Patrick's little brother will be here anytime!

My pregnancy with Patrick was overall good, and as lucky as I could consider myself with that pregnancy, this one has been even better! Both pregnancies have been different from each other, not crazy different, but definitely not the same. I think this baby moves more than Patrick ever did (which isn't so great when you are trying to sleep) but he doesn't get hiccups as Patrick did. With Patrick I had nausea 2+ months, but with this baby I only had nausea 3 days, literally. I feel like baby was telling me "hey, I'm here, you are pregnant!" because once I took the pregnancy test at the third day, the nausea disappeared.

November 2012 Recap

Patrick's Birthday Party:

Patrick's birthday is November 24th, which means every year it will fall on Thanksgiving day or close enough. Which means the poor little thing can't have a party on his birthday, so we celebrated Patrick's birthday party the weekend before (17th) at the same place we did last year. It's a Mexican Restaurant near our house that has good food and great service. We had lunch and cake at a private area, and the owner was kind enough to even let us break a pinata, Yay! I love the idea of having pinatas at my children's parties, and I was thrilled that Patrick loved it so much this year! He even cried when his turn was over, so he ended up having like 3 turns. Here is a video of that.

Aside from the cake, he gets a special cupcake just for him. This is the second year... I guess we have started a tradition in our family!

Below, the cupcake from last year... he has grown so much!

Here are a few pics of the party:

Once at home, he didn't care much to open presents, but his friends Jackie and Charlotte couldn't wait to find out what toys he received, so they helped out.

Of course Patrick loved his gifts once they were out of the boxes.

A weekend with friends:

Jackie and Charlotte's parents live in NJ, so we don't get to see them as frequently as we would like, but when we do, we have a great time. They came to celebrate Patrick's party and it was great for the kids to spend time together. But not only the kids had fun, the dads went to play some golf (and have a few drinks) while the moms watched the kids. When the dads were back, the moms went out to have a nice dinner, while the dads watched the kids and put them to sleep. It was nice to go out without the kids (and husbands), although somehow our chat was mostly about them hehe.

Here are few pictures of the kiddos since they were babies.

Charlotte has now a 4 month old baby brother, Patrick will have a baby brother any day now, and Jackie will have a baby brother or sister in April. We will have a new set of pictures then!

Patrick's actual 2nd Birthday and grandparents visit.

Patrick's grandparents live in Indiana, so we don't get to see them much. This is the 3rd year, however, that Thanksgiving is celebrated at our house with them (we have to thank Patrick for this!) They were here almost a week. Patrick was very shy the first day but he was fine by the next one.

Everyone had good reasons to be tired enough to cook Thanksgiving dinner (I was almost 9 mos pregnant, Tim had been traveling for work and the grandparents had just arrived) so we went out to eat. As a matter of fact, we went out to eat a lot when they were here, many good places around here!

For Patrick's birthday we had a chocolate cake and we were out shopping. Also, we broke the news to them that Patrick's little brother will be named after the grandpas.

Good morning! I'm 2 today!!

Grandma makes the best cookies ever. Patrick had the cookies for first time and he liked them so much that in one of those moments when nobody was watching him, he climbed on to the dining room table to eat some more!

I'm the cookie monster!

The grandparents enjoyed a tour of Mt. Vernon. Totally worth the visit if you are ever in this area!

And they also helped us put the Christmas tree up!

What's new with Patrick?

Patrick had his 2 year appointment with the Pediatrician. He weights now 24lbs, and he is 34 1/2 inches tall. Surprisingly he was scared of the doctor this time. He also doesn't want to be checked because he doesn't want to stay put for more than 2 seconds. He just wants to be out and about all the time. He can climb on anything now -as you could judge by the cookies photo.  Considering the things he does now, I can't believe it's been only 2 months since he learned to walk. He has tried to escape from the house a couple of times, and is constantly trying to run away from me at public places.

Escaping from the house - Wish I had taped from 

the very moment he opened the storm door and got out!

His dad has been working on house projects, and Patrick is enjoying "helping". It is just too cute to see him spending long periods of time trying to help Tim. One day daddy went to the attic, and Patrick dared to follow behind. Tim had to ask for help and when I came I saw Patrick climbing the ladder half way up to the attic. As I approached, he reached the top. We have no picture of this, please understand it was a very scary, dangerous and crazy moment - no time to look for the camera! He is very curious, and too brave... a little too much I would say. Funny how he is so scared of the doctor but not so much to climb on a tall ladder!

