To the new parents of kids with special needs

A couple of months ago, I took Patrick and Robbie to the softroom at the Lee RECenter. The place was empty and the kids were happy to have the whole room to themselves. Shortly after we arrived, a mother came with her son, accompanied by who I think was the grandmother. The little boy must have been around 1 year old, judging by his height. He was very skinny, however, making him look significantly younger, and looking also quite fragile. Mom and grandma were trying to help him stand with support. The softroom is such a great place for little ones with low muscle tone. I know it was great for Patrick. They were also keeping him on his belly as if trying to make him crawl. I remembered those days. The boy was wearing prescription glasses. I'm always curious about little kids that wear glasses, because Patrick has an eye disorder, so I feel like asking all sorts of questions, but I never ask.

It was obvious that the baby boy had some sort of health condition causing his fragile appearance, his low muscle tone, and the eye problem. When I see mothers of kids with disabilities, I feel like saying hi. I feel like telling them that I have one of my own. I want to exchange tips on how to help our little ones. But granted, I never say hi. I just don't know how they will react. This time, I thought, I should give it a try. There was nobody else in the softroom but us, and they seemed like nice ladies. I was getting ready to start a conversation, when the baby, who was on his belly, started to throw up. The mother was all nervous, probably worried that I would mind that the boy just threw up on an area where my kids were playing without shoes. The grandmother immediately rushed to help her and hold the baby while the mother quickly cleaned up. And then I saw it. That face that just someone who has been through it, is able to read: I saw her trying to keep it together, when all she wanted to do was to cry. They left immediately after. They had spent a total of five, maybe ten minutes in there, but once that happened, she just couldn't be there anymore.

I was her once.

It often happened when I was new to this whole thing of having a child that is less than perfect healthy wise. Seeing kids that were Patrick's age running around in the playground while he was sitting there not being able to move would just break my heart. All sorts of things would go through my mind and heart at that point: Will he ever walk? Will he be a sad boy when he becomes aware of his disabilities? Feeling ready to burst in tears, I would just pick up Patrick and leave the place.

I'm glad I'm over that phase. It's very good for me to stay around kids his age that are able to do 10 thousand more things than Patrick is able to do, and it's even better for Patrick to be around them, so that little by little he learns to affront his obstacles. He learns significantly faster by observing and imitating other kids than from me or the therapists teaching him. But the fact that now we are happy to "stay" socializing with healthy kids, trying to do the things they are doing, doesn't mean there aren't times when I feel sad when he can't do something. It's less often, but it happens. Actually, it happened very recently:

We went for the first time to the KidzNMotion in Woodbridge, VA. There are all sort of bounce houses, giant slides and some other things for kids of all ages to play with. There was one gigantic slide where Patrick saw both older and younger kids having fun, so he wanted to try it. In order to go down the slide, first you had to go up on narrow inflatable stairs, and as you can imagine, it wasn't as easy as he had thought. I figured it would require more time for him than it takes other kids to go up, so I waited until it wasn't crowded to have him on there. I decided I would take a video of him going up, to share it on this blog when talking about what are the fun things kids can do that would help improve their coordination, balance and low tone issues. Oh boy I never thought I would actually share this video on a post talking, instead, about feeling ridiculously helpless at my son's challenges. The first video shows Patrick the very first time he tried.

He kept trying a few more times, before understanding the way he had to coordinate his legs and arms in order to be able to climb. When I saw that he had made quite the progress, and that he had the intention of going all the way up, I decided to take a video again, knowing it would be the video to share about the work out kids with low muscle tone get on these things, and how much fun it is because after the work out, they get to go down the slide. Not once I thought that Patrick wouldn't make it that far.

There are so many things you can see on that video. First, Patrick gets intimidated by another child who wants to go up. He is aware that he is too slow and by her being behind him, he feels pressured. So he decides to give up even before trying. Next, you see him watching the girl going down the slide, and remembering that that's the goal, he decides to try again. For a little while, he does pretty well going up, all things considered. Then, there is that point where he gets stuck. He is so close, so close to the end, but he just doesn't have the physical strength and ability to finish the job. He was about to cry, and kept turning his head at me like trying to get some help. Lastly, he gives up, and comes back down, letting me know it was too "big", and trying to forget about the incident, he moves on to other things.

