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! 

Fundraiser

Our Casino Night / Silent Auction fundraiser was put together by a few of us parents who enjoy having the Conductive Education summer camp here in Phoenix for our kids, rather than spending all summer away from home in Tucson. I spent about two months of my life working on putting this together, and I must say it turned out better than I thought!

We charged $50 a person and had about 130 people show up. Thank God the weather was good, that was a big concern because I didn't know how that many people would all fit inside my house if it was pouring rain. Whew!  My sister came from Colorado and I put her to work typing up all the info on the silent auction items, thank you Mindy!  Next time I am sure she will just fly in a few hours before on the day of the event - I would!

We had gaming tables: 5 blackjack, 1 craps, and 1 roulette table.  It was so much fun!   The dealers were terrific and would teach you how to play if you wanted.  We had catered appetizers that are still getting rave reviews.  We had an open bar with two bartenders and went through a lot of vodka and wine. We had 12 dozen donated alcohol infused cupcakes - delicious! (After Hours Cupcake Bar).

We profited over $8,000 which all goes toward the summer camp.  I am hoping this year the summer camp will help Katie tremendously with walking and becoming more balanced.  She will also work on other things like sit to stand, feeding herself with utensils, drinking from a cup, and other fine motor skills to help her with daily living.



Here is a recent video of Katie, I took her to the park and let her go:  Walking in the park

Hello?

Oh hello blog! Do you remember me?

Sorry blog, I have been crazy busy for two months with putting together a fundraiser that happened at our house on March 31st.  It was a big success (so far raised over $7000! ) and so much fun!  We had casino night and silent auction items, food catered, and lots of vodka drinkers who seemed to be having a great time throwing dice and winning fake money at blackjack.

I will post more details about this event next week when I get the final count on the money that was raised. All of the money will benefit our summer camp program.  I think the event went off without a hitch, except next time I will not be drying my hair when the early birds arrive!

 More details to come!

And Katie is doing great, still preferring to walk around rather than sit and do ANYTHING, (I'm exhausted!) and her balance is getting better and better.   

Bungee

Swan Rehab got these new bungee cords that help Katie with learning how to jump, help with her balance, and I am sure other things that I cannot remember they told me. She loves being in these bungees, and seems to like to jump, which she does not do otherwise.  Here is the video: Bungee

Katie seems to have "all of the sudden" gained much better balance in the last few weeks.  It's such a milestone for her (and me!) and is really a good feeling to actually see that all of these therapies (and there are many!) have now amounted to this.  She still needs to be watched closely while walking around because she will still fall backwards which can be frightening, but I am just simply amazed at how well she is doing.  It is really exciting, and a sense of relief that she may be walking well soon. By soon I mean, oh, hopefully within the year. :)

Check this out!

All of the sudden, Katie just took off and walked around our yard for awhile!  Here she is at about 25 steps, this is so incredible - it's as if something just clicked!  We are so proud of how far she has come.

Walking!