Trick or Treat

Happy 1st Halloween Joaquin! Who needs toys when you have candy? Here is our boy playing with his brother's candy after a fun night with friends around the neighborhood. It was a wonderful night.

Thank you to all our faithful readers for "hanging" with us during this 31 for 21 posting challenge. I'm happy to say we were able to complete the challenge and it was an honor and a joy to do so.

We'll be back....just not everyday!

The night before Halloween!

Last night Jen went out with her girlfriends and I was in charge of 3 kids and the daily post. All 3 kids went to bed like usual, no problem. Joaquin did his normal talk routine right before he fell asleep, very cute. So I turned my powerbook on and started thinking about something to write. I was having trouble thinking of something, so I decided to check some of the blogs that Jen follows. I found this post by Jennifer Groneberg from Pinwheels, the author of the book "Road map to Holland", about a beautiful Down Syndrome Awareness bracelet made by the talented Amy Flege, and she was giving it away to a special mom. All you needed to do was post a comment, so I did for Jen. I thought that it would be a great reward for her special effort to post every day of this special month.

This morning when I got to work, I had an email from Jennifer Groneberg telling me that we won the bracelet. I was so thrilled and I am so excited for Jen to have it. I think she deserves it. So Jen, it is coming in the mail. Thanks for being such a special mom and a loving wife!

We were BOOed!

Tonight the boys and I decided to carve the pumpkins in preparation for Halloween on Friday. Joaquin was in his bouncy seat in the kitchen, Mateo was on a stool so he could watch cautiously and my big boy Diego was elbow deep in pumpkin mush trying to save the seeds for his Papa to roast later on for snacks.

We went out to the front porch to see the finished products in their full candle glory and lo and behold there was a little package waiting for the boys with a big BOO sign on it. Someone had anonymously left a very thoughtful gift bag for the boys with instructions on how to keep the BOO going in the neighborhood. The boys were so thrilled and ran around the house shouting we were BOOed, we were BOOed!!! Joaquin was smiling in his chair sensing all the excitement in the house.

I couldn't help but smile too. We are a NORMAL family! I know this might sound silly and crazy but another one of my early fears after learning about Joaquin's diagnosis was that our family might not be fully accepted in the community or that we would feel isolated and alone. I worried that my friendships would change or disappear. I worried that possibly Diego and Mateo's friendships would be affected. I feel ridiculous writing this now but these were some of the terrible fears that just bombarded me very early on.

Thank God these fears were unfounded and honestly, it's been quite the opposite experience. Since learning about Joaquin's diagnosis, I have felt more of a community around us than ever before. I feel the love and support from neighbors, friends, and even strangers in this wonderful online blog community. I look forward to raising my kids in my neighborhood, literally surrounded by great families with huge hearts. I can't wait to watch all the neighborhood kids grow up together and to have Joaquin be someone they all adore and protect. Suddenly the world is a feeling like a kinder, safer, sweeter place for us to live in.

And all it took was a little BOO sign to remind us of this!

Mr. Blue Sky

I really want to see this movie so I've put in a special request to Netflix to see if they will buy a few copies and make it available to the public.

Here is a synopsis of the movie:

An unconventional love triangle between three childhood buddies; two girls, one born with Down syndrome, and one boy, who all grow up fighting who they are inside, how they are perceived by society as a whole, and who they ultimately strive to become as individuals through the obstacles that are inherently present.

Mr. Blue Sky is a ground-breaking film that explores the romantic relationship of a woman born with Down syndrome and a "normal" male, as perceived by today's society. Mr. Blue Sky attempts to break down society's barriers, much like "Guess Who's Coming To Dinner?" did in the 1960's, as it aims to "change lives" through "changing minds."

Mr. Blue Sky is a heart-grabbing story that will ultimately change the way society views all people as "individuals" first and foremost.

The title is derived from a little girl's hope and love through the sun (Mr. Blue Sky.)

I'm intrigued by this movie. It touches upon some of the early fears I had and still have for Joaquin as he gets older. One of the first things I mourned when I learned about his diagnosis was the idea that he would not get married or have a family of his own. I now know that this is a possibility for him (the relationship part) but I can't help but worry still. I don't ever want him to be lonely. This has to be my greatest fear for him. I don't want him to be isolated or alone in this world. I want him to love and be loved forever so the thought that he might find companionship with someone very special and/or ultimately fall in love would be priceless to me. I will just have to buy this DVD if Netflix doesn't follow through on my request!

This is the website for the movie if anyone is interested in reading more about it: http://www.mrblueskymovie.com

Myth vs. Truth

In honor of Down Syndrome Awareness month, I'd like to take this opportunity to address the myths commonly associated with DS. I copied this from the National Down Syndrome Society website.

