LIFE OF A MOM WITH CHIARI 1 MALFORMATION + SYRINGOMYELIA

This rare disorder has quickly changed and altered the course of my life. So, my hope through this outlet is to raise awareness for it. I think the most important thing like everything, especially an illness is early detection, early diagnosis and ultimately receive treatment is essential. I can’t stress that enough. The importance of knowing what you have is key. So, if you’re feeling any kind of way, overly tired even after getting a good nights sleep, rapidly putting on weight or loosing weight, have ongoing headaches, having unbearable back aches, etc., go get yourself checked! I know many people have a fear going to their doctors out of fear, fear of being told they may have something, like an illness. But understand that this will allow doctors to properly treat you if something were to arise and time is always of an essence.

Chiari Awareness Picture

The changes that have happened due to  In 2013 Life Began with Chiari + Syringomyelia have been things that have affected my entire family. My life as a stay-at- home mom having Chiari and Syringomyelia has affected the way I do everything has changed. I make the changes to accommodate the levels of pain that I may feel on that day.

A few of the changes I’ve made are …

 shop online

  have family movie nights in the comfort of our home

 bring the ice cream home

⇒ As far as cooking, if you’ve read More About Me you know I am Nicaraguan and I love cooking and baking. It’s such a stress reliever, but it’s then been limited.

So, overall I have really had to change my way of thinking to care for myself, to foresee situations, for instance locations I may be traveling to, perhaps on vacation. So, have self awareness. Also, don’t feel afraid or guilty to say no, make changes to your plans or feel bad to say no to people. Just know this is your honest truth and you come first. You can read more about that here Life Perspective After Chiari + Syringomyelia Diagnosis I get pressured into feeling “normal” but what is normal? Because I do consider myself normal, just not the definition of everyone else’s normal. This is a chronic illness that comes with chronic pain. Chiarian’s are often called Zipper Heads, because of the scar that is left behind our necks from decompression surgery. It’s a scar that I was once afraid of showing but have realized that everyone wears a scar. Some scars are just seen while others are not. You can wear your scar on your arm from a fall, on your face from a burn, behind your neck from decompression surgery, scars from c-sections – such as myself from my 6 littles or on your heart from a breakup or loss.

I also find ways …

⇒ to sit and play with the kids, we love to draw, paint and do puzzles.

⇒ I spend countless moments with them cuddled up in bed, reading a book or watching an Elmo or Peppa Pig video – a few of their current favorites.

This is an invisible illness and symptoms can flare up at any time. So, never be ashamed or embarrassed to alter your day. I have noticed that simple things like smiling or am seen outside my home, is quickly misinterpreted as me miraculously being cured and feeling better. However, a smile simply means that you’re trying your best to get through the day.

-Ana

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The KonMari Method + Clutter Free Home

The KonMari method is a category-by-category organizing system created to simplify your life. These books were written by Japanese cleaning consultant Marie Kondo. In her books she seeks to help you organize your home by decluttering it. She gives you tips to make it easy to detach yourself from items you don’t need. This has come hand-in-hand with both of my diagnosis because it’s helped me be able to see which material things are important versus those that are not. She suggests to surround yourself with things in your home that spark joy. These are two of Marie Kondo books and they both relate to the KonMari method The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing and Spark Joy: An Illustrated Master Class on the Art of Organizing and Tidying Up

 

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Since my surgeries for my rare disorders In 2013 Life Began with Chiari + Syringomyelia looking back overtime it’s all given me a chance to be present and to live in the moment. I like to keep things that have significance to my family. While minimalism isn’t for everyone, I think that to a certain extent we all want to free ourselves from the chaos that clutter can create. The KonMari method also suggests that you begin with your closet. This is all in an attempt to encourage you to begin to simplify and organize your home. She mentions starting with your closet, but I think it’s just a matter of starting somewhere! I also think the truth behind our attachment to things may be emotional or sentimental. What I like to do with my little ones is to only keep clothes they will benefit from in the short months to come. Otherwise, I’ll pass it on to someone else or take it to my local Goodwill. So, once something has served it’s purpose in my home, anything from toys no longer being played with, it’s donated and out the door. Also keep in mind the intention for why something came in to your home, does it continue to serve a purpose in your home?

The older kids and I will also go through toys multiple times a year, such as before and after birthdays. As occasions like these can bring lots of new things that can cast a shadow over our older belongings. Also holidays or a move can be a great time for cleaning out clutter. At times even things that are given to the kids as gifts that are not necessary or they already have, will instead be given to a child in need. My little ones will be fully aware and this serves as a teaching lesson in giving back.

It’s simple …

declutter your home

change it to simplify

organize it

leave only those things that spark joy

⇒ get rid of old/bad habits + turn your home into a clutter-free space

It’s changing your relationship with things you own, taking control and freeing space in your home and your life. I believe this method will help you process things as being just that, things. I also remind myself to remove the guilt that can come from letting things go and see them as something that no longer serves purpose in my life. Once you begin to change this behavior of surrounding yourself with stuff, you’ll shop more consciousness and truly surround yourself with meaningful objects. Otherwise you will continue to label things as “necessary” and never let go of anything.

Hope you’ve had a great weekend.

-Ana

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Life Perspective After Chiari + Syringomyelia Diagnosis

When I was diagnosed and operated for Chiari 1 Malformation I had three young little ones, my oldest being in kindergarten at the time. So, I arrived to the ER in May 2013 and never imagined the diagnosis that would result from that visit.  You can read more in depth of my story in my post titled In 2013 Life Began with Chiari + Syringomyelia So, after the neurosurgeon came in to my hospital room and told me I needed emergency Craniotomy or brain surgery, I requested to leave home to get things in order before the surgery. The mom in me wasn’t ready for surgery, I wanted to get the house in order before my absence. I can’t ever seem to get my mind to stop, it just never stops. I was in observation for a couple days before my surgery day and during this time I was able to do homework with my daughter from my hospital bed. I was also able to inform her school of the situation that the family and I were having. It really did take a village to get through surgery and recovery.

 

Then you fast forward to 2017 when I had Laminectomy surgery for Syringomyelia, this time I had six little ones – and still do. The recovery hasn’t been easy but it’s also helped me see my husband and the little faces of God’s perfect creation looking back at me. Children really do give you the inner strength you thought wasn’t in you, the courage and fight you thought you didn’t have. I now, few years later look at this disease in a different perspective. I’m not well, probably won’t ever will be and that’s OK. It’s about accepting things for what they are and stop trying to change things that can not.  If I decide to physically shop at a store, I have to know the store, I have to know the layout, so that my shopping trip is as quick as possible. I like to call this my new normal as opposed to something being wrong. There is no normal, there is no right or wrong way your health should be. Also, know that you don’t have to try to make other’s understand what you’re going through, try to explain this rare disorder you find yourself living with. This could be such a burden and so frustrating. If you have even one person you can rely on, that’s great and if you know of another Chiarian, lean on them! Also, feel free to be present in your pain, know it’s OK to not have a good day when living with Chiari, especially when this disease is physically unseen, it’s an unseen disability.

-Ana

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Top 8 Kitchen Essentials For Large Families

I like my home to be as close to clutter-free as possible. So, in the kitchen I like to have things that serve dual purposes for instance, a toaster oven that can toast and bake. There are many kitchen appliances that can help large families to accommodate cooking in larger quantities which is what you’ll find below, my top eight kitchen essentials I own and that you should too. Although these will make cooking in large quantities easy, this will also help any size family.

This KitchenAid Mixer and Beater Blade attachment can help you make anything from banana bread to cake. A few years ago we began to make the children’s birthday cakes using this mixer.

This Hearth and Hand with Magnolia large footed tray can be used from displaying cheese to a cake stand.

The Rachel Ray 12 1/2 inch non-stick pan makes cooking and frying in large quantities such a breeze.

This is our Presto Griddle, it’s a multi-use griddle, it’s non-stick and heats up quickly.  I can make anywhere from 6 to 8 pancakes at one time.

This KitchenAid Convection Countertop Oven helps toast up to 8 slices bread to waffles. The convection feature just means it heats up quicker than a conventional oven.

So for time sake, I use this Black + Decker to cook rice.

This is our KitchenAid Blender. We make anything from the babies puree to milk shakes.

And lastly this one is not a gadget but still a kitchen must have. This is an over the door hanger, storage and bag holder. Tip: Get one to match the color of your kitchen cabinets.

