Wednesday, August 31, 2011
Tuesday, August 30, 2011
A Letter From Democrat Braun in Response to my Letter
Update 8/31/11 at 7:30pm: Democrat Braun mentioned a research paper and a specific doctor affiliated with a well known institution in his email to me stating that his remarks and beliefs are based off of true science and research. I have, in turn, contacted the mentioned doctor because I believe this said doctor's work was being misrepresented for a political agenda. The doctor has forwarded me his research paper for my review and he has read Dem Braun's email response. The doctor is horrified and as such wants no affiliation with Braun and no comments about him to the press.
As a result, I now have confirmation that as I suspected, Braun's "research" is fabricated and I am blocking out the doctor's name from this post.
I didn't think I could ever be complete speechless, yet here I am. . . speechless. Well, I have one word. Wow.
Oh wait, I supposed I should have mentioned that I AM a medical professional.
As a result, I now have confirmation that as I suspected, Braun's "research" is fabricated and I am blocking out the doctor's name from this post.
I didn't think I could ever be complete speechless, yet here I am. . . speechless. Well, I have one word. Wow.
Oh wait, I supposed I should have mentioned that I AM a medical professional.
Here is Democrate Harry Braun's response to my letter.
Dear Anna,
Thank your for your email.
Please find my answers below.
Dear Harry Braun,
I am sorry if my comments offended you, but please note that my comments were clearly not attacking Trig, who is an innocent victim, but the policies of his mother who serves the interests of the oil and chemical companies, who are really responsible for Trig's condition, as well as the hundreds of millions of other children and billions of adults who must now deal with the epidemics of cancer, Autism in the young and unborn, and Alzheimer's for everyone else as we age into a mindless future. I believe that such chemical contamination should be illegal, which is one of the reasons why I am running for president, and the only way to reverse this tragic course of history. Do you disagree with these objectives?
Please note that I obtain my information from physicians and professors of medicine, which are listed on my website. In addition to the extra chromosomes, which may also be the result of chemical contamination, your are assuming the the chemical poisons in the blood of each and every person and unborn child are not also having an impact on the proteins in the brain and body -- but they do. It is why there are many medical references to the increasing number of interrelationships between Down Syndrome and Autistic Spectrum Disorder DS-ASD, and it is similar to trying to distinguish between Alzheimer's and Dementia, which on a molecular level, involves a similar.disorder that involves the destruction of proteins. According to a 2--- paper by -----, M.D., who specializes in the DS-ASD disorders at the ------ Institute, it used to be assumed that DS and ASD were different conditions, but the medical profession now recognizes that people with Down Syndrome are also typically suffering from ADS, and as such, each person will will react differently to the diseases, depending on what toxins are in their blood.
Given that over 85,000 of the most toxic chemicals known were excluded from EPA review in 1970 by oil and chemical industry lobbyists, who paid off elected officials like Sarah Palin, and given that approximately one trillion gallons of these pesticides and other poisons have been produced each year since then, it is easy to understand why professors of medicine, which are listed on my Braun2012 website, have now documented that these poisons are now "ubiquitous" on the Earth. If you look up this term,, you will find it means every man,woman and child on the Earth has been contaminated. Even the polar bears, fish and birds in the remote regions of the Arctic now have these poisons in their blood, which is why these chemical poisons are now causing an epidemic of cancer, and a broad spectrum of neurological disorders worldwide, including Autism in the young and Alzheimer's in older adults.
Anna, can you please explain to me why is it offensive to state medical facts? After all, I was not blaming or being critical of Trig who did nothing to cause his disease, but his mother Sarah, who runs around the country telling people that we have too many regulations on toxic substances, which then contaminate millions of children like Trig each year.. That is a policy decision that I am objecting to because I think it should be illegal to contaminate innocent people and unborn children with any toxic chemicals, much less than over 85,000.
You have targeted those with Down syndrome.
I have had the privilege to grow up around my Aunt Peggy who has made me a better person. Now, my life has been completed by my daughter Ellie who will, might I add, “grow up” just as my Aunt Peggy and numerous other individuals who carry that extra 21 chromosome have.
As Dr. ---- pointed out, it is no longer just a question of having an extra chromosome (which by the way only codes for proteins) because the large number of toxins in the blood are going to do their damage as well. When a molecule of poison encounters a protein molecule, it is like an acid ball that melts the proteins into sticky parts, which then attach themselves to the synapses of nerve endings, which prevents the memories from being used.
Once again Anna, what was it that I said that insulted Trig that was so heartbreaking? I thought contaminating every man, woman and child in the country was heartbreaking, but apparently you and the others who have contancted me on this issue are not concerned with elected officials who allow lobbyists to secretly poison our own people and their children. How can that be??? Please note the Poisoning of America cover story by Time was first published in 1980.
Thank you again for your email. I will review your links Anna and I hope you will take the time to review my Braun 2012 website.
Please feel free to follow up.
Sincerely,
Harry Braun
Democratic Candidate for President
Thank your for your email.
Please find my answers below.
Dear Harry Braun,
I am writing as a concerned citizen. I am writing because I would like to believe that you have been misinformed or are just plain ignorant about people with different needs.
While the environment is a noble cause and one that must be addressed, the use of a politician’s family members, especially a small child with special needs, is completely unacceptable and in poor taste. In actuality, targeting a specific group of people as the result of gender, race or ability is defined as Hate Speech.
