Reblog Wednesday: 4 Words Daily: Day 87 — wordsnomad

This weeks ‘Reblog Wednesday’ is from the very talented Ritwik. His writing is nothing short of inspiring and motivational, and his blog is full of his incredible work. Please pay him a visit!

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This quote here by Helen Keller reminds me to be grateful and be present – in the moment. Often times I’m looking at you but I’m not listening to you. There’s so much distraction and chaos that surrounds me that my mind is running far too quickly to stop and as the saying goes, ‘to smell the roses.’ There have been events in my life that could have broken me and taken me to the point of no return, like a separation, a breakup, my son’s autism diagnosis or my own Chiari + Syringomyelia diagnosis. But in the midst of this unknown I’ve seen the beauty that lies within these events. The fact that my son is such a wonderful boy, so beautiful, so sweet or the fact that after my diagnosis, I’m finally learning to slow down. It’s through life’s unprecedented events that I’ve seen my own strength. I’ve also seen the beauty that comes after the storm has passed, like when my two youngest babies were discharged from NICU – Neonatal Intensive Care Unit. What a joyous day that was, to have seen them going in so tiny and fragile, and then come out victorious.

The world has too many things to offer that will never fill a void in the heart. There have been too many times when I’ve attempted to do that, given in to the worlds offerings, only to be disappointed. When I’ve finally led with my heart, my heart is full – satisfied and content. As I read the quote below by Helen Keller, I could only remember something I’d heard a while ago ….

The best things is life, aren’t things.

Indeed!

A-

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“The best and most beautiful things in the world cannot be seen or even touched – they must be felt with the heart.” Helen Keller The words for today are:

via 4 Words Daily: Day 87 — wordsnomad

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Reblog Wednesday: Reaching the top of the mountain… — Cristian Mihai

Reblog Wednesday: Reaching the top of the mountain… — Cristian Mihai

If you haven’t visited Cristian’s blog, I encourage you to do so. I wanted to share this one here with you.

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This post here in was full of truth. I’ve always thought that often times, I am my own worst critic. I live with chronic pain which in return is followed by self-doubt. I try not to blame others for my physical pain and diagnosis, you know, answer with an attitude or be harsh, after all it’s no one’s fault as to what I’m feeling. I’ve also seen that when I want to start something new, have an idea for something, I am quick to have reasons as to why I can’t do it – before it even begins. I begin to write up a list in my mind as to why I can’t reach things, won’t achieve them and in turn my ideas go to waste, the opportunity slips away. This mountain that is often full of pain and anger, it’s full of negativity, of self doubt and unaccomplished things. Maybe it’s due to my diagnosis, or my son’s autism diagnosis or just a combination of many things. Nonetheless, this is the mountain that I always try to move for myself – daily. It has to be done, otherwise, this mountain can turn into depression, anxiety, and instead of climbing it, I can fall from it. This is a mountain that often goes unseen by others, but that I feel deep in my soul.

Fortunately, with age comes wisdom, faith and hope. The wisdom to know when I need to stop the negative thinking, the faith of knowing that all things can be done through Him, and the hope of knowing that there will always be light, as long as I’m willing to see it.

Do you have mountains, how do you move them?

A-

“It isn’t the mountains ahead to climb that wear you out; it’s the pebble in your shoe.” – Muhammad Ali Ever felt like a failure? Worthless? Lonely being redemption, broken beyond repair. A waste of time? Ever felt that it just doesn’t matter? Ever felt like you couldn’t do something because it was too difficult? […]

via Reaching the top of the mountain… — Cristian Mihai

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Happy National Autism Awareness Month

Happy National Autism Awareness Month

World Autism Awareness Day 2018 was April 2nd, however April is still National Awareness Month. It is my hope that I can help spread awareness by sharing my experience with my son – my second oldest, whom was diagnosed with Autism in 2016 at the age of 6. I will attempt here and try to give you some tools that will help you or someone you know, learn the possible signs of Autism. Please keep in mind like everything, everyone’s journey is different.