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 733 live births is a child with Down syndrome, representing approximately 5,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Eighty percent of children born with Down syndrome are born to women younger than 35-years-old. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize and form ongoing relationships. Some are beginning to marry. Women with Down syndrome can and do have children, but there is a 50 percent chance that their child will have Down syndrome. Men with Down syndrome are believed to be sterile, with only one documented instance of a male with Down syndrome who has fathered a child.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

BFF

Joaquin already has a Best Friend Forever and her name is Jolie. They are cousins and are only 6 weeks apart. It's going to be so much fun watching these two grow up together and we know they will share a very special friendship.

Here are a few photos of us....Jennifer (my sister in law- yes we have the same name!) holding Joaquin and I'm holding Jolie, J & J head to head on the day they met (Jolie is only a few days old) and naptime for the two little ones in the same pack-n-play crib.

Nana

There is no denying that Nana and Joaquin have a very special bond. He lights up whenever he sees her and she is the only one that brings out his devilish side! He loves to try and "love bite" Nana- all over her face! He's like a little tiger when he's in her face. We are so fortunate to live so close to my parents and that he gets to see Nana and Grandpa almost every day. He goes through Nana withdrawl when she goes away on vacations.

Here's are few photos taken today with Joaquin and his favorite Nana!

Mild Case of Down Syndrome?

I thought I'd post the most commonly asked question even though I still don't have a clear cut answer for it. Friends, families and strangers always ask me if there are different degrees of Down syndrome- mild, moderate or severe. They'll ask me if there is such a thing as a mild case of Down syndrome. I think people are assuming that Joaquin has a more mild version of DS based on the fact that he was not diagnosed right away, the fact that sometime it's hard to "see" it in his face and the fact that for the most part he's on target developmentally.

Joaquin doesn't have a mild case of DS he just has Down syndrome. I'm really not sure how else to answer this question but it will be one of the first questions I ask next week when we visit Dr. Wardinsky, the lead doctor at the Down Syndrome Clinic at Alta Regional. This will be our first visit to a doctor who deals exclusively with children blessed with a little extra....a little extra chromosome.

There is no such thing as a mild case of Down syndrome- your genes either have three 21st chromosomes or they do not. But how that manifests itself will be different on each and every person and that person may have mild, moderate or severe symptoms. I saw it written somewhere online that it's similar to asking "Are you mildly pregnant?"...you are either pregnant or you're not. Maybe a good analogy is that no two pregnancies are the same.....sometimes you have insomnia, nausea and stretch marks and sometimes you only have weight gain and varicose veins or very few symptoms at all. With DS, no two children are the same, sometimes you have heart problems, typical facial characteristics and low muscle tone and sometimes you only have a few facial features, a little hearing loss, a mild strabismus or very few symptoms at all. One must also remember that the rest of Joaquin's genetic makeup, the rest of the 44 chromosomes have come from his parents so that's why he'll still resemble us and his siblings. He will also possess our strengths and our weaknesses much like our other children do. He will just have additional challenges based on how the Trisomy 21 affects his brain and his body.

Then there is the issue of how much control we have over his sensory stimulation in order to help his brain compensate for any injury caused by his Trisomy 21.....which we've written about in previous posts and is the main focus of the program we are doing with the Institutes as well as the therapy services provided through our Regional Center.

I will always welcome this question because I feel that this is one way that I can help education and advocate for my son and his peers. I hope to learn more every day about Down syndrome so I can share the most accurate information with those around me and increase the awareness. Just a few days ago, I felt compelled to put a Down Syndrome Awareness Ribbon magnet on the back of my car. I've never done anything like that before. Bring it on.....the questions, that is!

Someone to Watch Over Me

Here is an adorable photo of Mateo peering in at the baby in the crib. I think Joaquin was close to 3 months old and Mateo was finally warming up to having a baby brother. I love this photo.

Spidermania

Here is our family of spiders- The Red Spiderman is Diego, The Black Spiderman is Mateo and of course the spider is Joaquin. By the way, I'm truly afraid of spiders....huge case of arachnophobia! It's so ironic that I have a household of boys who are obsessed with them. Diego really wants me to dress up as Mary Jane on Halloween night and he wants Hector to be Peter Parker....we'll see!

Papa's Baby Boy

Looking Back

My Grandma Eleanor passed away earlier this year when Joaquin was about 6 weeks old. I had a very special relationship with my Grandma. She helped raise me as a child when my mom was working as a nurse to put my dad through law school. We even lived with Grandma for the first 3 years of my life in a house just down the street from where I currently live.