I am sorry if my comments offended you, but please note that my comments were clearly not attacking Trig, who is an innocent victim, but the policies of his mother who serves the interests of the oil and chemical companies, who are really responsible for Trig's condition, as well as the hundreds of millions of other children and billions of adults who must now deal with the epidemics of cancer, Autism in the young and unborn, and Alzheimer's for everyone else as we age into a mindless future. I believe that such chemical contamination should be illegal, which is one of the reasons why I am running for president, and the only way to reverse this tragic course of history. Do you disagree with these objectives?
You see, my aunt who was born in 1958, and my 2 year-old daughter, Ellie have Down syndrome. Like Sarah Palin’s son, Trigg, they have 3 copies of the 21st chromosome. That means they carry 47 chromosomes instead of the 46 chromosomes that you and I possess. That means people with Down syndrome take longer to learn and longer to walk and longer to talk. However, they will & do learn, walk, and talk, just like everyone else. Just like you.
Please note that I obtain my information from physicians and professors of medicine, which are listed on my website. In addition to the extra chromosomes, which may also be the result of chemical contamination, your are assuming the the chemical poisons in the blood of each and every person and unborn child are not also having an impact on the proteins in the brain and body -- but they do. It is why there are many medical references to the increasing number of interrelationships between Down Syndrome and Autistic Spectrum Disorder DS-ASD, and it is similar to trying to distinguish between Alzheimer's and Dementia, which on a molecular level, involves a similar.disorder that involves the destruction of proteins. According to a 2--- paper by -----, M.D., who specializes in the DS-ASD disorders at the ------ Institute, it used to be assumed that DS and ASD were different conditions, but the medical profession now recognizes that people with Down Syndrome are also typically suffering from ADS, and as such, each person will will react differently to the diseases, depending on what toxins are in their blood.
Given that over 85,000 of the most toxic chemicals known were excluded from EPA review in 1970 by oil and chemical industry lobbyists, who paid off elected officials like Sarah Palin, and given that approximately one trillion gallons of these pesticides and other poisons have been produced each year since then, it is easy to understand why professors of medicine, which are listed on my Braun2012 website, have now documented that these poisons are now "ubiquitous" on the Earth. If you look up this term,, you will find it means every man,woman and child on the Earth has been contaminated. Even the polar bears, fish and birds in the remote regions of the Arctic now have these poisons in their blood, which is why these chemical poisons are now causing an epidemic of cancer, and a broad spectrum of neurological disorders worldwide, including Autism in the young and Alzheimer's in older adults.
Down syndrome was actually first “labeled” as Down syndrome back in the 1860’s by Dr. John Langdon Down. It is a syndrome that has been around for centuries. . . long before the energy crisis. That is not my point. However, my point is that in your speech, you have offended many people--parents, brothers, sisters, grandparents, aunts, and uncles by targeting a specific group of people.
Anna, can you please explain to me why is it offensive to state medical facts? After all, I was not blaming or being critical of Trig who did nothing to cause his disease, but his mother Sarah, who runs around the country telling people that we have too many regulations on toxic substances, which then contaminate millions of children like Trig each year.. That is a policy decision that I am objecting to because I think it should be illegal to contaminate innocent people and unborn children with any toxic chemicals, much less than over 85,000.
You have targeted those with Down syndrome.
That statement is simply not true. I have clearly targeted the oil and chemical companies who make several billion dollars in profit each year by producing over one trillion gallons of these poisons annually, which are no known to cause profound neurological disorders like Autism and Dementia that will cost trillions of dollars in unnecessary health care costs (which alone will bankrupt the USA) and that does not include the profound pain and suffering that is incalculable. Can you not see the difference?
I have had the privilege to grow up around my Aunt Peggy who has made me a better person. Now, my life has been completed by my daughter Ellie who will, might I add, “grow up” just as my Aunt Peggy and numerous other individuals who carry that extra 21 chromosome have.
As Dr. ---- pointed out, it is no longer just a question of having an extra chromosome (which by the way only codes for proteins) because the large number of toxins in the blood are going to do their damage as well. When a molecule of poison encounters a protein molecule, it is like an acid ball that melts the proteins into sticky parts, which then attach themselves to the synapses of nerve endings, which prevents the memories from being used.
Did you know that many adults with Down syndrome work? Yes, I am aware that some individuals are able to function better than others, but it all depends on the total load of toxins that are circulating in brain and body.
Did you know that they vote? Get married? Drive? Did you know that they are tax-paying FIRST-rate citizens? Once again, it is no longer possible to separate DS from ASD, and most of those with ASD never grow up to get married or become tax-paying citizens. Indeed, they must still be cared for long after their parents die. This is now the tragic outcome for millions of American families, and there is no end in sight unless the production of poison is made illegal.
It was very heartbreaking to hear your speech. I only hope that you, personally, read my letter and take it to heart. That you find yourself more educated and that you take it upon yourself to apologize to everyone. This is your opportunity to set the record straight. This is your chance, while you have the media’s attention, to show that you can learn from experience and are willing to admit that you made a grave mistake in dragging a fellow politician’s little child into a campaign and insulting a group of fellow Americans.
Once again Anna, what was it that I said that insulted Trig that was so heartbreaking? I thought contaminating every man, woman and child in the country was heartbreaking, but apparently you and the others who have contancted me on this issue are not concerned with elected officials who allow lobbyists to secretly poison our own people and their children. How can that be??? Please note the Poisoning of America cover story by Time was first published in 1980.
If you would like more information, I encourage you to visit the National Down Syndrome Society at http://www.ndss.org or you can learn more about Ds and about my daughter Ellie athttp://ellietheurer.blogspot.com
Thank you again for your email. I will review your links Anna and I hope you will take the time to review my Braun 2012 website.