National Autism Awareness Month - April

There is no doubt that each child begins to do things at a different time, starts to hit milestones at a different pace. But know that pediatricians do want some milestones to be met, otherwise it may be a sign that the child needs further evaluation to know if there’s an underlying issue. You can visit  Autism Speaks to know what specific signs to look for in babies and toddlers or any age, to be able to go from concern to action. I’ve had the privilege to still be seeing the same pediatrician – it’s been almost 11 years. He helped me see that my son at 14 months old wasn’t properly developing and immediately sent me to the right specialists. Maybe it’s because of my own health but I am a firm believer that it is best to know and act, then not to act at all.

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Meeting Buzz in Disney World – 2017

My son’s journey began when he was 14 months old, when aside from being developmentally delayed, he was diagnosed with speech delay because he wasn’t babbling, pointing, no gestures, among other things. So, by the 20 month mark he was placed with a phenomenal speech and occupational therapist that would come to our home to give him therapy. He was released from at-home therapy at 3 years old to attend a school that offered inclusion classrooms. At this time we also began an IEP for him. What is an inclusion classroom? Well, this is a classroom that allows a child with a disability or special education to learn with other children that are non-disabled. This has been beneficial for my son, at home he has his siblings but at school he also gets to see things he has not yet mastered in other kids, so he may get motivated or curious and attempt to imitate. Whether that is in PE, like jumping rope, etc. What is an IEP? An IEP (Individualized Education Program) is a program developed by the public school system for each child that needs special education. This IEP is put together by a team at the school and the meeting includes us – the parents, and it’s reviewed at the beginning and towards the end of each school year. We’ve also been fortunate enough to live near a school that offers these programs that can accommodate children like my son that need speech and/or occupational therapy. The therapy is done in the school and during school hours. These programs have been removed in schools that once offered them, due to budgeting. If parents can’t find a school near them, they are then directed to take the child outside for private therapy.

So, let’s fast forward to today, he is now in the 2nd grade, is almost 8 years old and continues to have an IEP in school.  Although my son was released last year from occupational therapy, he continues to be in speech therapy. I can’t tell you that anything drastically changed in our home with him since his diagnosis in 2016, aside from finally getting answers to behaviors he was demonstrating. The sense of relief was overwhelming, it’s not something any parent wants to hear, but it’s a reminder for me to continue to see that this particular son of mine, just needs a little extra love and patience. That’s all. His diagnosis was ‘mild Autism.’ What is ‘mild Autism’? While we were told he has ‘mild Autism’ by his neurologist, there is no official ‘mild Autism’ diagnosis, doctors will still categorize ‘mild Autism’ as Autism because it all falls under one umbrella. So, as to not confuse anyone, we don’t call it ‘mild.’ It’s extremely difficult to describe this ‘mild’ thing because he is academically doing great, the extra help he receives in the classroom is helping him a lot. However, symptoms will be seen, for instance loud sounds will make him scream and he falls apart. Our continued love for Disney World as a vacation destination for our family has helped him, he’s familiar with the park and he’s become aware of what’s going to happen next. He’s done great there. If you have a child with noise sensitivity say, they’re scared of fireworks or loud noise in general try these children’s earmuff’s/headphones. He has no ability to sense another persons body language, emotions or when another child is being mean to him. He shows repetitive behavior such has rocking, flaps his hands and jumps when he gets excited or nervous, also may even hit or push when he laughs. Also, when he has an interest in something, it’s intense. I’m going to be honest, the environment makes all the difference in his behavior, so his behavior and actions vary. He’s at times sensitive to the touch, at times not wanting to be touched at all, doesn’t like to eat certain textured foods, mushy foods like the tomato, avocado, etc., which many can confuse as him being picky. He can not watch a couple of movies, like ET and Willy Wonka because he will start to scream and cry uncontrollably. His teachers have a list of these to prevent them from showing these in his presence. He likes routine, doesn’t like certain types of clothing materials, has trouble climbing or going up and down stairs or even at times walking too much –  hence the only ‘C’ grade he has is in PE, this can appear as if he were clumsy.  This may give you clearer answers to sensory questions for children with Autism and any developmental disabilities. Aside from all this that many may think is ‘bad’, remember these children don’t know that any of this can be considered out of the norm. They are happy children and so smart. My son is incredibly caring, compassionate, loves hugs from Mom and Dad, loves his siblings, all things Lego and Minecraft and has an interest in numbers. I’ve said this before, this is one of those unseen disabilities because on the outside he looks like any other 8 year old boy. So, when a symptom arises anyone whom doesn’t know his diagnosis can easily mistaken him for behaving badly.  So, it’s not only about Autism Awareness, it’s also about Autism Acceptance, acceptance to all children and adults with any kind of disability.