I remember getting a phone call from my mom a few days after Joaquin was born, those early morning calls that are always dreaded, that Grandma wasn't doing very well and was in the hospital in Truckee. I knew the moment I got that call that I was going to drive up there with Joaquin to make sure she had a chance to meet him. He was only a few days old but I wanted to see her immediately. Fortunately, Hector was home from work for the week so he stayed with Diego and Mateo so I could go with Joaquin and the rest of my family to see Grandma without the distraction of two little boys running around the hospital.

She had had a rough night so we weren't sure how lucid she would be when we saw her. Fortunately, on the drive up to Truckee, we heard that she was stable and would probably be released back home later that evening so I was able to relax a bit. I had taken special care to dress Joaquin in the softest powder blue baby gown and cap with a matching blanket. He looked angelic. I remembered the first time I introduced Diego to Grandma and had made the mistake of dressing him in jeans and a Stanford sweatshirt.....I never heard the end of it! "Babies don't belong in jeans!" she used to tell me. It was part of her dry Irish humor. I wasn't going to make that mistake again.

I was so eager to see Grandma but mostly for her to meet Joaquin. When I entered the room, she was very surprised to see us and then was a little upset I had brought the baby to the ER where all the "germs" are...."He should be home in bed!" she told me. There was my Irish Grandma. But she immediately softened when she saw him and it was such a special moment when I was able to introduce him to her.

I carefully laid him in her arms, careful not to put too much weight on her, but still allowing her to feel his body in her arms. I don't remember all the exact word she said because I was lost in the moment but I do remember one thing very vividly. She said something about him being beautiful and perfect. She stressed how amazing it was that these little babies turn out so perfect, how rare it is that anything is wrong. I remember agreeing with her as we both just stared and smiled at the baby.

My grandmother lost a baby shortly after birth and she never ever talked about it. My dad had told me a few years ago. I do know that Grandma wanted to see her baby again and talked about him when she was close to passing. I'm sure her comment to me about how rare it is that anything is wrong had a lot to do with her loss. I have to imagine that whenever she saw a healthy baby, she saw a miracle. I can't imagine the pain of losing a child, the pain she must have carried silently with her. I know she loved her grandchildren and her great grandchildren and that we all were a source of pure joy and healing for her.

How I wish I could talk to my grandma now. She passed away a few weeks later. She never knew about Joaquin's diagnosis. I want to talk to her and tell her about it and hear her say to me again that he is perfect and that nothing is wrong. I miss her. I now know just how close to crossing paths their souls were. The full circle of life....Joaquin coming into this world and Grandma leaving us. They had a moment together and I'm so grateful. Her words stay with me. He is perfect and there is nothing wrong with him.

Thank you Grandma. I love you.

Chili Peppers

Diego

Mateo

Joaquin

Mexican Seer

Jen asked me awhile ago to write about an experience we had in Mexico City this summer when we celebrated my parent's 50th wedding anniversary. It was Joaquin's first visit to Mexico and we introduced him to my whole family. I think Jen would agree with me that every time we go to Mexico there is always the next new "miracle" something...the new miracle cream that will shorten or prevent a cold, the greatest new vitamins, a new meditation technique, etc, etc...

This time around it was this new wonderful therapist/psychic/healer/seer. I don't even know what the official title would be for Alejandra. My sister Adriana told me all about the sister of a friend of hers, Alejandra, who has a special gift and devotes her life to helping people. I am not a skeptic by any means, quite the contrary, I am open to all new things. But I am cautious because I tend to be quite gullible. Since it was difficult to get an appointment to see Alejandra and my sister was happy to give us her own appointment so that we could bring Joaquin, I happily agreed to meet with her. To tell you the truth, I was very curious to see what she would "see" in baby Joaquin.

Jen, Joaquin, Diego and I went to see her and she talked entirely in Spanish. She spoke about so many things and it was hard for me to store all of the information so that I could interpret it for Jen later. It was so difficult to remember every detail. It has been more than 5 months since that day and I've never written down anything she said to us until now. These are a few of the things she said to us.

She said that babies with Down syndrome are new souls, and that they come for a reason. Joaquin has a specific purpose in life, and we should never question any of his actions...if he moves a toy to the right, don't move it back to the left, he has a reason for everything he does. I thought that was very interesting, how specific she was about the idea of what his legacy will be.

As far as his health, she told us that he didn't have any heart defects. This was later confirmed by our cardiologist. She said that she saw some congestion in his ears. This too was confirmed by our audiologist. Joaquin has mild to moderate hearing loss due to what we believe is fluid and he will get tubes implanted in November to help resolve this issue. She didn't see any other physical abnormalities in him. We forgot to ask her about his vision and back then his strabismus was not as prominent.

