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

Sigh!

Oh how I hate being disappointed, especially when it comes to Katie and her therapies.  Here I just wrote  about how excited I was to get her going on this neurofeedback because it seemed like it could help her so much, and what a disaster!

Had I known it required putting a cap on her head similar to a swim cap, and THEN that she had to be calm and keep her eyes closed - well I would have known this would never have had a chance.  We tried, we failed.  At least we tried.  As I write this I am sitting here with my glasses on because those contacts would just not go into my over-tired eyes as I was up all night worrying about what in the world to do about this.

So I just called my neighbor.  She is a physical therapist and her client is the person who took his daughter in to this place (Absolute  Health) and raved about how much it helped her.  We talked, and figured out that this girl had the biofeedback done, not the neurofeedback. The biofeedback uses a headband, wrist band, and ankle band, and is somewhat similar to the neurofeedback, just not as quick or extensive of a therapy, as much as I can figure out anyway.

 Katie did okay with the bands, as long as we had the iPad to keep her entertained and make her forget there were these bands on her, it was for about 1/2 hour.  The biofeedback was interesting in that "frequencies" or electrical impulses were sent back to the computer and told the doctor what parts of Katie's brain were not functioning at full capacity, then the doctor was able to send out more frequencies at one every 5 seconds to a specific part of Katie's brain to correct it as much as possible. She said that Katie's frontal lobe was working at around 44% and after the biofeedback - it was about 25% better, which in her book is a huge number, as it is usually around 5-6%.

 I know this sounds all Hocus-Pocus and you are probably on your way to sell this Arizona resident an ice scraper - but if you had a child like Katie I would hope you would do whatever it takes too.  I do not do anything at all that might harm her (these frequencies are extremely low and safe) and I have put this therapy off for a year because I didn't really know what it was all about, but after hearing three people talk of huge successes, we have to try it!  

So I feel better.  I am the type who, after being all disappointed is now thinking that there must be some reason the neurofeedback isn't in the cards for her.  Maybe the biofeedback is all she needs. Maybe she doesn't really need any of this, but if it doesn't hurt her and can only help, I have to try.

I am waiting to hear from Absolute Health about what exactly to do now. They were going to see if there was any other way to do the neurofeedback, but I think the road ahead is biofeedback. I'll let you know.  Oh I need a nap!

05/12/16 No, just doing biofeedback was not an option.  This is not in the cards for us.  

October

Wow, it's already October.  Time is flying and I still can't believe Katie is six years old.  Maybe because developmentally she is not six, but she sure is improving!

I've been doing some leg exercises with her in the morning that seem to be helping her gait to be less of a side-to-side motion and a little bit more normal and stable. I feel guilty because I haven't done some of the stuff I had learned at The Family Hope Center, but certain things I am doing a lot of, one of them being the leg exercises called the Marie Foix reflex.  All in good time!  I plan to start some of the other things I have learned there soon.

  I have changed her therapies and am focusing more on things that might help her brain since it seems she probably has some connections that are not connecting.  We start tomorrow with a Braincore Therapy -really interesting stuff and I am taking her there because I know three people who raved about how much better their kids are from it. From GI issues (constipation) to sensory issues, to speech, etc.. Whoa!  That would be huge!  If Katie stops slapping her hands over her ears from noises, that's going to blow my mind.  And this might happen.  If she starts talking, well I just have to see that for myself before I even attempt to think about that too much.

This therapy is not cheap, but with three people reporting huge changes, we have to try it. You can check out the website if interested at www.braincoretherapy.com

We will be doing 20 sessions, so I will be reporting back if I see any changes, or not. But I am sure we will!    

05/12/16 We ended up not being able to do this therapy as Katie would have to wear a type of cap similar to a swim cap with electrodes attached - and that just was not happening.

Cart

Okay, so - not the best picture but you get the idea that Katie is pushing a cart.

I took this from a video, and the point of this picture is that we have had this toy shopping cart for many years and she is just now able to use it. She can load up the food, pans, and baby, and she's off!  Well, not without a little help from Mommy.

Until now, Katie was not be able to balance or have the strength to hold herself up and push this cart at the same time.  All of these little accomplishments are so big for her, and us!

Now if only I could give her a list in the grocery store and send her on her way...

School

Katie started school and is loving it!  She is quite the social one and I am sure she is so glad to see her friends at school again.  Her teacher can't believe how well she is walking and how much she has grown over the summer (same terrific teacher as last year). 

Here, she is sporting her hot pink Michael Jordans - good ankle support.  Katie is walking all over the place and can literally go from one end of the house to another.  Her balance is not perfect, but much better than the beginning of the summer.  We follow her around like over-protective parents and make sure there will not be anymore broken teeth.

After six weeks of the Conductive Education Summer Program (3 hours a day), she is showing a lot of progress.  The walking is sure coming along, now if we can just get her talking.  Oh, that would be awesome!         

Puzzle

Wowie! Katie can do this puzzle and she can even get the triangle in!  I remember the day (not very long ago) when I wondered if she'd ever have the coordination and motor skills to to do a puzzle. Now she's a pro at this one.  Next in line - fruit puzzle.