Please feel free to follow up.
Sincerely,
Harry Braun
Democratic Candidate for President
Respectfully yours,
Anna C. Theurer,
My Letter to Democrat Harry Braun
Those who know me know that I am not very political. I am not a dedicated democrat or a dedicated republican. I do make my voting choices through speeches and on where these politicians stand on various issues.
As you can imagine, I am up in arms over the insensitive and crude remarks made by Democrat Harry Braun during his speech at the Iowa Caucus. It is extremely disheartening to hear a public figure, one who wants to run for president no less, say
“Are you going to go and have your blood checked to see how many poisons you have in it or do you want a child like [Sarah Palin's son] Trigg who is never going to grow up?... “We have millions of them now and we don’t even talk about it.”
--Harry Braun, Democrat
You all know that I tend to ramble a bit, but I am hoping that I have gotten my point across in this letter emailed to:
Campaign@Braun2012.US
I am writing as a concerned citizen. I am writing because I would like to believe that you have been misinformed or are just plain ignorant about people with different needs.
While the environment is a noble and one that must be addressed, the use of a politician’s family members, especially a small child with special needs, is completely unacceptable and in poor taste. In actuality, targeting a specific group of people as the result of gender, race or ability is defined as Hate Speech.
You see, my aunt who was born in 1958, and my 2 year-old daughter, Ellie have Down syndrome. Like Sarah Palin’s son, Trigg, they have 3 copies of the 21st chromosome. That means they carry 47 chromosomes instead of the 46 chromosomes that you and I possess. That means people with Down syndrome take longer to learn and longer to walk and longer to talk. However, they will & do learn, walk, and talk, just like everyone else. Just like you.
Down syndrome was actually first “labeled” as Down syndrome back in the 1860’s by Dr. John Langdon Down. It is a syndrome that has been around for centuries. . . long before the energy crisis. That is not my point. However, my point is that in your speech, you have offended many people--parents, brothers, sisters, grandparents, aunts, and uncles by targeting a specific group of people. You have targeted those with Down syndrome. I have had the privilege to grow up around my Aunt Peggy who has made me a better person. Now, my life has been completed and bettered by my daughter Ellie who will, might I add, “grow up” just as my Aunt Peggy and numerous other individuals who carry that extra 21 chromosome have.
Did you know that many adults with Down syndrome work? Did you know that they vote? Get married? Drive? Did you know that they are tax-paying FIRST-rate citizens?
It was very heartbreaking to hear your speech. I only hope that you, personally, read my letter and take it to heart. That you find yourself more educated and that you take it upon yourself to apologize to everyone. This is your opportunity to set the record straight. This is your chance, while you have the media’s attention, to show that you can learn from experience and are willing to admit that you made a grave mistake in dragging a fellow politician’s little child into a campaign and insulting a group of fellow Americans.
If you would like more information, I encourage you to visit the National Down Syndrome Society at http://www.ndss.org
You may also learn more about Down syndrome and about my beautiful, smart daughter Ellie at http://ellietheurer.blogspot.com
Respectfully Yours,
Anna C. Theurer
When, or more likely IF I get a response, I will be sure to update this post.
Co-Founder of Stop Disability Slurs http://www.facebook.com/stopdisabilityslurs
Monday, August 29, 2011
"Ugly R*tarded Baby Girl Toddler": search term
*I want to thank Meriah from With A Little Moxie from hosting this blog hop on 6/6/12. I am revisiting this post as the topic is "what has been said" about someone with a disability*
I bet this post title really got to you. Hopefully, you are fuming. I know I am (and crying). I love blogging and I enjoy checking out the "stats" on The Chronicles of Ellie Bellie Bear. I like to see who has visited from where and what was the most popular post of the day.
Typically, I see search terms such as "down syndrome baby" or "sandal gap toe ultrasound" and even "Ellie Bellie Bear". However, I was not prepared to see "ugly retarded baby girl toddler". WHAT?! Another punch in the gut. Another shocking reminder that while there are good people, there are people full of ignorance. Who searches for stuff like that? I am serious here. What sort of information is a person looking for when they type those nasty words into a search engine? Why did it bring up Ellie's blog? I really just do not understand.
Children are born good with an innate sense of acceptance and love. That is my belief. Ellie and I go to play-scapes and parks with older children. These children, maybe 8 years give or take a few years are just yearning to play with Ellie. They say "is that your kid? She is SO CUTE!". They do not see "disability". They see good. The adults in their lives (parents, TV, movies, etc.) that change their views. They are taught that differences are bad. It saddens me for then we are left with a society who googles "ugly retarded baby girl toddler" for who knows what reason.
I know that some of this comes with the territory of having a public blog, but I hope, that to whoever searched for an "ugly retarded baby girl toddler" left The Chronicles thinking "Wow, what a beautiful little girl! Look at all of the wonderful things she can do!". One can dream, right?
After all, when I look at Ellie, all I see is beauty. I see that she has the same straight blonde hair as my husband. She has the signature chubby Theurer cheeks. Her large, almond-shaped eyes are full of mischief and yes, intelligence. Those bright and sparkly windows to the soul are from my mother's side of the family. Ellie's smile is full of sass and straight tiny teeth. She may be a baby-girl-toddler and she may be "delayed" when it comes to achieving developmental milestones, but she certainly isn't ugly or "retarded" in the derogatory sense of the word.