Also, before I go, let me tell you about two amazing groups and/or organization that I have found to be making a world of difference in the Autism community. I do not have Facebook – I know, but if you do or don’t, either way, go and see what Autism Barbers Assemble, ‘Jim the Trim’ and a group of great barbers are doing in the UK. Their main focus is to cut Autistic children’s hair. They are changing the way we treat kids with Autism while changing lives. So, if you’re asking, what’s the big deal, it’s just a hair cut? No! Autistic kids have a hard time getting a hair cut because they think getting a hair cut hurts. If you can, take some time out of your busy day and watch on their Facebook page, ‘Jim the Trim’ cutting an Autistic child’s hair – holy moly, this man is nothing short of amazing! Lastly, Elmo has a new friend on Sesame Street and her name is Julia. She is a sweet, four year old girl with Autism. If you haven’t seen her debut that aired on April 10, 2017, meet Julia here. This first episode was wonderful and in my opinion I think they accurately captured the behavior and essence of a child with Autism.

Happy Autism Awareness Month, if I’ve opened your eyes even just a tad bit on this topic, then I’ve done my job. I’m in no way a doctor, and my opinions all come from my experiences in living with my son – that I would not change for the world.

And ‘D’ if you read this one day in the years to come, when you’re grown and I’m gray, know that God created you perfect in every way. I appreciate everything about you and I am honored to be your mami, I love you Gordo.

Happy Friday!

A-

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In 2013 Life Began with Chiari + Syringomyelia

As short as I’d like this post to be, I have an inkling of a feeling it’ll be anything but. However, my goal is to try to be as thorough as I can, starting from the beginning of my journey with the disease. A little history of my health, as far back as I can remember as a child and adolescent, I had ongoing headaches and migraines. As my mom would later realize, she’d give me Tylenol just so that I could get through school hours without having a headache mid day. My first episode to what we know now to have been Chiari 1 Malformation, unfortunately went undiagnosed at the hospital. After many tests, I was sent home with what they said was a migraine. This is unfortunate but true to many Chiarians. So after I had a second episode we decided to now go to a different hospital. The official diagnosis came in May 5, 2013 when what was supposed to be a quick trip to the ER, would be the trip that ultimately changed my life. The reason for the ER trip, muscle weakness, problems with coordination, trouble walking, blurred vision, seeing blotchy black spots, sensitive to light, sensitive to noise, dizziness, headache, vomiting and nausea, vertigo, decreased sensation on my left side and trouble swallowing. Things like bending forward, pulling, pushing, straining, lifting became intolerable. After blood work, CT Scan and MRI the diagnosis was Chiari 1 Malformation and Syringomyelia.

We’ll go through a quick crash course for this rare disease, Chiari 1 Malformation is a condition in which brain tissue extends out of the skull causing it to press downward into your spinal canal, present at birth. What does this mean you ask, basically the brain is too big for the skull and it’s causing the brain to stick out or herniate at the base of the skull causing pressure to the spine, my cerebellar descended 12.8 mm downward.

As to Syringomyelia, this is a rare disorder in which a cyst forms within your spinal cord. This fluid-filled cyst or syrinx, can expand over time and compress and damage part of your spinal cord from its center outward. My syrinx began at C3 to the top of T2. You must know that in most circumstances, to have a syrinx present is considered to be a side effect of another problem, in my case, Chiari. The surgery that one can have to relieve the pressure in the head caused by Chiari is decompression surgery.

