Far From Sweet

Sweet Girl’s poop is N-A-S-T-Y with a capital gross.  It always has been…runny, smelly, clumpy, funny colored, undigested food (she doesn’t really chew so she does not give her GI tract much help), slimy…you name it.  It is now a pale yellow.  I am slightly alarmed.

I don’t normally like to discuss fecal matter, but it is a kiddo so it makes it a little easier.  Adult male excrement would be a whole different story.  Anyway…I have discovered that I am not the only one inquiring to bazaar ASD/SPD/GFCF etc poop.

There is a whole blog dedicated to pictures and discussion of bazaar and super curiously nasty body waste!

http://gfcfpoop.blogspot.com

If poop is your thing and you are not about to eat…go check it out.  Actually, it did offer some helpful advice in analyzing our several messy diapers per day.  They are all different and most catch you off guard.  When she is in nap you can walk by her door and smell if she has pooped, and then you roll your eyes, take a deep breath, brace yourself and enter with caution.  So often the poop has not remained in the diaper, but has freed itself and smeared, leaked, dropped or squished out.  Is it sad that I get excited when nap is over and poop has stayed right where it was supposed to?  It has gotten worse since we have changed her diet.  I wonder if there is another allergen in her diet that is bothering her?  I have seen solid poop along with the runny and slimy, but all very inconsistent.  I am very interested to get her allergies tested at our next appointment.

The poop has been pale yellowish several times over the last week.  Mostly formed, not runny, sometimes smushy unformed, but pale yellow.  We just started probiotics and I wonder if they are doing battle in her belly with the yeast?  I could not find a straight answer when I Googled “pale poop”.  Haha!  She does poop several times a day, is extremely gaseous, but on a positive side-her breath has improved significantly!

I have changed her sheets way too many times over the last two weeks.  The things we do for our children.

It’s hot.

Yes…it is disgustingly, nastily, grossly hot outside.  All of the sudden summer hit.  Woa.

The 4th of July was great fun.  Friends over, food on the grill and lots of fireworks.  They are legal where we live and several of our neighbors spared no expense in creating a lovely show for themselves.  The great thing is that we so conveniently sat in our yard and enjoyed their hard work.  It was loud and smelly…but an awesome display of fireworks.  I bet I could say the best I have ever seen.  Little Man hardly noticed.  Missy loved it all and was such a big girl and Sweet Girl really had a hard time.  She did not scream, but stayed VERY close and and stared.

I should say that as friends started arriving earlier in the day she started bouncing off the walls.  She seemed to love every minute and had to greet everyone and let them all know she was there.  She traveled around the house in hyper speed, ate A LOT and had a great time.  Right about the time it was getting dark, she started having some minor melt downs.  We all went outside for tons of flashing lights and extremely loud noise.  We did not really set her up for success, but we were able to do the activity fully and enjoy it as a family which was the goal.  She did pretty well and we all had a lot of fun.  Yeah United States and Happy 4th to all!

The next day was not so fun.  She was extremely clingy, cried about everything, wanted something and then did not, many-a-meltdown, and just seemed totally out of wack.  It was really hard to watch her and not really know what to do to help.  She seemed very uncomfortable and did not want any consoling.  It was a rough day.  Normally we deal with bazaar behaviors and a primal form of communication but a generally happy sweet natured little girl.  Saturday she was not happy at all and I was sad.

Sunday was better, much better.

I like to reflect and analyze everything and it drives hubby crazy.  I want to figure out what caused the problem and avoid it the next time so as to remedy any future situations ( I am especially bad when it comes to food and restaurants).  All day Saturday I was trying to decide if she was just tired, or her body was trying to deal with the over stimulation, or maybe she was cutting more teeth ( I will NOT put my fingers anywhere near the inside of her mouth in fear of any and all wounds…so no way of ruling this one out), something diet related, or any other miscellaneous possibility.  Maybe she just needed to get some screams and tears out.  I want to avoid sad days.

Man O Man…it is hot.  Thank God for the sun…and the air conditioning.

Smile!

Say Cheese!

Exactly what you get when you say: “say cheese!”.  Oh, she is so silly.

She loves people, puppies, places, hummus (by the fist full ugh!), colors, ceiling fans, lights, dancing, music, shoes, her daddy, the swimming pool, and she absolutely loves playing outside.

She regularly reminds me to live in the moment, enjoy the simple things and most importantly-to laugh.

Has it really been almost three weeks?

I think we are heading into our third week of gluten, wheat, dairy, soy free eating.  Well, sweet girl has.  The house has for the most part…bun-less burgers and hot dogs, rolled lunch meat minus the bread, no crackers or cheese…the grocery budget has undoubtedly grown significantly, but for the betterment of everyone.  She is eating things like zucchini and green peppers!!  It took a few times of putting them on her plate, but when she sits down hungry and that is what is there to eat, well, she eats it!  Imagine that.

Breakfast: Cereal, protein powder, almond milk, vitamin, enzymes and an almond butter smothered rice cake

Lunch: Calypso Cafe-Yum!  Chicken, fruit, and rice

Dinner: mango, kiwi, peppers, avocado, scrambled eggs, nitrate-ite free sausage patties.

She was not a huge fan of lunch as she wanted to sit in a big chair and not a highchair so she could hardly get to her food and she was mesmerized by the salt and pepper shakers and some straws.  She ate the rice and finally the sweet potatoes off of my plate with chicken stirred in.  Gotta get that protein.

Hubby ordered us a pizza after the kids went to bed.  I have been religious about sweet girls diet, supplements, etc. and I know I would really benefit if I could restrain from snacks and desserts and rally in with this diet change.  I must confess an awful sugar addiction.  It is HORRIBLE…rare do I fully savor the flavor, rather a savage in need of my next fix really.

I think we may be tackling the yeast beast next.

Behavior has been awesome!!  NO…yes, I said No tip toe walking, no arm flapping, no spastic behavior, few things make it into her mouth…woohoo!!  I need to brave it and take her to the mall to see the extent of this new found calm.  She is still extremely busy and so many other things, but I am noticing the edge being taken off of their extreme highs.  She is attempting to talk significantly more and she is initiating more interaction with sign and gestures.  I started noticing some regression with verbal today.  We also did our 3rd methyl B-12 injection today.  More on that later after it has had some time to work into her system.

Ok…if unnecessary profanity does not bother you…then I recommend this book.  It was a heavy story, but the read was light and easy.  The story was very intense and I could not put it down and because of the reading ease I finished it in a few hours.  Maybe not worth $23 in the store when I know I can buy it cheaper on amazon or even bn.com.

Ms. McCarthy was very transparent in discussing the issues surrounding her son Evan and I found her candid discussions helpful and therapeutic for me.  Many similarities and differences between our children, but the heart of a mother was so evident that I was in tears at several different times.

I kept trying to read excerpts to hubby and he just smiled at me…so, I do not recommend that method of reading.  Therapy for a momma with or without a special needs baby.  I was under the impression that Evan’s issues began when he received immunizations and I was not on that boat, so I was not sure what she would say.  She does state that her son had red flags and symptoms very early on and she believes that immunizations only exacerbated the symptoms.  She also lets you know that he is not completely “healed”, but is able to function on a daily basis and carry on social interaction without needing great assistance.  Many of his autistic symptoms are still present, but manageable.  I needed a read like this before I delved into the heavier scientific reading.  Successful choice.

I appreciate her efforts for awareness and medical/social change.  We are our children’s advocates.   Be a Horton.

Where is your nose?

She answered that very question for the first time yesterday at the OT evaluation!  I have asked her so many times in the past and she just stares at me with a sweet smirk on her face and no response.  At bedtime a few weeks ago she started with a cycle of touching my nose, then eyes, and then mouth.  I would say what they were and after two nights of doing this it became part of our bedtime routine along with prayers, hugs and kisses.

The OT asked her where her nose was and she immediately pointed to it!!  I was shocked and thrilled!

She also grabbed my hand and tried to pull me somewhere.  She did not seem to know really what to do once she put her hand in mine, but she initiated…she attempted, she intentionally tried to catch my attention and direct me!!  Communication!  Basics of our language.  She has never done this before…and just a few months ago started holding my hand in return when I grabbed hers.  Progress!

Exciting day!

Ghee?

The dr. suggested Ghee. He said it is made from butter, but we were told to eat dairy free? Supposedly it is dairy free and brain food.

Trusty old Wikipedia:

Ghee is made by simmering unsalted butter in a large pot until all water has boiled off and protein has settled to the bottom. The cooked and clarified butter is then spooned off to avoid disturbing the milk solids on the bottom of the pan. Unlike butter, ghee can be stored for extended periods without refrigeration, provided it is kept in an airtight container to prevent oxidation and remains moisture-free.

