Katie's Contraptions

  Katie has had so many different contraptions to help her with walking and balance. Here they are through the years:


Katie started wearing leg braces early on, by two-years-old.  She was probably about three or four-years-old here with a brace on her feet to keep them in the right position, and all the way up to her knees.  She has now graduated to using only a foot brace, and she is doing so well walking that she will switch to only a heel insert next week.

Katie had this Swash (standing, walking, and sitting, hip orthosis)  in preschool for only that school year.  It was left at school and they would put it on her for three hours a day.  It was to help keep her legs and hips in the right position while sitting and walking and prevented her from scissoring (crossing) her legs (when walking). 

We have seen several different walkers in our house throughout Katie's lifetime, this was the first one. It held her in and up since she didn't have much strength in her legs to hold herself up.  We usually had to bribe her with cake or some kind of dessert to get her to move in it.  Even though she is smiling, she really was not a big fan of this walker. 

Katie has done horse therapy for five years now, this is an earlier picture when she still was in glasses, and so little!  Hippotherapy has helped Katie to gain core strength and works muscles that are not usually concentrated on.  I think that this  has helped her a lot with sitting balance, as well as her balance in general.

This lovely outfit is a SPIO (stabilizing pressure input orthosis) . It is a compression garment and expensive ($300.00) and helps kids to know where their body is in space because it is tight to the body.  It is also supposed to be good for kids with autism.  Katie wore this under her clothes for about a year or so, and here in Phoenix in the summer that is no fun!  She mainly wore it in the winter.

Here is Katie today, this morning actually - carrying her backpack around the house, she loves her backpack!  She is walking pretty well and I must say does not like to sit still, which can be hard on a Mommy over 40 (way over)!

All of the above have helped her to get to this point, and although her balance is not yet without worry and requires "catching" more often than I'd like - she is doing better and better every day.

Signing

Katie has learned a few signs.  It has been a long road since her motor skills are not the best, and she has her own variations of what works for her.  She just learned "food" the other day and has been using it quite a bit.  It took about a month for her to learn "me" (about 6 months ago) and she picked up "food (or eat)" in a day!  Priorities, you know...

signing

Odd things

Here I am at Starbucks.  I don't even like Starbucks that much but I found a gift card.  I'd rather have a coffee from Circle K but they probably don't have wifi and seating.  Katie is right now in her summer program (Conductive Education) most likely walking down a long hallway between obstacles, up and down stairs, picking up rings off the floor, kicking balls - I am sure she is having a blast. I'm lucky that she thinks therapy is more fun than Disneyland.

So, thought this was a good time to take a few minutes and write. I have however, forgotten my reading glasses - so if you find mispellllinz, that is why.  :)

Katie has proprioception issues which is, "the ability to sense the position and location and orientation and movement of the body and it's parts."  This is not news to me, but some odd things about her that I think could be related to this are:

 1)  When her hair gets in her face she never brushes it away.  And my husband wonders why I don't grow out her bangs!  She will be sporting bangs for a while, hubby. Or this one:

2) If she happens to sit on a toy she doesn't seem to feel discomfort.

3)  Not once has she tried to scratch an itch, ever. She feels pain and tickling, but when it comes to these other things - nothing.  How can you not have an itch?

Recently (before it was 119 degrees) we were in our backyard and Katie was playing with the small rocks in our planter.  I looked away for not more than 5 seconds and when I looked back she had ants all over her hand. She was fine until I started yelling and slapping them off of her. They left little welts that hurt me more than her.

On the other hand, no pun intended, she is so empathetic when others get hurt.  About two months ago I sliced my fingertip off with a new slicer I bought - damn slicer - I should have read the directions. Katie cried for an hour even though I was containing my freaked-outness pretty well.  I kept reassuring her I was fine as I tried to control the bleeding. Man, fingers really bleed!

It's good to have an empathetic child but if there is someone crying or hurt on TV or in a book, or if you say "ouch!" she gets all teary-eyed.  What a nice kid I have!  Too bad she can't feel her own itch or brush her hair out of her eyes.  For now we just make sure we have a lot of rubber bands in the house.

Hope

We should know in about 3 months the results of Katie's DNA study.  It can go 3 ways: showing absolutely nothing, which would not be good.  Showing something that can be fixed, somewhat at least - which would be awesome!  Or showing some diagnosis that could mean she just stays the same or gets worse, or maybe a little bit better with therapies.  I think I'll be in tears in any case, hopefully good tears.

I guess it is what it is, and it will be good to know what it is, if possible. Katie is such a really good kid, I just hope that this hope I have is not going to be crushed to nothing.  I can't imagine hearing that this is how the rest of her life will be, never talking, walking unbalanced - she really is in there trying to get out, I know it!  I have a lot of hope, but I do have that hope in check.

I watch the videos of Shelby (see recent posts) and think that if it can happen to her, why not Katie?  I HAVE to be a little bit optimistic that Katie might also be one who can benefit from finding out the DNA results, I am her Mommy!

I believe we are all here on earth for some reason and I am hoping hers is to help science.  C'mon science, please be on our side!    