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What is decompression surgery? I’ll go a little more in depth with my personal 2013 decompression surgery for Chiari. I’ll give you small snippets of what was done inside the operating room. While I was fully sedated, endotracheal intubation was done by the anesthesia team. The eyes are then taped shut and I was placed on the Jackson table with Wilson frame. The head was clamped in the Mayfield 3-pin head holder and affixed to the bed. Then, moving the neck slightly forward, the hair is now clipped and/or shaved with a hair clipper. The surgeon now makes a mid-line skin incision from the back of neck area up to the head to release pressure at the base of the skull. This is done by sawing off bone, opening the dura and then closing the dura matter with a patch. The bone would not be returned back to area. Because the cerebellar tonsils descent or herniation was significant – 12.8 mm to be exact, the decision was made to shrink the tonsils. They removed the tonsils and cerebellar tissue by a few mm’s on each side. A dural repair graft was sewn in to achieve further dural compression and the dura was stitched closed. Lastly, I was then  flipped over to a regular bed and extubated before leaving the operating room. The patient would have a hospital stay of a couple days – mine was 15 days. The neurosurgeon on call the day I arrived at the ER on May 6, 2013 would also be my surgeon on May 9, 2013, surgery day. After my discharge and before my post operative follow up visit with the surgeon, I was admitted to the ER twice, both times diagnosed with aseptic meningitis also known as viral meningitis. Note that viral meningitis is more common and less severe than bacterial meningitis. I was also placed on medications to help with the anxiety that followed from surgery, pain medications and muscle relaxers.

Although I was also diagnosed with Syringomyelia at the same time as Chiari, the surgeon did not attempt to touch this at this time. He mentioned that addressing the Syringomyelia would be  too risky – but aren’t all surgeries risky?

Please keep in mind that I am not a doctor by any means and by writing this, I am expressing my personal experience with the disease. The one of many obstacles Chiarian’s face is that it seems as if no one has ever even heard of these conditions. The lack of general awareness Chiari has, has encouraged me to be a voice and help spread awareness – hence the reason behind creating this blog. Because ultimately this can become a burden – huge, to patients trying to inform family, loved ones, friends, co-workers etc., about what they go through. Where do you begin, how to even explain?! Also, as you may already know, be informed that like any surgery there are potential risks and other procedures may be needed in the future even after a successfully performed decompression.

So, fast forward to 2017, endless complaints to my neurologist and surgeon regarding my 2013 diagnosis of Syringomyelia, all of which assured me all was good. I was still since my 2013 diagnosis, experiencing ongoing symptoms, had countless ER trips, on many pain medications that I decided to make a change. I changed hospitals, doctors and started from zero. I then visited multiple doctors in different hospitals, had MRI’s done for all of them and all of which said to continue medication and that addressing the Syringomyelia surgically would be too much of a risk. Finally after having a borderline break down came a break through. I remembered and decided to reach out to a surgeon I had researched in 2013 after my decompression, Dr. Barth Green, a neurosurgeon. His office isn’t too far from where I live in Florida and so I made the decision to call his office. I had a lot of digging to do first for the neurologist Dr. Martinez-Arizala -they work in the same office. He first needed to see my medical records to determine if my case would be moved to surgeon Dr. Green for final evaluation. The process would take weeks. Yes, this is the system and this is the way things operate. This meant I had to go back to the hospital where I had decompression surgery to gather it all. I had to get all of my records, from MRI’s to CT scans, all to be saved on CD’s, this included before and after surgery, any and all medical records, operative report, all doctors notes, etc. etc.! All. Of. It. He wanted to see it all! Thankfully all was not in vain, I was called by the surgeons nurse to come in and meet with Dr. Green soon after all my medical records were sent. He had already evaluated my case/records on our initial visit and recommended laminectomy with a possible shunting of the cyst, meaning placing a shunt was a possibility. They say, “possible shunting” because even after having done an MRI prior to surgery, the final decision is made at the time of surgery. There is really no way of knowing what the doctor is dealing with until he opens – too graphic! Sorry! The date of surgery was on November 7, 2017 and here laminectomy was performed and a syrinx shunt was placed. The syrinx shunt diverts the fluid from the syrinx into another space where it can be absorbed. There’s a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space or abdomen. The space location is determined on the patients case and the surgeons personal preference.

I appreciate you coming this far in the post and following my journey. Those of you that can tolerate not so pleasant images, I share some pictures of my hospital stay following my most recent November 7, 2017 surgery for Syringomyelia.

Xo – Ana

 

 Pictures following my November 7, 2017 surgery for Syringomyelia