Ocular Motor Apraxia Research by UW

A couple weeks ago I received an email from a person who came across my blog, who has a child with OMA and happens to live near where I live. Actually, our kids have even visited the same doctors! The email exchange has been really helpful to me so far, as the woman was kind enough to let me know about a facebook group for people with Ocular Motor Apraxia, and mentioned to me a research on Joubert Syndrome that she is participating on.

The Hindbrain Malformation Research Program, is performed by the Department of Pediatrics in the University of Washington, and they are currently receiving cases from people to examine. As I mentioned in one of my earlier posts, Patrick was originally diagnosed with Joubert Syndrome by his Pediatric Neuro-Ophthalmologist, but after the MRI was performed, the Neurologist ruled out Joubert Syndrome. This study goes beyond cases of JS, reaching to brain malformations like in the Cerebellar Vermis, so I have contacted UW about Patrick. They are requesting his MRI from Children's Hospital and after reviewing it, they will let me know if Patrick qualifies to participate in the Research.

I believe I have mentioned a few times before how fascinated I'm about the brain and the way it works, so anything, anything they are able to tell me after reviewing Patrick's MRI I know it will be so helpful I can hardly wait. This also means that if Patrick is found eligible, we will be contributing in the research, helping doctors to get closer to the answers people like us have been asking for a very long time.

If your child or you have OMA, or have had an MRI performed, with the results indicating any type of brain malformation, I encourage you to contact UW about participating in the research. One of the most frustrating things about Patrick's condition is that there is so little information about it. OMA is a rare disorder, there aren't many people out there with OMA, and so not much research has been performed. But OMA exists and there are thousands of people in the planet trying to find answers to their many questions. If this research can help to answer even a couple of those questions, I say it will be already worth it. But this research can't be done without your help.

My communication with UW has been very smooth so far, and they are very prompt to respond, so at the very least, I encourage you to contact them if you would like to find out more about the research. I will keep everyone posted about Patrick's eligibility and what UW tells me. Let me know if you participate!

Loving our special children

I have mentioned a few times how I'm so glad that Patrick's developmental delays aren't severe, how glad I'm that he doesn't have Joubert Syndrome (a common thing in kids with OMA) and how glad I'm that most of his current health issues will disappear or at least diminish as he grows. I know that many of you who come across my blog, have children with Joubert syndrome, or with severe development delays, or with a health condition that won't get better after awhile, and that, perhaps, may get worse. Please know that by saying that I'm glad that Patrick isn't in that situation, your situation, I'm not trying to say you are in a bad situation. I'm not saying that I feel sorry for you and that you should feel sorry for your child and for you. Not at all.

I do have a child, Robert, who is healthy. He doesn't have any of Patrick's medical conditions. Knowing that Robert is healthy makes me so happy I feel like celebrating. It excites me beyond words to see him developing like most babies. I giddy when he learns a new trick very quick and on his own, like crawling, pulling up, giving steps with support. I'm a proud mamma when I see he is even ahead in the game compared to other babies his age. But, does Robert's healthy development make me feel sorry for Patrick? Does this mean I love Patrick any less? Does this mean, that I'm not proud of him? Do I have to live frustrated about his condition? Are we in a bad situation because of Patrick? Should I regret having him? Not at all. I love Patrick with all my heart. I would give my life for this kid if I had to. He is my favorite toddler in the world, and I can't believe I'm this lucky and blessed to be his mother. He brights my days, just like his brother. Just like his brother. He is my son, just like his brother. And that's all what matters to me.

And I know that's all what matters to you, too. I know you love your child dearly regardless of how he was born, because he is your son. I know, too, that as long as you love your child, there will always be a worse possible condition, for which you are thankful you are not in. You see, I love Robbie and I feel blessed to know that he is not in Patrick's condition. And you know what? I love Patrick, too, and I feel blessed (yes, blessed), that he has Ocular Motor Apraxia, without having Joubert Syndrome. I'm sure you love your son, and so you feel blessed that he has Joubert Syndrome, and not cancer, right? I thought so. You love your daughter, and despite of having cancer, you feel blessed that she is still fighting for her life. You love your son, that may now be death, but feel blessed that you got to have him once with you. Because having a child, regardless of how terrible his health condition is or was, will always be better, than to never have had him at all.

If you are a parent, then you know that you are in the best situation possible, and that's to be the parent of your child. Even if you were blessed to feel him only in your womb for a few months, you have experienced motherhood, and that's wonderful. God blessed you by letting you carry one of his special creations. God trusted you to be a father to one of his little angels. You are in the best situation. Regardless of what you suffer now, regardless of your struggles and your fears... no illness can out-weight the blessing of having someone to call your child. And along these lines, there is a powerful story that was featured on ESPN last year and that regained popularity on social media recently: Heath White, was a successful man whose life turned upside down after finding out that his wife was expecting a baby with Down Syndrome. He asked his wife to have an abortion, but she refused, thankfully. Weeks after the baby is born, Paisley touched his father's heart, making him change from being a truly egocentric person, to a loving, caring and proud father. You can learn more about their beautiful story here.

Sometimes I wish Patrick didn't have OMA, like I'm sure you wish your child didn't have Joubert Syndrome, or Down Syndrome, or Cerebral Palsy. These health conditions should happen to bad people, not little innocent babies. There are times when we wish they had been born perfectly healthy, there are other times when we accept they are sick, but wish they got cured already. And that's OK. Just make sure that the times that abound are the ones when we value the better person we have become, because their special needs were craving for that better person.

Had my son been born a perfectly healthy child, I would have never learned to treasure his sibling's first steps as much as I do. Had my son been born a perfectly healthy child, I would have never tested my strength, my patience, my perseverance, in the way I have. Had my son been born a perfectly healthy child, I would have continued to be a religious woman, without knowing what truly means to have faith in God. Had my son been born a perfectly healthy child, I would have never met all the special mothers, and wonderful therapist and friends I have made thanks to his condition. Had my son been born a perfectly healthy child, I would have never started a blog, with the only purpose of helping someone I don't even know. Had my son been born a perfectly healthy child, he wouldn't be him, and that would be a shame.

Antibiotics during pregnancy: Cause of Patrick's health issues?

Last year, I wrote a post titled Could I have prevented Patrick's health issues?  The conclusion was that I couldn't have. Fast forward to today, there is a chance that I could have prevented Patrick's health issues after all.

A few months ago, I came across an article that talked about speech delay, something we have been dealing with in the past months. The article talked about a study performed to find out how antibiotics affected children while in the womb. The fact is, I have read in MANY places how antibiotics during pregnancy could cause most of the health issues that Patrick currently has, but I really didn't pay much attention to any of that simply because I didn't take antibiotics during my pregnancy. This time, however, in the study performed, women who took antibiotics up to one month before conception where considered as "having taken antibiotics during pregnancy".

I took antibiotics within one month before Patrick's conception.

On February of 2010 I got sick with a bad cold. It was a Saturday when I was feeling the worst so my husband took me to an Urgent Care. It turned out I had pneumonia. The doctor wrote a prescription for an antibiotic and sent me home. The medicine was making me feel very nauseous and sleepy but after a few days I started to feel better. I made an appointment with a family care physician anyway, whom I saw the following Monday and who has become our family physician ever since.

Couple months after the incident, I found out I was expecting my first child. I was (and am) completely sure that I didn't take the medicine while being pregnant so I knew Patrick couldn't possibly be affected by it. That's what I had believed all along up until the day I read the article. To read that women who took antibiotics up to one month before conception were considered at risk gave me the chills. Patrick was believed to be past his due date when I was induced, but once he was born, the doctor said that he was actually born two to three weeks early. So we don't know for sure how many days are from the last dose of antibiotics to his conception day. It may be slightly over one month, or it could be couple weeks.

 Also, I recall that when I saw the family physician, she said she didn't understand why the doctor at the urgent care had given me that particular antibiotic, because it was so strong that the symptoms are awful, and so she didn't like to prescribe them. So there is a possibility that with the medicine being so strong, it could have taken longer for my system to finally be antibiotic-free. This makes me so angry and sad, because regardless of whether Patrick was affected by it or not, to know that antibiotics could potentially harm babies that are still to be conceived makes me wonder why doctors don't have the courtesy to tell you so. They sure tell you to not take certain medicines if you are pregnant or breastfeeding, but they won't tell you to wait at least a month or two after the last dose to get pregnant, specially with drugs that could potentially harm the baby in the womb.

I guess I will never know for sure whether or not taking antibiotics before conceiving Patrick was the cause of his health issues, and while some may think there is not point on worrying about "what if", I thought it was important to write this to make women aware of the dangers of antibiotics during pregnancy, even if you aren't pregnant just yet.

I would have never guessed it!

A few months ago, a friend from college came to USA on a tour that included New York and Washington, DC. Since I moved to this country 7 years ago, I rarely get to see friends from my hometown or from college, so I was super excited to see her while she was in town. We were able to spend almost a whole day together. We took her to see the monuments (my husband loves giving a monument tour to friends and family), I brought her to my house and we had lunch nearby, and we also enjoyed a stroll with the kids in a wonderful evening in Washington, DC. It was so much fun to see an old friend, but it was also a very comforting visit, here is why:

We studied Communications together, we were in the same class for 4 years. Anyone you ask, they will tell you she was one of the smartest girls in the class. She had briefly lived in United States, so she speaks both English and Spanish. She lost her mother at a young age, but if anything, it gives the impression that such experience made her acquire a "motherly" attitude towards her friends: always looking out for everyone, and always willing to give you a hand. She is a good speaker. Never afraid to stand in front of an audience and talk, and she always has something to say, as she is a very well informed woman. She loves to travel around the world, and enjoys her current job as wedding planner at the Palace Resort in Cancun, Mexico. I was very impressed to hear the jobs she has held since she left college, and overall I could say she is having a very successful and happy life.

She asked me if I was planning on teaching my kids both English and Spanish, to what I said yes, and I added about how we put a temporary hold on Patrick, because he has speech delay, so I'm mostly interested in getting him to say basic things in our home's primary language (English). Then she said the words I never imagine I would hear from her: I had speech delay when I was a kid.

Then she went on to telling me about her numerous speech therapies and occupational therapies, all the medical appointments, the things she couldn't do as a child, her fine motor skills issues, her development delays... and all her challenges. The more she talked, the more I could relate -or Patrick, for that matter. She was familiar with all the things I told her about him, and I just couldn't believe she was telling me she went through all that herself. She, the girl that has absolutely no problem giving a public speech (and is good at it), the girl who is successful in her Public Relations job providing costumer service in an international arena.

She gave me so much hope. I would have never guessed it. How's it possible that she had so much trouble (medically speaking) growing up when she was a child, but now there is no resemble of it? What developmental delays? I could easily joke (not really) that she was actually way ahead than most in my class. She looks and is perfectly healthy now.

One day, my little boy will be a grown up man, and will tell a friend about his developmental delays and the medical issues he had as a child, and the friend he is talking to, will look straight at him, with a sincere surprised expression in his face and say: I would have never guessed it! I know in my heart this will be possible one day. At moments I felt like I was kind of hoping too much for Patrick and therefore expecting too much from him, but she overcame her obstacles, and the end results are priceless and flawless. Now, more than ever, I'm determined to help Patrick overcome his very own obstacles, because thanks to God they are temporary.

Cheers to you, my dear friend!

Preschool Update

Patrick has been in school for one month, so I figured it was time to give an update.

The basics:

• Patrick attends school Mondays from 9:00-11:30 am, and Tuesday-Friday from 9:00-12:15 pm.
• The bus picks him up around 8:35 am, in front of my house. Only preschool children are in it, and there are 2 adults (the driver and another lady that makes sure the kids are behaving). On Mondays, he gets dropped off around noon, and T-F, around 12:50 pm.
• He eats one snack everyday, and T-F he also gets lunch.
• There are 7 children in his special class, including him, and all are around 3 years of age. They are attending from various reasons, ranging from a few developmental delays (like Patrick), to other medical issues like Down Syndrome.
• The school is only couple miles from my house, and is part of Fairfax County Public School.
• The teacher and the parents have a communication system in which we use a notebook to write any notes, questions or concerns. Patrick is the transporter taking the notebook from school to home and back the next day.

 The cons:

• It was painful to say good-bye the first day. And the second and third. I could tell he had been crying at school, so that was making me sad as well. 
• Patrick is coming home really hungry, which tells me he is not eating his lunch. As you may know, nutrition is something we have been dealing with, so it's very important that he eats well during the day!
• He takes a quick nap in the bus on the way home, which means he doesn't want to take a nap in the house anymore! 
• The first couple of weeks, his behavior had changed for the worst. He would come home and try to hit his brother, be extremely loud, messy... luckily it seems to had been just a phase, that hopefully won't comeback.
• The worst part is, I can't see what he is doing at school!! I would love to see how he is behaving, how he interacts with his teacher and friends, what arts and crafts he is doing, how he plays, what he learns... I'm not asking to be there everyday, but I would love to sneak in just once, to see him in his new environment. 

The pros:

• He is saying more words!!! The best part is, he is pronouncing some words better. Remember how he would say "na" for Sam, and "ni" for Tim? Well, after a week of being in school, he started saying Sam and Tim perfectly!! There is still no conversation, and is still complicated for anyone who is not mommy and daddy to understand him, but, I'm seeing the biggest and fastest improvement ever.
• There is a speech therapist, a physical therapist and an occupational therapist evaluating the kids and making suggestions for parents and teachers. Patrick actually receives a one-on-one session with the PT once a week. 
• While Patrick is in school, I get mommy and baby time. I want to make sure I give Robbie his very own time, just like Patrick had it when he was the only child. Patrick loves being around baby and me, so unless he is sleeping, I can't enjoy cuddling and playing just with Robbie, at Robbie's pace. I have to say, Robbie misses him a little.

• I can get more things done around the house, and outside the house! It's easier doing groceries and running errands with one baby than with a baby AND a toddler! I know, mothers of 2+ children do it, but I'm still practicing!!
• Before he started school, we would do some arts and crafts, or specific activities that would improve his fine motor skills. Now that he is in school, he gets to do that in school AND at home. Loads of practice!!
• He is learning new things, faster. He is now starting to count, is coloring better, likes dancing and gesturing to kids tunes, and is doing all the things I tried to teach him but that he wasn't much into it. I guess that now that he does these things with a group of little people just like him, it's a lot more fun and so he wants to do it, too!

• Patrick is interacting everyday with children with special needs. This means that his first school friends are children that are often marginalized, stigmatized and bullied by other children. But these children will be Patrick's friends, he will learn to love them, care for them and realize that the true value of one person is not in the things you can or can't do, but in your soul. We can tell and teach our kids that, but he is living it, everyday. He is witnessing first hand!
• At first I thought that by being in a classroom with children significantly behind in their developments, would make Patrick's development slow down or at least not improve as fast as if he was interacting with kids that are ahead of him. As much as I want Patrick to be inspired by other kids and get motivated to do more things, I think is also a blessing if Patrick could be the one inspiring those kids and motivating them to walk, talk, color, sing and dance!
• Best part is, he loves going to school. He wakes up every morning (even over the weekends!) so excited to get ready and take the "bu" (bus) to go to "coo" (school). 

Hands down, I recommend that children with special needs are enrolled in activities that stimulate their imagination and willingness to do things. There are only so many activities a week I could enroll Patrick in, mostly because specialized education is expensive and rarely covered by insurances. So I'm glad we are able to receive these services from the County at no cost (well, our taxes are paying for it!) 

I have some issues with the school system the way it is and where is heading, that I'm even considering homeschooling my children, for some of their school years (when they are not attending Catholic School). I will talk more about this later, but I can say right now that the 3 hours a day he spends interacting with children, receiving specialized attention and direction for his special needs, will go a long way in improving his developmental delays and making the difference that I can't provide at home by myself. I strongly recommend it!

Overcoming Behavior Issues: Speech Delay

Patrick began babbling and saying "dadada," "mamama" and the usual cooing, around the same time other babies his age started. Before our kids were born, his dad and I decided that I would teach our kids Spanish and he would teach them English, and as Patrick was growing, I started to teach him a few words in Spanish. I had read somewhere that kids from bilingual homes usually are a little late on talking, so I guess I kind of expected all along that he would be a late talker. Late talker as in talking a few months after the average child.

Patrick, as of today, has the vocal skills of an average 18-20 month old baby. Patrick is 3 months short of being 3 years old. That's too "late" for what I had anticipated. While talking comes and develops naturally for most children, for other children, like Patrick, it doesn't.

I think it was until he was a little over one and a half years old, that I realized that his severe speech delay was looking like a real possibility. By then, we were all aware of his Oculomotor Apraxia and hypotonia, and the more I learned about his developmental delays, the more I realized "speech delay" was part of the bundle. When Patrick was 2 years old, his vocabulary was limited to mommy, daddy, babba (bottle), and to the sign language for the word "more." In the video below, Patrick is shy of 2 years of age.

As Patrick was growing, his frustration for his inability to talk was growing as well. The older he was getting, the more he was understanding, questioning, doing, and desiring. But he couldn't express any of that. I can only imagine how helpless one can feel in a situation like that. This was the reason number one to his screaming. You know how babies cry when are cold, scared, hungry, sleepy, thirsty, uncomfortable...? Well, Patrick, as the toddler he was, had turned that cry for a scream. He was tired? Scream. He was thirsty? Scream. He wanted to play? Scream. He didn't want something? Scream. He wanted something? Scream. Scream. Scream. Scream. The constant screaming would make me upset, which would then make him even more upset, and it would turn into a vicious circle from which I couldn't figure out how to get us out.

About five months ago, Patrick's vocabulary was limited to 6-8 word approximations, which made his therapists suggest to add more words in sign language to ease that frustration. So Patrick learned the sign language for more, I'm done/I don't want, and please. Ball. Ball. Ball. Ball. Ball. Ball... I had to repeat it dozens of times a day, while we were playing with the ball, until one day, there was finally a "ba." And that's what we had to do with many other words. Today, Patrick has about 40-50 words, most of them being mere approximations (nani = night night, tide = outside or inside, memi = Mary, nana = grandma or banana, didi = Jesus, na = Sam, pun = spoon, bapi = Patrick, pi = please...)

We had to teach him to point at things, too, to make it easier for us to know what he was talking about. Thankfully, he had finally learned to walk, so we taught him to hold our hands and take us to wherever was what he wanted (if he wanted to drink something, he would take us to the kitchen; if he wanted to go out, he would take us to the door, for example). He moved from twice a month therapies, to three times a month. Also, I attribute the improvement on his speech to the Omega 3s and the changes made in his nutrition that I talked about a few weeks ago.

Many children these days are late talkers, and I believe there shouldn't be any pressure on making them talk when they are not ready. However, Patrick was ready, he just didn't know how to. How do I know he was ready? Simple: It was affecting his daily life.  His very own self was ready to communicate, but his mouth couldn't do it, making him upset and turning aggressive towards others. I can tell that when we let him know that we understand what he is trying to tell us, it is easier for him to accept a "not right now" if it is something that he wants and we can't provide at the moment. He is more involved in making decisions of what he wants to eat or what he wants to do, letting us know when he has had enough of something... and all these moments go by without meltdowns. The screaming, throwing and hitting are very rare these days, and I'm so happy to have my happy Patrick again.

Speech (or lack of) wasn't only affecting his mood and behavior, but was affecting his learning progress as well. Let me share a fond memory from my Epistemology course when I was in college: We were asked to read a children's book called Pixie, by Matthew Lipman. The book is about a girl who, among other things, asks too many questions.  The funny thing is, that after the class read the book, I was dubbed Pixie (and I was called that for the rest of my college years!) because they said I asked way too many questions. Ha! Of all the numerous books I read during my school years, I think is a marvelous coincidence that this particular one is to this day stuck in my head, perhaps thanks to the nickname I got. But whatever the reason, the fact is that Patrick's new difficult behavior was making me think a lot about Pixie.

Pixie inquires into the connection between language and things in the world, which give meanings to everything in our daily experiences. In other words, Pixie is meant to show us how a child makes sense of the world as she learns new words. Children like Patrick, who find it difficult to express themselves verbally, will have problems learning things because of their inability to refer to them. Whether is with word approximations, sounds, sign language or pointing at objects, we taught Patrick how to refer to things (objects, emotions, people...) and ever since, he seems to be learning a great deal of things at a faster speed as he ever did.

Everyone keeps telling us that he will talk more once he starts school. I do believe this because the very first words Patrick said were during a trip we made to Mexico. My family is very talkative, and there are always a lot of children around, so there was non-stop talking all day long when we were down there, which I think got Patrick motivated. He is still unable to put two words together, however, I think it's emerging now. Couple weeks ago, he spent a few days with his very bright and talkative friend Jackie (happy 3rd Birthday, Jacqueline!) and ever since that visit, he has been making an effort to put two words together: "acusacu bobo" which means: __________ Lobo (something about our dog). Couple days ago I brought an Elmo toy into the room where he was playing, and as he saw me he said "momo, si" (Elmo, sit), as he was pointing at the floor where he was sitting.

Jackie and Patrick playing baseball

Jackie and Patrick watching the Gorilla at the Zoo

Awhile back I was anxiously awaiting for the day when I would finally hear from Patrick "I love you, mommy." I'm not anymore. I know he loves me. What I don't know is what's his favorite animal, what he wants for dinner tonight, what he wants to be when he grows, what makes him sad the most, what he thinks of his little brother. When the day comes that he talks, God knows I will let my old "Pixie" get the best of me, and will ask him a universe of questions, because I know there is so much in that brain and in that heart of my little boy, that I just can't wait to know all about him!