My daughter can and will do everything other children can do. She can walk. Fast. She can scale a staircase or playground like a gymnast. She can communicate her needs and look up at me with her bright eyes saying "mama". She can feed herself and create a lovely mess. She "walks" her baby doll in the stroller, "reads" books, and stacks blocks. Ellie plays fetch with our dog. She has the stereotypical toddlertude complete with full blown tantrums. Yes, it has taken her longer to accomplish these tasks, but she perfects them due to her great determination and motivation that rivals even the best of us.
Ellie is a beautiful baby-girl-toddler inside and out.
Mama Bear needs to grow a tougher skin because things will not change overnight. Perhaps I am 'preaching to the choir'. Yet, I can pray and I can hope that with each day and each post, I can reach out to the community dispelling myths, stopping disability slurs, encouraging acceptance, and educating one person at a time. After all, it is one of the main reasons I started this blog.
To my Ellie Bellie Bear: I love you so much snuggle bear. You are perfect, absolutely perfect.
Co-Founder of Stop Disability Slurs http://www.facebook.com/stopdisabilityslurs
I bet this post title really got to you. Hopefully, you are fuming. I know I am (and crying). I love blogging and I enjoy checking out the "stats" on The Chronicles of Ellie Bellie Bear. I like to see who has visited from where and what was the most popular post of the day.
Typically, I see search terms such as "down syndrome baby" or "sandal gap toe ultrasound" and even "Ellie Bellie Bear". However, I was not prepared to see "ugly retarded baby girl toddler". WHAT?! Another punch in the gut. Another shocking reminder that while there are good people, there are people full of ignorance. Who searches for stuff like that? I am serious here. What sort of information is a person looking for when they type those nasty words into a search engine? Why did it bring up Ellie's blog? I really just do not understand.
Children are born good with an innate sense of acceptance and love. That is my belief. Ellie and I go to play-scapes and parks with older children. These children, maybe 8 years give or take a few years are just yearning to play with Ellie. They say "is that your kid? She is SO CUTE!". They do not see "disability". They see good. The adults in their lives (parents, TV, movies, etc.) that change their views. They are taught that differences are bad. It saddens me for then we are left with a society who googles "ugly retarded baby girl toddler" for who knows what reason.
I know that some of this comes with the territory of having a public blog, but I hope, that to whoever searched for an "ugly retarded baby girl toddler" left The Chronicles thinking "Wow, what a beautiful little girl! Look at all of the wonderful things she can do!". One can dream, right?
My daughter can and will do everything other children can do. She can walk. Fast. She can scale a staircase or playground like a gymnast. She can communicate her needs and look up at me with her bright eyes saying "mama". She can feed herself and create a lovely mess. She "walks" her baby doll in the stroller, "reads" books, and stacks blocks. Ellie plays fetch with our dog. She has the stereotypical toddlertude complete with full blown tantrums. Yes, it has taken her longer to accomplish these tasks, but she perfects them due to her great determination and motivation that rivals even the best of us.
Ellie is a beautiful baby-girl-toddler inside and out.
Mama Bear needs to grow a tougher skin because things will not change overnight. Perhaps I am 'preaching to the choir'. Yet, I can pray and I can hope that with each day and each post, I can reach out to the community dispelling myths, stopping disability slurs, encouraging acceptance, and educating one person at a time. After all, it is one of the main reasons I started this blog.
To my Ellie Bellie Bear: I love you so much snuggle bear. You are perfect, absolutely perfect.
Co-Founder of Stop Disability Slurs http://www.facebook.com/stopdisabilityslurs
Sunday, August 28, 2011
New Chews and ABA Therapy
Sometimes the blankie and the food-grade tubing just don't cut it. This has unfortunately become the case with Ellie. Or should I say a teething Ellie. That little lower incisor is finally making its debut making her her lower front teeth an even number of four. Whoo hoo. Oh and those 2 year molars are pushing their way in nice and early. Goody. Plus, I forgot to mention the upper and lower eye teeth.
We have been experimenting, but sometimes nothing works like a good ole board book. Which, I might add, she is no longer allowed to be near unsupervised. Board books have been destroyed. Especially the spines. Ellie has a particular craving for the Sandra Boyton books. Must be the type of cardboard.
Surprisingly, the one item that seems to be working the best is a plain ole straw. I bought a huge bag of these colored straws at HEB for a whopping dollar. I carrying about 3 or 4 or well, a dozen around with me. All of her little buddies want straws too. I am the cool mom :)
On a side note, we started applied-behavior-analysis [ABA] therapy a few weeks ago. We LOVE it! Ellie loves her therapist L. The Chunky Chicken is so excited to see her that she can barely get herself through the front door as she is squatting, smiling, and waving so hard. I like it because it gives me step-by-step, detailed directions on how to handle Ellie's sensory behaviors, how to teach her to play, how to help her communication ,etc. Structure. Perfect for an obsessive type-A mama bear. I will write a separate post on ABA therapy later, but they gave Ellie this thingy--she can now blow air out of her mouth! This is great for making sounds like "puh". As in "puh puh puh Puppy", for example. Now the Bear thinks it is great fun to blow air into her straw-cup thus sending milk/water everywhere. Yuck! Yet proud!
For more on Sensory Processing/Integration, click here.
Don't forget to vote for The Chronicles of Ellie Bellie Bear : Best Special Needs Blog PARENTS Magazine--click on the button at the top of the right toolbar :)
This is also the last week for Elden's Change for a Change.
The Taylor Family is still having a great fundraiser to help bring Andriy home. Visit their blog here for details on how you can help and be entered into a Give Away.
Finally, we are trying to come up with our Buddy Walk team name. I would love to hear your ideas--leave them in the comments section of this post :)
http://www.facebook.com/stopdisabilityslurs
Sometimes you have to experiment. This is a regular teether. Because she is a thrower, I attached it to a pacifier holder to clip onto her shirt. It works well. . . some of the time.
