There has not been too much action on Baylor’s journey right
now, which is a nice little break from the constant go we are on. She is still
going to speech and occupational therapy twice a week and school two other days
each week. Her schedule will shift in July to three days of school and two of
therapy. She is a busy little girl! So is her chauffer. Do not think that just because she has all
this going on that she has not gotten to enjoy her summer.
You should see her little stuff in the pool! She has this
floatie/life vest type thing that snaps on the backside and she has crazy
freedom with it. She jumps off the side of the pool after saying a prompting of
sorts (something along the lines of “ready, set, go”) and goes completely under
water without the need to be caught. She then dog paddles to the side and
sticks her head under water, pulls it up to breathe, back under again all while
dog paddling. She will go up the climbing tunnel and down the slides all by
herself at the pool and then swim out to the deep end. Two and a half hours
later, she still wants to keep going. So does Ainsley, but I have to stop them
at some point or they would turn into raisins. We have been enjoying watching
them love life.
Bay is taking a break from chelating due to some unwanted side effects.
Apparently what we were using and the method was causing Baylor to have yeast
outbreaks. Basically yeast can overgrow in the intestines, or the gut, and
directly affect mood, behavior and eating habits. Bay would act really silly,
almost like she did when she was eating gluten and dairy. She would laugh all
the time, wake up and laugh for hours at night and then all she would eat was
carbs or sugar. This was not helping her in therapy at all. She could not
concentrate and we felt it may be the wrong way to chelate. Graciously, God led
a sweet woman to reach out to me to talk to me about the method we were using
and another method she uses and the pros to what she is doing for her boys.
There is a brilliant man named Dr. Andrew Cutler, who is a biochemist that had
mercury poisoning from dental fillings and went into a lab knowing how the body
works and came up with a way to get rid of the heavy metals in his body. His
method calls for a more frequent dosing of a chelator that is done every three
hours (including overnight) over every weekend for at least a couple of years. Apparently
his way is more effective and safer, and children who have “recovered” did it
with his protocol. I talked to our doctor and he is on board. Yay! We have not
started yet, as we need quite a few more supplements in her system before we
can start. Hopefully we will be able to soon as we are ready to get the metals
out of her system.
Therapy is going well, and Baylor is repeating a lot of what
her therapist is trying to get her to say. Bay is still slow moving in the
spontaneous language but she is going at her own pace. We are happy to see ANY
spontaneous language. She is using some short phrases which is really great.
Today after therapy she went behind a bookshelf as I spoke with her therapist
and we walked over to her and she said, “I poo-poo. I poo-poo.” That’s awesome! Not that I got to change a
stinky booty, but that she told me she went #2 and she used first person. She
also says, “I don’t want to” and “I do it”. A lot of children on the spectrum
can’t use first person correctly. This is not something we have had to teach
her. Ooooh, something else new....
Baylor is loving on her therapist and going up and touching
people she does not know. She has been going to my friends and people sitting
down around her (I suppose she thinks they are there for her) for interaction.
Again, social situations are usually another hard area for ASD kids. She is
coming out of her shell and trusting others a little. She played with a good
friend of mine in the pool today. I came over to her and she wanted nothing to
do with me because my friend was playing with her and she wanted to continue
with her. Honestly, I am not sure my writing can convey how big this is for
her. She used to only let ME hold her, love her, play with and touch her. She
did oxygen therapy and she began to interact and let others touch her. She continues to let that interaction grow each month. Now, she
does not care that much when I leave her and when I come back she does not act
like she is surprised I am there. Seriously, her understanding is growing and
with it comes more typical behavior. She is being blessed by her Creator. We
are in awe and give thanks daily for our blessings.
Please continue to pray for our sweet Bay. She is doing very
well but we have a lot that we still need to have in place to have her heal.
Currently we are waiting on our coordinator to arrange how many hours of ABA
therapy we can get. We had our evaluation a few weeks ago but we need approval before
we can find some time to schedule this therapy. This is in-home therapy that is
not covered by insurance in the state of Tennessee. Right now we will be
covered (whenever they get around to it) under the state until she is 3, and
then 4 hours a week will cost around $1,600.00. We are working on getting her
some grants because, seriously, who can afford that? If any of you know of anything
that could help with this, please let us know!
Music therapy is on hold because Baylor will not tolerate
the headset any more. Awesome. I may try again in a month or so. Sigh. I am not
sure what happened there. We are waiting on an appointment with Vanderbilt to
help get us in with neurology and possibly genetics. That appointment is in
July.
So I thought this would be a short post but apparently not! Well,
at least you are up to speed J
We are still looking forward to the WALK NOW FOR AUTISM SPEAKS in September.
Feel free to visit our site and we will update soon! www.walknowforautismspeaks.org/tennessee/baylorsfamily.
Thank you for your love, support and prayers. It means the
world to us.
Love always ~ Team Bay