The most amazing thing she said was that Joaquin's soul was so pure that it was overwhelming to her. She said that usually babies with Down syndrome have huge chakras, bigger than normal, but that they are usually disconnected. She said that Joaquin's were big as expected, but they were connected like in a "typical" baby. His flow of energy was pristine and there was no interruption from his brain all the way down his spine. At the time I thought that sounded cool but now it explains why he is extra special, at least to us. He has such a way of drawing people into him.

My sister Adriana later told me that several days after we met with Alejandra, she (Alejandra) was at a weekend retreat and she couldn't stop thinking about Joaquin. She was very affected by him and felt lucky to have been in the same presence as him, someone with the purest of souls.

I believe that all babies are special and that each child comes to us for a reason. I know that Joaquin is no exception to the rule. He will change lives and he will do great things, at least that is what my heart tells me. I know he has already changed Jen and mine and our families and our friends. His story is also touching people around the world who are reading our blog. Diego and Mateo's childhood is also enriched without limits by having Joaquin in their lives. Sometimes I am still afraid of him growing older, I love him as a baby, but I can't wait to watch him grow and become a toddler and to translate to us all those things he already says in his own language. So much to look forward to and we'll take it one step at a time and savor every moment of it.

Our Little Star

Our little baby is a star! Here he is featured on the Parenting.com website. They are featuring pictures of babies and children with Down syndrome all month long in honor of Down Syndrome Awareness Month. Check it out!

A-Special-Joy-17-Babies-With-Down-Syndrome

Down Syndrome Awareness Month

I have tears in my eyes. My faith in humanity is renewed after reading this story. What better way to celebrate Down Syndrome Awareness Month!

Senior With Down Syndrome Crowned High School Queen

Time for Tubes

Joaquin is scheduled to have ear tubes placed the middle of November. It is an outpatient surgical procedure and he will be under anesthesia for about 20 minutes. None of our boys have ever had surgery, been hospitalized, casted or even stitched until now. It's a quick procedure and fairly simple but to think of my little baby boy in these circumstances breaks my heart. We won't be able to be in the room during the surgery but we will be allowed in immediately after in case he is disoriented. Even though I'm nervous as can be, it is good news and something we were hoping for as a solution for the fluid in his middle ear.

So....we no longer need to proceed with hearing aids. Good news since we learned recently that the little tiny hearing aids cost $2400 and insurance doesn't cover them. We saw the ENT (Ear, Nose and Throat doctor) today and she confirmed that Joaquin's ear canals are big enough for her to place the tiniest of tubes. During the procedure she will make a small incision in his ear drum which will allow her to clear his ears of any existing fluid. Then she will place the tubes which will allow any further fluid build up to drain properly. We are hoping this will eliminate any hearing loss Joaquin may have had since birth.

I will try and forget about the details of the procedure until it gets closer to the time. I function better that way. I know this is the best thing for him and that he'll be just fine. I thank God every day that this might be the only major health problem that Joaquin needs to face. I know we are so very lucky that way.

He's crawling!

We are so excited!

Joaquin has been "moving" since a few days old on his belly. It started with him in the co-sleeper. We would put him to sleep on his belly at one end of the bed and by the time he would wake up to eat, he would be at the other end of the bed. We've known for awhile now that when he sleeps he is able to propel himself forward. But we've never seen him move forward when he is awake. He was famous for his "superman" flying pose with arms and legs outstretched as if he would be able to magically move to where he wanted to go. Then we started the "inclined floor" or "crawling track" and he was able to push off the sides down the ramp to move himself forward. For a couple weeks now, he has gained some speed and has started to use both sides of his body. Whenever we let him hang out at the bottom of the crawling track, he plays with his toys and moves in circles or backwards...just never forward.

On Monday after we hosted a music class at our house, a friend of mine Liz from the Sacramento Parent's Group was playing with Joaquin at the base of the track and she said she saw him move forward to get to his toys. Later that day, I put him on the track and sure enough when he reached the bottom I put a toy just out of his reach, he consciously and very deliberately placed both hands on the floor and thrust himself forward to grab the toy. It was the most adorable thing and the determination on his face was priceless. YAHOO!!!!

So, we are hoping it's just a matter of time before he is crawling all over the place. And by crawling we mean "army" crawling with his belly still on the floor but moving his arms and legs to get where he wants to go. Crawling and then eventually creeping on hands and knees as he gets stronger.

We celebrated all these milestones with Diego and Mateo and it was always such an exciting process. But it's different with Joaquin. Because we know that these "baby steps" are more difficult for Joaquin, we are just in awe and there is such pure, simple delight in his accomplishments.

We are so proud of him.

