Monday, June 27, 2011

New BLOG!

Please come join us over at our NEW blog...it's about time we realized we are now a family of 6!!!!


Promise to have some fun updates this week!

Tuesday, June 14, 2011

Annual Check-up!


It was time for our annual check-up and we are happy to report that we are growing and thriving! Only 3 pounds separates the two of us (despite being almost exactly one year apart!) so we are often mistaken for twins. We LOVE each other so very much and get into constant trouble around the house! Thank goodness one of us is in school almost every day otherwise mama would be going crazy by now chasing and cleaning up after the two of us.

Mama says she PROMISES to be better about posting! Life sure is busy with 4 rambunctious and very busy kiddos! Having three boys ages 8, 6 and 3 is a handful and add one feisty 2 year old princess and well...we have a FULL house.

Check back in again soon! So many new things going on with the Sanchez Six (yes...mama and papa round us out to 6 silly Sanchez family members!) Stay tuned for a NEW blog that combines Saving Sofia and Three's a Charm...it's about time!

Monday, April 11, 2011

So Far So Good!


Here is Joaquin moments before surgery. He was in SUCH a good mood and as charming as ever. FULL of grins and giggles. Surgery went smooth and quick. Both eyes were done and now we let it heal and wait and see how successful it was. They sent him home without any special medication and no patches or guards so I'm a nervous wreck about it. The only precaution is for 2 weeks we need to keep him away from playground sand and putting his head underwater. His eyes are really swollen, sensitive and totally red. I can barely look at his eyes without it totally hurting me and making my stomach turn. We know that this was a procedure totally recommended by his doctor/eye surgeon and that there are many benefits to doing it but there is a teeny tiny part of me that feels like I am messing with my boy and his beautiful eyes. They are one of my most favorite things about him. His beautiful eyes are the windows to his soul and I just don't want to do anything to hurt him or those precious peepers. I can't tell yet if the surgery worked. They look pretty good but it's really deceiving with all the red on the eye. We will know in 6 weeks. We have a quick post op appointment tomorrow morning and then in six weeks we go back to evaluate the results.

Thank you everyone in blogging land, text, facebook, phone and in person for being so supportive. We love you all. Now back to snuggling my boy and helping him heal!

Friday, April 8, 2011

Eye Surgery on Monday

Joaquin is scheduled to have eye surgery on Monday and check in is at 6:15am at UC Davis Medical Center. We are hoping and praying that the surgery to correct his strabismus is successful and that he has no complications and that this will be the only surgery for his eyes that he'll ever need.

We welcome prayers and good thoughts leading up to the surgery and on the day of surgery! We hope he heals quickly and that his eyes are straight therefore giving him better depth perception. We have every confidence in his eye doctor/surgeon. It is an outpatient procedure and he will be able to participate immediately in all his activities except for playgrounds with sand and underwater activities for 2 weeks.

PRAYING all goes well!

Sunday, March 20, 2011

Happy World Down Syndrome Day! 3-21-11




All these beautiful children I am happy to know and love...the babes of the Sacramento Area Sisterhood. This is a preview to a DSIA 2012 Calendar fundraiser and photos were taken by the talented team at Benton Photography. Enjoy! 

Celebrate that special extra chromosome!

Tuesday, March 8, 2011

My Favorite Face

Photo taken by Michelle Marrone (dear friend and photographer)

This face and this smile makes my world. This is Joaquin in his true form...giving love. Oh how blessed we are to have him in our lives.

Our Little School Boy


Joaquin has been in preschool now for a little less than a month and I thought I would share an update. He is THRIVING in school and I don't know if it's his age now or his going to school or what it is but he is soaking up the world around him. He is obsessed with letters, numbers, picture cards, manipulative puzzles, throwing/catching/kicking balls, and anything musical.

He will recite the ABC's on his own with very little to no prompting. He grabs magnetic letters off the fridge and 8 out of 10 times he accurately identifies the letter. He wants to count things all the time. He LOVES books and asks to read books more than any other activity. He is using scissors on his own. He is potty training. He is exploding with his language. He is so HAPPY.

