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!


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'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?

Friday, June 25, 2010

LOVE him!

Can he get any more edible? This photo was taken by a friend on her iphone so it's not the best quality but I just LOVE him and his face and his green eyes. I swear I kiss him a thousand times per day!

Monday, June 21, 2010

Joaquin Stealing the Show!

Friday, June 18, 2010

Our New Family

I'm going to have to figure out a new blog title now that we are FOUR!

Any suggestions?

Wednesday, June 16, 2010

Big Brother

Joaquin is a BIG BROTHER!

Sofia has arrived and our family is complete with our latest addition! Finally a little bit of pink in the house!

You can read all about our homecoming here and here. Joaquin greeted Sofia with a big kiss! He seems like such a big boy now that there is a baby in the house!

Wednesday, June 2, 2010

Sums It Up

This article really sums it up. One of the most frequent questions I get asked when on the topic of Joaquin is "Did you get prenatal testing?" I'm pretty passionate about this topic and I can feel my blood boiling a bit whenever I think about it. This article is so well written. It accurately describes my own feelings and much so I found myself in tears reading it. I just relate.

Check it out here.

There's no such thing as the perfect child.

Wednesday, May 26, 2010

Over It

Joaquin has another evaluation coming up for his Early Intervention services so all his therapists are doing their 6 month evaluations on him and letting me know where he falls on the spectrum as far as his abilities or lack of abilities. One of our teachers from Easter Seals was asking me all sorts of questions like how many words does he say and how many words does he sign. I told her "a bunch". She wanted a number. I told her I don't really count them but he has a lot and we are happy with his progress. Again, she wanted a number. I told her I really don't know and I really don't care to count them out. He's behind for his age as far as his typical peers go so why does it matter what number of words he says.

Can you tell I'm over it?

I really am. I love Joaquin. He is amazing. He does amazing things and he does them on his own time. He is progressing and he is improving all the time. I don't see the point in putting a "number" on it. I KNOW the therapists have to do this in order to justify his therapies and I UNDERSTAND that, I'm just over it.

I told the teacher from Easter Seals put whatever number or age range you want, it really doesn't matter to me. I'm happy with where Joaquin is at right now. She was SHOCKED! She said so many parents want to know exactly where their kids fall in the "typical" range and these parents keep very close track of it. I don't. I don't keep Joaquin's therapy notes. I read them and then I toss them. Sorry. I live a lot of my life in the moment and I don't like to dwell too much on things and maybe this makes me a bad parent. But I don't think I am. Joaquin gets over 6 therapies a week and I make sure he gets to all of those appointments and he rarely if ever misses them. I read to him, sing with him, sign with him and play with him all day every day. He is surrounded by his two big brothers every day. He is in our community every day socializing with my friends, his brother's friends and his own friends. He gets loved on by his grandparents almost every day. He's pretty integrated into our lives I would say. And for the most part, besides those 6 hours of therapy a week, he's just my normal child. Sure he's over 2 and just starting to walk, that's ok with me. He's going to walk, run and jump soon enough. Sure he's over 2 and not talking in sentences, but he is communicating and he is getting most of his needs met through his signs and limited words. He will continue to improve on this with time.

Again, I may be in for a huge reality check when it comes time to transition from IFSP's to IEP's but I know my child and I know how to advocate for him so I'll cross that bridge when I have to.

So, when it comes time for these 6 month reports, I just simply get through them, nod my head, make sure Joaquin gets the services he needs and then move on. I do not even care to hear where he falls on the spectrum...I just don't. Like I said it doesn't matter to me. I'm over it.

Ok...thanks for the vent.

Thursday, May 20, 2010

Pirate No More

I called Joaquin's eye doctor today to get some advice on what to do about our patching prescription of 3 hours a day. Ever since we've started patching, Joaquin's good eye has started turning in a lot and his strabismus has gotten much worse. I was fully expecting to hear that we needed to continue or maybe to alternate patching on each eye.

Well, they are giving us a "patching vacation". She said that it's an excellent sign that Joaquin's good eye is turning in now. She said the brain is now switching to using his "bad" eye more than his "good" eye and that his sight has most likely returned in the "bad" eye.

She'll see us again in July and reevaluate. Sigh. Okay.

P.S. Above is a photo of Joaquin with his buddy Sheridan who is having open heart surgery next week, please say a special prayer for him and that he recovers quickly and is back playing with his buddies as soon as possible! And see this very special quilt we had made for him at Monkey Musings. We love you Sheridan!

Thursday, May 13, 2010

Monica & David

I cannot WAIT to see this documentary. It won Best Documentary at the Tribeca Film Festival. ANYTHING is possible for Joaquin...and Sofia...and all their peers! I cannot wait to see what the future holds for Joaquin and for Sofia.

Monica & David

Monday, May 3, 2010

Update on "Joaquini"

My little angel boy is growing up. He is consistently standing on his own and taking 2-3 steps without prompting. With prompting, he is taking 5-8 steps. He may be walking by the time we return from Ukraine in a week. It's so exciting and I can't wait for him to take this next "step" in his development.

On another (more disturbing and shocking) note, my mom took Joaquin to see the eye doctor last week since we were in Ukraine and didn't want him to miss this appointment. We've been waiting over 9 months to see this doctor. Pediatric opthamologists are few and far between. The last time we had Joaquin's eyes checked, his vision was excellent and he had a strabismus that we were addressing with patching periodically as needed. His strabismus has slowly improved with time and when he started creeping on hands and knees, it was improving even more. He has excellent vision as far as we knew because he can make the sounds and signs of different animals and objects when looking at their pictures and he never runs into things or stumbles and he seems to know and "see" exactly what he wants to. He loves his Signing Times videos and also imitates those while watching the TV and it never appeared that he was using only one eye. So we knew he could "see" and weren't concerned too much. We were just eager to hear what the specialist would say about his improved strabismus and see what else was new with his sight.

Imagine my surprise and shock when I got an email from my mom that the doctor said Joaquin is almost BLIND in his left eye. WHAT?!?!? So the specialist recommended immediate patching of the right eye for 3 hours per day for 3 months to see if he can regain any sight in his left eye. Shock...that's all I felt...shock. When did his excellent vision deteriorate when all we saw was progress?

So my mom has been patching Joaquin religiously since then. What is very interesting is that even when patched, Joaquin can see. He gets around just fine, doesn't bump into things. He watches his programs and looks at his books. He does everything he normally how is that blind?!? We will continue to do the patching and I am VERY eager to go to the next appointment and try and figure out what is going on with Joaquin's sight. I have a million questions and I will NOT miss this appointment.

I feel horrible about all of this. I feel responsible. I don't understand how this happened. I just want the best for my boy and will do whatever I can to help him. So I'm hoping and praying that his sight will be regained in his left eye. These things we take for so crucial and seem even more so when the challenges are already stacked against my little guy.

Love you "Joaquini"!

Saturday, April 24, 2010

Make Room For Pink!

Diego, Mateo and Joaquin have a baby sister in the making!!!

Can you just imagine the smooches this little girl is going to get when she gets home! I can't wait to see the boys with her. I know Joaquin especially is going to LOVE all over her!


Thursday, April 8, 2010

Musings of Modern Mamas

Both our Three's A Charm blog and our Saving Sofia blog were featured at Musings of Modern Mamas the past two weeks. Check it out! What an honor to be recognized in this way!

Thank you Kaydee!