– Ana

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Syringomyelia – MRI Post Surgery

I had an MRI following my November 7, 2017 Syringomyelia surgery. I had a syringo peritoneal-shunt placed, this shunt will remain in my body forever. This is the procedure that helps divert fluid from one space to another. The name for the shunt is given by the doctor and it’s based on where they start and end. The decision to do this procedure depends on the person’s health situation and the surgeons preference. A syrinx is also most commonly known to be a side effect from another health condition, in my case, I have Syringomyelia because I have Chiari 1 Malformation. A way the doctor would know if a syrinx is present is by performing an MRI of the spine. When I was diagnosed In 2013 Life Began with Chiari + Syringomyelia an MRI of the entire spine was immediately ordered to look for syrinxes. My most recent MRI was done a couple of weeks ago and shows how my syringo peritoneal-shunt has been diverted successfully to the peritoneal space or my abdomen.  It’s always good to continue to check on the shunt because it can fail after having had successfully worked. The failure of the shunt working may be due to various reasons one, the catheter becoming clogged and can no longer able to divert the fluid from one space to another. This failure in the shunt can be seen by MRI, the shunt will show being refilled with fluid or enlarged. However, one way of knowing a failure in the shunt is that you will notice the symptoms returning. My recovery from Syringomyelia surgery is expected to take about a year. I’m still feeling the numbness on my left side, weakness in my legs, numbness in my neck area and back which can only be described as cape like, among other things. The neuropathic pain I have is a type of pain that is difficult to treat as this is damage caused to the nervous system. However, it is found to be common in Syringomyelia patients.  As far as knowing for sure the long-term outcome after surgery, for Chiari related Syringomyelia although surgery will reduce the syrinx, research has shown to stop it from growing 80% of the time. Surgery however still doesn’t always provide significant improvements in symptoms and many people will still experience pain and other symptoms after surgery.

February 2018 Post Surgical MRI

MRI – On the right showing syrinx and on the left showing post surgical placement of shunt.

-Ana

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Eczema + Food Allergy Alerts For Kids

My children have sensitive skin and this has been a struggle for some time. Not all, but most have Eczema, Atopic Dermatitis. Eczema consists of dry scaly and itchy skin, peeling and redness. The main visible complaint is behind the knees and on the arms but it can also appear in other areas. We’ve had to change things like dish soap, laundry detergent and fabric dryer sheets to ones from brands like all Liquid Laundry Detergent, Free Clear for Sensitive Skin, 46.5 Fluid Ounces, 31 Loads or Arm & Hammer Liquid Perfume and Dye Free Dual He, 50 Fluid Ounce These brands in particular carry a selection for sensitive skin, are free of dyes and perfumes. These changes have prevented my kids from getting major flareups, getting irritated and ultimately itchy. Their dermatologist has recommended over the counter hydrocortisone and brands like CeraVe, Aveeno and Eucerin, to name a few. And none have worked. I’ve also tried prescription creams, but even using these have not given us any results. So, I will share with you what has brought my sensitive skin little’s some relief, all from the brand TruKid.

For Eczema
⇒ Hair and Body Wash TruKid Eczema Soothing Face and Body Wash, Unscented, 8 Oz

⇒ Bubble Bath, this one has Oatmeal, Aloe and Vitamin E TruKid Eczema Bubble Podz, Natural Bubble Bath with Oatmeal, Aloe & Vit E., Unscented, 24 count

⇒ Body Cream TruKid Easy Eczema Cream, Soothing relief therapy, Unscented, 4 Oz

⇒ Serum Spray, I keep this one in my diaper bag, it’s small and best of all, a spray. TruKid Rockin’ Relief Remedy, 100% Natural, Rash & Dry Skin Soothing Serum, 1.78 Oz

⇒ Sunscreen TruKid Sunny Days Sport, Mineral Sunscreen SPF 30, Water Resistant, Broad Spectrum, Unscented 3.5 Oz

I also have one of my kids with food allergies. In the beginning of each school year his pediatric allergist will give us new Epi-Pen’s to have. We receive two, one Epi-Pen we will keep and the other we will give to the school nurse.

Food Allergies
⇒ Epi-Pen – We have attached to the zipper of our diaper bag, these pull charms let’s everyone know that there’s an Epi-Pen inside. These have come in handy say on our trips to Disney when we may forget to let security know there’s an Epi-Pen inside. EPIPEN INSIDE Medical Alert Black 1 inch Zipper Pull Charm

He’s young, yet has responsibly learned the foods he can’t eat. I still however have him wear allergy alert bands, he wears two, one that read “PEANUT ALLERGY” and a second one on the other wrist that reads, “FISH ALLERGY.” He wears these all the time, even during bath and bed time. Although the bands I have are no longer available, these from AllerMates are my next option if whenever mine need to be replaced. This one for peanut allergy AllerMates Kids Medical Wristband – Peanut Children’s Medic Alert Allergy Awareness Bracelet (2 Pack) or this one Allermates Kids Allergy Health Alert Multi Charm Wristband that you can customize to show your child’s specific allergies using charms.

Adult Relief from Eczema or Atopic Dermatitis this has been the only thing that has worked for me. Simply. The. Best. For hands this cream in tube form from Working Hands  O’Keeffe’s K0290004 Working Hands Hand Cream, 3 oz., Tube   O’Keeffe’s K0350002 Working Hands Hand Cream, 3.4 oz., Jar
and this helps your feet from cracked or dry heals O’Keeffe’s for Healthy Feet Foot Cream, 3.2 oz., Jar

Xo-Ana

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Specific Must-Haves For Baby + Mom

There’s one thing you’ll notice when you’re pregnant is how quickly people want to chime in and tell you what you need. But if you’re a first time mom, you’ll quickly realize the many choices one has for these items. So, I’ve created a list that will help you get items that you need – the exact items, a few of course – don’t want to make this overly long. I won’t list things like onsies because, we all have our own unique style and an idea of how we want our little ones to look. All these are specific must-haves for baby and Mom. They have worked for me and hope they will for you.

GEAR

Stroller ⇒ No one tells you that there is such a thing as a Travel System, this includes the stroller and car seat! This is the Evenflo Pivot Modular Travel System, Sandstone As for a car seat cover Nursing Cover, Car Seat Canopy, Shopping Cart, High Chair, Stroller and Car Seat Cover for Boys and Girls – Best Stretchy Infinity Scarf and Shawl – Multi Use Breastfeeding Cover Up – Arrow Pattern living in Florida Dream Baby Stroller Fan, White/Blue – 2 Pack makes these a must.

Swing/Sleeper ⇒ This Fisher-Price Rock ‘n Play Sleeper, Luminosity is a life saver in times when you need a few minutes to shower!

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Crib + Playpen ⇒ I have a small space to work with, so this Dream On Me Full Size 2 in 1 Folding Stationary Side Crib, White is perfect for that and this Infant Nuna Sena(TM) Aire Travel Crib, Size One Size – Grey playpen can be set up without having a second person to help, because it can be done one handed in seconds. And if you need extra padding for the portable crib and/or playpen LA Baby Waterproof Portable/Mini Crib Mattress, 2″ – Made in USA with Easy to Clean, Hypo-Allergenic, Anti-Microbial & Non-Toxic Cover, 24 x 38 – Made in USA is fantastic.

Diaper Bag ⇒ This  Skip Hop Forma Travel Carry All Diaper Backpack with Insulated Bag, One Size, Jet Black is so spacious – especially when packing for more than one baby.

BATH TIME

Bath ⇒ This  Angelcare Bath Support, Aqua bath tub is not only easy on the eyes and it can also be hung to dry or this  Summer Infant Comfy Bath Sponge  if you opt for a bath sponge. I use the Baby Buddy’s Natural Baby Bath Sponge 4-5” Ultra Soft Premium Sea Wool Sponge Soft on Baby’s Tender Skin, Biodegradable, Hypoallergenic, Absorbent Natural Sea Sponge sponge over the bath cloths only because they dry quicker

Spout Cover ⇒ This Skip Hop Moby Bath Spout Cover Universal Fit, Blue does the job!

 Towel ⇒  Have loved these Puj Hug Hands Free Hooded Infant Towel, White for a while now.

Shampoo + Body Wash ⇒  I have been using Baby Dove Tip to Toe Wash, Rich Moisture 20 oz and Baby Dove Lotion, Rich Moisture 20 oz for close to a year now and it’s fantastic!

Bath Brush to Prevent Cradle Cap  This Bean b Clean Cradle Cap Scalp Massaging Brush or Baby Bath Silicone Brush by Fridababy | DermaFrida The SkinSoother Baby Essential for Dry Skin, Cradle Cap and Eczema (2 Pack) will not only work if your baby starts to develop cradle cap but it’ll help to prevent it – use it during bath time. The Frida is just a newer version of the Bean B and both will work.

FEEDING BABY

Pacifier  This Natursutten BPA-Free Natural Rubber Pacifier, Orthodontic, 12 Months and above pacifier and this pacifier clip  Leather Suede Braided Pacifier Clips By Zelda Matilda. Handmade, Expertly Crafted, Highest Quality, Beautiful! For Boys and Girls

Nursing Pillow ⇒ This Boppy Nursing Pillow and Positioner, Sketch Slate Gray serves multiple purposes as baby continues to grow. And this light will come in handy when nursing Born Free Nighty Night Nursing Light, Neutral in the middle of the night. A must!

Teether  The handles on this Sophie La Girafe – So Pure Teether Giraffe makes it easier for baby to hold.

Formula Dispenser ⇒ I’ve been using  Philips AVENT Powder Formula Dispenser and Snack Cup, Pink and when you stop the formula feeding, you can use it as a snack cup.

Sippy Cup Toddler Zoli ‘Bot Xl’ Sippy Cup, Size One Size – Pink I. Love. These. The flexi straw feature is amazing! It can also be found on these Munchkin Click Lock Weighted Flexi Straw Trainer Cup, Orange, 7 Ounce The difference is that the Munchkin cup is more affordable but the concept remains the same.

Bottle Drying Rack  You can get this  Great Essential Boon Grass Countertop Drying RackGreen or this Boon PATCH Countertop Drying Rack which I use in the kids bathroom to hold their toothbrushes and toothpaste. Also, accessory works great to hang the pacifiers or bottle nipples Boon Twig Grass and Lawn Accessory White

Bibs ⇒ aden by aden + anais Little Bib Life’s A Hoot, 3-Pack Such a beautiful design on these. And these  aden + anais burpy bib 2 pack, paper tales burp cloths.

MISCELLANEOUS

Receiving + Swaddling Blankets  I like these  aden + anais Muslin Swaddle Plus, Sweet in Pink or aden by aden + anais Disney Baby swaddles, mickey and have found that the one’s that say “muslin” don’t shrink and get softer after each wash. As for a thicker blanket, these  aden by aden + anais Stroller Blanket, Dove stroller blankets are great. I also use these  Little Unicorn Cotton Muslin Swaddle Blankets (set Of 3) – Cabana Stripe, Yellow, Orange, Pink and they’re just as good as the Aden + Anais!

Nose Aspirator ⇒ Fridababy NoseFrida Nasal Aspirator with 20 Extra Hygiene Filters and the extra filters Nosefrida Hygiene Filters

Ear Thermometer ⇒Braun Digital Ear Thermometer Suitable for Baby, Infants, Toddlers, and Adults, ThermoScan5 IRT6500 and the lens filters Braun Thermoscan Ear Thermometer Lens Filters (20 Pack)

Hamper ⇒ This Household Essentials 148 Hanging Cotton Canvas Laundry Hamper Bag | White is great when space is limited. I hang it on a hook behind the door or in the closet.

Nursing Pads ⇒ These Lansinoh Disposable Nursing Pads, 36 count are the absolute best I’ve tried. As for milk storage bags Lansinoh Breastmilk Storage Bags With Convenient Pour Spout and Patented Double Zipper Seal, Ideal for Storing and Freezing Breastmilk, 100 Count, BPA and BPS Free

Baby Book ⇒ This World of Eric Carle, The Very Hungry Caterpillar Soft Book  

 DON’T FORGET ABOUT YOURSELF WHEN PREPARING FOR BABY

Hospital Gown ⇒ I absolutely love my hospital gown. There’s something to be said about feeling comfortable and beautiful in what you’re wearing at the hospital. I’ve worn it at my deliveries and at my other surgeries – just remember to size up to be feel more comfortable. Gownies – Labor & Delivery Maternity Hospital Gown, Nicole S/M pre pregnancy 0-10

Have a great weekend!

Xo-Ana

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