He now asks for the bus when he wakes up and wants to put his backpack on and get out the door to wait for the big yellow school bus. He gets on and just SMILES now. He loves it. We blow kisses to each other and it's the cutest, sweetest goodbye I have ever experienced with any of my children.

I have no doubt that this is the absolute BEST thing for Joaquin. I'm so grateful for our school system and for the teachers and for the therapists, friends, and family that have helped prepare Joaquin for this next BIG step in his growth and development and independence.

I found out today that he is starting OT and PT at school every week in addition to the ST he gets twice a week and all of these therapies will be "pushed in" to the classroom setting. Our team would like to do another IEP in May to prepare and revise his plan for the Fall. Joaquin will be starting full immersion preschool this Fall with all the other incoming neighborhood 3 year olds two days a week at our home school down the street. On the other days, he will continue to take the bus to attend his Special Day Program where he will receive all his intensive therapies to continue to help him thrive in "typical" preschool. So all in all, I feel like I've hit the lottery with this team of teachers and therapists and professionals. They care....they really truly care and love my child. We are so blessed. I'm going to stay positive and believe that there is every chance that our experience will continue to be positive. I know it's a long and difficult and challenging road ahead but I feel like we've got a terrific start!

Tuesday, February 8, 2011

The Wheels on the Bus

And he's off...to preschool. Oh my goodness, a mixture of emotions bottled up inside. Pride, excitement, hope, joy, nervousness, sadness, fear. All of them at once bubbling up to the surface. Proud of my big boy. Excited for this next new step. Hope for a wonderful first experience with school. Joy at seeing his smiling face. Nervous about letting go. Sad seeing him get worried. Fear for all the unknowns.

We talked all morning about the bus and sang one of his favorite songs "The Wheels on the Bus". We got his backpack ready with some pull ups and wipes. We got a nice big brunch inside his belly and got dressed for the morning. The bus arrived promptly at 11:00 and as the wheels went round and round toward us Joaquin yelled out "BUS!" My voiced cracked a bit and tears welled up inside my eyes but I kept it together. I think it helped that I had to rush to pick up Mateo at 11:10 from Kindergarten and had Sofia to take care at the same time so those things served as great distractions.

Hector followed the school bus to pick up two other preschoolers and then followed the bus the 1.5 miles to Joaquin's school (he felt like a stalker!)  I was able to get there in time to see Joaquin being walked to class with one of the main teachers Miss Kelly (who is a DOLL!!!) and she had plenty of hugs and snuggles to give him when they greeted. It was only when he saw me that he gave us his sad face so it was then that I realized I needed to let go and let him grow from this experience without me distracting him.

I pick him up at 2:20pm so we'll see how it went. We decided not to go into class with him because everytime Joaquin saw us he got a little sad. PRAYING he has fun today and that he enjoys school and that the classmates and teachers love him as much as we do.








I'll try to upload the video of him getting on the bus later! SUPER windy day here today. He almost blew over a few times with the backpack on his back! My teeny tiny sprite.

Monday, February 7, 2011

THREE!!!

I'm THREE now and I'm starting preschool tomorrow. A yellow schoolbus is going to pick me up and I'm going to take my backpack and spend three hours away from home with my new school family.  I really have no idea what to expect but I know my mom and dad are really excited and a little nervous too!

Here are some pictures of me on my third birthday last week! I had so much fun but in the middle of the party I came down with a big fever and didn't feel very well. It was still so much fun spending my birthday at a gymnastics center with 31 of my buddies!



I'm a BIG boy now! Watch me grow and learn and soar! The sky is the limit for me!







Friday, January 14, 2011

Increasing Awareness...Powerful Stuff Here

Tears are still in my eyes watching and listening to this awareness video done by Kelle Hampton.

Check it out HERE!

You'll see a little clip of both my sweet angels! Rock on Nella!!!

