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. 

Drinking Fountain skills

 Katie catching up on the celebrity gossip

Katie is in the last week of her Conduction Education Summer Program.  It's amazing to see how much it is helping her - her balance is just getting better and better.  I have also seen changes in the other kids in just five weeks, it's exciting. Katie somehow also acquired the ability to use the drinking fountain during CE, so I took some video today.  I was going to put the video to music because my voice seems so high pitched in this video, it really bugs me!  But Katie's cute sounds outweigh my voice so here it is, pitchy and all:

Click here!

The Family Hope Center - If you are following my blog, this one is important!

I am all for promoting saving your child's cord blood, but want everyone to know that we do A LOT of therapies with Katie, and although I believe the stem cells did help her, I don't think that they are a miraculous cure for Katie's symptoms.  She definitely seems to be improving at a little faster rate, and I hope a lot of it is due to the stem cells, but the media seems to portray it as a miracle, and it really isn't.  Not for us anyway. My friend told me that after watching our video on TV, her husband thought they should have another child to help the one they do have who has low-tone like Katie.  Oh Gosh!  That made me feel bad!  I know stem cells are used to treat many things, so if you can afford it definitely do it, and hope you never have to use it.

On another note, I met a couple a few months ago who have a daughter with Down Syndrome.  They told me about a place they took their daughter called The Family Hope Center, in King of Prussia, Pennsylvania. I was intrigued with what they told me and how much their daughter had improved in many areas, including vision and walking.  What got me the most was when her father told me that he was very skeptical of going to another place to "help his daughter" when they had already seen many specialists, and after an hour of being there (in a seminar about how to help your child with brain injury) he was completely sold on what they were telling him. So, I went to the seminar a few weeks ago.


The Family Hope Center believes that if your child has a brain injury, treat the brain injury not the symptoms. I believe, along with many neurologists we've seen, that Katie has brain connections that just are not connecting.  One example would be how we treat Katie's legs with physical therapy.  Because there is nothing physically wrong with her legs, and it is really the connection from her brain to her leg that is the problem, treat that! I do not regret any of our therapies we have done, because they have helped Katie, but I think this new approach to treating the brain injury will push her ahead at a much faster rate, and treat more than one symptom at a time.  


I will tell bits and pieces of this program over time, but one of the most important things I need to help her with is going back to basics- crawling. When you crawl, which she never did, (both belly crawling and on all fours, called creeping) it lights up different parts of the brain that don't get lit up any other way.  Crawling is also responsible for the ball and socket of the hip joint to grind together, this creates a smooth joint and allows for a nice walking gait.  When Matt, the Director of The Family Hope Center was explaining this, he said, "If you don't crawl, you will walk like this," and he walked across the room exactly like Katie.  It was crazy!

So the idea is that if you can do a program with your child (they teach you how) that involves crawling, sensory, reading, deep breathing, and more... most children with a brain injury (autism included) will improve dramatically.  It is going to be a lot of work, they recommend six hours a day - I think I can get in four.  Katie is so social and loves being around other kids so I will not keep her out of school to do this all day.  I think she would miss it tremendously and miss out on learning from the kids in her class.  I know Katie has a lot of potential and hope that in six months to a year she will have huge changes.  I also realize I am lucky because I have the time to put into this since I don't work, and that many people just do not have this kind of time. But I think there are things to take from this program that might be easy to incorporate, even with limited time.  Others who attended the conference did not have a lot of extra time in their day and are going to focus just on what's most important in helping their child.   I will definitely be writing a lot about what we are doing with this program at home.  I am so excited!

Katie is in her Conductive Education Summer Program and doing well, they are crawling with her and she is also walking all over the place in her "Frankenstein" type of gait! I talked to Bea, the Conductor from Hungary about the ideas at The Family Hope Center and was relieved to find that they agree, which made me feel good because CE has helped Katie so much, I have a lot of respect for this program.

I will start Katie in mid-July with this new program when CE is over and I have more hours in the day to work with her.

Here is The Family Hope Center Website:

http://www.familyhopecenter.org

TV

Here it is:   ABC15

Sorry it took me a few days to get this on here but I've had a major toothache since Saturday and was finally able to get to the dentist - so everything else suffered in the meantime. My crown is now joined by a  root canal.  What an expensive tooth.

Another TV Debut!

Katie will be on TV again!  Should be Monday evening (Phoenix) on channel 15 - ABC, we don't know what time specifically.  Last time I had to DVR all of the evening news slots.  I will post it on here as soon as I am able. 

Tongue, again!

What's the deal with this tongue hanging out again.  I think it's almost over as this morning she had no sign of it. But for about the last two weeks Katie has had her tongue out all the time and this has happened before, about every 9 months to a year it seems to happen.

When we were at horse therapy last week one of the therapists said it could be due to a growth spurt.   She explained why and it made sense at the time, but I have no idea how to put it in writing as I cannot remember all the specifics.

Makes me nervous as she's constantly trying to walk around and I'm afraid she'll fall and bite her tongue!

Today I had to leave her for a moment to let Paul in the front door and as we walked back into the living room, there she was walking to us from the family room, about 30 steps.  Exciting and scary all at the same time!