About this blog and the blogger

Blogger's Background
I'm not a doctor, or a therapist, nor an expert on any of the medical issues I talk about here. I'm, however, the mother of a child who has all the medical issues that I write about.

Blog's Sources:
Most of the things I talk about have no source cited. The reason is simply: I didn't read X or Y somewhere specifically. I got to X or Y conclusion by reading many things, in many places, talking to Patrick's doctors, working with Patrick's therapists. Helping Patrick myself. A statement on any given post was most likely the conclusion I drew from all these things combined.

Advises:
I advice you to try anything that is safe if you think it would help your child. The point is to try different things and to not give up. This whole blog is based on the experiences we are living by having a child with OMA and developmental delays. We have tried, failed and succeeded at one thing or another, and I'm passing on to you those very own experiences.

Advertising:
When I talk about products, I often link the products to Amazon.com. The reason is because Amazon sells about anything we can think of, and has reviews from buyers, and usually has lower prices. Being that said, I rarely buy a toy from Amazon. But I can't link the toys to Goodwill, consignment sales, or craigslist, where I buy most of the toys my children have (talk about recycling and saving money!). So if I suggest to purchase a toy or a book, or any product or service, please know that I'm not being remunerated by the company or the seller to promote its product.

About the posts:
All the posts I have written can easily be searched by date and topic. On the top of the left hand side you can find the archives categorized by month. If you are looking for a topic in particular, let's say, hypotonia, you can click on the word "Hypotonia" under Labels. That will take you to all my posts where I talk about hypotonia.

Most of the posts are single posts, but I also have "series" (Overcoming Low Muscle Tone and Overcoming Behavior Issues, as of today) where I write a number of posts on a specific topic. For example, the Overcoming Low Muscle Tone series consisted of 7 posts with advises on how to help your hypotonic child. However, I make mention of hypotonia in other posts that are not part of the series (as of today there are 16 posts total on hypotonia, including the posts in the series.)

There are MANY things I leave out on the posts. I realize that if I got into too many details I would end up writing a book. So I try to keep it short (sort of) which takes me to my next point:

Contact:
If you feel like you are left with more questions than answers after reading one of the posts, please feel free to contact me, I would love to answer any questions you may have about our journey. Also, I would love to get feedback, and more important, I would love to hear your story. I want to share notes, hear what is working for you and what is not. Maybe your child is older and you can tell me where he is at, so I can get a better idea on what to expect. Maybe your child is younger and you have so many questions, but little to no answers. Please know I will be happy to help you any way I can.

Language
Please note that my first language is Spanish, so good chances are that you will find a misspelled word or two in many posts. I'm trying my best to not make mistakes but I still struggle with English, and I hope to get better at it the more posts I write.

Also, you may notice that sometimes I refer to your child as "he". There are two reasons: Hypotonia, Speech delay, and Oculomotor Apraxia are more common in boys than girls. Also, this blog is based on my child's journey, who is a boy.

Purpose:
I started blogging about these medical issues primarily due to the lack of information on Oculomotor Apraxia. I figured there had to be other parents with the same problem, wanting desperately to know more about the subject. So I took on the task of documenting our appointments, advising based on our experiences, informing what I had learned from the doctors, therapist and books, and telling our story.
After I had written a number of posts, I found myself reading more and doing more to help Patrick, but not only to help Patrick, but also to have something to write in my blog. So writing this blog is not only helping parents out there, but helping me help my son.

Disclosure:
One year ago today, I started writing this blog. It's intended to be weekly, but at 36 posts, well, I wrote more like every 10 days. I'm not sure for how long this blog will be live, but I don't expect it to be for years. Even though I love writing, I also want to respect my son's privacy. I don't think he will be too thrilled to have all his medical issues and personal information exposed to his friends -when his friends are able to read and get access to the internet, that is. I think when that time comes, that's when this blog will have to be taken out of the public eye. In the meantime, I hope I can help as many parents as possible to get information about OMA and developmental delays, and hopefully help them be inspired by Patrick's journey.