Thursday, January 13, 2011

IEP Date is Set...Preschool Here We Come!

Our IEP (Individualized Education Plan/Program)date is set and we are getting ready for it! February 1st at 9AM...the day before Joaquin turns 3!!! Way to cut it close!

We have visited the program we were most interested in and that has been recommended for him by the school district and it looks like a perfect fit right now. It's a special day program preschool that is therapy intensive and has teacher/student ratio or 1:2 right now!  He will go 4 days a week for about 3 hours. They work on EVERYTHING from numbers, letters, phonics, speech, feeding self, potty training, fine motor, gross motor, socialization, handwriting without tears, colors, routines, EVERYTHING! They also spend a little time each day with the full inclusion preschool to observe and practice in that environment. The head teacher is AMAZING and ADORABLE...two prerequisites that all preschool teachers I think should have and it helps that she is young, energetic, motivated and highly educated. She has her teaching credential, early childhood education degree and a masters in special education. She runs the program with a great speech and language pathologist and then there is one more teacher's aid in the class. They will work on sensory issues, OT, PT, ST and some oral motor work. He may even take the BUS to and from preschool! WOW!

We have yet to see what more they may offer us and we do plan on asking for a few other things and we will continue to pay for private music therapy but I'm just thrilled with this next step! It's also perfect because we are starting mid-school year so we can reevaluate when the fall comes and see if he is ready for a few days in the full inclusion preschool next door. Joaquin has a few years of preschool ahead so we will work towards a goal of getting into a 5 day a week full inclusion preschool before Kindergarten!

Here is a short video of our littlest boy. And when I say little I mean tiny. VERY petite little boy. His sister is going to pass him up pretty soon!

Joaquin Being Cute!

I gave him a pre-birthday haircut today (all by myself!) so he'll be all set for preschool in February! He is such a sweet and funny little boy. He truly is the sunshine in our family!

Saturday, January 8, 2011

Happy New Year!

And what a year it has been!

Please consider visiting Kelle's blog at Enjoying the Small Things and see our sweet boy Joaquin and his darling sister Sofia as one of the MANY beautiful faces of Down syndrome.

Let's start the new year giving back...and in return giving a better future for all children blessed with a little extra chromosome and those GORGEOUS almond eyes.

Thursday, December 9, 2010

Eye Update

We saw Joaquin's eye doctor again last week and received some good news. The patching of his "good" eye is working and she doesn't think he'll need eye surgery after all! WOW! Took me by surprise because she seemed to think it was the ONLY solution for so long.

She said his eyes are straightening on their own and that we should continue to patch his dominant eye 3 hours a day and then do a full eye evaluation in 3 months to see if maybe he needs glasses now.

So we will continue to monitor it closely and patch daily to help our little guy. It would be WONDERFUL not to do the surgery and to be able to fix it somewhat more naturally!

Tuesday, November 2, 2010

Trick or Treat?

This was Joaquin's first year walking during Halloween and actually trick or treating! What a joy!

We had so much fun watching him walk up to all the houses and try and figure out just what he was doing there. Most of the time he had a pretty perplexed look on his face (if he wasn't grinning) and just overall seemed to love the freedom to walk all over the neighborhood. He tried to walk into a few people's houses here and there but he quickly caught on to putting his candy into his bag and saying/signing thank you and waving and saying goodbye.

Pretty darn cute! 

Sofia stayed home for the actual trick or treating part and the big Super Mario brothers were off and running as soon as we said "GO!"


Sunday, October 10, 2010

Saturday at the Park

All four of our kiddos on the swing set at our neighborhood park!

Tuesday, September 28, 2010

Those Eyes...Again!


So....I'm needing my blogging family and friends to help me out a bit. Am I being overly sensitive? I think so...

I've noticed lately that I'm a bit more sensitive when people strike a "funny" face for photos and more often than not people love to cross their eyes and stick out their tongue to make this face. I realize lately that the face is somewhat the face of a person with Down syndrome or any other brain injured person. Joaquin obviously has a strabismus so his eyes are crossed most of the time and occasionally his tongue rests on his lower lip when he is overly tired or relaxed.