Our Little Pumpkins

We took our first trip to the Pumpkin Patch with Joaquin on Sunday. We met up with some other parents who have children with Down syndrome. It was a great afternoon complete with a petting zoo, haunted barn, tree slides, corn maze and pumpkin patch. All of the boys had a good time. In fact, we made two trips to the haunted barn and we have three pumpkins (one big one, one medium one and one small one) sitting on our porch bench.

Our three sons

Giving a kiss to the pumpkin

Little man

It's a Tooth....AGAIN!

So, tooth #2 decided to arrive today and joined tooth #1! Yahoo! Side by side on the bottom they both sit and it is so adorable! No more toothless grins.

Great news!

One of our posts from this blog was selected to be published in a book called "Gifts: Volume II" due late 2009 or early 2010!!! We won't tell which post so it will be a surprise but we got word on Friday that the editor had selected us and we will start working with an editing team in December to fine tune the essay.

I read the book "GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" when I first learned about Joaquin's diagnosis and it quickly became a lifeline for me. It was absolutely instrumental in helping me find peace and happiness with the diagnosis. It's a book filled with over 60 stories written by mothers about their children who have DS. "Gifts II" is the sequel to the first book and will expand on the topics of acceptance, courage, friendship, awareness and joy. I saw earlier this summer that the editor was looking for submissions to be hand selected for the new book, so Hector and I each submitted one.

We are so thrilled and the news brought tears to Hector's eyes. To think that we will be able to help others the way the stories in the first book helped us is just priceless.

More Alike Than Different

Can you guess who is who?

One of the biggest goals of Down Syndrome Awareness Month is to help people understand that people with Down syndrome are more alike than different. Here are each of our boys about the same age in the same hand knit beanie that my Grandma Esther made when Diego was first born. Even though children with Down syndrome have many common physical characteristics, they still have 46 chromosomes that came from each of their parents so they will still look very similar to their siblings. I think these photos prove it!

Baby Flex

One of the characteristics of Down syndrome is "an excessive ability to extend the joints." Babies with DS are extremely flexible and Joaquin is no exception. Here is a photo of one of his most favorite positions.  We are constantly reminding him not to poke his eye out...with his toes!!!

Abuela

Here is a photo of Joaquin and Abuela (Hector's mom) when they met in Mexico earlier this year.

The "Face"

So I just have to clarify this picture (and the other "face" pictures in the Buddy Walk slide show.)

Joaquin is not unhappy in these photos nor is he about to cry. In fact, he still rarely if ever cries at all. This is the "face" that he makes whenever the sun hits his face, or it's too bright outside, or when we shine the light in his eyes during his sensory stimulation program. It is hilarious to see him make it because he can really exaggerate it and his brothers get a kick out of it too. It cracks us all up! Joaquin will make this face and then quickly turn it off when you say to him "open your eyes" or if you put him back in the shade.

I think it's a preview into his personality. I think he's got a little "ham" in him. We love the "face"!

Questions?

In honor of Down Syndrome Awareness Month, I wanted to welcome any questions you may have. Often when I see people and Joaquin is with me, there is a lot of interest about some of the physical markers I noticed on Joaquin when he was newborn....the sandal gap on his toes, the crease on his palm, etc. At the Buddy Walk on Saturday, there were myths and facts posted along the path to help educate the public about DS. Please, if anyone reading this blog has any questions at all, I would love to answer them. Really, anything is open for discussion! I'd also be happy to answer any questions about the program we are doing with the Institutes. You can post your question in the comments section and I will do my best to answer them all. Fire away!!!

It's a Tooth

Joaquin has his first tooth! It broke through the skin earlier this week and every day a little more of it shows. It's on the bottom in the middle. I think the second one right next to it is coming any day. My baby is growing up! It is common for babies with DS to have very erratic tooth eruption and sometimes a very late start. We met the most adorable baby on Saturday at the Buddy Walk and he didn't get his first tooth until 16 months and it was his molars. His mom called him the poster child for DS in regards to teeth. I believe his name was Nathan and oh my gosh, he was the cutest thing ever!
We'll post a picture as soon as it's more visible. In the meantime, here is another photo of the two of us yesterday at the Buddy Walk.

Buddy Walk 2008

A slide show from our very special day spent with great friends and family. Enjoy!


Click on the image

The slideshow might not load in some systems. Here is an alternative one that Hector made. (Please be patient, it might take a couple of minutes to load)

Update on Andres

A post from Hector...