Could I have prevented Patrick's health issues?

My husband and I had been married for a year and a half when we found out we were pregnant. I told him the news on his 30th birthday and we couldn't be happier.

When I had my first OB visit, I was asked to fill out a form that had specific questions about my lifestyle and background. Do you smoke? Do you drink? Do you exercise? What's your race? Marital Status? Age? Number of Pregnancies? Miscarriages? And then a long list of illnesses to which I had to write whether we or any member of our families ever had.

Raising a child with a disability

Is Patrick a "special needs" child or a child with a disability?

I truly don't know. I guess I could say he has a disability in the eyes, because he can't follow well fast moving objects. I guess I could say he has a disadvantage in his muscles, because they are not as strong as other kids'. I guess I could say he is a special needs child, because, well, he requires some things that other kids don't, like AFO's, and therapies, and constant evaluations and so forth.

But then it just doesn't feel right to compare my son to a child that has some type of syndrome, or severe physical, cognitive, or developmental delay. It's not fair to the other moms of these children to compare what I have to go through to what they have to go through. You see, I have it easy compared to them. And Patrick has it easy compared to those children. He gets to take physical therapies, but just to strengthen his muscles, because he can do physical stuff. And he takes speech therapies, but just to get him up to speed, because he can talk. He needs AFO's for his feet, but just to give him support, because he can walk (and AFOs are like getting orthodontic braces, really) And he has this rare disorder called Oculomotor Apraxia, but, you know, he isn't blind.

So if Patrick falls into a special category, I don't know which one would be the appropriate one. In the meantime, I wanted to share this beautiful explanation I read some time ago of what is to have a child with a disability:

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

The importance of play dates and outings

I joined the mom's group at my Church right around the time we found out about Patrick's Oculomotor Apraxia. They have weekly meetings, but after the holidays, Patrick began to take his physical therapies, which were set for the same day (and time) that the moms met, so I was able to attend only twice a month.

But then it wasn't fun to attend.

Patrick couldn't play with the other kids. He was too scared of them. Imagine a room with 10+ kids running around, being loud and playing with several toys moving from place to place, at a fast speed while the only thing that Patrick could do was to sit next to me and play with whatever I placed within his reach.

One day the moms suggested we should meet at the RECenter. Unfortunately they met on a day that Patrick had physical therapy so I couldn't attend, but I told my husband we should take him that weekend. I was so excited about that outing because they have a spraygound and Patrick loves playing with water so much.

But then it wasn't fun to be there.

All the kids were walking around, but mine couldn't. As soon as I sat him in one spot, he didn't move. He seemed happy to play with the water, but I wasn't. I wanted him to chase other kids, to move from spot to spot and enjoy all what the sprayground had to offer. I left him there for few minutes and then I tried to move him to a different spot, but he misunderstood that with "time to leave" so he started to scream and cry, so I left him there. And he stayed there all the time, ALL the time.

Patrick's very own spot at the sprayground. 

One day, Patrick's physical therapist said Patrick needed to go to the park often. I wasn't used to taking him to the park. The thing is, Patrick had been in a few parks before, when he was younger, we took him a few times and we put him in the swing. Once he got older, old enough to run around the park, we took him again.

But then we didn't enjoy the park.

He was old enough to run around, but he wasn't running. Or walking. Or climbing on anything. Or even standing. So we bought him a swing. And a slide. He was able to have a tiny park at home, that he could enjoy at his own peace. Taking him to public places where other kids his age were doing things he couldn't do wasn't fun for me, because I figured it had to be frustrating for him to see the other kids doing things he couldn't do.

The swing at home

Slide at home. We had to placed him there.

Was it always going to be like that? What if he could never walk? How could I comfort him every time he wanted, desired, wished, to do something, but he just couldn't, while the other kids could and would? Were other kids going to make fun of him? How could I protect him from them? What would happen when he would become completely aware of his limitations and disabilities? Would he cry, too?

But the therapist insisted.

And so I had to suck it up and had to keep taking him to the moms group. And to the sprayground. And to the park.

And she was right.

Soon after, Patrick began to improve his muscle tone, and it happened fast. Being around other kids made him want to do things, so his muscles kept getting stronger as he tried to do new things. He was imitatating other kids, and it was wonderful. Eventually he stopped crying at the moms group. Eventually he started climbing on the slide. Eventually he started to walk around the sprayground. The more Patrick was spending time with other kids, the more he started to improve.

Patrick wanted to be out there and he needed to be there, with other kids, so he could socialize, and learn, and imitate, and explore, and play... and be happy! Just like the other kids were. My boy just needed exposure and time. Time to learn from the other kids and time to practice.

Patrick at the Sprayground having some fun.

  

Patrick saw another kid doing this earlier, so he did it too!

  

At the moms group. Not scared of any kids anymore!

Climbing, climbing, climbing. Yes! He loves the park!

And that's the importance of play dates and outings.

October 2012 recap

I'm trying to use this Blog to talk mostly about Hypotonia and Oculomotor Apraxia. However, I understand that some of my readers are just friends and family members that don't have a child with any of those conditions, but that occasionally read the blog just to see what is Patrick (and the family) up to. So I have decided to start writing a "recap" with the highlights of each month. Here is what happened in October:

Hypotonia = Happiness?

Patrick is happy like most (if not all) the kids I personally know, so nothing to be amazed about it here. He didn't enjoy much to be around toddlers, but he would get along very well with people that were on his same speed. I think most parents get to hear from other people that our children are "good", "smart", "cute", "big", and "happy" kids. But I not only get to hear that about Patrick, but also, people constantly comment with amusement, about his very own personality, stating they haven't met a kid so "content, laid back, warm, smiley, sweet and easy going" as Patrick is.

Patrick had just met his auntie from Mexico

Meeting our friends from Florida for first time

1st time meeting great auntie!

Even then, I always thought this was the case for most kids. But then as I started reading blogs and forums about children with hypotonia, one thing that every parent always said about their daughter or son was: "She/he is always happy, the happiest, laid back kid I know". Most of them, had 3, 4, 5 children, and somehow, of all their children, the one with hypotonia seemed to be the happiest one. So, if there is something special about their condition, that makes them more content, laid back, warm, smiley, sweet and easy going than "normal" kids, what is it?

So here I'm trying to come up with an answer. Below are some thoughts.

Patrick's Oculomotor Apraxia

Patrick's Oculomotor Apraxia is not progressive. Patrick's MRI showed no indication of Joubert Syndrome, or any other syndrome. Patrick has shown gross and fine motor delays (which have improved significantly), borderline speech delay, but no cognitive nor social delay whatsoever. So all in all, so far we can say that of all Oculomotor Apraxia cases, Patrick has a mild to moderate case.

What is Oculomotor Apraxia?

Congenital Ocular Motor Apraxia or Oculomotor Apraxia (OMA) is a rare disorder where the person is unable to move the eyes smoothly to follow objects horizontally.

Still confused?

Think of a woman passing by in front of you. The person is walking from left to right and you follow her with your eyes, but don't move your head! Just move your eyes from left to right slowly, following the person walking. Usually people can do this without any problem. People with Oculomotor Apraxia can't. Their eyes will follow the person, but couple seconds later the eyes jerk, making them lose sight of her, having to move their heads to try to catch up to where she is now.

Cognitive Development

Children's development can be classified in 5 different areas:

1. Gross Motor Skills
2. Fine Motor Skills
3. Feeding Skills
4. Speech Skills
5. Cognitive Skills

Some may also add Sensory Processing Skills (vision, auditory, touch, taste and smell) and Social Skills.

I think is important to dedicate a post about Patrick's cognitive development. Children with Oculomotor Apraxia usually have no cognitive development issues. Most times, Oculomotor Apraxia is part of a bigger health problem, like Joubert Syndrome, and in these cases, cognitive development is most likely affected. But, for kids like Patrick, whose only problem is a slightly underdeveloped Cerebellum Vermis, cognitive development is not affected.

One medical condition or many medical conditions?

Patrick has Oculomotor Apraxia, hypotonia and pronation (and may soon add speech delay to the list). In the next few weeks I will dedicate a single post to each condition to explain them further.

In the meantime let's talk about having many diagnosis. So by the age of 18 months, there we were with 3 medical conditions for Patrick. The next few months I kept wondering why Patrick was born with many unrelated "defects" and feared that there would be more down the road. Why Patrick seemed to have so many different problems was a total mystery to me... Up until I came across this website and other similar forums was when I got an answer: Patrick really has only one condition: Oculomotor Apraxia (OMA). Hypotonia and any developmental problems that may come ahead, he will have them only because he has OMA (and he has OMA because of the underdeveloped cerebellum, so we could actually say that he has all these medicals conditions because of the small part of his brain that didn't develop fully.)


Think of a child with Down Syndrome. More than 80% of children with DS have low muscle tone, mental retardation, similar physical characteristics among them and stunted growth. But parents of DS children don't go around saying "my son has mental retardation, also low muscle tone, and also stunted growth..." all they have to say is "My son has Down Syndrome" and we immediately assume (and most likely rightly so) that their son has mental retardation, low muscle tone...

Unlike Down Syndrome, Oculomotor Apraxia is a rare disorder. Unless you know someone that has it, you would never know about it. When I tell people that Patrick has Oculomotor Apraxia and kind of explain that it is a problem in the eye, they still look at him and wonder why he still walks with the hands up trying to get balance when he is almost 2 years old. That's when I have to explain that Patrick just started to walk because he also has low muscle tone. Then they look at the way his legs move and that's when they notice the braces on the feet. So there I go to explain that Patrick also has pronation. I know that in the next few months when is more noticeable that he can't talk well like other kids his age, I will be explaining that he also has speech delay.

Learning to walk - Video of Patrick walking at 21 mos.

Patrick wearing his AFOs (braces)

Then you will think that Patrick was born with way too many health problems, just like I used to think. But I'm happy to know now that is actually just one. Everything else is just a consequence, or a symptom of his Oculomotor Apraxia (or more specifically, of the slightly underdeveloped cerebellum). Just like the many issues that children with Down Syndrome have, aren't really many unrelated issues, but rather just part of the bundle.

Based on the personal stories from the forums I read, I put together a list of the most common related issues that children with OMA have. Some kids have the problems more aggravated than others, but no matter what the degree is, it seems like all the related issues can be treated.

• Low  Muscle Tone. Patrick has it, and has improved significantly. His therapist just told us that he will likely move from twice a month sessions, to once a month sessions given how well he is doing now. Yay!
• Speech Delay. He will have a full evaluation by a Speech Therapist in a couple of weeks, but I have been told by his PT that perhaps he will require once or twice a month therapies.
• Fine motor delay. In Patrick is borderline so he doesn't require specific therapies for this, but his PT gives me a few suggestions to get him up to speed. 
• Difficulty potty training, which goes to around 4-5 years of age. Boys are usually potty trained later than girls, at around 3 years of age. He isn't 2 yet so I don't know whether he will have a problem on this or not. I'm mentally preparing myself to the possibility of changing his diapers for another 2 years though!
• Lag behind in school the first years due to difficulty reading. I sort of new all along reading would be a problem because of his eye issue, and assumed it would impact a bit his learning at school. We shall see how big or small is the impact in him.
• May be near or far sighted, thus need to wear eye glasses. So far he doesn't have this problem, but who knows a few years from now, too young to tell!

How is that for a bundle huh? As I finish writing this, I can see him few steps away from me trying to figure out how to take down the gate to get to the kitchen. He just looked at me to see if I was watching him, and so he gave me the biggest smile, his signature "ham" smile that melts my heart and makes me smile instantly. Sure for me he IS a bundle... my little bundle of joy.

Patrick's crazy smile

A close-up on that smile!

Learning the diagnosis

Appointment with the Neurologist:

In the last post, I talked about how we ended up getting an appointment with a neurologist to find out more about Patrick's eye issue. That appointment went well. The neurologist was extremely nice and patient. We had so many questions, and we also had to answer so many questions. Patrick was very good cooperating with the simple tests the doctor performed at his office, like following objects from side to side, and checking up his body, his reflexes, abilities and such. He said Patrick had something called "Oculomotor Apraxia". The way he explained it, made my husband and me feel better about the whole situation. "He was born with it, it won't get better, but it won't get worse. He will learn to deal with it, and will learn to compensate it as he grows. Overall he can have a normal life".

We were told that an MRI was necessary to find out more about the "level" of the damage, the causes, and such. He referred us to a Pediatric Neuro-Ophthalmologist that specializes in his condition. We had a trip planned to Mexico to celebrate Patrick's Baptism in 3 weeks, and Patrick and I would spend one month in Mexico, so time was kind of an issue. The Neurologist was nice enough to tell the eye doctor to squeeze in an appointment before we had to leave for Mexico. The MRI was scheduled 3 days after our return from the trip.

Appointment with the Neuro-Ophthalmologist:

The visit with the Pediatric Neuro-Ophthalmologist didn't go well. As a matter of fact, it was the worst day of my life. He said that Oculomotor Apraxia was one of the indications of something called "Joubert Syndrome". Another indication was decreased muscle tone, which Patrick seemed to also have because by then, at almost 10 months old, he wasn't crawling, pulling up, and had just started to roll over. He said the MRI would only confirm what he was telling us.

How mommy instincts helped my son

My husband and I were spoiled with Patrick in so many ways. He wasn't a colicky baby, he took always good naps and learned -on his own- to sleep through the night by the time he was 3 months. Despite that it took me some weeks to figure out the breastfeeding part, once we got it going it was easy and I enjoyed it very much. He was very personable, and very, very smiley. Very smiley. He learned early to play with rattles and other baby toys. He learned to sit without support by the time he was 5 1/2 months old.

Patrick, 4 months old.

But by the time he was 3 months, I noticed something wasn't right with his eyes. It seemed like they wouldn't "follow" his head movements smoothly. Sometimes it was more noticeable than others, and in fact, some people wouldn't even notice it at all. I told my husband and some family members, expecting to hear "oh you are right, you should take him to the doctor" but all I heard was "mmm no, I don't see anything wrong". I didn't want to look like a crazy mother, and to be honest, at that point I had no other reasons to worry about him. He was otherwise healthy and happy, so I figured I could wait a bit longer to see how it developed.

Patrick got a reward

Yesterday Patrick got a new toy. It's a Toy Story 3 Lil' Quad that I wanted to give to him last Christmas, but for whatever reason in the end didn't buy. It turned out that it was actually good that I didn't buy it back then.

Patrick had his physical evaluation in January, and it was until then when we got a better scoop of his low muscle tone and all the exercise he would require to make his muscles stronger. A ride on toy that moves by the push of a button, like the Lil' Quad, would have been a very bad idea. Luckily Patrick had received a cute little ride on toy on his birthday, and another one for Christmas as gifts from friends of us, which required him to move his feet in order to go anywhere.

Tim's co-worker, Deb, gave Patrick this ride-on toy for Christmas. He was thrilled!

Finding a title, and what is this blog about.

Hi!

I'm so excited to finally start my own blog. Ever since I became a mother I had the intention to start a blog  with the idea of posting pictures, videos and accounting Patrick's (and future children's) milestones for the family to see. Soon after, I found myself with little free time, so Facebook was good enough to keep my family and friends up to date. Months later we found out that Patrick had few physical disadvantages and with that I also realized that there wasn't much information online about his "conditions", and whatever I found, wasn't too promising about the overall progress or accomplishments my son would have.

Almost a year later since his diagnosis (Oculomotor Apraxia, Hypotonia and Pronation), I'm happy to say that this has been a better journey that it was ever portrayed to us -even by the doctors! With the extremely joy I feel to finally see my son walking (he is 21 months old) I felt the urge to start the blog to tell the world (or the 3 readers) that I'm confident that children with similar disadvantages can do anything and everything they want -it will take a little extra time, and/or a little extra work, but they will do it!

As I acknowledge this hasn't been nowhere near as difficult as it would be if I had a son with a chronic  illness or severe developmental and cognitive delay, I can also say this hasn't been as easy as it is for parents whose children are able to accomplish their milestones "on time". This experience has been filled with doctor appointments, evaluations, tests, therapies, ups and downs, and lots of prayers and hope from my husband and myself, and hard work and courage from my sweet son.

I will try to post everything from how I noticed the developmental delay, to diagnosis, to treatment in weekly posts. Finding the name for the blog wasn't an easy job. I wanted to say so much with the title, but it seemed like everything that came to mind was already taken by another blogger (Trust your mommy instincts, Growing strong inside-out, A tale of hope and perseverance...) I guess is my fault for being too late in the game! But then I asked myself, what is what I really want to tell people with this blog? I want to say that Patrick can do it. He can because the challenges are ridiculously minimal. With his perseverance, the love and care of his parents and the mercy of God, he is Overcoming Tiny Obstacles one step at a time.