This is another type of "chewlery" and it worked great. . .until Ellie threw it at the mall, somewhere.
We have been experimenting, but sometimes nothing works like a good ole board book. Which, I might add, she is no longer allowed to be near unsupervised. Board books have been destroyed. Especially the spines. Ellie has a particular craving for the Sandra Boyton books. Must be the type of cardboard.
 |
| Sometimes one chew just isn't enough. |
Surprisingly, the one item that seems to be working the best is a plain ole straw. I bought a huge bag of these colored straws at HEB for a whopping dollar. I carrying about 3 or 4 or well, a dozen around with me. All of her little buddies want straws too. I am the cool mom :)
 |
| See how the straw coordinates with her outfit? Totally unintentional :) |
On a side note, we started applied-behavior-analysis [ABA] therapy a few weeks ago. We LOVE it! Ellie loves her therapist L. The Chunky Chicken is so excited to see her that she can barely get herself through the front door as she is squatting, smiling, and waving so hard. I like it because it gives me step-by-step, detailed directions on how to handle Ellie's sensory behaviors, how to teach her to play, how to help her communication ,etc. Structure. Perfect for an obsessive type-A mama bear. I will write a separate post on ABA therapy later, but they gave Ellie this thingy--she can now blow air out of her mouth! This is great for making sounds like "puh". As in "puh puh puh Puppy", for example. Now the Bear thinks it is great fun to blow air into her straw-cup thus sending milk/water everywhere. Yuck! Yet proud!
For more on Sensory Processing/Integration, click here.
Don't forget to vote for The Chronicles of Ellie Bellie Bear : Best Special Needs Blog PARENTS Magazine--click on the button at the top of the right toolbar :)
This is also the last week for Elden's Change for a Change.
The Taylor Family is still having a great fundraiser to help bring Andriy home. Visit their blog here for details on how you can help and be entered into a Give Away.
Finally, we are trying to come up with our Buddy Walk team name. I would love to hear your ideas--leave them in the comments section of this post :)
http://www.facebook.com/stopdisabilityslurs
Thursday, August 25, 2011
Developmental Neurology: an update
Before I start this post, here is my perspective on developmental testing and whatnot as a pediatric health care provider who is also a mama of a angel with Ds & SPD.
1) Developmental Testing: as the developmental nurse told me on Tuesday "Developmental testing is really just a 'snapshot' of what is happening that day." Or as Ellie's ECI therapist always says "test scores vs. ability is only as good as what the child has done that day during the actual test". Basically, these tests truly do not measure our child's total ability. They are standardized and developed while using "typical"-developing peers. The questions must be asked in such a way and the child only has so many times and x-amount of time to perform the task. They are so the health-care providers & therapists know what types of services our children need and so that they know what areas must be concentrated on for our children to succeed. These tests do not take into account that children with Ds often need more time to process the directions and follow through on the command or that directions may need to be repeated with different wording. It is not a perfect system. All of that being said, as a mama bear, these tests are annoying and frustrating. I know that Ellie is delayed and yet, I get upset when I see the actual number, the age in months she is at.
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| As a mother, I still compare. I know shouldn't, but I cannot help it. |
2) Do not compare children. This includes comparing siblings. This included comparing two children with 46 or 47 chromosomes around the same age. This also includes comparing two children the same ago who both have Ds.
Since we, including myself, feel the need to compare: COMPARE YOUR CHILD TO HIM/HERSELF :-) That means I compare Ellie at 23-months to the Ellie of 20-months. Guess what--you will see some plateaus, but you will also see that mountains have been climbed!
3) Go with your mama gut. Do what you need to do for you child to succeed. You will ALWAYS know your little bear more than any health care provider or therapist. They can make suggestions-some you may follow and others you may not (ie my daughter would be in therapy every waking hour if I listened to every provider!).
Okay, the real post--the one with Ellie Bear stats and my thoughts as a mother:
Last week Ellie hit the 23 month-old mark and I have noticed that I am telling people that she is "almost 2". Yikes! My baby is nearly two!
It is a bittersweet moment. I am so happy to see little Ellie's personality blossom and to watch her, with great determination, master many tasks. Yet, my little girl is no longer a chubby little baby with rolls and big chunky cheeks that are perfect for storing acorns. There are now exciting things like temper tantrums, which unfortunately stem from lack of effective communication, food throwing, and climbing. Have I mentioned that she enjoys turning on the dishwasher? Or that she runs away from me when she sees her pajamas? Or that she must comb her own hair?
Our life has recently become hectic (not bad, just busy) and I am ready to fill all of you in, but the time to blog just isn't there. The time to review photos and take photos is dwindling.
So I will just catch you up to speed on Ellie's development and then cover the rest later :)
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| Here, let me "help" you with the laundry. |
*I actually wrote the above paragraphs when she hit 22-months and I never finished! Still hectic
On Tuesday we had our follow-up appointment with Dr. F, the developmental neurologist/pediatrician. This appointment went so much better than the last appointment--Punched In The Gut-Sensory Processing Disorder
Maybe it isn't that the appointment went better, but that I was in a better state of mind. There was no labeling of my child and I sort of knew what to expect this go around. Plus, it helped that my mother was still in town and able to go with us to the 2+ hour-long visit.