A few days ago I was chatting with my nephew Santiago and as always we talked about our families. "How is everyone doing?" Never anything too deep but I love how polite he is, always concerned about every single one of us. So I went through the motions of asking him about his brothers Juan Pablo and Andres, while I was trying to do some work on the computer at the same time. After I asked him about Andres, I got a little curious about what life with Andres was like and we started talking about the things that Andres likes to do. Andres loves to type on the computer, not sure what exactly but Santiago says that he copies his favorite books. I asked Santiago to help create an email account for Andres so that we could write to each other. I would love to get to know Andres better and know more about his thoughts. I confirmed that Andres is in his senior year of high school and I casually asked Santiago if he knew what Andres was going to do after he graduated from school. To my surprise he responded "He is going to college, to la Ibero", that's La Universidad Iberoamericana, one of the top universities in Mexico. I'm not sure about any of the details or how it is going to work out but I was so pleased to hear that. Santiago didn't know much more about Andres' plans but I can't wait to hear more about it and what he plans to study.

I am so proud of him and it gives me great hope to think that Joaquin might be able to get there someday.

Here are a few on my favorite photos of Andres growing up:

This is my most memorable photo of him, I remember we were playing soccer in my parents front patio and I started taking photos of him, he climbed on top of me and was laying on my chest looking at the camera with those big eyes. I remember how sweet and loving he was, I use to love when he walked into my parents house, I would get down on my knees and ask him for a hug, that was my favorite thing.

On a family trip to Oaxaca

So cute with his glasses

With Glenn Doman on one of his visits to the Institutes

Andres this past summer in Mexico with Mateo

Get It Down: 31 for 21

October is Down Syndrome Awareness Month and there is a small campaign (that is getting bigger by the day) that is encouraging bloggers in the Down syndrome community to post all 31 days of October in honor of Trisomy 21... hence 31 for 21. So, we'll do our best to make this happen!


We are gearing up for the Buddy Walk this Saturday and I've decided to make light blue tie dye t-shirts with the saying "Walking for Joaquin: Buddy Walk 2008" for all the kids walking with us. I've got horrible blisters on my fingers from all the rubber banding (this was my first attempt at tie dying) but they turned out adorable! There will be at least 26 children walking with our group. Team Baby Joaquin is currently ranked #2 in fundraising efforts!!

A gigantic THANK YOU to everyone who helped us meet and EXCEED our goal of $1000. It means the world to us and it will make a big difference in the lives of families blessed with a new baby with Down syndrome.

"Founded by God"

I just ran across a piece of scratch paper that a nurse gave to me when I was in the hospital after delivering Joaquin.

I had taken a walk down the hallway of the hospital on the evening of the day Joaquin was born, just to check out the maternity floor. Since his birth was so fast, I never got a chance to get my bearings. I didn't even know where my room was in relation to the rest of the ward. Anyway, during my walk, I stopped at the nurses station to get some water with that crunchy crushed ice in it and chatted with the night nurses. We got to talking about names and what they mean and where they come from. I told them that Diego means "James" in Spanish and Mateo means "Matthew" but that I had no idea what the English translation for Joaquin was or if one existed. The nurses and I continued to chat for awhile and then I left to get back to my baby and my husband.

Later that night, Hector had gone home to sleep with the boys and I was alone in my room with the baby. It was the middle of the night and I had drifted to sleep. The only light in the room was a nightlight behind my bed. I was in that dreamlike sleep when I realized that one of the nurses I had spoken with earlier had come into my room. I was a bit startled and as I tried to wake myself up, she quickly handed me the piece of scratch paper and said that she did a little research on Joaquin's name and she wanted me to have it. She quickly left the room, not wanting to disturb me any further. She wasn't the nurse assigned to me so I never got the chance to see her again. I turned on one of the reading lights on the hospital bed and on the piece of paper, she had written "Joaquin means 'founded by God' in Hebrew. The original name is Joachim, the father of the Virgin Mary."

I remember feeling an overwhelming sense of peace when I read this. I remember feeling very touched by the nurse's kindness and thoughtfulness. I also remember thinking how special this name was for my sweet, precious baby boy. Now I know why.

"Is He Cross-Eyed?"

I was at the checkout stand at our local co-op when the lady checking us out was really "checking us out." She was looking at Mateo in the shopping cart and mentioned how cute he was and how he looked like a little man. It must be his new crewcut, it really is adorable. Then she was looking at Joaquin who was in the baby carrier on my chest and she asked if he was a boy. Then came the "look". She stared briefly at him and then asked me "Is he cross-eyed?" I took the comment as just a matter of fact conversation and said, "Yes, he's cross-eyed." Then I mentioned that we were going to work on trying to correct it and left it at that. This was the first time a stranger has said anything to me out of the ordinary about Joaquin. I took it in stride but I know this is a first of many "looks" and comments that we might get for years and years to come. In the past, when people have stared at the baby, I just assumed it was because he's the cutest darn thing but now I'm wondering if it's because he "looks" different.

