Saturday, June 21, 2008

Hearing Test

We had our third hearing test this week with the Audiologist. She did an ABR (auditory brainstem response test) that requires the baby be sleeping with different monitors taped on his forehead and behind his ears. We were in the office for over 3 1/2 hours. Joaquin did great and slept for most of it. I was so incredibly antsy by the end of the test since I had to have the baby laying on me the entire time and I couldn't move or make a noise so as not to wake him.

The bad news is.....he still has some mild to moderate hearing loss in both ears but mainly in the left ear. They determined that this is due to fluid in his middle ear. So although he can hear us, he hears us best when we are right near his face. He hears the rest of the sounds in the house as if he were underwater. The weird thing with fluid in the ears is that it can become thick with time so it is more like a paste and gets harder and harder to drain or evaporate normally from the ear.

The good news is....he has perfect hearing if they bypass the middle ear which means his hearing loss is treatable. So, we will discuss with the ENT doctor about how to eliminate the fluid in his ear at our next appointment in July. This is usually done with tubes but with little ears these are hard to place so they may recommend baby hearing aids until tubes can be placed so he doesn't miss out on any speech development. Also, we were told that Joaquin's ears are not the "typical" ears of a child with Down syndrome so the anatomy of his ears are "normal" and are to be treated this way by the ENT. Such good news.

I have every hope and confidence that his hearing issues will be resolved and I am so grateful for that. We'll keep you posted.

Friday, June 20, 2008

Hit by a Wave

Tonight I was hit by a wave of emotion.

I attended my first seminar sponsored by the Down Syndrome Information Alliance here in Sacramento. It was a presentation on Oral Motor Issues in Down Syndrome Children and it was presented by Lori Overland who is a speech pathologist in Connecticut.

I made a last minute decision to drive to North Sacramento to attend the conference even though Hector wasn't going to be able to make it. I didn't want to miss it so I packed all three boys in the van and we were on our way. I checked the boys into the childcare room that was provided free of charge, grabbed a few pieces of pizza that was also complimentary and sat down to wait for the lecture. A few people stopped to introduce themselves as I made my way to my seat.

And then it hit me. Tears began to well up in the corners of my eyes. I was overcome by a feeling of deep sadness. Waves of emotion were washing over me and I tried my hardest to keep it under control. A part of me felt safe surrounded by the mostly female audience and I thought I might be able to let it out knowing I would be supported. But then it passed, almost as quickly as it came and I felt my strength return. I could hear my dad's famous words in my head "shake it off"....words used to make the hurt go away, to will it away. I'm not sure if I was sad for myself or sad for Joaquin. Probably both. I think I was also hit by the reality of this new life of mine, one that includes seminars on how to help keep "one step ahead" of problems that may arise.

I think it was also a wave of reality. A part of me is still in denial that Joaquin may have hardships and challenges to overcome.

Thankfully the waves subsided and I was able to focus on the topic. The seminar was very good. Somewhere towards the middle of the talk, Joaquin was brought in to the room by one of the childcare providers. He was hungry and wanted to nurse, this was in turn met with many "oohs" and "aahs" as he was the only baby present. I had a few pertinent questions and the presenter made a point to come over to me after the talk to give recommendations on some exercises to do with Joaquin at this very young age to help with his oral motor control. Many of the mothers in attendance remarked that it was wonderful to see that I was breastfeeding Joaquin. A few mentioned that they were unable to do this with their own children and always regretted missing that experience. Many babies with DS have poor muscle tone which includes the muscles in their mouths. Overall there was a great feeling of warmth, understanding and support in the room.

Then it was time to gather up the rest of my gang. Diego and Mateo had a blast in the playroom, made a few new friends, and were happy to see me. They showered me with hugs and kisses and I took the time to soak it all up and didn't rush them as I often do. I felt strong again. We made our way back to the car, all of us buckled up and safe, and drove home.

Tuesday, June 17, 2008

Books, Books and More Books....