I realize people...adults and children...mean absolutely no harm in making this face but when I see the crossed eyes I just cringe a tiny bit thinking they are making fun of themselves and looking "silly" or "dumb" but they are doing this by making their face resemble the face of someone with a strabismus. Do you think this goes back to the whole "retard" thing....looking and acting "retarded" to poke fun at oneself.

Just a random thought for the day. Silly I know but just sharing some of the thoughts that I have. It's not like I expect people to stop crossing their eyes when they make a face for the camera or for fun, it's not that. It's just I wonder where that ever came from or started from.  I've grown to love and adore my boy's little crossed eyes but yes, we will be doing the surgery to straighten them later this year and we'll see how successful the surgery is for cosmetic and medical reasons. Will having straight eyes help Joaquin to be more mainstreamed and less made fun of in the future? I don't know. Will it help people see beyond his disability if he doesn't "appear" to have DS or doesn't have the strabismus? I don't know. Does it bother me? I don't know. Will this bother Joaquin someday? I don't know.

I think I'm just having one of those overly sensitive days. I'll get over it...

Thursday, September 16, 2010

Down Syndrome in the Movies!

The opportunities and possibilities for people with Down syndrome continue to increase. Here is an article and movie trailer where Evan Sneider, an actor who has DS, is one of the main characters. It looks like it's an intense drama, looking forward to seeing it!

Girlfriend

Saturday, September 4, 2010

Tropical Storm Joaquin

Joaquin is like a walking hurricane these days...into everything. He is so BUSY and so CURIOUS and so full of MISCHIEF! I've been trying so hard to keep up with our house (since we are still trying to sell it!) and every time I clean up one room, I go into the next and it's like a tornado hit. It happens all. day. long.

He is so inquisitive and wants to explore every inch of his environment and that's wonderful...it's just impossible to keep up with him!

Here he is getting caught in the act of something...




Tuesday, August 17, 2010

A Down Syndrome Disney

We just returned from a quick celebration trip to Disneyland. We LOVE it there!

We have had the pleasure of going a couple times the last few years but about a little more than a year ago we took the boys (Joaquin's first trip to Disney) and we were so surprised not to see even one baby, child, teen or adult with DS our entire trip. And I was looking! I remember at the time wanting to see a familiar "face" at Disneyland.

I am happy to report that this trip was quite the opposite. So much so that by the end of the trip when we were in the lobby of our hotel and a teenage boy stopped to say hello and we saw that he too had DS, my mom and I were just laughing about it! We saw a few babies, several toddlers and kids, a TON of teenagers, and one adult woman with DS escorted by her niece. I also had the HUGE pleasure of meeting some of my SoCal sisters and blogging friends Denise, Cheri and Lisa and their amazing kiddos!

It seemed that everywhere we turned, we would see another family touched by DS. I was especially touched by one older teenage boy who was there with his family. I saw him kiss and hug his mom and grandma at least a dozen times in the 5-10 minutes I was watching them. I can totally see Joaquin being like this. He is SUCH a love bug. Then the other group that totally had us smiling was a group of about 5 teenage girls. They were there with their moms and the group of them have been friends since the girls were 2 years old and met through an Early Intervention program. They were celebrating their graduation from middle school and decided that Disneyland was the place to do that. The girls were a hoot and they loved Joaquin and Sofia. I had a great conversation with the moms too! In fact, two of the five girls were adopted by one of the moms. Amazing!

It was a LOVELY experience and so completely different from our last trip. This is how I imagined Disneyland to be...people from all backgrounds and abilities enjoying the happiest place on Earth!

By the way, Joaquin did great at Disney. His favorite by far was It's a Small World! He ADORED Mickey. Not at all afraid of him and was totally curious about his "nose", "eyes" and "ears"! Mickey spent a little extra time with our family which was really nice.