One thing you don't see in the video: Me, trying to keep myself together to not burst in tears. I couldn't even utter a single word to encourage him to keep going. Seeing him trying so hard, so hard to hang in there and finish that last couple of steps, and then realizing that that's just not going to happen, made me so angry with life, and so sad. Actually, I think I shred a few tears, that were quickly wiped off because I didn't want to feel embarrassed of other people seeing me, including Patrick. There are things that Robbie can't do, and doesn't make me sad at all... But with Patrick is different. I know he has a rare health condition, so when things like this happen, I'm reminded of that. These challenges remind me that often times, Patrick won't be physically able to do something right away because of the way he was born, and this makes me sad. How couldn't it? He is my sweet son.

Just like the mom at the softroom, I could have just left the place. But I have done that enough. It's been a couple of years now of dealing with this, that leaving is not an option anymore. So I took off my shoes and decided to help him myself. We found a smaller slide, and I figured we should start there. Then a bigger one. Then we found one that was almost as big as the one that he couldn't go on, and although he was hesitant at first to give it a try, I encouraged him and let him know we had all the time in the world to try. Kids like Patrick need extra time to learn and do things. Then I let him do it all by himself, and he did it. He was so full with joy I felt like crying again. Happy tears this time, of course. He had a blast on that slide and he was happy that mommy and little brother were having fun there, too. Maybe next time we go there, we will give the big slide another try. Maybe he still won't be able to climb it, but that's OK, we know there are plenty other ones that he CAN do, and we know, too, that with enough practice, one day he will be able to climb that slide. He will overcome the obstacles. I know that now.

As the time goes by, you will learn from your mistakes. Eventually, you will get thicker skin and discover that you can actually endure whatever comes your way. You will meet other parents going through the same path you are. Seeing those parents hanging in there is comforting and encouraging. And when our kids finally accomplish something, as little as it may seem to others, the joy you will feel won't simply compare. Sometimes our special kids need more time and patience, than our help. Sometimes they need more trust from us. If they know we believe in them, they will believe in themselves. My Patrick is the happiest when he helps me carry the groceries from the car. He struggles a little trying to not lose balance while holding the small bag of food, but he is happy to help me, because, you see, his biggest need is to know that he is needed. That I need him. All we want is for our kids to be happy, right? Well, nothing will give them more joy in the world than the many ways you can show your love for them.

If you are a new parent of a child with developmental delays, and to the mother who left the softroom feeling helpless and sad, all I want to say is, it gets better. I promise you.

Speech Update

Patrick is talking more!!

Let me start by saying that Patrick started taking speech therapies from the county's Infant and Toddler Connection when he was 2 years old. After a little less than a year of ST, Patrick started preschool (which ended his right to receive speech therapy from ITC) and we were told that he didn't qualify for ST at preschool (later we learned that this was based rather on the lack of school funds) and while he definitely had a delay, they told us that his speech would improve just by attending the school everyday, as this was language-based.

We gave it a try for a year. They were right in the fact that Patrick's speech improved, but the progress felt somewhat slow, specially when he had play dates and I would get so amazed about the extensive vocabulary, clarity and conversation abilities other kids his age had. So we decided to give private speech therapies a try. I'm part of a facebook community group in my area, and weeks ago there was this discussion about speech therapies. One person said these were a waste of time, because the very simple exercises were things you could just get by reading a book about it or even finding tips on the internet. This person either had a really bad experience with therapist, or simply didn't know what she was talking about. You see, I'm committed to help Patrick with his speech (and other) issues, and I try to educate myself on these things, but unless I spend a few years really investing a good amount of time learning about all the speech AND language issues (there are many!) and the various techniques specific to help each problem, I won't know as much as someone who actually did invest all the time focusing on learning these things, whether that person was self-taught or at school. The advices I get from online and books help, but slowly, while the improvement we have seen since he started taking private speech therapies has been ridiculously fast.

So the only thing I regret about private speech therapies, is not having done it earlier. It has been wonderful! After some research trying to find a practice that accepted our insurance (therapies are quite expensive!) and that wasn't too far from our house, we found Exceptional Children's Center in Springfield, VA. Coincidently, on that same facebook threat, I was happy to read that some of them said Exceptional Children's Center was great and had helped their children significantly. By then Patrick had been there just a couple of weeks and we both had learned a lot. I absolutely love this place... And Patrick does too! Why do we love it? This is why:

After me inquiring over the phone about their services, a Speech Pathologist called me back to learn about my concerns in regards to Patrick's speech, which was a very informative conversation. The very next day I received in the mail a package with a brochure and other information. We were off to a good start. Patrick had an appointment for an evaluation, which lasted over 1 hour. The place was nice and clean, and the staff were nice as well. Days later I received a very extensive report (best medical report ever) with all the findings and suggesting Patrick to take 30-minutes, twice a week therapies. It also included short-term and long-term goals. Patrick has been taking therapies for 6 weeks now and we couldn't been happier. We call the therapies "fun class" and he gets excited when I say we have to go to "fun class." He sees two different therapists and they are both great, they have given me so many advices.

One therapist seems to be focusing on the way Patrick pronounces words. For instance, we are working now on the sound of the letters P and M. Instead of closing his lips to make the sound, Patrick sticks out his teeth over his lower lip making a somewhat similar but not the sound of the letter M or P. By her suggestion, we are practicing in front of the mirror so he can look at the way he moves his lips. We also practice many words with the letter M, specially sounds that are fun, like Mmmmm yummy! For 25 minutes, the therapist works on these specific sounds while playing board games, puzzles, matching, and various toys that can be related to what he is learning. Then the last 5 minutes she comes to the waiting room to talk to me about what they worked on, and what we should be focusing on for the rest of the week. In the next video, you may notice how sometimes he puts his lower lip inwards when trying to say the letter M or B or P. To be honest, I hadn't realized this was something that needed to be addressed until the therapist suggested it!

The other therapist is focusing on getting him to get longer sentences. When Patrick wanted an apple, he used to point at the apple and say either "more" or "apple" and occasionally he would say "more apple." He would use the word "more" even if it was the first time he was requesting something. So the therapist suggested to teach him "want" instead. "Want" is a bit more universal as he could use it in many situations that didn't necessarily involved wanting "more" of something. After one week of doing repeatedly "want _______" (surprising how  many times a day toddlers use the word "want"!) the therapist suggested we added "I" to the phrase. "I want apple," "I want cars," "I want eat." This worked really well, that after a couple days we decided to add another familiar word: "Please." "I want apple please". We give him the cue "I" and he immediately does the whole 4-word sentence. Sometimes, I don't even have to say "I", I just have to put my hand over my chest, or mimic with my mouth the word "I", and he says the whole thing.

Sign language has been helpful, too. I believed that sign language was helpful for when he couldn't talk, but since he started saying many words I forgot all about them -until the therapist reminded me that they can be very helpful still. He knows about 6-8 sign words, but instead of making him use them, I use them to give him the cue to say the word. So when he forgets to say "please" at the end of the sentence, I just have to do the sign language and he says it out loud. Aren't these ideas so simple, yet so great?

For him being able to say "I want cars please" is a huuuuuuge improvement. Repeating often a 4-word sentence, even if it's the same, it helps him to get his mouth and brain get used to put words together. Now he comes and asks me "whaa ya doin mommy?" all the time, even if I answered to him three times already that I'm cooking or whatever, or even if it's obvious what I'm doing. I think he just loves knowing that he can make a request and get an answer, so he keeps repeating his new "long" phrases all the time. Robbie, cars coming! Daddy come here! Mommy look here! Patrick found it! And speaking of "Patrick found it" are you familiar with the way Elmo from Sesame Street talks? Well, Patrick also likes to talk in third person when speaking of himself. It was very cute/funny for awhile but now we are trying to get him to be familiar with me, you, I, we... so in the video below, you will see both the use of the 4-word sentence we have been practicing, and how he says "Patrick found it" towards the end.

I wanted to point out that I didn't receive any compensation from Exceptional Children's Center for writing this post, to be honest, I'm pretty sure they don't even know about this blog, let alone that I'm writing about them!

I will write another post about speech in a couple of months to see where we are by then!

Building friendship: A challenge for children with OMA?

I wrote on my last post about our concerns regarding Patrick's social skills, stating that he seems to be overcoming his issues slowly but surely. Today, Patrick doesn't mind being around children, and by "doesn't mind" I mean exactly that: He won't play with them, but at least he is not bothered anymore that they are next to him. Until recently, I thought the lack of engagement was due to his developmental delays: 18 months ago, kids his age were running and climbing, when he couldn't even walk; today kids his age are singing and doing pretend play, when he can't even make a 3-word phrase. These seemed like legitimate, almost obvious reasons as to why Patrick won't engage kids, but now I'm not sure what to make of it. 

Recently, a mother of a teenager with OMA came across my blog. She wrote me an email that got me thinking. Among other things, she wrote me this: "...The most heart breaking is her social skill. From 3 years old till now (15) she has great difficulty forming friendship. Whenever she attended birthday parties, she never participated in games or activities. She's most comfortable with kids much younger or adults. My daughter is much loved & protected by her family, cousins, friends of ours, but she has great difficulty in building friendship." 

Patrick is social, but also he is not. I would say, he is very selective whom he is social with. The thing that got me thinking from that email, is the part where she says that her daughter is most comfortable with kids much younger or adults. This sounds like Patrick. Patrick's last IEP (the school Individualized Education Program) had an observation from his teacher stating: "Patrick will watch children who are playing nearby and he will play near them... Patrick mostly interacts with staff members." Do you see the different approach towards adults vs kids?

When my sister and nephew were visiting, she pointed out how funny it was that when we were out and about, Patrick loved to say hi and shake hands to elderly people. Now that I think about it, I have never seen him spontaneously shake hands, or even say hi to any child around his age (other than his brother). I observe Patrick at the playground, soft room, water park... and realize, he doesn't like playing with other kids. He isn't mean to them, he simply doesn't engage.

It takes a little while for Patrick to be comfortable to engage an adult, but once he is comfortable enough, he can be the most charming, playful and fun kid around. But then again, he won't get this way with children, no matter how much time he spends with them (he was with his peers 3 hours a day, five days a week, for 9 months!) The only lucky child to get Patrick's attention and play time is his 18 month old brother Robbie. This could confirm that it is all related to his developmental delay: Patrick is at or above his brother's developmental stage -Patrick can take the lead, and Robbie will follow him, whereas other kids are significantly advanced that are not taking considerations towards Patrick's developmental delays.

If this is true, then it means that as Patrick's grows, and matches the developmental skills of other kids, he should have no problem making friends. I could think of this as a phase, but the situation of the 15 year old teenager rises the question if there is something else going on there. She is not 3 years like Patrick anymore. 12 years later, that mother is still concerned about her daughter not being able to make friends. Mother to mother, she asks me for any advice, but sadly I have none, because up until her email, I didn't think Patrick could continue to not engage people his age as he grew older. 

During this past school year, Patrick went from not wanting to play around kids, to being OK playing around kids, and I had hoped that in the upcoming school year Patrick would simply move from being OK playing around kids, to actually playing with kids. While this scenario may happen, right now I have no answers on how to help her daughter, so I'm asking any readers out there that have older children who have gone through this, to please let us know how have you/are you dealing with a situation like this one. From a mother to another, I can tell you that any advice, a word of encouragement, or simply sharing a common story so that she knows she is not alone in this, will be greatly appreciated. If you are a teenager or an adult with OMA who has challenges making friends, I'm sure this sweet 15 year old girl will love to hear your story.

My evaluation of Patrick's preschool year

It's been an unusual long time since my last post. There hasn't been any particular reason, but there has been definitely many things I have been meaning to write, and I hope I get to each of them in the upcoming weeks (months?).

Today I'm going to talk about Patrick finishing his first year of preschool. On the last day my husband and I went to the school to thank the teachers for all their patience and dedication to our Patrick. The teacher said Patrick was a very pleasant boy the whole year, and that he improved quite a lot, specially on his speech. She mentioned she is putting a suggestion to move Patrick, and another 2 kids from his group to the afternoon program. She believes these three kids have improved the most and would benefit greatly from more challenging activities, which are offered to the afternoon class. It isn't guaranteed that the change will happen, but it looks like a good possibility!

Patrick can count (sometimes) up to 10, however, he often likes to go by pairs. When he is getting ready to go down the slide, for example, instead of counting 1, 2, 3 and go, he says: 2, 4, 6 and go! We don't know why he does this, but I actually find it funny. He doesn't know his ABCs, and can't sing any song, but he is happy to do the body movements each songs invites (Head and Shoulders, Wheels on the Bus, Itsy Bitsy Spider). He is able to sort by colors, but he is able to name only 1 or 2 colors. He only differentiates circles from lines, not any other shape. He may be able to identify one or two letters, and this is just sometimes. His drawing is still very similar to that of his 18 month old brother. Based on this skills, I could say that Patrick wasted all his year at preschool, because, really, he didn't learn much, and also, he has learned these same things from me at home.

But I didn't send Patrick to special preschool to learn the alphabet, so to be honest, I'm not too concerned about all that. Right now, when it comes to Patrick's skills, my two biggest concerns are his language and social skills, and these were the main reasons why he attended preschool. When he started school, Patrick was just beginning to put two words together, it was very rare that you would hear "mommy come", or "baby eat." And if having a limited vocabulary wasn't enough, his pronunciation was very poor, too, making it difficult for anyone to understand. Today, his pronunciation of most words are close to how they are supposed to sound. He has mastered putting two words together, and he's slowly beginning to use three words, like "Mommy come here". Now I have a very talkative toddler, and I attribute that to the school. Every single day they sang at school, did pretend play with friends, learned new vocabulary -different from what he would have been exposed at home, and all of this was directed by special education teachers who knew, better than me, how to help him achieve all that.

In regard to his social skills, a year ago Patrick wouldn't play if there were other kids close to him. He would step back and observe all the time. If we were at the playground or the soft room, he would prefer to watch them play, wait for them to be gone (or at least not too close), and then he would imitate what the other kids were doing. Today, Patrick doesn't mind the other kids. He is able to play his own games while kids are next to him, and that's an improvement that I attribute to him being able to play, eat, sing, work... every single day with other kids at school. There is, of course, much room for improvement, for instance, it would be great if Patrick actually played with the kids, rather than just not mind that there are children around him, but I will talk about this on my next post. In the meantime, let me end this post with a few pictures of Patrick's school days.

Waiting for the bus

Patrick running to us after his last day of school

Patrick and his teacher!

We like to hang Patrick's arts and crafts. He likes to point and say "Packi did!"

We took a pirate boat tour on the Potomac to celebrate his last day of school

Pirates stealing the treasure! We better get them!

Patrick misses riding the bus, and says he misses his teacher and friends as well. Fortunately, this long school break happens during the summer (when the weather is nice and we can do all sorts of outdoor activities) so I hope he has been having as much fun with us as he seems to have when he is in school!

Overcoming YOUR tiny obstacles

It makes me so happy to receive emails and read some comments from some mothers who come across this blog looking for some answers after hearing the words Ocular Motor Apraxia. I find it very interesting and informative to read your stories, but, this blog was meant to inform other parents, so I feel that keeping those stories to myself isn't fair. This is why I'm launching the series: Overcoming Your Tiny Obstacles.

I would like to ask you, yes, you, the mother or father of a child with OMA and/or severe developmental delays, and I also want to ask you, the teenager or adult who has/had any of these conditions, to share your story with us. I would like you to use this platform to share your story.

To do so, I came up with a format, to have some sort of continuity and to make sure we get the most basic information from everyone. I will ask you to please follow the format described below as much as possible, and to send it to me.

1. Introduction - 1 paragraph. Begin by mentioning whether you are a mother of, grandparent of... or your are the one with OMA/developmental delays. Include your child's/your name, or, if you prefer to remain anonymous, you can use a nickname. I do ask, however, that you include the country and state/region you live in. Tell us what's the medical diagnosis.
2. Background. 1-2 paragraphs. Tell us how and when (age) did you find out about it. Tell us what type of testings you got done, and the findings in regard to the causes, if you know them. Let us know if any of your health issues also run in a sibling or any other member of your family.
3. Issues. 2-4 paragraphs. Tell us all the issues related to the diagnosis. Does your child have speech delay? Hypotonia? How these issues affect your child's development in the house, at school... in his daily life?
4. Eradication. 2-4 paragraphs. Tell us what are you doing to ease the symptoms. Do you take/took therapies? Have had any surgery? What specialists have you visited? Vitamins/supplements? What has worked for you and what hasn't? Has any of symptoms disappear or has become less severe on its own as your child grows?
5. Conclusion. 1-2 paragraphs. Anything else you want to add.

I hope you take a moment to share your story. Use this forum to let us know how you are helping your child, or to tell us how you are doing after having any of these medical conditions. Ocular Motor Apraxia is a rare disorder, so we need to use tools like this to connect with others in our same situation, and to inform those who are looking for answers to something that the medical community knows so little about.

We can't wait to hear from you.

Is it possible to overcome Ocular Motor Apraxia?

I have to start by saying that Patrick's abnormal eye movement wasn't severe. But it was noticeable. And it was often. When the eye doctor saw him for first time, Patrick was about 11 months old. I still remember that appointment very well. One single item moved in front of Patrick from left to right, at a slow speed, and Patrick's eye couldn't follow it properly. The doctor knew immediately: This is called Ocular Motor Apraxia. Patrick has Joubert Syndrome. He suggested to see him back a year later to check on his vision.

Weeks later we saw a Neurologist, who requested an MRI, which showed Patrick's brain didn't have the "tooth" sign, hence he didn't have Joubert. Ever since, the only diagnosis we have is "underdeveloped cerebellar vermis" which can cause speech delay, balance and coordination issues, and the abnormal eye movement among other things. We have also been told that there is no surgery, medicine or anything that could possible cure the brain abnormality, and the only way to help our son is to address each of the developmental delays we may encounter along the way. But, what about the eyes? Well, we were told he wouldn't completely overcome it, but he could learn to manage it as he grew older, hopefully by the time he became a middle school age child.

We were told all that.
Patrick showed us otherwise.

Ready for school

I made myself educated in OMA, but, as most parents of kids with rare conditions, we have to follow our instincts on most things as it's very difficult to find information or to even get it from the doctors. He still can't talk, and back then he was only a baby incapable of explaining what he felt and how, so I had to guess. I also learned to read my son's body. Very soon I figured out that his abnormal eye movement was even more noticeable when he was tired, so I made sure he slept well during naps and overnight. It helped. The more I was reading articles and his very own body, I began to do other things, which I have been sharing since I began my blogging journey.

Every now and then I would check on his eye movements, by performing the same simple test the doctor did at his office. As the months were going by, I had to speed up the movement of the objects, because he stopped having problems with the slower ones. Was he getting better, that fast? I didn't want to get too excited just yet. Friends and family also would tell me that it seemed like he was getting better. The first time I took him to Mexico, my family found out about his OMA. Seven months later we went back, and they all told me how less noticeable it was. You seemed too worried last time you were here, and look, he is fine now! Were they just trying to make me feel better?

One day I sat down to pay close attention to Patrick's eye movement while he was playing with his little brother. He was playing to throw the ball and make a basket, something he enjoys doing despite of being told by the doctor how uncomfortable he would be with such activities. I hardly noticed the eye delay throughout the whole time. With the incredible yet apparent progress, and having Patrick just turned 3, I figured it was time to see again the eye doctor. I was very curious to see what he had to say in regards to his Joubert Syndrome, since it was him the one who assured us that was what he had.

Favorite game at ChuckEcheese? Throwing balls!

Once at the doctor, Patrick was very shy but cooperative. One object, left to right. No problem. Next object, faster, right to left. No problem. The doctor had to do it several times, faster and faster, to eventually catch the delay. The doctor turned to his computer to take a second look at the impressions he wrote down on the first visit 2 years ago. The doctor couldn't believe his eyes (no pun intended) -the fast improvement was obvious. That's when I started asking him about why he believed that Patrick had Joubert Syndrome despite the neurologist saying otherwise. He said the neurologist makes a diagnosis based on the readings of an MRI, whereas he makes a diagnosis based on the symptoms. According to the symptoms Patrick had back then, he had Joubert Syndrome. He acknowledged how doctors know very little about this rare condition, so he said most of them categorize them all under Joubert Syndrome. Like with any other health condition, there is a spectrum... and we believe some kids are more severely affected, some kids less.

Then he took another look at Patrick and how well he was performing the tests. We told him about his speech delay but that he has been walking and running very well, and developing -slower than most kids, but otherwise well. He took a quick look at his medical records, and saw that his kidney tests (a common issue in JS) and other tests came back all perfect. He then realized it can't all be Joubert Syndrome, as it would be too silly to say Patrick just happens to be in the lowest end of that spectrum. We told him about the study UW is doing and that we have decided to participate. He said hopefully they will be able to tell us the name of whatever rare condition Patrick has. He was very happy we were cooperating in these type of things, and asks us to share the results with him whenever we got them back.

At the end of the appointment, he expressed again how amazed he was to see how quickly Patrick had progressed. I needed to hear that. I have been hearing it from my husband, from friends, and I have even noticed it, but I needed the specialist telling me that he has progressed so quickly it feels like a miracle. Patrick is doing so well I don't have to see him again, unless, of course, there is regress... But, he is doing unbelievable well. Whatever it's you are doing, just keep doing it.

I will keep praying. And hoping. And loving him unconditionally, because that's all I have been really doing.

Happy New Year dear friends and family.