Down the rabbit hole into wonderland

The spirit of service

2010-05-06T19:34:00.000-07:00

This little video really captures the spirit of the heart.
We sometimes wonder why things do not work our way, well here it is why.
I truly recommend it.
http://www.stservicemovie.com

Love story

2010-05-02T14:22:00.000-07:00

I just cave so muc to catc up with!

A wonderful marriage

2010-05-02T14:14:00.000-07:00

There couldn't be a better way to come back than a wedding. I hope you agree!

The incredible story of Judith Scott.

2010-02-25T18:02:00.000-08:00

This is a page dedicated to Judith Scott. An amazing artist, an amazing journey, an incredible story. Please take your time to read it. And breathe.

http://www.hidden-worlds.com/judithscott/index.htm

There is a little video you can find in Youtube. Unfortunately embedding is not possible.

Enjoy.

Chris Burke

2010-02-23T20:53:00.000-08:00

Chris Burke is an Actor. Some of you may have seen him on TV shows.

He is a great advocate

Enjoy!

Kevin Pearce miracle

2010-02-23T20:36:00.000-08:00

This is the story of snowboard olympic athlete that had a crash and suffer brain damage. he happens to have a brother with DS. This clip is about his family and his miracle survival.

I cannot find anything of better quality. It is worthy it.

Enjoy!

The ringer

2010-02-21T19:51:00.000-08:00

This little clip is from a movie. The Ringer 2005.

I hope you like it.

World Syndrome Day

2010-02-19T19:11:00.000-08:00

3 21 is the date chosen to mark World Syndrome day. 3 is for the number of chromosomes and 21 because of the pair they are found. Just in case someone didn't know...

This amazing documentary is coming up on that date and you can watch its premier on line for free! It has already won prizes and all that jazz. I hope you browse a little bit till the 3/21. The director is an awesome woman and the main artist in the documentary are quite something.

You are truly going to enjoy this. I promise.

http://films.nfb.ca/tying-your-own-shoes/index.php

On Fairy Tales

2010-02-19T17:53:00.000-08:00

If you ever Loved or Hated Snow White this should come as a surprise

http://www.down-syndrome-facts-and-fiction.com/mentally-challenged.html

A beautiful project

2010-02-14T18:39:00.000-08:00

This one melts my heart.

An actress!

2010-02-10T19:53:00.000-08:00

http://www.youtube.com/user/STFFestival?feature=pyv&ad=2780026579&kw=down&gclid=CKaYld2q6Z8CFegL5QodFGqkHA#p/u/16/mk5Wma45ZMw

Another amazing youngster!!

2010-02-10T19:42:00.000-08:00

I do not stop to be amazed!

http://www.youtube.com/user/STFFestival?feature=pyv&ad=2780026579&kw=down&gclid=CKaYld2q6Z8CFegL5QodFGqkHA#p/u/13/mE9M62B5qVU

Australia Day Embassador

2010-02-07T19:19:00.000-08:00

Tonight I am going to bed feeling extremely inspired by this young woman. She is an extraordinary sportswoman from Australia. Her name is Gabrielle Clark.

I am sure you are going to be impress with her.

zzz

http://www.australiaday.com.au/ambassadors/ambassadors.aspx?AmbassadorID=147

Birth story

2010-02-05T18:48:00.000-08:00

I know it is time I get a bit more personal. And I will, I promise. however let me just recommend you an amazing birth story, or rather and amazing narration. I do believe that all birth stories are amazing.
Enjoy.
http://enjoyingthesmallthings.blogspot.com/2010/01/nella-cordelia-birth-story.html

Lithium and Thyroid

2010-02-05T18:29:00.000-08:00

Well, as I suspected there is a link between Lithium usage and thyroid imbalances. This is what I was just dreading. After all my excitement. The problem is that we really do not know how this large quantities of Lithium carbonate would affect our children. It is known that bi-polar people treated with it tend to get hypothyroidism but they are also older and the quantities are enormous. However, for them keeping track of the thyroid functioning is nothing if you think of the high suicidal rate amongst this population. The high doses they are put on may not be neccesary for people with Don Syndrome. The study I mentioned in my previous post used 2.4g/kg in mice. I do not think they checked these mice thyroid.

Our kids tend to hypothyroidism and are checked frequently so one could decide that they have nothing to lose and many neurons to gain... We gave Leyla 2.5mg of Lithium Orotate a day and we did see improvement within a week. She started combat crawling and rolling all over the place. We took the dose to 5mg and after a week she developed a corse throat in the mornings. That is what led me to think of the thyroid connection. We stopped inmediately! She is no longer rolling all over the place and her crawling hasn't improved. We are considering reintroducing it at a lower dose and see. We are due for a thyroid check up in a couple of months...