We LOVE Disneyland!

Wednesday, August 11, 2010

From A Sister

This is from one of my "sisters" and I think she makes a beautiful statement about parenting a child... special needs or not. Here it is. Thank you Susan for explaining this so beautifully!

When a parent hears the news or finds out their child has a difficulty, there is always a grieving period of the loss of what they thought they had and hoped for their child.  That can come at any time.  Birth, childhood, teenage years, or adulthood.  A difficult diagnosis, death, learned addictions, handicaps, different sexual preferences, whatever comes as a big surprise and possibly affects many of the hopes and dreams you have for your child as well as their quality of life, prosperity & longevity, and/or future generations takes time grieving and support while learning how to understand your part in helping the ones you love.  We feel really grateful for this difficulty because we have learned so many wonderful lessons from our beautiful little girl who has Down syndrome.  She radiates love and in reality it didn't take long at all to see it really isn't all that difficult or different, once we understood.  The initial fear of the unknown scared us, but it wasn't hard to find hope.  We have been seeing a whole new world of possibilities and have connected to amazing and inspiring children, people, families, professionals, and friends that have broaden our understanding and have instilled in life what matters most.  It is such a blessing that such a small little child could open the doors to such a beautiful place that challenges us to want to be better.  Who reminds me all the time what's most important in this life- people, especially those you love.  All children can offer this gift because EVERY child has the potential to stretch and challenge a parent if you accept the invitation whenever they come, the key is to have faith, learn, love, laugh, and work incredibly hard to assist, mentor, and encourage & support the best out of each of them no matter what level that is and to CELEBRATE all the little miracles and wonderful achievements.  Seeing our daughter work hard for everyday life without complaining,  with consistent effort having great spirits about her task.  Well it makes us appreciate and celebrate all the wonderful little things in life we take for granted.  She has the potential to achieve pretty much everything we can with a special thanks to the opportunities in America and those who have gone before us and fought for our kids' rights and for all those who love and support and teach her now- like any other child receives.  We are very lucky living in the day and age we do.  These children are more alike than they are different.  They have a special purpose to teach us "normal" people.

Thursday, August 5, 2010

I'm BAAAAACK! Aaarrrgggghh!


Here's our little pirate again! At least we are having fun with all the cool patch designs!

Wednesday, July 28, 2010

Those Eyes

We went to see the Opthomologist again today for a follow up on Joaquin's strabismus.  It was a good appointment in that Hector and I didn't allow ourselves to feel rushed and we asked a ton of questions and really got a better sense of what the doctor thinks is going on with his eyes.

The GREAT news is that Joaquin has wonderful vision. He does not need glasses and we can proceed with any reading program and visual activities that we want to do with him. This is a HUGE load off my mind as I have put off some interventions that I wanted to do with him because I was concerned about his crossed eyes.

The BAD news (but it's not really that bad) is that we have to patch again for one more month, patching his right eye (the dominant eye) for two hours a day. In one month we return to the doctor's office and if she feels that Joaquin is using both eyes equally, she will recommend surgery at that time. If she still feels there is an inequality, we will continue patching until the eyes are both being used (meaning there is no dominant eye).

The SCARY news is that it really looks like eye surgery for strabismus is in Joaquin's future. This is really hard for me to contemplate. There are many reasons why. First and foremost, we learned at The Institutes that eye surgery should always be avoided and instead we should work hard on helping to change the root or cause of the problem (the brain injury) instead of the result of the problem (the crossed eyes). Second, I hate the idea of cutting a muscle and reattaching it...especially when it has to do with his EYES! Third, I have sort of come to love Joaquin and his crazy crossed eyes and I worry about the "reasons" for doing this. Is it really necessary or is it cosmetic? The doctor seems to think that there are valid medical reasons as well as cosmetic reasons for doing this. Fourth, there is a 75% success rate for this surgery and the other 25% may need additional surgeries to fully resolve the strabismus. Uggh!

So...we have some time to think. We have at least one month of patching before we have to make any big decisions. In one month, we will see what the doctor says and go from there. We will be pursuing a few second opinions. We may see at least one more Opthomologist and then also consult with a Vision Therapist and an Optometrist. Just a few more things to add to our already full plate but Joaquin is SO worth it.

Such a HAM!

Have I mentioned how much I love this kid? Oh I could eat him up! And Sofia along with him. I can already tell we are going to have a lifetime of fun with these two!


Apparently Joaquin found Sofia edible too. He LOVES to kiss his sister but I guess one of those kisses turned into a "love" bite and Sofia ended up with some teeth marks on one of her cheeks. I can't say that I blame him. Those cheeks are irresistible but I will be keeping a closer eye on him from now on!

P.S. These beautiful photographs were taken by Trace Grace Photography. Aren't they AWESOME?!?

Tuesday, July 20, 2010

Álvaro del Bosque

Most of you know that Spain won the World Cup this month and for those who follow soccer, you know that this is a huge deal for Spain.  If you ask Jen she'll tell you how passionate I am about soccer. She is probably glad it is over because I was glued to the TV for a month. The day the World Cup started in South Africa we were in Ukraine getting ready to take the train back to Kiev a few days after we took Sofia out of the orphanage. I was so stressed out because I didn't know until the last minute if I was going to be able to watch the opening match. Mexico was playing South Africa, the host nation. I kept flipping channels hoping I was going to bump into it and 5 minutes before kick off time, it came on and I was in heaven.  Every afternoon in Kiev all I did was watch World Cup soccer until early morning, 3 matches every day, and back at home it didn't end until the last day.  Mexico got eliminated by Argentina on the round of sixteens, so I switched to Spain as my favorite and I was really happy to see them go all the way until they raised the World Cup, raising the Cup is such a huge deal. In soccer world there is nothing like it and not many people get to do that.

This morning I got an email from my oldest brother Sergio, he is married to Elena who is from Spain, so you can imagine how excited they both are. In the email was an article about the son of Spain's Head Coach, Vicente del Bosque, who has Down Syndrome.  I didn't know this about him until today so that made the whole thing extra special, and seeing this picture brought tears to my eyes.



This is a abstract of the original article from El Pais, Madrid's main newspaper:

Of the three sons of Vicente del Bosque, there is one, Alvaro, the middle child, that change his life. Alvaro was born on August 6, 1989, back then, del Bosque was the Head Coach for Castilla. A few days after a test confirmed that Alvarito had Down Syndrome. "At first we cried a lot", I confess that now that I look back I think que gilipollas fuimos, how stupid we were.
For Vicente Del Bosque and his friends, there is no thought: Alvaro is a gift that life conceded him. Yesterday in Monclova, wearing a number 6 jersey of del Bosque and before going into the Palace Alvaro gave a big embrace to his father. Later he was seen joking with Xavi Hernandez, star midfielder, in the champions bus. "My son is happy and radiates happiness. He is mischievous, but he doesn't know evil", del Bosque proudly explains. Del Bosque, convinced that things happen for a reason, remembers that when he use to play for "El Real Madrid", every morning there was a boy with Down Syndrome that use to visit us at the locker room: "I don't remember his name, just that he was a lot of fun and we really liked him, he use to grab my mustache".
They say that Alvaro is a charming young man, but that doesn't take away being critic about his father's soccer decisions, he gets mad when he doesn't play, in his opinion, the right player in a match, and every day he use to tell him that he wanted Daniel Guiza to to make the cut for the World Cup roster, the one that didn't make it and Alvaro was really mad. He took a lot of liking for 2 players during the world cup, Llorente and Javi Martínez, just because he went to a Safari with their families, so he defended them and ask his father to play them.

Tuesday, July 6, 2010

Meet My New Sister


Here is my new sister Sofia. We are almost exactly a year apart but we look like twins next to each other. We are having so much fun together already! Mama calls us her little monkeys. I wonder why?