:  the ability to sense the position and location and orientation and movement of the body and its parts.

In Katie's case, she cannot tell where her body parts are in space (legs, arms, head, etc...) although it is getting better. Leg braces help Katie with proprioception because when she feels the pressure from the braces on her legs, she can tell where they are in space.  A year ago her legs were all over the place - she would raise her knees too high and criss-cross her legs while walking.  The braces also help to keep her feet in the right position (she was standing on the top of her right foot a lot - ouch!) and from criss-crossing.

 Recently when we were at the Orthotic Specialists, Katie accidentally banged the back of her head against the wall then she did it again, on purpose. Bret (the orthotic specialist) saw her do this and told me that kids with low tone tend to do that kind of thing because it lets them know where their head is in space - that she could "feel" her head when she banged it.  I know, I thought this was weird too.  I was so glad to have someone recognize this and have some sort of reason for it.  And it's the same story with her legs - probably more so than any other part of her body, I'm guessing.  Bret along with Katie's physical therapists said the proprioception should get better as she starts to become more independent in walking.  So... 

Katie has been really wanting to walk! She keeps reaching out to us to take her hands and walk - and then she goes forward with determination! With her leg braces on or barefoot, we have noticed better walking balance and her legs aren't crossing anymore.  She has her braces on most of the time, but when they are not on, I am seeing less of her standing on the top of her foot. Just about a month ago, we had a meeting with Katie's teacher and school therapists to discuss goals (she is in a preschool at the local public school in a program for kids with disabilities).  They wanted to know what might coax her to want to walk across the room in her walker, because they weren't seeing much ambition - I told them m&m's and puppets.  Well, within days Katie was showing a desire to walk at home, which I had NEVER seen before, and now without the bribery! This determination and wanting to walk is new, it probably started about three weeks ago, before that I had to be stocked up on cookies or chocolate. 

Katie has a long way to go before she will be able to walk by herself.  It seems to me that for the past two years she has been stuck in the same groove with very slow progress in walking, and now is finally making good breakthroughs physically, and also with her balance and coordination, that I can actually "see".  All of these little advancements will eventually add up to one independent walking child named Katie, I just know it! 

Tuesday, February 16, 2010


Two of Katie's therapists were here yesterday working together to get her to say "g" as in green. While I was running amok cleaning whatever I could in the hour they were here (it was President's Day, so Katie was home all day and I had not gotten a lot done), I heard them applauding her, and knew she must be doing something good!  They were pointing out green things in books and green toys, and  yes, I even heard Katie say the "guh" sound, and they both said that she said "gr" also.  I was happy to count about five rounds of clapping!  Katie doesn't say much, (around her parents anyway) and we really have to repeat a lot to get something out of her, or frighten her...  not on purpose of course.  The other day when our older dog had an accident in the house, I jumped up frantically to get the dog outside, and I must have scared Katie because she was somewhat screaming, "Momma! Momma! Momma!"   It was great!!  Too bad the dog had to poo in the house to get her to refer to me.  Oh, and there was the time I dropped a glass bowl...

Katie and PJ

Thursday, February 11, 2010


  I read books to Katie constantly, it is one of her favorite activities.  She has been good at turning the pages for quite some time, and before her transfusion she started touching the page with her whole hand, but she has never pointed at anything, ever.   Now, all of the sudden we are seeing her point at the pictures on the pages!  I will ask her to point to the cow or pig, etc... and I would say that she gets it right about 60% of the time.  She still doesn't point at things that aren't in a book, but maybe that will come!

Wednesday, February 10, 2010

Walking with walker

Katie has actually initiated walking in the last week - which is totally new!  She will reach out her arms to me and go, "uuuuuuuuuuhhh!" and when we walk she has a big smile on her face! Here is a video from yesterday to click on and see her pushing her walker with her therapists:

Monday, February 8, 2010


Wiping drool from Katie's face is almost like breathing for me.  It's just something I do and don't think twice about, like a reflex.  Katie has drooled since she started teething, and hasn't stopped.  I always have some sort of a towel with me, or nearby in a drawer, and I would estimate that she drools enough to earn a face swipe about five times an hour.  It's not terrible drool, but it's enough that it gets her shirt spotty, and I have to cover the couch with a blanket, just in case.

Well, the drool has almost stopped!  Since the transfusion, we have noticed the drool getting less and less, and Katie still gets a face swiping occasionally, but I'd say it's about five times a day rather than an hour.  The drool has been a thorn in my side to deal with constantly for three years, so I am beyond thrilled to see it diminishing. I am no scientist, but I am sure this wonderful accomplishment must be related to her recent lip puckering (see past post) and although that only lasted three days - it must have made her mouth stronger resulting in less drool. Makes sense to me!

P.S.   After I wrote this last night, I was getting Katie ready for bed and she was just drooling like crazy.  Her mouth was open a lot and it seemed like everything I had just written was just a fantasy.  So, this morning when I got her out of bed, Paul says, "Look, she's doing the lip thing again", and sure enough she was puckering her lips, and no drool this morning.  Whew!  I guess this is a process that will unravel itself in time.

Update: Today is 02/19/14 and Katie does still drool somewhat but it is not too bad.  I think she forgets to swallow!  She now wears bibs (cute ones) and they are dry for the most part. 

Thursday, February 4, 2010


Katie has some sensory issues and brushing her hair is probably the thing I most dread everyday - so if you see us and she looks a bit unkempt, now you know why.  Brushing her teeth is not fun either, sometimes I have to pin her down and sing a song.  This is all a bit stressful for me, but  I must say she does have some pearly whites through my efforts, and no cavities!

Those teeth - ugh!  Does every kid have sharp little knives in their mouth at this age?  I don't know if all kids tend to clamp down with their teeth and not let up, but my girl is a pro at this.  So a few days ago, when she had something in her mouth and it wasn't lunch time, I knew it was probably not a good thing.  I could see that it was a sticker she was chomping on.  I had to think fast before she choked on it, so I stuck the end of a pen (the non-pen end) in her mouth so she couldn't take off my finger.  Then I quickly swiped out the sticker, and wha-la,  no choking hazard anymore, just a screaming kid.  I am hoping for the day when Katie stops putting things in her mouth and lets me brush her hair and her teeth without a big scene.

Tuesday, February 2, 2010


Spit up is not a fun topic, however, I must talk about it. Katie has taken Prevacid once a day for about two years, for reflux. If she doesn't take it in the morning, she spits up in the afternoon.  We have both had many a shirt ruined because of it, let's just say it's not pretty.  Having reflux also tends to hinder her appetite, so the Prevacid has been a good friend to us, her appetite, and our wardrobe!

When Katie had the flu recently for a week she hardly ate a thing, and I wasn't able to give her the Prevacid, but  I noticed she hadn't spit up.  So I haven't given it to her since (2 weeks), and now that she is over the flu, she is eating well and has only spit up once.  I called the Dr. yesterday, and she said it was fine to keep her off of the Prevacid and see how she does without it.  We expected Katie to outgrow the need for this medicine eventually, and I had in the past occasionally tried to take her off of it, but it always backfired.  I am very hopeful the days of spit up are over, and the only downside would be that I lost my excuse for clothes shopping.