Layla’s journey with Hydrocephalus 

On valentines day 2011, I received a phone call from my daughters baby sitter while at work. She told me Layla might be sick and she had a low grade fever. I knew that I should come and get her, and take her to be seen by a doctor. Layla was only 10 months old at the time, and with her being so young I took this very seriously. 


I tried to call and get her in to see the pediatrician, but their office was already closed. My next best option was to just run her to Carlisle Regional Medical Center to be checked out. When we got there they asked me her symptoms and I told them she has cold symptoms with a low grade fever. The doctor (Dr. Scott Rankin) took a look at her and told me he’d be right back. When he came back and started checking her out, he spent a really long time checking her head- and asking me about her soft spot & developmental milestones. He seemed confused as to why my 10 month old didn’t crawl or sit up unsupported. I however thought that she was just going at her own pace.


Dr. Rankin left the room again and was gone for about 45 minutes and when he came back and started explaining to me what he thought was going on I felt my body turn cold. He said “well miss I think you can just give her Tylenol for her mild cold, but I think there’s something more serious going on here. At her age her soft spot should be virtually closed, and hers measures 10cmx10cm.” At this point I’m feeling ill; I don’t know if I even heard much else of what he said. All I could think was how did I not know this?! How could a mother miss this?! And WHY didn’t anyone else notice? The doctor told me to call down to speak with Dr. Deb Byler at the Penn State Hershey Medical Centers’ pediatric neurology center and schedule an appointment with her, well I did just that. 

Two days later we are meeting with Dr. Byler and they decide to do some scans of Layla’s brain/skull to see what’s going on. In the recovery room I could hear whispers about her head, and then the phone rang. Dr. Byler called down and spoke with another doctor that was helping us and he gave me the news that would haunt me for the rest of my life. “ma’am I’m afraid your daughter has Hydrocephalus. We are going to have to do brain surgery Imediately.” 

They explained hydrocephalus to us as a condition that you can be born with or acquire for several reasons. Basically her brain produces too much cerebral spinal fluid (CSF) and they need to put in what’s called a ventriculoperitineal (VP) shunt to drain the fluid from her brain to the peritoneal cavity. 

The next 4 days were such a blur for us. They admitted her into the hospital and said that she wasn’t allowed to eat or drink anything because they were going to add her on to the surgery list whenever they have an opening. She didn’t eat/drink for 36 longggggg hours. (they had her on IV fluids, but that doesn’t fill your belly up.) For 36 hours straight, I had to listen to my 10 month old scream and cry for food. She would cry until she fell asleep and wake up and start crying again. That was one of the worst things I have ever had to witness. It chokes me up just thinking about it. How do you explain to a 10 month old baby that they can’t eat?! It was awful.

 36 hours after admission they got her into surgery. They have you wait in a giant room with dozens of others waiting for their loved ones to get out of surgery. It’s a very tense environment, to say the least. The phone finally rang and they called me up to talk with Dr. Mark Iantosca who is the neurosurgeon that put the shunt in. Dr. Iantosca said everything went well and that I could come and see her in recovery. 

When I got there she was still pretty sedated, and had her head all wrapped up and her belly wrapped up as well. They had to shave her hair on top and along the side where she would need cut/drilled into. She had a 2″ long incision on the top right side of her head, two bor holes-(where they drill a hole into the skull) on the right back side of her head and a 2″ incision on her belly by her belly button. She was bruised the whole way down her right side of her body from them trying to place the shunt tubing.





They eventually sent us back to her room and sent us home 2 days later. 

She made it 4 months before she needed another operation. As you’ll see in the next photo, fluid began collecting along the shunt tract, leading us to believe it wasn’t working properly. 




With the issues she was having, they needed to replace the shunt. Around Fourth of July weekend; 9 days after she got sent home, she had to have another replacement surgery. 



She went yet another 4 months and ended up with a severe CSF/staph infection and was hospitalized for 2 weeks in Pediatric ICU. DUring this time she had two brain surgeries.

 


Layla had a total of 5 brain surgeries in a 10 month time span, thus resulting in permanent brain damage. She was later diagnosed with severe ADHD, and Autism spectrum disorder at 4 years of age. She has been in therapy since 13 months old, and still to this day does 15+ hours a week of therapy, and attends a private school for children with autism. 


I am so thankful for all of the doctors and nurses who saved my child’s life. If it wasn’t for Dr. Rankin at Carlisle Regional Medical Center, who knows how long we would have gone with her condition undiagnosed. I sent him flowers and a picture of Layla a few weeks after her 1st surgery to thank him. He truly is an amazing doctor! 

I am telling her story because it needs to be talked about. Hydrocephalus effects 75,000 Americans every year, and in countries like Vietnam, there are entire orphanages for children with hydro; it’s essentially where these kids go to die. 

Please help me spread the word by sharing this post anywhere and everywhere from now until October while we fund a Cure for Hydrocephalus. 


 September is Hydrocephalus Awareness Month #phfham2016. Please join me in funding research for #Hydrocephalus by donating here: 

http://www.active.com/donate/phfham2016

*donations are tax-deductible*

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Tomorrow will be a better day…

Tomorrow will be a better day. 

I got spit on, directly in the face today. Twice. But, tomorrow will be a better day. 

I watched my child struggle dressing herself, and become so upset that she screamed at me because she couldn’t get the buttons. But, tomorrow will be a better day. 

I’ve seen her fight to “turn off her brain” so she can go to sleep. Sometimes laying in bed awake for hours. But, tomorrow will be a better day. 

Sometimes, I hate that my child has to live the rest of her life with a brain injury. It will never heal. Once you lose brain matter, it will not rejuvenate itself. It’s not fair that innocent children have to deal with so many struggles and medical conditions. She is about 12 months behind her peers, developmentally. She gets so upset when she tries to do things the other kids her age are doing, and it kills me to watch her not always be able to keep up. Her aggressive behaviors are becoming a bigger issue, and that alone is terrifying as a parent. Outbursts/meltdowns are becoming increasingly worrisome, and it is devastating each time i have to stand by and watch my child hurt. I as her mother can only do so much to help, and to stay on top of the ball teetering trying to keep balance for our life. 

I know the scientific reason for these things, but holy shit is it heartbreaking to watch. 
   

 My sweet, blissful Layla I love you so much. Tomorrow will be a better day. ❤️

I don’t even like the circus….

It’s been quite awhile since I’ve written, and I can feel it. There so many things I want to say, but I am compelled to talk about the experience we had last night. You see, my daughter is amazing, and she loves to go new places and do new and exciting things. Her name is Layla, she is five years old and she is medically complex. Layla was diagnosed at age 10 months with Hydrocephalus and has had 5 brain surgeries because of it. As a result of going 10.5+ months undiagnosed and unshunted, the ventricles in her brain are permanently enlarged and she has significant damage to her frontal lobe. Layla was also diagnosed  with ADHD and Autism Spectrum Disorder at 4 years old. She is such an incredible  child and she is very loving, but she struggles immensely with social situations and becomes overstimulated very easily. We are still experimenting and testing the waters while we try to find activities/therapies/social groups that work well for her, and that she enjoys; and last night we decided to try the Lewis & Clark circus. 

   

 As soon as we arrived, the very first thing you see is a “carousel” with actual horses on it and of course my Layla wants to ride one of the horses. So after talking to the guy and having him reassure me multiple times that she won’t fall or have any issues, we (hesitantly) let her ride one of the small ponies. The horses start to move, and she’s all smiles! Holding on tight and so happy… 

  

…then the horse out of NO where decides to start to buck his hind legs out and she starts to panic and slide off the horse. I didn’t even have a second to think, I just started screaming “she has a brain condition I want her off that horse NOW! Get her down!!” I was trying to bust through the ropes and he finally grabs her down and she just lets loose one of the most intense public meltdowns we’ve ever gone through. With about 100 people watching us while she is crying, screaming, hitting, etc I drop to my knees and put her on my lap and rock her back and fourth while singing you are my sunshine, trying to get her to relax and calm down. I’ve never been so upset at myself for allowing her on that horse, when my gut was telling me no way. I feel guilty for putting her in that situation, even though there is no way to have known that would of happened. 
She wanted to ride him so bad and it just ended up in such a horrible way that I am just hoping she’s not scared of horses for the rest of her life. I’m thinking the horse could feel that she was unsure or nervous and that’s why he started to buck. But I STILL think of you’re going to advertise safe animal rides then you need to make sure you’re providing just that. 

On the other hand, I would like to say how absolutely nerve wracking it is to have to comfort your baby while they are in a total meltdown episode with 100+ people just burning holes right through you with judgment. I was offered no empathy, or any looks of understanding and it was really truly a hurtful experience. I was desperate for someone to understand, and to just give that smile that says it’s okay, and instead we were silently (and not so silently) judged by all of those people. It breaks my heart for my Layla because I know that this is something that will never change for her. She is going to deal with adversity her entire life for being different, and I don’t know how to make sure she’s prepared for that. I honestly feel like if we would have charged for spectators, we could have made more money than that shitty four person circus. 

I would like to ask my friends and family, that if you ever see a person in distress, don’t judge them. Even if they look like they are just being bratty kids, everything is not always as it seems. Layla’s medical conditions/disabilities are totally invisible. She doesn’t have an obvious wheelchair or something that says “I’m different” to the general public so when situations like this arise, people are so quick to judge. I had to choke back tears because my heart was shattered and broken seeing the way people were looking at my child. At me. At the entire situation. I KNOW what other people think is irrelevant to my life, but how do I explain that to her? How can I prepare my sweet, innocent baby for the inevitable? My heart is heavy, but we cannot allow what others think to keep us trapped in the house for the rest of our lives. She has just as much of a right as anyone else to take up public space, and if anyone has that serious of a problem with it, I dare them to say something to me. I am fully prepared for mama bear mode and will not hesitate to “educate” a bystander….loudly.  

    
 

You’re not old school, you’re uneducated.

Old school defined by Google:

used, usually approvingly, to refer to someone or something that is old-fashioned or traditional.
“amenities that my parents, being of the old school, still take for granted”

Old school defined by Badass Mother Feminist:
a term used by close minded, stubborn individuals who have no actual desire to educate themselves on what’s scientifically correct. Usually used when someone tries to gently educate, when referencing their own parenting “skills.”
Example: “We turned our daughter around to forward facing when she was 6 months old so she could see better. You can say what you want but we have had 4 kids already, and I think our old school ways have worked just fine!”

Don’t get me wrong, I know there are people who are old school in the sense that they like the traditional American way of life, and I totally respect that. I am not bashing folks who want to live a simple lifestyle. My issue is the people who like to hide behind the phrase old school when really they aren’t old school in the traditional sense at all, they are just too damn stubborn to admit that there may be a different way, because after all “they turned out fine.” My question to the people who say they turned out fine is, don’t you want better for your children? Don’t you want them to be better than just fine?!

We all have people in our lives who try to offer parenting advice, and then claim to be “old school.” This is a phrase that is worrisome when it comes to raising children. Since the dawn of time, we as humans keep evolving, keep researching, and trying to make the best choices for our families. For some reason, it seems to bother people when their “old school” advice isn’t taken, and a parent decides to choose the scientifically backed method for their kids. So here’s a list of mildly offensive things I have heard, and the truth as I see it.

“My 3 month old son’s favorite food is blended chicken noodle soup!”

I KNOW. Let’s all take a moment to gasp and clutch our sanctimonious pearls. But in all seriousness… WHY THE HELL ARE YOU FEEDING A 3 month old soup?! This was said on a mommy forum I frequented after my youngest was born, for those curious.
for some reason unbeknownst to me, American people are OBSESSED with wanting to feed their babies “real food” as they so lovingly call it. They give these insane reasons like: “she looks hungry for something other than breastmilk/formula.” Or “my son is already 14 lbs, he NEEDS real food.” And even “my son has been looking like he’s hungry for something other than milk; he’s 9 weeks old.” When I hear stuff like this I cringe. These methods are not “old school”…. They are unsafe, and there’s absolutely no scientific evidence to support them. There is, however, scientific evidence to support only breastmilk or formula until at LEAST the age of 6 months. Many health organizations recommend baby be exclusively breastfed, or bottle fed until 6 months of age; NOT 4-6 months. Those organizations include: World Health Organization, American Academy of Pediatrics, UNICEF, American Academy of Physicians, and Health Canada just to name a few. There’s many reasons supported by science as to why you should delay solids until at LEAST 6 months of age, such as allowing baby’s gut to mature. Infants have what is called an open gut, which basically allows for larger proteins to be passed through into the bloodstream. This is ideal for the early stages of life because the nutrients of breastmilk are easily used and digested by the body. However,. If solids are started while the gut is still open, this could lead to some unpleasant issues like gas, diarrhea, constipation, bloating, allergies, obesity, etc. (To read more about the benefits of delaying solids: http://kellymom.com/nutrition/starting-solids/delay-solids/)

 

“my daughter started sleeping through the night as soon as we added a little cereal to her nighttime bottle. I bet if you do the same, it will work!”
I get it. It’s been 3 months of sleepless nights, the baby is fussy, and you feel like you’re going to go insane. Grandma says to put a little cereal in baby’s bottle, and they will be sure to sleep through the night….. Sounds too good to be true, right? ‘Cuz it is. Let me preface this by saying, the only reason you should EVER thicken baby’s bottle is if treating a health condition (like reflux) under the supervision of a medical professional. The reason being, it’s possible for baby to choke on or aspirate the cereal. Not to mention, I DID get desperate one night and try this almost five years ago with my oldest child, and let me just tell you, it did nothing but constipate her and make her vomit. She probably vomited because when you put cereal in baby’s bottle, you have to widen the hole in the nipple to make it come out. This can cause babies to choke, as well as over eat. Just let your baby do normal baby stuff, and stop trying to force an infant to sleep through the night. It is the biological norm for babies to wake frequently wanting to nurse or be comforted. You’re not doing anything wrong, baby will sleep through the night when he or she is ready.

 

” I know they are cute and you want to hold him all day, but sometimes babies NEED to cry! It will teach him that he can’t just cry for attention, and plus it’s good for his lungs.” (baby was 6 weeks old)

 

Crying it out. This seems to be a hot button topic, and anyone who knows me knows that I’m not one to shy away from these discussions. When you choose to become a parent, you are choosing to go through sleeplessness WILLINGLY. I get so sick and bloody tired of these people who think something is wrong with a 6 week old newborn because they don’t sleep through the night yet. I will tell you right now it is a rarity that a 6 week old sleeps for 8+ uninterrupted hours. Babies crave the warmth of their parents arms, they crave that comfort and love. (And boob if you’re breastfeeding.) Babies are also SUPPOSED to wake for frequent feedings….. THIS IS NORMAL. Psychology Today says that letting a baby cry it out results in a less intelligent and over all less healthy baby, as well as a more anxious and uncooperative child. These traits can also be passed down to the future generations. (link to the article I cited: http://www.psychologytoday.com/blog/moral-landscapes/201112/dangers-crying-it-out)

 

I am not going to say that I am a perfect parent, because that would be a bold face lie. I make mistakes, I screw up, sometimes lose my patience too. The key here is to grow from your mistakes…. learn all that you can from your own experiences, and then apply it down the road. I’m pretty sure all mothers who have Facebook pages have heard the Maya Angelou phrase: “Do the best you can until you know better. Then when you know better, do better.” And it physically pains me to quote it, simply for that fact that it is like the anthem for all of the Facebook crusading mothers, but it really does fit when it comes to parenthood. We all just do the best we can, but when you get smacked in the face with science and choose to ignore it…. you’re just cheating yourself and your kids.

–BAMF

Fat girl stereotypes I’m sick of dealing with

I am a fat girl. I have been a fat girl literally since I was born. I think there is an insane amount of prejudice towards fat people, but even more so fat girls. For some reason, the majority of people think it’s totally acceptable to voice their opinion on someone else’s body. So let’s discuss some of the stereotypes of fat girls, shall we? (specifically girls, because I still haven’t grown a penis.)

1: fat girls have low self esteem.

A fat girl couldn’t POSSIBLY like- let alone love- her body. She just puts on a facade for others. So because I wear bigger jeans than you, I should feel shitty about myself? Interesting how that works. Contrary to popular belief, not all fat girls are down about how they look. I’ve actually been told before that I have “a pretty face” and “if you would lose a couple pounds you would really be gorgeous!” I can’t even explain how offensive and insulting those comments are. Personally, I wear a size 22/24 and I 100000% love and accept myself….and I happen to think I am -ahem FUCKING GORGEOUS! Every stretch mark, (which I didn’t get until I had two children BTW) every lump and bump, every square inch of my being. I know it’s hard to imagine an obese (*GASP*) woman could truly love who she is and what she looks like, but I’m living proof anything is possible. 😉

2. Fat girls are desperate, and will have sex with anyone who shows interest.

This one REALLLLLLY irks me. Because I’m fat I have no self respect? I get no attention from others, so the first person to show an interest in me, I sleep with? Umm. No. If you can’t stimulate my mind with your intelligence, you won’t be stimulating me anywhere else, either. There is nothing that makes fat girls different than any other type of human woman, so just stop with that.

3. Fat girls are lazy/unhealthy.

Fat girls are lazy and don’t live a “healthy lifestyle.” This one really bothers me a lot. Because my body is bigger than yours, that means I’m in poor health? I’m very healthy, actually. I take one (NOT weight related) medication that I’ve been taking since I was a kid, and that’s it. I don’t drink, I quit smoking 2.5,years ago, I go on walks and hikes with my husband (imagine that, someone loved me enough to marry me, even though I’m fat!) and our two beautiful children, we go to the park and run around, play soccer, hide and seek, etc. I think it should go without saying, someone else’s health is between them and their doctor. Them being overweight does NOT in any way, shape, or form directly impact your life. In short, fat girls are no lazier than any other type of girl…so SHHHH!

4. Fat girls need to “dress for their size.”

I gotta say, many moons ago I’ve actually said things like this. But becoming an adult, and a mother has changed my outlook drastically. People should dress however they are comfortable. Wear as little or as many articles of clothing as you want. The size of your body doesn’t determine what you can or can’t wear. If wearing a bikini is what makes you happy, then rock that shit! If you find that you’re out in public, and you see me wearing shorts and a tank top, and for some reason this bothers you, do yourself and everyone around you a favor and keep it to yourself. It’s VERY easy to shift your eyes in the opposite direction. In short, keep your asshole opinion about my body and clothing choices to yourself.

It’s important to remember, that all human beings have feelings…yes, even us fat girls. It’s hurtful and disrespectful to voice any type of concern for how we look/our “health”/our clothing choices. All you need to do is just treat us fat girls with respect, and common courtesy, because the size of my stomach doesn’t determine who I am or how valuable I am to the world.

-Badass Mother Feminist