Anyway, it's time for an update on our little man!

Joaquin is now 7 1/2 months old and he just started solid foods. He's had peas, carrots, sweet potatoes and applesauce. He loves them all (most of the time) but I discovered after speaking with his speech therapist that I'm putting way too much on the spoon. We are supposed to feed him on alternating sides of his mouth which will help encourage him to use all the muscles of his mouth and tongue to move the food around and swallow. He has no difficulties swallowing and he loves to blow raspberries when his mouth is full. Too funny and very messy!

We have a hearing aid evaluation later this week. We will determine whether or not we need to use hearing aids until his ears are big enough for tubes. Last visit to the ENT (Ear, Nose, and Throat) doctor, we found out his ear canals are still too small for tube placement. This could change quickly though, even in just a few months.

Last week we had our first visit to the Opthomologist. As I mentioned earlier and you might have noticed in the photos, Joaquin is cross eyed so we knew going into the appointment that he had a strabismus. He is also still very sensitive to light. The face he makes when he's in the bright light is hilarious. He's quite a "ham" already and is showing us his humorous side with his facial expressions. The doctor said that his sight is good from what she can tell so the strabismus is more likely related to a brain disorganization. She is recommending that we "patch" his good eye 3 hours a day for 3 months and then reevaluate. Joaquin is so easy going that he doesn't object to the patch at all and even in a few days we've seen some improvement. 10% of the cases of strabismus can be resolved with just the patch alone. If in 3 months, he continues to have the crossed eyes, she will recommend surgery. Now comes the hard part, the Institutes does not recommend patching and also does not agree with surgery. So we will have to weigh both sides of the argument and decide which course of action is the best for Joaquin. The Institutes believes that the sensory stimulation part of his program is in essence organizing and developing his brain, so the professionals there don't see the need for patching. The sensory stimulation program which includes the bits of intelligence cards and the light reflex exercises, where we go into a darkened room and shine a light into each eye over and over again several times a day, is much more comprehensive. They also feel that surgery may correct the condition temporarily but without solving the root of the problem in the brain through sensory input, the effects of the surgery will not last for very long. Decisions, decisions.... We will see an eye doctor in Philadelphia when we return in December who is very familiar with the Institutes program and children with Down syndrome so we look forward to hearing his opinion based on what he knows and has witnessed with the program.


Joaquin reading his bits of intelligence

Finally, Joaquin is still progressing and always impresses his physical therapist, Michelle, who comes to visit him twice a week through Alta Regional Center services. On Tuesdays, she meets Joaquin at my parent's spa and they do water therapy together. On Wednesdays, she comes to our house and works with him for about 45 minutes. Hector and I can't always see the gains because we are with him constantly but with Michelle coming twice a week, she is able to see and remark on all the progress he makes and she is always amazed. His trunk control, head control, upper body strength and endurance are all improving in leaps and bounds. He is able to hang from our thumbs for up to 10 seconds suspended in the air. We can tell he is getting more oxygen and increasing his lung capacity because the volume of his voice is louder and stronger every day. He will often begin the day "talking" which sounds more like yelling right now. This has become Diego and Mateo's wake up call....sometimes earlier than we would like but very cute nonetheless.

Joaquin has also developed a bit of stranger anxiety and we are so excited!!! I know it sounds strange but we were so proud the day he cried in the arms of a dear friend of ours because the voice and the face were unfamiliar to him. The fact that he can notice this is such a big milestone. We had to explain to our friend why we were so excited about it even though normally it's not something to rejoice.

We continue to work with the Intensive Treatment Program and some days it's harder than others to get it all in but we give it our best effort. There is the occasional day that I find myself just wanting to hold him, kiss him, stare at him and cuddle him and I could do it for hours and hours. His sweet face, his amazing dark curly lashes and his huge grin are just the best.
Joaquin's most favorite thing right now? Itsy bitsy spider! It's gets him giggling every time. That....and cheering and clapping together....you should see how wide his grin is when we get going. He continues to amaze us and humble us every day.

And here is Joaquin playing with his Papa...

We have a dream... (Part 2)

Post by Hector...

After the Republican National Convention was over and Sarah Palin left us so energized and excited about the possibility of having a friend and an advocate in the White House, our sky was looking absolutely red not blue. So the first thing I did was to try to learn more about what the McCain-Palin ticket stance on different issues was, specifically on disability rights and the Individuals with Disabilities Education Act (IDEA).

First I went to McCain's website, and bunched up with some other programs he mentions IDEA, in a page for Early Education with no specifics. Then I did a search and the only related link that came back was the early education page I already seen. The word "disability" only pops up in relation to veterans. They haven't addressed the issue of funding IDEA and lack any specific plans, hmmmm...