We have also finally started with the LongVida Curcumin. We have been on it for a week at half the recommended dose and we haven't just yet seen anything that calls for celebration. Maybe once we get to the recommended dosage.

All in all Leyla is doing great but we can stop been vigilant. She will be re-evaluated for EI (Early Intervention) on 26 February and I cannot wait o hear what her therapist have to say of her progress. Who knows maybe the curcumin kicks in and she will be crawling like a pro by then. Why not?

Conny Wenk

2010-01-21T19:19:00.000-08:00

Dear friends

Months ago I came upon the work of Conny Wenk. She is a wonderful photographer and she does a lot of work with children with Downs Syndrome. She is the one behind the A LITTLE EXTRA calendar.
Anyway. Today I checked her blog again and I found this beautiful ballet dancer.
I hope you enjoy her as much as I do.

http://connywenk.com/blog/2009/11/laura-bruckmann.html

Her other blog is

http://kidswithalittleextra.blogspot.com/search/label/Tweens

On Gaby's memory

2010-01-19T16:52:00.001-08:00

Now a sad one. I belong to an mother's club at the Babycenter.com. they actually have a group of mother's with children with Down Syndrome. Gaby was one of the children born with heart defects that need surgery. Unfortunately she passed away due to complications on 20 November, just four months old. her mum put this video together for a church memorial. I didn't make it in time to have Leyla's picture in yet I feel the need to pay my respects to her here.

Hope you like it.

bells tolling for the swine flu

2010-01-19T07:58:00.000-08:00

Hi there.

I have been looking for something that explains what is going on with the H1N1 virus. I am not one to swallow vaccines crisis so I needed to know. well I have found a couple of videos on Utube, actually six in total but just start with one or two and see what this Spanish Doctor/Benedictine Nun, with a PHD by SUNY has to say about it and about the change of the definition of 'pandemic' by the WHO. Quite Amazing!
I am afraid it is subtitle but she has done a great job at it.
Let me know how it makes you feel.

Neurogenesis and Lithium

2010-01-15T18:52:00.000-08:00

Dear Friends.
You know how my few free hours are spent researching T21 and reading blogs of people who has walked my way. As a nutritionist I have found the greatest comfort in a book called what you can do who advocates for nutritional therapy. I am forever grateful to QADOSHYAH FISH for putting it all together. I love her blog and her research has been SO enlightening! I am also grateful to Teresa Cody for her "protocol".
It was while researching for a substitute to Prozac that I was led onto Lithium in a rather casual way,
while I was in Spain, a friend of mine who has been diagnosed BI-POLAR told me of Lithium as a neurogenesis factor used with Manic- depresive people, ADH children and Alzeihmer's disease. I left it as that and when I came back my mother in law had an article on Lithium and Alzeihmer's that tickled the researcher in me. I went to the computer and found enough evidence
that it worked, but what about Down Syndrome? Well, after much discussion we decided to try it ourselves and see. Leyla has been on Lithium for a couple of weeks and we are beginning to see improvement, specially in her interactions with people!
I must say here that Leyla has always been on the overachieving end of DS but as I tell people, the extra chromosome is there messing neurons up.
Anyway, a couple of days ago I came across an article in the web, in a magazine called Brain Pathology JAN 2010, presenting research done with DS mice and Lithium! I couldn't believe my eyes.
My dear hubby got us a copy from a library here in Florida for free!! I have been reading it and jargon aside it is amazing!
Here is the abstract:

Lithium Restores Neurogenesis in the Subventricular Zone of the Ts65Dn Mouse, a Model for Down Syndrome

Authors: Bianchi, Patrizia; Ciani, Elisabetta; Contestabile, Andrea; Guidi, Sandra; Bartesaghi, Renata
Source: Brain Pathology, Volume 20, Number 1, January 2010 , pp. 106-118(13)
Publisher: Blackwell Publishing
Down syndrome (DS), a high-incidence genetic pathology, involves brain hypoplasia and mental retardation. Emerging evidence suggests that reduced neurogenesis may be a major determinant of brain underdevelopment in DS. To establish whether it is possible to improve neurogenesis in DS, Ts65Dn mice—the most widely used model for DS—and euploid mice were treated with control or lithium chow for 1 month. During the last 3 days animals received one daily injection of 5-bromo-2-deoxyuridine (BrdU)—a marker of proliferating cells—and were sacrificed 24 h after the last injection. Neurogenesis was examined in the subventricular zone (SVZ), a region that retains a neurogenic potential across life. We found that Ts65Dn mice had less (−40%) BrdU+ cells than euploid mice, indicating severe proliferation impairment. Treatment with lithium increased the number of Brdu+ cells in both euploid and Ts65Dn mice. In the latter the number of Brdu+ cells became similar to that of untreated euploid mice. Our study shows that lithium is able to restore cell proliferation in the SVZ of the Ts65Dn mouse and point at treatments with mood stabilizers as a potential tool to improve neurogenesis in patients with DS.

I feel that with this, the GB, and the Curcumin we may have a better chance at improving our children's cognitive development and slow down their oxidation processes. I am so thrilled!!!!!!!
I have posted it on the Changing Mind Foundation web but no one seems to notice it. Ce la Vie!

The Butterfly Circus

2010-01-14T16:59:00.000-08:00

My, is this a moving little movie....?
It is worth the lenght of it. Just try it and if you are not captivated within a few minutes let go of it.
I love it.
Once again, thanks Raul for sharing.

We are back.

2010-01-11T13:30:00.002-08:00

Dear All

We have been so busy...
We have been there and back to Spain. We had a great time but unfortunately no pictures. I won't even go into it.
Christmas was great in Indianapolis. Low key, no big celebration, fancy menu, sweets indulgence, but lots of sleep. yes, sleep with a nine month old. Quite a blessing.
Right now, we are in Florida and I swear it is the coldest I have ever been while here. Global warming or what? The picture is the actual view of the sunset from our back door! Leyla is having a great time in the Yacuzzi and almost crawling forward, but not quite. She keeps going backwards and getting frustrated. Ah! She is also teething. Both her bottom teeth are starting to show. Needless to say that nursing has taken a different shape.
Life goes on at the Davila's

2009-10-25T09:45:00.001-07:00

The Specials

2009-10-25T06:19:00.000-07:00

Dear all
I have just found this British reality show. It is on the net and they encourage people to spread the word through their own blogs. It is hilarious. Four roommates, four of which have DS and one with Williams Syndrome. Here it is their first episode. Check it up!
Also clicking on the circle should, if it works, take you to their page...

The Family Hope Centre

2009-10-23T18:51:00.000-07:00

For those looking for extra help.

Dreams come true

2009-10-23T18:21:00.000-07:00

One for the basketball fans. This one really illustrates what the great spirit of sports is all about.

Gesture of Love

2009-10-23T18:05:00.000-07:00

I am not sure I'll be able to make up for all the lost posts during my flu weeks. I'll try.
And tonight I'll post something sweet, rather bitter-sweet. This ad has won some kind of price at Cannes Film Festival. My friend Sonia has sent it to me. I am afraid I do not know anything else about it. Well except that I, once again wrenched my heart out.

Enjoy!

Gymnastics

2009-10-20T18:45:00.001-07:00

Tonight I find myself looking at this girl thinking how daring she is. I wish I had the same power as she has on those arms and legs.

Madonna & R

2009-10-15T07:17:00.000-07:00

Dear Ones

I, like most of us, have a bit of a complex relationship with, or rather towards Madonna. For me her posing for GAP kind of clarified things but this is way too much. Touches home too close I suppose. See what you think.

http://nymag.com/daily/intel/2009/10/hey_madonna_its_time_for_you_t.html#comments

Achievements

2009-10-14T20:42:00.000-07:00

This is another encouraging story for us parents of children with DS, and anyone else indeed.

Courage

2009-10-12T21:32:00.000-07:00

It takes a lot of courage to do what this woman has done.

Becci's Poem

2009-10-11T19:35:00.000-07:00

I don't know if you have ever heard that "Friends don't count chromosomes"
This poem is just about that.
You may need to hear it twice!

Self advocacy

2009-10-09T19:49:00.000-07:00

Hi there!
I hope you are all enjoying these little videos. The one for today is, in my humble opinion a must see.
Hope you agree.

And finally... DANCE

2009-10-08T18:49:00.000-07:00

Dear all

I am proud to present this dance school from Madrid, Spain.
I have also found that the Boston Ballet has a program in collaboration with the Boston Children's Hospital but unfortunately their video can not be embedded.
Have fun!

The power of simplicity

2009-10-07T20:34:00.000-07:00

Dear Friends
I am normally against the stereotyping of people with Down Syndrome, specially the angel kind. I believe it robs them of their most innate nature: human. I was however captivated by the power of this little piece.
It was presented ;
"This unforgettable and award-winning video from Iceland, conceived by and supervised by the musical group, Sigur Ros and the filmmaker, Agust Jacobsson, features the Perlan special-needs theatre group acting out a simple but beautiful play about the elements"
Slow down, relax and enjoy

Rapper power

2009-10-06T19:13:00.000-07:00

I first came across Lazy-D a couple of months ago. I thought he was great. Unfortunately his videos cannot be embedded, but I seriously recommend checking him out.
For those of you new to Down Syndrome let me just say that the BUDDY WALK is an awareness and fund raising event that takes place around the end of September and all through October to celebrate Down Syndrome Awareness Month. This event goes on not just in USA but I have heard of it taking place in Afganistan!
Anyway this young man was performing at the BUDDY WALK NY.
Enjoy.

Weddings!

2009-10-05T18:39:00.000-07:00

Dear friends
please, please, please take your time with this beautiful videos. Yes, do have your hankies close by.
Love
Rosa

Josh & Bernadette's Ceremony Highlight from AndyCam Productions on Vimeo.

Josh & Bernadette's Reception Highlight from AndyCam Productions on Vimeo.

3 for 21

2009-10-04T07:19:00.000-07:00

Dear Friends

I doubt that many of you would know that October is Down Syndrome Awareness Month. Well, now you know!
I have decided to participate in something called "3 for 21", as in 3 chromosomes in pair 21.
The intention is to post something everyday during this month. See if I can keep it up.
Hope you like it.

2009-10-03T20:43:00.000-07:00

The only way is UP!

2009-10-02T18:44:00.000-07:00

Dear friends

I hunted this one a minute ago. I find it so encouraging, not only for people with DS but for anyone. How can you just not feel your heart opening and your spirit soar.
I hope you feel the same way.
Love
Rosa

Last Supper

2009-09-28T20:36:00.000-07:00

Dear All

I hope you like this. I am open to dialogue. Yes, it is juicy, it is art.
Love
Rosa

By the way you can click to enlarge. The artist is Raoef Mamedov. Google him if you like his photographs are something else.

Like water to chocolate

2009-09-26T18:52:00.000-07:00

My cousin Raul has sent me this piece of nostalgia. I was amazed by how much Leyla and I are alike. What do you guys think?
xxx

From Spain

2009-09-24T19:51:00.000-07:00

Dear all

This movie has just opened in Spain. A love story between a guy with DS and a person with the right number of chromosomes.
The protagonist Pablo Pineda is, in his real life, the first European with Down Syndrome that has gained two university degrees. He is a Teacher and Pedagogist!.
Thanks Raul for passing this on.
There it is a trailer.

High as a kite!

2009-09-23T10:43:00.000-07:00

Dear All

I am busy bee. Flying between bureaucracy with EIP (Early Intervention Program) trying to get speech therapy for Leyla, buying 1 inch wood cubes, not easy to come by, clearing cupboards for the winter, getting a ticket for Spain, arranging meetings with mothers of children with DS and creating a whole new world around me.
I found this video and hope you like it.
More soon...I promise

Tastes

2009-09-06T18:27:00.000-07:00

I wonder wheather Leyla's liking the Kimonos has anything to do with her newly acquired ethnicity.
I am for a giggle tonight....

misunderstanding

2009-09-06T18:13:00.000-07:00

Yes my dears. People seems to think that Leyla is an adopted Asian child. We keep hearing the question: is she adopted? I never thought I'd have the nerve to ask such a question myself. Obviously it is not such a big deal for some people. I love smacking them in the face. No, DOWN SYNDROME. Ah!, that is another terrain. You can hear them think -Let's get out of the store quick. How embarrassing! So much misunderstanding... My favorite however is the one that Carl gets when carrying Leyla in the Babyborjn pack and I am out of sight. Is the mother Asian descent? Yeah, as asiatic as Spanish rice. I do not know, maybe I should take it as a compliment but I wonder wheather Asian people would. So much misunderstanding.
Oh well. I simply laugh. And sure enough laughter is the best medicine at the moment.

Oops!

2009-09-06T18:10:00.000-07:00

I forgot to mention that the pictures are from Indiana Modern Art Museum. I love fashion so we went to see the exhibits on the history of fashion. Leyla Loved the Kimonos, the rest she couldn't be bother and fell sleep.

2009-09-05T14:22:00.000-07:00

busy or what?

2009-09-05T13:45:00.000-07:00

We have been back for almost two weeks and we are finally starting to feel at home. I have been busier than ever, cleaning and preparing for the Autumn. I have been looking for some new recipes to add to the winter menu and crochet projects to finish all the yarn in my, I mean Leyla's, wardrobe.

I have also been buying play mats on line. We decided on the expensive, no lead, purple and pink mats. Hopefully they arrive before next Friday, the scary day when I begin to day care for Henry, Mindy's baby. I know I am crazy but I want Leyla to have a friend around. It's just once a week. I think it will work. Hence the mats, so that they can roll around or whatever baby's do. I am soon to discover. I'll also needed them for Leyla's PT.

Talking about buying. I have been shopping for a ticket to Spain. It looks like I will manage to make it between Thanks Giving and Christmas. I may scape the snow!

What else happened this week? Oh, yes. we went to the doctor and found out that Leyla is almost sixteen pounds! No wonder my arms and thighs are so toned. She is doing well and we are just going to have her eyes checked. Something of a wondering eye.... 26 Oct.

Early Intervention Therapy also started and once again the therapist was very impressed with Leyla's tone and state of development. She gave me some more exercises to gain more upper body control and we aim to get her sitting on her own, banging two toys together, rolling both sides continuously and probably something else in the next couple of months.

We have also finally joined the Flower City Association, the Rochester group for Down Syndrome and registered for the Buddy Walk. So now it is official, we are walking the mile in Awareness for Down Syndrome. Those of you who would like to join us please let me know and we can make arrangements.

And the best of all, we have heard of a baby girl born with Down Syndrome in Rochester. She even shares Leyla's birth date! The therapist is going to try to hook us up. I hope it works.

The Flower City people said they know of a baby born in July so I hope we can all get together and start a little playgroup. It makes me feel better.

So. I keep painting smiles in my heart.

For now, that is all.

As soon as I get some kind of "room of my own" again I will be able to post cool stuff. I can only do basic keep up now.

Stay tuned!

Love, Light and Laughter

Rosa

365 project Video

2009-08-27T19:57:00.000-07:00

This little video did wonders for me when we first heard of Leyla's T21. I thought I should share it.
Thanks to Dr. D. for the help in getting it here!

Oh happy days!

2009-08-27T17:44:00.000-07:00

Well, Leyla finally had her Early Intervention Program (EIP) evaluation done yesterday. At 5 months old I won't necessarily call it early. Obviously and thanksfully she didn't desperately needed it. We are SO lucky she is so healthy. My heart goes to all the families that have to overcome so many heart operations to start with.

Needless to say she did well and all the work I put into actually doing what the books recommend (Gross Motor and Fine Motor Skills for Children with Down Syndrome, Woodbine house)has paid off.

As a matter of fact the comments we got from the evaluators, were kind of unbelievable. It appears that at this stage, and things may change any minute, she only qualifies for the program because of her diagnosis of DS, not because she shows any delay. In fact se would be at the top of typically developing children charts!

I finally felt proud and my heart beat furiously in love once again. I realized it had stopped one gloomy day in May at a doctors office where my daughter was left behind as in the morgue. And at her side was left her mourning mother.

Well, my daughter, if not the one I dreamt of and thought I delivered, but the one with a little too much of either of her parents finally gets her emotional mother back. Not the one that just stoically do the job but the one that absolutely adores her and is prepared to stand by her at any cost, ready to have her heart torn open again and again, not because of the pain that her challenges will bring but because of the torrential Love that comes from the open heart of a Mother.

The lightness of heart that I have been so familiar with since my encountering with sufism is back. I have been chanting quite a bit lately. One of the things I have been praying for is meeting peers with Down Syndrome for Leyla. Today I have finally heard of a baby born with DS in July. I hope to be able to meet with the family soon.

So it is Happy days anew.

And many more to come.

2009-08-25T20:01:00.000-07:00

Well, I have finally done it. I have created a blog. I am not sure I can cope with all this tech but I will try.

Leyla, my sweet little daughter is the reason behind this new adventure. I have no intention of writing politically correct stuff nor I will indulge in political discourse of any kind. I just simply would like to invite you all to share my journey into the unknown world of Down Syndrome and make you participate in my scary little voyage. Here I will explore my fears, my hopes, expose the highlights of my new found humour, and make our Love contagious. More than anything this is an attempt to keep up with friends in both sides of the Atlantic as well as make some new ones.

So fasten your belts and enjoy the ride "Down the rabbit hole into Wonderland"