A very special day

 I'm going to take a quick break from the Overcoming Behavior Issues series, to write about the busy day we had yesterday.

Patrick graduated from the Infant and Toddler Connection (ITC) of Fairfax-Falls Church. This is the therapies service that we have been receiving for almost two years now. I have made mention of the ITC in several posts on this blog, but to recap, here are 3 important points:

1) By suggestion of his neurologist, Patrick began receiving services from ITC when he was 1 year old. There is no minimum age, but the maximum age is 3, which he will be in November. Patrick will continue to receive tailored education for his special needs, but this time in a school setting. He begins classes in 3 weeks!

2) Patrick started with Physical Therapy twice a month. After a year of PT, it was suggested that he also took Speech Therapy, which he had three times a month. Due to the vast improvements in the physical area, Patrick stopped receiving PT about three months ago, and started receiving Occupational Therapy instead.

Patrick's Physical Therapist and Coordinator

Patrick's Speech Therapist

3) Each of the three therapists he had all this time, came to our house for an hour each time. Every 6 months he was evaluated and new goals were set. During that hour, we would play with Patrick to find out where he was lagging behind, and they would give me suggestions on what to do and how to help him reach each goal that was set.

The graduation was a very nice event. It went from 11:30 to 13:30 at the Van Dyck park in Fairfax, VA. The therapists, coordinators and office staff were there to celebrate the children and their families who had been working so hard all this time. My husband took the day off so the whole family was able to see Patrick receive his Diploma and the cute gifts that were given. Here are some pictures of the event:

So serious for the graduation photo!

Mommy, stop trying to make me smile!

Receiving gifts from the Mayor

Patrick was amazed by the guitar player. He played our song "You are my sunshine"

Bubbles!

Ham smile!

Patrick played, played and played non-stop!

Showing off his graduate shirt and the star he received from the Sheriff

 After the event, we headed to Great Waves Water Park in Alexandria to celebrate. Patrick loves anything water (baths, water parks, sprayground, hoses, beaches, pools... toilets and sinks!) so we figured a water park would be the perfect place to take him. Melanie (Robbie's godmother) was kind enough to gift the entry passes.

Great Waves Water Park

This area reminded him of his favorite Sprayground

Water, water, water!!!

Patrick made a friend

Robbie had loads of fun, too!

Daddy and Robbie playing peek-a-boo!

Robbie was exhausted at the end

Patrick is never tired apparently

Silly mommy made Patrick pose for this pic

Surfin'!

It was a very special day in our lives. I don't think Patrick would be where he is at without the help of his therapists. I have learned so much about my son and how to help him thanks to them. Patrick was a trooper the whole time since we started this journey, he has come a long way and we are very proud parents! We love you Patrick!

Overcoming Behavior Issues: Nutrition

Patrick is a skinny kid. He's always been above average in height. In weight however, was average or above average as a baby, but under average as a toddler. Patrick looks like my husband when he was a child, but with a darker skin tone, eyes and hair. We like to say that Patrick is a Mexican version of Tim. The fact that Tim was so skinny, but healthy as a child, made us think that Patrick's low weight was only a matter of genes.

Patrick was breastfed from newborn up to the age of 8 months. I think I could have done it longer but I had gotten back to work for a few months then, and it was getting more and more difficult to manage both. So I started giving him Similac. He started eating solids at about 6 months, but it was quite a slow process, which I'm relating to his low tone in the mouth (it was difficult for him to chew and swallow some foods). Patrick didn't pass stools everyday. Even when he was breastfed, he would go 3-5 days without passing a stool, but it didn't seem to bother him at all, so the doctor said we shouldn't worry. When he turned 1 year, we began to give him whole milk, and more foods were added to his diet. That's when I feel the real constipation problems began.

Without getting into too many details, I can say that he was in severe pain when trying to pass a stool. Because of it, he was eating less and less every time. We thought lactose was the problem, so we tried so many milks for months, from lactose-free, to almond, soy and coconut. The problem seemed to ease a little for awhile but it always came back. We took him to his pediatrician and it was suggested that we gave him Miralax. Miralax was doing the trick often, but I didn't like the idea of having a toddler taking medicine to be able to go potty. We also had to give him suppositories when the problem was really bad. So we kept trying things, like reducing the intake of bread and pasta and adding more fruit and fiber, reducing milk and adding more water... but nothing seemed to eradicate the problem.

Patrick started to be a really picky eater, occasionally eating amazingly well, but most of the times being chased to get him to eat. He loves everything eggs and enjoys fresh fruit and berries, but getting him to eat lunch and dinner is usually a battle. About a year ago, we tried adding Carnation Instant Breakfast to his milk, and it seemed to be working at first, but after a couple of weeks, he didn't even want to eat his fruit or yogurt snacks. The doctor figured that the Carnation was probably making him too full and instead of helping, it was making things worse. So we stopped the Carnation, and we continued to hope that each day would be one of those lucky days when Patrick happened to eat everything we gave him.

I got a wake up call when at one of his appointments we realized he hadn't gained weight in the months prior. And then after that we noticed he started to lose weight, so we made an appointment with a nutritionist and a gastroenterologist at Children's Hospital. They ran a number of tests, to see if he had any sort of allergies or intolerance to gluten (celiac disease), but everything came back OK, and we were told (again) that Patrick needed to be on Miralax daily. I still hate the idea of having him on Miralax, but like the doctors said, by trying to avoid to have him take medicine, he is not eating, hence missing out on nutrients that are important for his development. They were right on that, because now that he is passing stools everyday, his appetite is significantly better, so it's easy to get him to eat his veggies, fruits, meats and such.

He is still a picky eater sometimes, but most of the times he eats well. He is back to having Carnation Instant Breakfast and looks like he is slowly putting on some weight. Best of all, he isn't suffering due to the constipation issues. It broke my heart every time he had to go through that pain. But now I have my happy Patrick again. His mood is so much better now, which makes him be more willing to sit and play with me nicely for long periods of time, learning new things. The difference is amazing, like two completely different boys. We also added Magnesium: My husband sprays some on his skin at night few times a week, or we add Epson Salts to his bath. It makes him so relaxed, and a happy little boy.

I found in several forums moms talking about giving Fish Oil to their kids with developmental delays. Most moms then would say that their kids were doing significantly better (like talking more, or improved motor skills), however, some of them didn't want to attribute the improvements to the Fish Oil, but rather say the improvements were due to their kids getting older. I figured I didn't lose anything by trying so we added Fish Oil to his morning shakes. After a couple of occupational therapies, where Patrick played and behaved like a perfect little boy for the whole sessions, his therapist asked me what did I think had made the difference, to which I responded that he was eating significantly better every day. I told her about the magnesium baths, and then I told her about the fish oil. And as I said that, I heard myself saying "I'm not sure if that really made any difference though, maybe he is just getting older, hence more mature". That's when I remember these other ladies suggesting that the Fish Oil wasn't the real cause of their kids improvements, but only a matter of coincidence. I realized then that it couldn't be a coincidence that all of our kids happened to "grow and mature" when they started to take the fish oil. So I'm going to give Fish Oil its very own credit, too.

If you have a picky eater like mine, chances are his nutrition is causing some of the behavior issues you are dealing with, along with some of his developmental delays. A better nutrition didn't "cure" Patrick, but it's definitely speeding up his development. He isn't constipated any more so he is happier, and he is more often with a satisfied tummy, therefore he is willing to relax and pay more attention on how to do new things that were past due, like making puzzles. Instead of throwing the puzzle pieces to anyone who passes by, my boy is finally using the pieces for what they were made: making puzzles!!