On Obama's page, I was surprised to find the word "Disabilities" listed in the Issues menu, right alongside education, the economy, and Iraq. Click on that and at the bottom there is a link for a PDF to see his full Disabilities Plan. Open it and you can read: "BARACK OBAMA’S PLAN TO EMPOWER AMERICANS WITH DISABILITIES", Providing Americans with Disabilities Educational Opportunities: Fully Funding the Individuals with Disabilities Education Act (IDEA), Early Intervention for Children with Disabilities, Support Universal Screening, and it goes on and on. Pretty impressive.

I was dumbfounded. Why doesn't McCain have a plan on how they will increased funds for programs to help people with disabilites? The McCain-Palin ticket has not specified yet how they are going to help the more than 44 million people with disabilities.

I applaud Sarah Palin for using her office to help families who need it and raising the funds per disable child by almost double and increasing funds for several other disability programs in the state of Alaska. Her personal experience as a mother of a child with a disability is inspiring, as inspiring as the story of any mother of a disable child. There is no doubt that she has increased the visibility of the disability community, especially of the Down Syndrome community, the one that has been very vocal with admiration and criticism. Personally, I love seeing Trig up on stage being passed around without shame, being cuddled and loved (and his hair licked by his baby sister!!!). How wonderful it is to see the face of Down syndrome all over the news.

So Sarah, we are all waiting for a specific plan. How proactive will the McCain-Palin administration be on disability issues?

I do want to believe in Palin. Wouldn't it be wonderful to celebrate the first ever woman VP, to have Trig crawling around all over the White House, and to raise the visibility of DS to a level that none of us could have ever possibly imagined? We can only hope that the McCain-Palin disabilities plan looks anything, if not better than, what Obama is offering at this time. If nothing else, Down syndrome is on a lot of peoples minds and Palin is certainly responsible for an exposure effect that is necessary.

Please take a look at this report by Katie Couric:




And some more important details that were edited out...



Sound familiar? Almost identical to what Jen was trying to explain in the article in Kidaround magazine.

We are waiting for an answer McCain and Palin....

Walking for Joaquin

We are so excited to participate in our first mile long Buddy Walk on Saturday, October 4th at Southside Park in Sacramento. We plan on walking it together as a group of friends and family and we've started a team called "Baby Joaquin"...walking for Joaquin.

Buddy Walks will be held all over the country to increase awareness, raise funds for local programs and improve acceptance of people with Down syndrome. The Down Syndrome Information Alliance here in Sacramento is hoping to raise $50,000 this year and the money will support programs that will improve the lives of people with DS. Team Baby Joaquin has a modest goal of $500- we figured $100 for each family member in the Sanchez clan. Thank you so much to our friends and family who have already donated in honor of our sweet baby J.

Chris Burke and his band will be performing at the park after the walk. Do you remember "Corky" from the 80's sitcom "Life Goes On"? It should be a lot of fun to see him entertain the crowd!

If you want to join our team and walk with Joaquin or are interested in making a donation to our team, please check out our team website:

Click Here to Donate
We would love to have you join us in our efforts to raise money for a great cause!

Muchas Gracias!

We have a dream...

Shortly after we found out about Joaquin's diagnosis I read an article in the Sacramento Bee about Trig's birth to Governor Sarah Palin in Alaska and I told Jen to send her a note with our support. A few weeks later we got an email from Palin's mother, who was helping her handle her mail, thanking us for our kind note and congratulating us as well. As you can imagine, we were very surprised and elated when we heard the news about McCain's pick for his VP running mate.

We know that talking about politics is a sure way to stir up emotions and make some enemies but we have been wanting to write something about this since the news broke but we didn't want to use this blog as a media to express our political views. Nevertheless, last night Jen and I watched Sarah Palin's speech and were touched and excited to hear her talk about families with special needs.

Sometimes even the greatest joys bring challenge. And children with special needs inspire a very, very special love.

To the families of special-needs children all across this country, I have a message for you: For years, you've sought to make America a more welcoming place for your sons and daughters. And I pledge to you that, if we're elected, you will have a friend and advocate in the White House.

So politics aside, you have to agree that as a family with a baby boy with Down syndrome those words are a breath of fresh air and if nothing else give us hope of a better future for Joaquin and all children with special needs.

Kidaround

If you live in the Greater Sacramento area, pick up a copy of Kidaround Magazine at any of these locations. There is a great article on Jen and Baby Joaquin, and as you can see our friend Penny took an awesome photo for the cover. If you are from out of town, you can see and read the magazine online here.

This is Penny's original photo: