Tuesday, August 27, 2013

The Bus, Yeah Yeah Oh Yeah

Sunday night, Andrew told Ellie that the bus was coming the next morning.  We are not sure what Ellie's concept of time is and we were concerned that she thought that she was going to ride the bus immediately.  So we spent some time telling her:

"First you must go night night to bed.  Then you ride the bus in the morning.  First sleep ALL NIGHT, then bus."



I think she got it because Monday morning, when I woke her up (yes, the one day we have to wake up early she decides to sleep in), she does not greet me with her typical "mama or da dada da", but rather frantically signs "bus" accompanied by a yelling of "yeah, yeah, oh yeah".  Ellie then proceeds to head over to her little table, grabs her water bottle, and then carefully slides it into the mesh cup holder on her back pack.  She removes her annoyingly bright magenta Minnie Mouse backpack (did I mention it was magenta with bright pink glitter circles?  Did I mention the glitter? And the pink?) from her wall hook and signs "bus" again.  She was clad only in a diaper and her PJ top.  Ellie was ready even if she was half clothed.

She's not excited or anything


As a mom, I worry about school.  Will she become upset when the bus drives away without us and stops at several people's homes before ending up at the school?  Will she be teased because she cannot talk and because she still wears pull ups?  What actually happens at school?  Will she eat her lunch or will she just play with it?  Will she be an ornery little thing and shove or bite another child?

She started to get annoyed with the mama paparazzi


When the big yellow bus arrived, Bear marched on up those steps with assistance, looked at Andrew and me, and grinned.  My girl was okay.  She is a big girl. . . and I am a proud weepy mama bear.

Bottom right: She is waving at us "bye mom and dad! I totally don't need you any more.  I am a big girl"

*School note from school: "Ellie had a good day.  We spent the morning learning the routine.  She played with play-doh for a long time and needed a few verbal reminders to not put it in her mouth.  She had speech and adaptive PE today." Her lunch box came home empty :)
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Monday, August 19, 2013

On Leaded Ground: an update on lead poisoning

I feel as though I am beating my head against a brick wall and I am not holding out a lot of hope that I will pinpoint the source of lead that is poisoning my Ellie Bear.

Using the home testing kit, I have investigated: the paint on the window-sills, an old set of blinds, the built-in shelves, the doors near the hinges, and the metal casings on the windows. You must thoroughly clean each site and be sure to scrape down through all layers of paint/glaze so my house has some scratched up, notched out doors, shelves, and window sills.  I also tested: her baby dolls, puzzles, flashcards, Little People from a consignment sale, dishes, cups, straws, and utensils.   I tested all of her chewy tubes as well. It was really quite morbid--I had to carve out pieces of the baby doll and her Little People, etc to get through all layers of vinyl/plastic/paint.  
Everything has come up negative.  Of course, there can always be false negatives.

The only thing that I have discovered is just how disgustingly dirty our house is.

I am confident that our house is safe given the results of the home test kit and the fact that our house was built after 1978.  However, I still have surrounding soil and the elementary school to investigate.  Additionally, I had my lead levels checked and I have no lead in my blood so I am thinking that our pipes are okay.


A few weeks ago, I had an interesting phone call with The Texas Department of Health and Human Services.  Interesting because I cannot figure out exactly what happened.  This woman, while very kind, seemed somewhat knowledgeable, but also did not speak in cohesive sentences and seemed to give out some inappropriate advice.  I did take away the following:

  • Her lead levels are high, but not high enough for the Department of Health to test our house.  
  • We should retest in 6 months to see to see if her body is flushing out the lead or if she is being continually exposed.
  • We also don't know when Ellie was exposed as it takes anywhere from weeks to years for lead to build up in the blood.
  • Apparently, my daughter may have anemia or thalassemia.  She should see hematology.  Ummmm, okay.  I get the anemia part as iron and lead compete for the same binding sites in the blood and lead tends to win out so you have less iron in the blood--hence the development of iron-deficiency anemia.  Yet, I am not sure why she is thinking thalassemia though and her explanation didn't really ring evidence-based to me.
  • More children from Ellie's class must show signs of lead poisoning or have lab-verified high levels of lead in their blood before the school will be tested by the Department of Health.
  • Schools do not keep records.  Well they might.  Yet, they may not be available.  We may need a lawyer to access the results.  But we may not.  But they probably don't have a record.  She isn't sure who I would contact to get this information--I told you it was an interesting conversation.
  • Lead tastes sweet so it is not uncommon for kids to be naturally drawn to materials with lead in them.
  • There is a theory that children with Down syndrome and children with autism have missing cellular villi in their gut (the tiny little hairs in the intestines).  These missing villi affect the absorption of lead.
  • Ellie may need a bronchoscopy if she swallowed an object made with lead.  This would not be covered by insurance unless her lead levels were in the 200s, which they are not. 

With regards to the school, Ellie's class is full of children under the age of 6 who have speech delays, behavioral issues, and other developmental delays--all signs of lead toxicity.  The question is: are these delays exacerbated by lead or are these delays apart of their underlying disorder /syndrome/ illeness?  I will be talking to her teacher and contacting the parents from last year to notify them of Ellie's elevated lead levels so that they may have their children tested.  I plan to speak with the principal to find out if her school has been tested for lead in the past and how I could access those results.

I will also be stealing soil from the school's playground and sending that out for testing.  This costs money.  I am not sure how much, but I think it would be well worth it.




Many of you have asked about certain supplements to help the body rid itself of lead. A sort of natural detox or chelation therapy.

The kind lady that I spoke with at the Department of Health who was just spouting off random things kept telling us to generously supplement Ellie with iron until she gets constipated and her stools turn black. And then to keep on supplementing.  Iron likes to hang out in the red blood cells [RBC]. This is good.  RBCs carry oxygen around to the cells and you want those bad boys functioning properly. The binding sites in RBCs tend to prefer lead over iron.  This means that the body excretes iron and the lead accumulates in the blood.  This is not good.  Being tired and pale are signs of iron-deficiency anemia.    A simple CBC [complete blood count] can tell you if your child has anemia.  My concern about flooding Ellie with iron supplements is this--iron toxicity [the signs of iron toxicity are quite scary and include intestinal damage such as bloody vomit, seizures, coma, liver damage, and clotting problems].  Her PCP did not recommend iron supplements because Ellie does not have anemia, but some health care providers might and it is all dependent upon the results of your child's blood work.  Again, do not run out and buy iron supplements unless our child's PCP tells you to.

If you are advised to supplement with iron, administer it with Vitamin C, such as a glass of orange juice.  The Vitamin C helps aide the absorption of Iron.  Milk, on the other hand, decreases the absorption.  This stands to reason that foods with Vitamin C such as citrus, berries, and many veggies, will help iron bind to sites in the RBCs and possibly displace the lead.  Therefore, lowing lead levels.

Just as lead can be floating around in the blood, it can also accumulate in the bones.  There are thoughts that Vitamin D actually increases the lead levels where as other studies suggest it lowers lead levels.  Talk about confusing!  That is because it is the same for calcium as it is for iron.  Calcium requires Vitamin D to help deposit itself into the bones.  Low Vitamin D means, less calcium absorption, and therefore weaker bones.  When calcium displaces lead from the bones, the lead is released into the blood. Most of the studies I have read recommend Vitamin D3 supplements along with a diet high in calcium. (Remember back when Bear had rickets/ very low Vitamin D levels?!)

I also read that Selenium, Cilantro, and Garlic have also been proven to reduce heavy metal (i.e. lead, mercury) levels in chickens. I wonder if the same can be said for humans?

Again, before starting any supplement, please speak with your child's health care provider.

Right now I am sticking with an over-the-counter multi-vitamin and Vitamin D3 while maintaining a diet rich in fruits (veggies when I can sneak them in) and iron-fortified bread products and dairy for Ellie. The Bear is predominantly a vegetarian.  She is clearly not my child nor a true Texan.  Otherwise, I would make sure she gets some healthy proteins in the form of chicken, turkey, and brisket.




I would also like to share with you potential sources of lead that friends have suggested:

  • Playground equipment with chipped paint
  • Sandboxes 
  • Toy jewelry
  • Hand-me-down toys, consignment shop toys, toys where you do not know how old they are
  • Toys from China
  • Toys at the school
  • Non-Crayola Chalk
  • Wires from lamps and extension cords
  • Plumbing-the lead soldering joining copper pipes together
  • Glaze on bathtubs


At this point, I would not be surprised if we never found the source of lead.  It could be an accumulation of lead from several areas seeing as Bear likes to mouth objects and taste sand from playgrounds.  It could be the school, but it could also be a playground.  It could still also be our home-from leaded soil tracked into our house.


*Please note that this post does not substitute any medical advice from your child's health care provider.  This post is to share my experience and only that. If you have concerns that your child has elevated lead levels, please contact your child's pediatrician.  Please do not stop or start any medications or supplements without speaking with your child's health care provider.*



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Thursday, August 15, 2013

Monday, August 12, 2013

Speech and ABA Therapy Techniques

For years we have been trying to help Ellie shape her mouth and make sounds.  For years I have been waiting for whispers (or shouts) of words to escape her mouth.

Then, it happened:

Baby.  She used to say "Eeeeee".  Then "buh", "buh-ee", "buh-bee" and now BABY!




PROMPT.

When Ellie is touching her mouth or her neck in these videos, she is doing something called "PROMPT".  Our speech therapist and ABA therapist have chosen certain areas of the face/throat and movements of the fingers for specific sounds--i.e. tapping the throat for a /c/g/k/ sounds because those are guttural.  A finger across the upper lip for /m/ as a reminder to press the lips together.


ABA Techniques




The above video shows a typical ABA therapy game. There is a reason behind each component.

Socialization: eye contact.  Leslie does not tell Ellie yes or no until there Ellie meets her eyes

Fine Motor: pointing.  This was one of the first ways we got Ellie to point.  She must tap the bowls with her pointer finger.  Then, she need to be able to lift the laminated picture off the table in a pincer-like grasp.

Increase Attention /  Decrease Impulsivity: She has to watch, while sitting!, Leslie move the bowls around to determine where the picture is.  She has to listen to the full set of directions and then follow through on those commands.

Following Directions: see above. Ellie must sit in chair even though she really really really doesn't want to, she has to listen to directions and follow through.  This is an important task for school preparation as Ellie can not just run about the classroom and full-fill her every whim.  There are rules and expectations and this ABA sequence helps Ellie learn classroom basics--sitting, listening to the teacher.

Finger Play: the around-and-around finger play is great for both communication and imitation

Speech: Leslie uses speech communication cards similar to the Kaufman method.  You say the full word 3 times and then break each word down based off of where the child is in her speech development.  For example, with book, you start at "bu" and then build up to "book".
  • book
  • boo-k
  • bu
Baby would look like this:
  • baby
  • bē-bē
  • bā-bē
  • bā(long a)
  • bă-ē
  • bĕh

Being true dog training ABA therapy, there is a reward at the end.  For Ellie, it is a fruit snack and lavish praise. Eventually, the reward becomes a stamp or a sticker with praise.  Then, just praise.

All of Ellie's ABA therapy games have multiple steps and address a series of developmental aspects.


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Tuesday, August 6, 2013

A Reese's Rainbow Family's Plea for Help

I have not forgotten the orphans listed on Reese's Rainbow (or any orphans over in Eastern Europe [EE] with special needs).  Not one day goes by that I do not think of my Tabitha.  My little girl who is trapped in Russia.

Today, I come to you on behalf of a friend whom I have written about here on this blog before.  Kelly and her husband adopted sweet Charlotte a few years ago and she has been thriving.  Thriving.  You can see just how well she is doing over at In Mama's Heart.  Kelly and Kyle have always planned on adopting another child.  In fact, they were ready to adopt two sweet children Little E and Baby A from Russia, Charlotte's home country, until the adoption ban went into effect.  Their hearts were broken.



Knowing that they could help another child and knowing that their family wasn't complete, they have decided to adopt Louisa, a wee bambina from another country in E.E. Louisa has Down syndrome and in her home country, she was placed in an orphanage because she is deemed "worthless", "unlovable".  Upon reaching the age of 4 or 5, she will be transferred to an institution to live our her days.  All because of her extra chromosome.  A little girl with Down syndrome, like my Ellie.  Transferred to unsavory conditions, unless someone adopts her.  Someone like Kelly. Kelly and Kyle are traveling in 7 days.  SEVEN days.

They funds are short by about $10,000.  They are desperate. In fact, Kelly is auctioning off her engagement ring on Facebook (please, I beg of you, if you win the drawing, do not accept the ring.  Could you imagine auctioning off your ring?!?).

Sponsor Louisa!


I don't often ask for money.  In fact, I am asking for plan ole help.  If help is in the form of monetary funds, great!  I know that paychecks have been stretched thin so I ask first and foremost that you share their story.  Donate if possible, but pray, send good thoughts, forward their blog.  Anything to help unite Kelly, Kyle, and Charlotte with their beloved Louisa.

Thank you.


If you have no idea why I am writing about Reese's Rainbow or abandoned children, please click here.  Warning: the video at the bottom is rather disturbing so have some tissues handy.


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Monday, August 5, 2013

Crash Into Me

If I start slurring my types and jumbling up my words, I apologize as I am enjoying a wicked case of whiplash and quite possibly a concussion.

That's right, folks, I got into another car accident.  In fact, I got rear-ended.  Again.  It has been exactly 8 months and 1 day since my previous crushing of the metal onto metal.  Apparently, my license plate reads "crash into me":

-especially if I am already stopped at a traffic light waiting for it to turn green
-oh and be sure to crash into me at full speed. Don't make it less dramatic by slowing down.




Ellie was in the car.

My baby was in the car and thankfully, she appears to be doing alright.  There was a twenty minute screaming bout followed by Andrew and I trying our hardest to keep her awake for 4 hours and I think she is okay.  Car seats are life-savers.  Hypotonia can be life-saving.  At least that is what the PCP said.  Floppy muscles means less tensing during impact and less risk for injury.  Her low muscle tone protected her and for that, I am grateful.

I am also grateful that Andrew was able to pick us up from the crash sight as I was took shaken to drive home.



Ellie was having a good day and we spent the morning at a playgroup.  She was getting exhausted quickly so as I headed towards home, I decided to stop by Quizno's to provide quick, scrumptious nourishment to Bear who was probably going to pull one of her 3.5 hour naps.  Only, we never made it to Quizno's.  I was at the traffic light.  Waiting.  Two cars were also in font of me.  Waiting.  I was contemplating the Chicken Carbonara sandwich that I was going to devour once the light turned green.  Only CRASH!  THUNK! CRUNCH!  Apparently, the lady behind me didn't understand that all of us were stopped. You know, at a light that had been red for a while.  She gave me an excuse that I understood, but didn't agree with.  She was rattled and rightfully so. She hit a car with her son in the back seat and will a little Bearity Bear in the back of the car she hit.  I am so ever thankful that Bear, her son, her, and myself escaped this accident without major injuries.



I am ready for this summer to be over.  Summer is not fun.  It is not relaxing.  It is not enjoyable.  It has been one hellish month after another. . . for Ellie.  Not for me.  Aside from the accident, I am dandy.  When school let out, Ellie was plagued with the beginning of random, frequent fevers of unknown origin.  Then, chronic fatigue set in halfway through summer.  We learned that my daughter was suffering from lead poisoning.  Lead!  I really do mean to give an update on the lead situation but until I actually shlep into the school playground and steal some sand to ship off for testing, I have nothing to report as all of her toys and our house came up negative.  The end of summer is marred by continuing now intermittent fatigue, an experimental decrease in ADHD medications for Ellie--through which I learned that she still has "bad" days of 15+ hours of sleeping and then on the good days, she is "possessed by the Tasmanian Devil" [that is a direct quote form preschool]--and a car accident.  We have 3 weeks left until school starts.  What else is going to torment my Ellie Bear, aside from 106 degree heat?



I am ready for September.

Okay, my pity party is over and we shall be back to our regular broadcasting.  Unless I do start having thought and speech and typing problems.  Then we will have confusedly entertaining posts.






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