DNA Study

I've been busy.  I think I just aged 10 years in 4 months by having a big fundraiser at my house.  I'm still returning un-opened forks and Vodka, etc... so I don't know how much we raised yet, but it was fun!  Life should be back to normal in a few days.

Today we went to see Dr. Narayanan - he is the Dr. in charge of the DNA study that Katie is in.  I was thrilled to hear that we should hear back results within 3 months or so.  They had told us initially it could be up to 2 years so, whew! What great news! So for now, I am not going to pursue any other treatments.

Here is a video of Shelby, basically a miraculous recovery for her - she saw Dr Narayanan and was one of the first to have her DNA mapped at T-Gen.  I don't want to get my hopes up but maybe there is some chance of a recovery like this for Katie.  I am not counting it out, that's for sure. Shelby




     

February

The other day Paul says to me, "Hey, your blog is pretty good!"  Lol! I didn't think he ever read it because he really is busy with work.  But since he sprained his ankle three weeks ago running in the Spartan Mud Race (he's never allowed again), he's had some extra time between watching all the movies he's taped as he's sitting with his foot up and on ice!  I guess everyone needs a few weeks vacation once in a while, but if I see another Planet of the Apes or Rocky movie on our DVR, I might lose it.

So, Katie turns 7 this week! Seems crazy.  It's hard for me to think it's been seven years already with this lil' cutie!  She really is walking better and to think that last year she was using a walker at school... she is coming along just fine!  Her speech isn't moving along as fast, however, she is able to use her talking device to specify what she wants to eat, point out animals, colors etc.. and she is now doing signs for "more," "please," "me," and shakes her head for yes. I think we'll get there!

I am busy planning a fundraiser that is later this month and am just going to put it out there that if anyone has any service or item, or - we even take monetary donations  :)  for our silent auction, please contact me! amymurphy10@gmail.com  We've got some great things already but could definitely use more.

Every penny will go to Katie's Summer Camp she attends which helps 15 kids with motor disabilities, and if you live in AZ, it's a tax write-off. Well, this is worth a shot, I'll see what happens.

Picture

I just love this picture!

Neurofeedback

Looks like it could be two years before we find out any info from the T-Gen study, ugh!  They said "up to" 2 years, so hopefully we find out something sooner.

So in the meantime, what to do.  I can't just wait for two years without trying something else.

I didn't have great luck with Absolute Health - bad customer service so I only took Katie twice (for biofeedback).  Then last week I saw a sign on the 101 freeway for "Scottsdale Neurofeedback" and called and talked to the director.

 I told him about my experience with Absolute Health and all about how when we tried the neurofeedback there, Katie wouldn't have any part of putting the swim cap type of cap on her head.  He gave me a ton of information and let me know that he is the one who does all of the national and international training on this.   And that his people have to go through a year of training (unlike other places) and said that even if he only can get one electrode on her head (as opposed to the cap full of them), it would give him useful information.

They do a brain mapping with the cap, it tells a lot of info.  Hopefully we can work on getting Katie up to using the cap, somehow.  He said they had a woman come in who had a stroke and was not able to say even one word.  They did a brain map (with the cap) and could see that her stroke was right at the speech part of her brain.  She had 40 sessions of neurofeedback and now speaks beautifully, he said. He seems like "the guy" to go to for this.  Am I reaching for straws?  Maybe, but what else is a mother to do?

 http://www.scottsdaleneurofeedback.com/

So, I am going to look in to this and see if it could benefit Katie.

T-Gen Study

In a big open space Katie will just keep walking.  I don't bother to count her steps anymore she is doing so well!  Her balance is still off but seems to be getting better.  What you can't see is Paul right next to her waiting to catch her if she falls.  Daddy's girl for sure.

We all had our blood drawn for the study (last post) and if they find something they will let us know.  It will probably be months before we hear anything at all. They check all three of us (our DNA) in case something shows up with Katie, they can see if is related to one of  us.

Anyone who wants to donate to a good cause, T-Gen relies on philanthropic donations and a lot of  kids will have to wait for the funding before they can have their DNA mapped. Here is the website for the Center For Rare Childhood Disorders just in case you'd like to make a donation:

http://www.tgen.org/research/index.cfm?pageid=1547  

I think this might be our best bet yet for finding out what is going on with Katie.  I'm very hopeful but there is a chance they won't find anything at all.

If you haven't seen the video of Shelby on this website, it is worth five minutes to see her miraculous changes, and it explains the study, DNA mapping etc... very interesting! 

Our lucky day!

I will update you on Katie's general happenings later, but for now - GREAT NEWS!!!!

Katie was accepted to be part of a study that will look at her DNA to try to figure out where in her genes there is something that is not right.  You must watch this video about a local girl who was helped by T-Gen.  T-Gen is a research facility right here in Phoenix that now has a Center For Rare Childhood Disorders. Shelby, the girl in the video has quite an incredible story.  I think this study will give us a lot of hope to find a diagnosis or maybe even something to help Katie, just like Shelby.  I need a box of Kleenex every time I see this little girl telling her story: Shelby's Story