I can't get enough of them.

I just finished reading Jennifer Graf Groneberg's "Road Map to Holland: How I Found My Way Through My Son's First Two Years with Down Syndrome" and it was a beautiful book. I was so moved by her book that I emailed her and she responded back immediately. She even commented on our blog. So exciting! I feel like she is a friend just from reading her book and from her encouraging and congratulatory email.

I have also read and devoured "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives" edited by Kathryn Lynard Soper. This was an amazing read with 63 different stories and perspectives and I found myself laughing and crying, sometimes at the same time.

In addition to these lovely books, Hector and I are reading Glen Doman's books from the Institutes in preparation for our seminar next week and we are getting really excited about it. "How Smart is Your Baby" was eye opening and I wish I had read the book before I had Diego and Mateo, so many amazing facts and insights. "What to Do About Your Brain Injured Child" is remarkable and shows how dedicated Glen Doman is to bettering the lives of all children. I can't wait to meet the author and his staff next week.

We just received the book "Expecting Adam" by Martha Beck in the mail from a dear family friend, Jane, who also sent us "Gifts" and "Road Map to Holland"- thank you Jane! Martha Beck is a contributing author for "O" Magazine and has appeared on Oprah a few times. I read this book about 6 years ago, just before I had Diego, and it really struck a cord with me. I can't wait to read the book again with "new" eyes.

All these books have been a lifeline for me the past month and are part of the reason I am so happy, hopeful and proud to be mother of a child with Down syndrome. I truly believe that these books would be just as special to all mothers and I would recommend them to anyone who is mesmerized by motherhood or for moms who have lost touch with the joys of parenting and are looking to reconnect with the special gift of raising children, Down syndrome or not.

Here is another video that I fell in love with and just have to share with all of you that kind of sums up everything I got from reading my books...get your tissues ready!

Thursday, June 12, 2008

So You Think You Can Dance

Another post from Hector...

There have been a handful of people telling Jen and I about this boy with Down Syndrome that was on "So you think you can dance" a few weeks ago and I have been avoiding seeing it for one reason or another. Everyone knows I have a special place in my heart for people with DS, especially kids, they are so sweet and cute. But ever since Joaquin's diagnosis, it is a touchy subject for me. I know I am interested in knowing other people's experiences, but sometimes it is a hard reality that I am not fully comfortable with, not yet anyway. I had a lot of anxiety seeing Andres for the first time since we learned that Joaquin had DS . I love Andres dearly, but I knew I was going to see him with different eyes, like peaking into the future and I was afraid to do so. I am afraid still. I would love to be OK in that respect, but I can't help but still feel some anxiety and fear about the future.

Yesterday Jen was watching some videos on You Tube and she casually told me to watch the SYTYCD video. I did and I loved it. It was very sweet. I guess I was afraid someone was going to make fun of the boy or patronize him, but it was not like that at all.

I know that Joaquin is going to grow and do great things in his life, I can feel it in my heart. Someone told us that people with DS are born for a reason, that they have a special purpose in life. I believe it. We know that he can't wait to start talking because he has lots and lots of things to say, I can't wait...

Tuesday, June 10, 2008

The Institutes

A post from Hector....

When Andres was born, my sister Silvia and brother-in-law Carlos did what every parent in such a situation would do- they tried to learn as much as possible about what having a child with Down syndrome entails. Eighteen years ago, it was not as easy as today simply because the Internet was not around, so it all came down to whatever the doctors were telling them, or word of mouth since everyone knows someone who knows someone who has a child with DS. I remember at that time being so clueless as to what DS really meant. My only exposure to someone with DS was a boy named Pablito who hung out at the corner store near my house in Mexico City. All I remembered about him was that he was friendly but strange and I felt uneasy about it.

My sister found out about the Institutes when Andres was a few months old. Someone knew a girl who lived in Monterrey, Mexico, who was doing some kind of program from some Institutes in Philadelphia. They went to see her and were immediately hooked, they had found the answer to their prayers, a light of hope for Andres' future.

