Saturday, September 20, 2008

"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 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...

Tuesday, September 9, 2008

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....

Saturday, September 6, 2008

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!

Wednesday, September 3, 2008

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.