My little motor-sensory driven toddler did so well during the first 30 minute in the room. Ellie Bear sat in the little plastic chair and built a beautiful tower of 8 mega blocks, a toy that she has never played with before. The thing is, no one else was in the room, but myself and my mother to witness her performing "functional play" with "great attention" and "decreased distractibility". They were 30 minutes behind schedule. Typical. Thirty minutes of pure toddler-bear in a small, cramped room before the "real" testing in front of Dr. F, a speech therapist, an occupational therapist, and a physical therapist.
The testing required Ellie to sit some more. For a long while. She did very well in my opinion. Then they asked me "does she walk?" as Ellie is climbing from the chair onto the exam table. Right. For those of you who either know Ellie or read this blog already know about Ellie's gross motor abilities. "Does she run?" Yep, but she wouldn't "perform" in the small cramped room so little Bear didn't get any credit for that one.
As we have always known, my daughter is a motor girl and speech comes in dead last. Moving about the room and playing with the big kids and our puppy has always been a big motivator for Ellie. Talking, pointing, signing, etc are not so important to her. She doesn't "have time" to indulge us when we try to teach her words and signs for playing fetch with the Sophie Dog or climbing the slide is much more important. What am I getting at---some kids are better at one aspect of the exam than the other. Gross motor is Ellie's strength. Communication is not. (Ellie: I prefer to use SCREAM as my mode of communication) For other children, they may not walk yet, but they can talk up a storm or/& sign multiple words.
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| You mean I am not supposed to climb onto and sit on the IKEA toy shelf? |
So I am sure you want to know some stats:
Length: 31.5 inches (up 1 whole inch in 3 months)
Weight: completely inaccurate in my medical opinion so I refuse to post
Gross Motor : 17 months (16 months at 20 months)
Visual Reception: 18 months (not test at 20 months)
Fine Motor: 18 months (12 months at 20 months)------MOUNTAIN CLIMBED!!!!!
Communication: not tested (10 months at 20 months)
We will be tested in ~1 month with Early Childhood Communication [ECI]
Current therapies: Speech 1 x week; Applied Behavioral Analysis [ABA] therapy 2 x week; developmental therapy via ECI 1 x week
Additional recommended therapies as per the Developmental Neurology appt: Occupational Therapy--specifically adding in oral proprioception for sensory integration. I respectfully refused to add in more therapy since I want Ellie to have a life and instead asked our developmental therapist and our speech therapist about the oral proprioception. Both of them said "Ellie does not need that."
 |
| Ellie signing "book" She first picked this sign up last week! She actually gets that the sign goes with the object. |
Here is what I know with Ellie's communication. In 23 months:
4 words total--3 of which happened in the past month--mama, dada, dog (a-vah), shoe (oooh)
16 Signs: mama, dada, dog, hat, more, eat, baby, book, music
Other signs that have been performed, but not regularly: bear, cracker, sandwich, berry, cat, water, out
Tapping objects she wants. This is far superior to the throwing or the scream.
Ellie is making great strides and I am trying to take all of this testing with a grain of salt. Ellie is fabulous, engaging, wonderful, and perfect with a whole lot of sass and spunk. My job is to help her thrive in the best environment possible.
Next month, I will be crying those bittersweet tears as she turns two.
Wednesday, August 24, 2011
Not Here
It feels odd to have been MIA for so long in blogger land. We are back and I have so many ideas and events to write about. Perhaps I shall get around to writing it all and perhaps I will actually edit all 1,000+ photos.
Our past week:
Our past week:
 |
| Look! He still likes me :-) |
Do you notice anyone or anything missing from this lovely pictures (taken courtesy of our fabulous waitress at the illusive Il Giardino Ristorante)?
Ellie Bellie Bear!!!!
She was with my mama (Awa Grandma) who was visiting from St. Louis, Missouri. They spent the 105+ degree Austin heat in the mall riding the carousel having a blast. Not missing us or anything.
 |
| Granville Bay in Vancouver, British Columbia, Canada |
While Andrew and I were snuggling it up in 70 degree weather Vancouver.
It was a much need couple's vacation that left us feeling refreshed. Now, we are back in the grind with normal stress levels. Yikes!
More updates soon. We just saw Developmental Neurology for our follow-up yesterday. It was not as traumatic as the last visit (the Sucker Punch of SPD diagnosis).
Please please pretty please do not forget to vote for The Chronicles of Ellie Bellie Bear blog in Parent's Magazine. It just takes a few minutes.
The amazing fundraiser for my friend Christie Taylor's family is still going on. Donations are being matched at 50%! They have enough funds to get to Andriy, but not enough to get home Stateside. Please check out their fundraiser and adoption journey.
Wednesday, August 17, 2011
The Latte Challenge
I am posting the Forget-Me-Not Friday post a little early because time is of essence.
Hypothetically or perhaps truthfully, you get a latte at some coffee shop Monday to Friday.
Let's say a grande latte (let's face it, most of you do not order the smaller one) costs about $4.00 I am going with this cost because I googled it. I am a coffee purest if there is such a thing. Straight up black, with some ice to cool it down past boiling.
$4.00 latte x 5 days = $20
Times are tough and cash is tight. Believe me, I feel the crunch too. The purse strings are held even closer to our chest during this time of recession. Yet, I am going to challenge you for 1 week, to give up your morning latte and use that saved $20 to help Andriy, Charlotte (Maria), or Shannon. Help them be united with their forever families.
You cannot go without your morning latte. Then how about going for straight up coffee and asking for LOTS of room for cream/milk. Sort of make your own latte. A cup of coffee from Starbucks, Coffee Beanery, et. al is about $2 (yikes! That is some expensive coffee).
Switching to coffee saves you $2.00/day x 5 days = $10/week
That is $10 for a little angel.