The Institutes for the Achievement of Human Potential is the official name and it was founded by Glenn Doman. The Institutes offer an intensive program for brain injured children and its objective is to achieve physical, intellectual, and social growth towards normality. There are several steps that must be taken to be considered for "The Intensive Treatment Program." First, both parents have to attend a 5 day intensive workshop called: "What to do about your brain injured child" which teaches parents about the field of child brain development. Jen and I will be attending this course in Philadelphia at the end of June. The second step is called "The Home Program Consultation", in which we would create a home program based on what we learned in the course. This home program is a requirement to be considered for the next step, "The Aspirant Program", that consists of a 2 day appointment at the Institutes where they do a thorough evaluation. Joaquin would then receive a specific program designed by the staff of The Institutes to achieve physical, intellectual, social and physiological wellness.

When Jen called to get information about the course in June, they offered us a chance to have the evaluation appointment immediately following the course since we live in California so we can minimize the flying back and forth to Philly. This was a huge surprise to me since I know that it took at least eight months for my sister to get an appointment for Andres. We are so lucky to be able to have Joaquin evaluated at such a young age and have them create a specific program for him based on his exact needs. They also made this exception because of our familiarity with the program, our enthusiasm and the fact that we had done some of the program very casually with Diego and Mateo after reading many of their books.

There have been a few people who have asked me why we think that Joaquin has a brain injury? Brain injury, according to the Institutes, is due to forces from outside the brain itself rather than to any inherent, preconceptual, built-in deficiency. A child with Down Syndrome has a malformation or abnormality of the brain on the basis of a genetic disorder. This brain-injury falls into the "Mentally Deficient" Brain-Injured Child, formerly called "mentally retarded". We now know that although the brain may appear structurally different, it will respond to stimulation and treatment. These children are candidates for a neurological treatment program, and that is why children with Down Syndrome do so well in this program.

We are very excited to have this opportunity to go to Philadelphia and learn more about how to help Joaquin, but especially to have him evaluated by the staff of the Institutes. I know the journey that Andres and his family took and that much of his success and how happy and fully functioning he is today is due to his involvement in this program. We are thrilled that we have all of his experience as a resource and a benchmark. Also, we are forever grateful to my brother David and my brother Sergio who are helping us financially to be able to do this since it is not covered by insurance.

We have started some of the exercises with Joaquin already. He is on his belly for most of the day (and he sleeps on his belly at night) and he was able to try out the "crawling track" while we were in Mexico (pictured above). We do a lot of different stimulation exercises and so far he is thriving and responding as he should. He is currently meeting all of his milestones for a baby at 4 months old which is remarkable. The only weakness we see so far is his neck control when held in a sitting position but we are starting to see some gains here as well. He LOVES to talk and babble and has even started to mimick some of the sounds that Jen makes. Any hearing loss he may have due to fluid in his ears has not hindered his speech development. It's all very exciting. We will definitely keep you all posted on all of his progress.

Sunday, June 8, 2008

Band of Brothers

The very first thing Diego does when he gets up in the morning..every single morning... bright eyed and bouncing down the hall, is to come searching for Joaquin who is usually in bed with us by this time and he covers him with kisses and hugs. Mateo usually comes stumbling in after, the sleep still in his eyes as he is more of an "ease into the day" type of guy, and looks for the baby so he can greet him as well. "Mama's Little Baby" he calls him, even though I try to convince him he's still my baby too. "No" he always says, "I'm the brother!" These two big boys of mine can't get enough of the baby and literally have their hands all over him.

I wonder what it must be like to be Joaquin and to have all these faces each and every morning to look at, these adoring faces that can't get enough of his smile and his cooing and squeals. He is so lucky to have two older brothers.

