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.

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!

My BIG Boy!

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

My Beautiful Boy

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 does...so 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 granted...sight...vision...are so crucial and seem even more so when the challenges are already stacked against my little guy.

Love you "Joaquini"!

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!

I've Got My Copy Ordered

Do you?

I'm Down With You

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!

Wordless Wednesday- Ranch Weekend

One Step Closer...

...to becoming a family of SIX!

Check it out...Saving Sofia

The boys are one step closer to having a baby sister!

Sofia...here we come!!!

Wordless Wednesday- Happy Easter 2010!

Standing and Stepping

He did it!

He's standing on his own! He has taken one step from that position as well!

Walking is JUST around the corner.

We're so proud of you Joaquin and so excited for this next new stage in your development!

"Joaquin Funny!"

These are the words of our *almost* 2 year old neighbor Addison when you ask her to sum up our attempt at an annual St. Patrick's Day photo in front of our tree.

It was quite an effort to get all 5 kids still and smiling at the same time and little stinker that he is, Joaquin was the MOST difficult. All he wanted to do was escape and crawl down the street...his new favorite past time much to my dismay. I cannot for a SECOND keep the front door open or my escape artist is literally scurrying down the front porch steps, down the driveway and then down the street. This boy is LIGHTENING fast when he crawls. I really have never seen anything like it. He is SPEEDY!

"Joaquin Funny!"

So Sweet

On Saturday we attended a local community outreach and support meeting for families touched by Down syndrome sponsored by DSIA.

We left our kids downstairs for music with Music to Grow On and an art session by Maren's Art Studio while we went upstairs for a discussion session just for the parents. I have to say I was a bit nervous leaving my 3 very active and sometimes rowdy boys but when we got downstairs, the first thing I saw was this.



Joaquin had fallen asleep in the arms of J.P., a self advocate and avid golfer...and apparently a baby whisperer. It was the sweetest thing to see.

World Down Syndrome Day 3-21-10

Happy World Down Syndrome Day....3-21...in honor of that VERY special extra chromosome that seems to be somewhat magical.

We love you Joaquin and everything you have taught us...to appreciate the beauty in all things and to let go of the myth of perfection.

You are a GIFT!

My Son Ate My Calendar!

You've all heard the excuse..."My dog ate my homework!"

Well, today I went to go grab my appointment book which I often call my Bible because it holds EVERYTHING I need to know to function on a daily basis! I found it on the floor near the dining room table and there were a few remnants of wet and chewed paper next to it.

JOAQUIN ATE MY CALENDAR BOOK!!!

He helped himself to two pages...this week and next week...and now I'm totally LOST!!!

I'd be freaking out if it wasn't so darn funny. Silly...and apparently hungry...boy!

Now off to figure out what I had planned and scheduled for this week and next. Yikes! Just happens to be two very important and busy weeks in our lives right now!

NDSC Poster Campaign

To cast a vote for Joaquin, go to the NDSC website and scroll down the first paragraph where it says "To pick a poster..." and pick poster #199 if you love Joaquin's! You can also vote for his baby sister Sofia by picking her poster #200!

"R" Word Speech You Don't Want to Miss

Kevin's R Word Speech

A fellow blogger and friend Lisa at Finnian's Journey recently posted this very touching speech by her oldest son Kevin (13) who plans on presenting it to his student body and their families. I'm so very proud of him and can only HOPE my two oldest boys will follow in Kevin's footsteps and be an advocate for their little brother (and soon to be baby sister) some day.

I love Dan!

If you haven't "met" Dan, you need to go check him out on his brother's blog titled Dan Drinker. This post and this post are just two of many posts that I seriously get the biggest chuckle over. I cannot wait to "get to know" Joaquin as a young adult (although I'm totally savoring his babyhood!) I have to think that based on Joaquin's personality now that he just might have a similar sense of humor.

I adore you Dan!

Heroes Among Us

Reece's Rainbow founder Andrea Roberts will be featured in this week's People Magazine, in a section called "Heroes Among Us". The edition will be available Friday, February 19th. This is a wonderful opportunity for others to learn about Andrea and all she is doing through Reece's Rainbow--and to get the word out about the plight of orphans with special needs in Eastern Europe. Please check it out!

A Birth Story

I stumbled upon a birth story that may quite possibly be the MOST beautiful thing I have ever read. I feel like I was a witness to this birth the way she so accurately and intimately describes it. Maybe it's because her story resonates so deeply with my own story.

Get ready to be completely moved by this....Nella Cordelia

Turning Two

How is it that my baby boy is 2 today?

What an amazing two years it has been. I love this little boy so much it hurts.

Happy Birthday Joaquin! We adore you.

Chills

This website I came across today just gave me the chills as I read his foreward. What an amazing project and an amazing man.

Check it out....I'm Down With You

A Little Girl Named Sofia...

...has stolen our hearts and we are committed to bringing her home.

We're ADOPTING!!!

Please join us on our newest adventure and meet our little girl who will complete our family.

Saving Sofia

Four is the Magic Number

Here is your riddle for the day....

13 is 8 is 5, 5 is 4, 4 is 4 and 4 is the magic number. Why?
Hint: 6 is 3, 3 is 5, 5 is 4, 4 is 4, and 4 is the magic number.
Hint: 26 is 9, 9 is 4, 4 is 4, and 4 is the magic number.

Now what would this have to do with Three's a Charm?

Finding Home Away From Home

Awhile back we went to Disneyland with the kids and I remember posting how shocked and sad I was to report that I did not see one child with DS in all of Disney. I was shocked by that.

Well, I'm happy to report, I saw not one but THREE children with Down syndrome on our recent trip to Playa del Carmen, Mexico. All three were very "normal" and happy families and the kids were absolutely darling. Two of the kiddos were babies Joaquin's age or younger and one boy was about 9 or 10 years old traveling with his American family.

It was such a joy for me. Two out of the three families, I wasn't able to make a connection with as they were either passing by or busy doing their own thing. But one family in particular I was able to not only meet but really connect with.

I had the pleasure of meeting Iliana and her parents and we spent some good quality time together. Mom was Romanian and Dad was from Argentina. Their daughter Iliana was born in Romania but was flown quickly to Italy to have heart surgery when her diagnosis was made because, as Dad put it, there was "no way in hell they were going to have her surgery done in Romania." Iliana is now 15 months old and they have a new baby boy who is almost 3 months old who was born in Veracruz, Mexico where they live now.

We spent a lot of time talking about how amazing it is to have a child with DS and we also did a lot of comparing on the services provided for a child with DS in the States vs a child in Mexico or in Eastern Europe. Dad is an international engineer of sorts and moves every 2-3 years so they are really hoping to move to the States in the near future to take advantage of the services. Mom is a psychologist and also had such great and deep thoughts to share about the joy of raising her daughter. We had so much in common as I think all of us parents do when we have a child with DS. I just loved it. I loved meeting them, playing and visiting with their family and watching Joaquin and Iliana play together.

It was like finding home away from home. And I think we'll have these experiences more often than not for the rest of our lives. I really feel fortunate.

Xcaret

Xcaret is an eco park just outside of Playa del Carmen and it's such a cool place to go with the family...highlights were the bat cave, the floating river, the butterfly preserve, and the turtle preserve. It was our third visit there. We love it!

Here is another family photo on the giant hammock on the beach.

Beach Baby

The sun, surf and sand really agreed with Joaquin. I think it's safe to say he is a Beach Baby!