Again, I challenge you to give up or substitute your latte for only 1 week and help a these families.
What if just a few of us did this? What if all of my readers did this? Just think of the difference it could make?
It could make the difference for the Taylor family who is getting a travel date any day now. The family whose journey recently took a very sharp turn. You can read said "sharp turn" here. They are having an amazing fundraiser so be sure to check out her blog.
It could make the difference for the Dirkes family. They are still very far from their fundraising goal and as her forever mama says "Every waiting child deserves a "Gotcha Day"!"
It could make the difference for the Sphak family who hosted a very lovely give-away only received only a handful--barely enough to cover the cost of the fundraiser. Shannon has been waiting far too long to be adopted. She lost a previous family who was coming for her and now she is living in a mental institution!
For those of you who wonder why I get so worked up and why I beg and plead. . . here is a reminder.
WARNING: the photos in this post are very disturbing. This little girl child is 9 (NINE) years-old.
The Beginning of Katerina's Story
With a broken heart and tears, please pray for this family. Please pray for Katie (Katerina). She really is living on borrowed time. Pray that this adoption can be expedited so that her family can bring her home. Home to where she is loved. Home to where she is properly fed. Home to where she can receive the medical care that she needs.
I will forever be saying All Children Are Worthy
*The regular Forget-Me-Not Friday Blog Hop should be up and running next week with Jane at Flight Platform Living. What is a blog hop? Check out her blog to find out! Or wait until next Friday!
Hypothetically or perhaps truthfully, you get a latte at some coffee shop Monday to Friday.
Let's say a grande latte (let's face it, most of you do not order the smaller one) costs about $4.00 I am going with this cost because I googled it. I am a coffee purest if there is such a thing. Straight up black, with some ice to cool it down past boiling.
$4.00 latte x 5 days = $20
Times are tough and cash is tight. Believe me, I feel the crunch too. The purse strings are held even closer to our chest during this time of recession. Yet, I am going to challenge you for 1 week, to give up your morning latte and use that saved $20 to help Andriy, Charlotte (Maria), or Shannon. Help them be united with their forever families.
 |
| Andriy (Taylor Family) |
 |
| Charlotte / Maria (Dirkes Family) |
 |
| Shannon (Sphak Family) |
You cannot go without your morning latte. Then how about going for straight up coffee and asking for LOTS of room for cream/milk. Sort of make your own latte. A cup of coffee from Starbucks, Coffee Beanery, et. al is about $2 (yikes! That is some expensive coffee).
Switching to coffee saves you $2.00/day x 5 days = $10/week
That is $10 for a little angel.
Again, I challenge you to give up or substitute your latte for only 1 week and help a these families.
What if just a few of us did this? What if all of my readers did this? Just think of the difference it could make?
It could make the difference for the Taylor family who is getting a travel date any day now. The family whose journey recently took a very sharp turn. You can read said "sharp turn" here. They are having an amazing fundraiser so be sure to check out her blog.
It could make the difference for the Dirkes family. They are still very far from their fundraising goal and as her forever mama says "Every waiting child deserves a "Gotcha Day"!"
It could make the difference for the Sphak family who hosted a very lovely give-away only received only a handful--barely enough to cover the cost of the fundraiser. Shannon has been waiting far too long to be adopted. She lost a previous family who was coming for her and now she is living in a mental institution!
For those of you who wonder why I get so worked up and why I beg and plead. . . here is a reminder.
WARNING: the photos in this post are very disturbing. This little girl child is 9 (NINE) years-old.
The Beginning of Katerina's Story
With a broken heart and tears, please pray for this family. Please pray for Katie (Katerina). She really is living on borrowed time. Pray that this adoption can be expedited so that her family can bring her home. Home to where she is loved. Home to where she is properly fed. Home to where she can receive the medical care that she needs.
I will forever be saying All Children Are Worthy
*The regular Forget-Me-Not Friday Blog Hop should be up and running next week with Jane at Flight Platform Living. What is a blog hop? Check out her blog to find out! Or wait until next Friday!
Tuesday, August 16, 2011
Miss Spits A Lot Update
I have been horrible in not keeping everyone up-to-date on our findings. I wanted to wait until all testing was complete and until all results were in. Without further audeu, the cause of Ellie's spitting up is. . . .
Nothing.
It is believed to be something she will outgrow. Andrew and I are extremely relieved that all tests came back normal even though we are still rather puzzled by this new, sudden onset of Ellie's excessive spitting up.
Yes, Andrew still finds me sitting on the floor, washcloth in hand crying over Ellie's 'walk and spit' trail of nastiness. Yet we have hope, that soon, this fountain of regurgitated food will soon be over and without too much damage to her poor esophagus.
When I last left you, I shared beautiful photos of Ellie's upper GI endoscopy which showed no reflux. After an in-depth discussion with Dr. B, we felt that keeping Ellie on her reflux medication of Zegerid would be beneficial as it is neutralizing the stomach acid and most likely keeping her esophageal tissue healthy. We have stopped the low-dose erythromycin for slow gastric motility thinking it was causing nausea. We have seen no difference.
I started keeping a spit-up/food diary again and so far can find any aggravating food or agent.
A pathologist reviewed the cells from the 7 endoscopy biopsies and found healthy tissue without any indication of infection or allergy. Dr. B then personally looked at the slides to confirm.
Because children can have kidney issues that may create pressure on the GI organs or an infection that manifests by vomiting, an abdominal ultrasound was ordered.
Here were the pre-Ultrasound directions:
Um, okay. My daughter isn't even 2yo yet. She does not have urinary sphincter control and therefore peeing is not yet voluntary. It just happens. Like a geyser. Oh and she is a spitter. As in she spits up especially with large quantities of fluids. Good luck keeping enough fluid in her for a large bladder.
Oh wait, I forgot to mention that she has sensory motor cravings and I have mama bear anxiety. I am sure that you can imagine just how this went down. Cue, Ellie Bear The Terror Toddler of Destruction. I shall leave this up to your imagination, but let me just tell you that bringing our heavy-work cart did not help, nor did her toys, etc etc. I fear we may be banned from the children's radiology clinic.
She peed. She had watered-down grape pedialyte all over her outfit and bib and me. We had to wait for her bladder to refill for the catheter. She started to scream like a poor tortured banshee the minute we laid her down on the table without her diaper. We are traumatized. She has petechiae around her eyes. I am paranoid.
Results:
Normal urinanalysis
Negative urine culture
Normal liver and spleen seen on ultrasound
Small kidney's bilateral on ultrasound
Dr. B consulted nephrology to discusses the borderline atrophic kidneys. Dr. Kidney wanted to check her BUN and creatinine (this looks at kidney function), but felt that given Ellie petiteness, her kidneys are an okay size.
We went off to perform a blood draw. Bear takes it like a champ and gets a lollypop (which she threw on the floor). Mama Bear buys a cookie for herself. Chocolate was needed.
BUN & Creatinine: normal
We are done testing. We are done looking for answers. As long as she doesn't lose weight, we are okay.
*I had taken many lovely photos of Ellie in all her sassiness, but Andrew took the camera to Canada. Guess who forgot to upload the Ellie photos? Yep. These were taken with my not-as-nice camera.
Nothing.
It is believed to be something she will outgrow. Andrew and I are extremely relieved that all tests came back normal even though we are still rather puzzled by this new, sudden onset of Ellie's excessive spitting up.
 |
| Maybe if Ellie clicks her heels, the spitting up will go away. |
Yes, Andrew still finds me sitting on the floor, washcloth in hand crying over Ellie's 'walk and spit' trail of nastiness. Yet we have hope, that soon, this fountain of regurgitated food will soon be over and without too much damage to her poor esophagus.
 |
| Just a random Ellie photo from today :) |
When I last left you, I shared beautiful photos of Ellie's upper GI endoscopy which showed no reflux. After an in-depth discussion with Dr. B, we felt that keeping Ellie on her reflux medication of Zegerid would be beneficial as it is neutralizing the stomach acid and most likely keeping her esophageal tissue healthy. We have stopped the low-dose erythromycin for slow gastric motility thinking it was causing nausea. We have seen no difference.
I started keeping a spit-up/food diary again and so far can find any aggravating food or agent.
A pathologist reviewed the cells from the 7 endoscopy biopsies and found healthy tissue without any indication of infection or allergy. Dr. B then personally looked at the slides to confirm.
Because children can have kidney issues that may create pressure on the GI organs or an infection that manifests by vomiting, an abdominal ultrasound was ordered.
 |
| Did somebody say 'no eating'?! |
Here were the pre-Ultrasound directions:
- Nothing by mouth for 3 hours prior to exam (aka starving the Ellie Bellie Bear)
- Drink tons of water or Pedialyte in the parking lot just before exam. Do not let her pee as she must have a full bladder for the first part of the ultrasound
- Make her drink more water before returning to Dr. B's office for a urinary catheter (for culture & analysis) Excuse me say what? Cath?
Um, okay. My daughter isn't even 2yo yet. She does not have urinary sphincter control and therefore peeing is not yet voluntary. It just happens. Like a geyser. Oh and she is a spitter. As in she spits up especially with large quantities of fluids. Good luck keeping enough fluid in her for a large bladder.
Oh wait, I forgot to mention that she has sensory motor cravings and I have mama bear anxiety. I am sure that you can imagine just how this went down. Cue, Ellie Bear The Terror Toddler of Destruction. I shall leave this up to your imagination, but let me just tell you that bringing our heavy-work cart did not help, nor did her toys, etc etc. I fear we may be banned from the children's radiology clinic.
 |
| Can you believe this heavy-weighted stroller didn't occupy Ellie? Yeah, me neither |
She peed. She had watered-down grape pedialyte all over her outfit and bib and me. We had to wait for her bladder to refill for the catheter. She started to scream like a poor tortured banshee the minute we laid her down on the table without her diaper. We are traumatized. She has petechiae around her eyes. I am paranoid.
 |
| Miss Sass |
Results:
Normal urinanalysis
Negative urine culture
Normal liver and spleen seen on ultrasound
Small kidney's bilateral on ultrasound
Dr. B consulted nephrology to discusses the borderline atrophic kidneys. Dr. Kidney wanted to check her BUN and creatinine (this looks at kidney function), but felt that given Ellie petiteness, her kidneys are an okay size.
We went off to perform a blood draw. Bear takes it like a champ and gets a lollypop (which she threw on the floor). Mama Bear buys a cookie for herself. Chocolate was needed.
BUN & Creatinine: normal
We are done testing. We are done looking for answers. As long as she doesn't lose weight, we are okay.
 |
| They are waiting for Andrew to come home |
 |
| I am pretty sure these two turkeys are cooking up plans on new ways to destroy the house. |
 |
| Check out her sandal-gap toe! Flip-flops are needed. |
*I had taken many lovely photos of Ellie in all her sassiness, but Andrew took the camera to Canada. Guess who forgot to upload the Ellie photos? Yep. These were taken with my not-as-nice camera.
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