We've started to try to explain to Diego that his brother has Down syndrome. Diego is 5 and going to Kindergarten in the Fall. This is a hard thing to explain to a child but so far Diego is unfazed by it. It's just another piece of information about his brother that doesn't change a thing about the way he feels about him. His response so far has been "Ok mom!", as if I just told him that his brother has brown hair and blue eyes. I love this age of innocence and acceptance. I know that this won't always be the case and that there may be prejudices that he and Mateo will be exposed to in everyday life. But I also know that both boys will grow up with a strong sense of compassion that is often hard to teach children but will come from having a brother with Down syndrome. I've spoken to friends who have siblings with special needs and they all say without a doubt that it has made them a better human being. A few days after Joaquin's diagnosis, Santiago, Hector's nephew who is 13, called to see how we were doing. He was very sweet and in a shy way tried to tell Hector that everything will be OK. He said that if given the choice of his brother Andres being "normal" or with DS, he would choose Andres with DS every time.

My hope is that this band of brothers stays strong. I know Hector and I have a big job ahead of us, a huge responsibility to teach them all how to get along, love each other and respect each others differences. I don't know what the future holds for Joaquin but then again I don't know what the future holds for Diego or Mateo. I have to remind myself when I get worried about the road ahead of us that just because we know that Joaquin has an extra chromosome doesn't mean we know the rest of his life story or that his life will be somewhat predictable because of it. My hope is that all three boys have every opportunity to reach their dreams, their aspirations and their full potential which will undoubtedly lead to their happiness.

In the far distant future, there may come a time when either Diego or Mateo will have to care for Joaquin, when and if we aren't able to, and my dream is that they will want to, not out of obligation but because they love him so dearly as they do now....every single morning.

Monday, June 2, 2008

Such a Blessing

I feel like it was a blessing I didn't know Joaquin had Down syndrome until just recently.

I opted not to do the AFP screen in my first trimester when it was offered. I just didn't feel inclined to do it. I remember thinking that I didn't want to have to deal with the stress involved with getting a positive result, or a false positive result...or a false negative result. So I just declined it. I did agree to genetic counseling and I did do an early 9 week ultrasound and another more in depth ultrasound at 20 weeks. The ultrasound showed us a healthy baby boy that was growing on time, had a strong beating heart and all his appropriate parts. No cause for alarm.

I declined the amniocentesis even though it was recommended by my doctor. I was 36 when I got pregnant and would be 37 when the baby was born which put me at a higher risk for having a baby with a birth defect. If I had gone through with the test, I would have been bombarded with information about all the negative aspects of Trisomy 21, the health scares, the worry, the stress, the sadness, and the option to terminate the pregnancy based on the diagnosis. I'm not sure I would have been told about the joy, the gift and the beauty of my imperfect child. 

It's a blessing I got to spend my pregnancy without any stress other than the normal stress that comes along with the third trimester, like how much more weight will I gain, what should we name him, is the nursery ready, do I have enough burp cloths? Because I didn't know about Joaquin's diagnosis, I was able to have an uneventful delivery (albeit a speedy one!!) with the normal joys, pains and anticipations that come with giving birth to a baby and I was able to have the normal, special bonding time with my newborn. Those special moments in the middle of the night just the two of us getting to know one another. I was able to marvel at his beauty and perfection without doctors or nurses coming in to tell me otherwise or to point out the physical markers or "imperfections" or to hear what may or may not be wrong with him. He wasn't whisked away to spend hours in the NICU for observation or tests, he was able to stay by my side, right where he was supposed to be.

It's a blessing that even though I had that first instinct about Joaquin, that no one "saw" anything so I was able to have a positive hospital experience and about 2 1/2 months of time to love and connect with my newborn son without any labels or worries or sadness. I can honestly say that despite the unusual circumstances around how we found out about Joaquin that I wouldn't have had it any other way.

It's a blessing that everything happened just the way it was exactly as it should have been. We see Joaquin for who he is, not what he has. He is our third amazing, beautiful son. We are so blessed.