While my ghee is chillin in the fridge, I appreciate the ability to leave it out. For those times that I accidentally leave the ghee on the counter and forget to put it away, I am glad that the ghee will not have met its demise with my forgetfulness…especially since the clarified dairy free butter costs $10.00. Pricey spread…can it be spread or is it only for high temp cooking?

Seems like it is very cultural as well.

Hubby used it on the breakfast hashbrowns.

Occupational Therapy

So…the evaluation went well.  Sweet girl seemed to have a lot of fun playing-it lasted about an hour.  The OT had to define what exactly OT was because I really did not know.  Hubby stated she was too young to find a job…Ha ha.  I sorta understand.  It gives people the skills for the job of living according to Wikipedia.

She gave us some things to read and said she highly recommended occupational therapy at least once a week.  Gross motor, fine motor, oral motor, and sensory.  A new word:

Proprioception:It is the sense that indicates whether the body is moving with required effort, as well as where the various parts of the body are located in relation to each other.  The evaluator stated that this word describes why she does what she does.  The arm flapping, spinning, plopping down, swinging, pushing…her central nervous system craves the sensory input.  I need to do some reading.  The evaluator said to give her jobs to do like pushing the laundry basket, carrying heavy things, wearing a backpack with beans in it.  The point of all of this is to help her CNS know where she is in space.  I guess somewhere during development her CNS did not or was not able to develop fully enough to learn spatial reasoning and her body does not receive organized sensory input.  The weight, force, and pressure allows her CNS to organize the sensory input.  How cool is that?  I wonder if all of these behaviors will eventually go away if the CNS is able to receive enough organized input.

We are waiting on the final report to find out what kind of service and frequency.

OT Evaluation

Tomorrow morning 9:30 Occupation Therapy evaluation.  I have very mixed feelings.  This diet is changing everything…which is great, but confusing.  Can diet really change so many behaviors?  She is far from “normal”, but not nearly as uncontrollable and sensory driven, self satisfying, etc as she was even a week ago.  Tip toe walking has almost stopped.  Now I have stayed home mostly and unintentionally avoided new over stimulating experiences.  Are we going to show up and they say she is totally fine?  That would be great, but they have not seen her before this week.  Can we just give her grilled cheese?

No way!  I like this new way of living.  Still no biting.  Initiating interaction, pointing to things.  Sunday morning at church she said bye to her teachers with a wave and a firm “Bye”.

We managed to hide her enzymes in her a.m. vitamin water and p.m. watered down juice.  It will work until we figure something else out.  Any thoughts?

Breakfast: corn crisp cereal with sunflower seeds, fresh strawberries, rice protein powder and almond milk

Lunch: Quinoa noodles and marinara with broccoli.  She ate tons of cashews, almonds, and carrots before.

Dinner: Hummus, celery, cucumbers, avocado, baked sweet potato coins

Yes…I have missed several days.

Update:

We have been using the Kirkman Lab Vitamin for a week.  We have been wheat free, gluten free, and dairy free for a week also.  The soy is sneaky and popped up a few places.  I have decided to rule out the peanut butter also (just decided that today).

She has not complained at all.  Let me tell you that my husband and I both have noticed several changes.  She is calm.  Very few scream fits (although brief in the past) they occurred often especially after meals.  She still has many moments when she gets very excited, but not nearly the “freak out” attacks we used to have.  She would fling herself backwards and flap her arms and scream.  She would run from one thing to another and often times spin in circled and those “attacks” have lessened in severity and occurrence.  Also…NO BITING!!  She has not bit anyone or anything at all this week!  Coincidence?  The jury is still out.  She has not hit me or slapped me or flapped me in the face at all!! Hubby ws gone most of the week and we have not had speech therapy in two weeks…but I have noticed a big improvement in overall mood.

WE toggled with the idea of giving her the old things she used to eat for a day and see what happens and the hubby said absolutely not, little Mr. (her baby brother) wants to keep all of his fingers and the skin on his face.

We started enzymes today and she had the biggest nastiest poop.  Hubby talked about it all afternoon…I was lucky he got to her first. Haha!  Can the enzymes work that quickly?

I am ordering B12 injections tomorrow.