Periventricular Leukomalacia

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    When your heart is broken twice

    I was an ordinary girl, I grew up, got married, moved to small town Oklahoma.
    I was blessed to have two beautiful little girls. My oldest was healthy and strong.
    My youngest, was anything but. My little one was a fighter from her very first breath.
    She had to work extremely hard for that breath, and everyone that followed. She was born almost 3 months early. She was diagnosed with a laundry list of problems. She had Angelman Syndrome, Chiari, Ehlers Danlos, Spina Bifida, Epilepsy, Cortical Visual Impairments, Periventricular leukomalacia, and had 3 holes in her heart.
    My oldest took to her role as big sister amazingly, she was the best friend, and biggest fan of her sister. Even though life for my oldest baby would never be the same, and would never be fair, and slighted her at every turn, you wouldn’t know it by looking at her. She had the patience of a saint, and the resilience to match.
    We were flooded with a list of things my baby would never do, she was termed not compatible with life. What a horrible term that was.
    Well one by one she marked those things off her list of things she would never do! My two girls weathered this storm with grace and humor.
    There were many surgeries, and pain and sleepless nights, and slowly I got over the grief of what I thought my family would look like, and my heart healed, stronger for it.
    At age 6 for my youngest, we thought things may just be ok after all. Until April that is.
    My youngest was going in for another surgery, she had just started kindergarten, and loved riding the school bus. She went in for surgery, and was discharged two days later, I brought her home from the hospital and her sister welcomed her like we had done so many times before.
    I tucked her in for bed like every other time, her sister went to bed as well.
    I woke up early as usual only to find that my world had ended, and my baby girl, my little fighter was no longer with us here, she had passed away in her sleep.
    From that moment it was like gravity never existed. The days ran together and the nights were painful and long.
    When I had to tell my oldest the scream she let out still resonates in my soul, and was when I knew what it felt like to break a heart twice. It was a sound of pure unbridled grief and pain.
    It is 3 years now since that day, and my oldest baby is turning out to be as strong and compassionate as she always was.
    I have become almost a participating human again, I swear it was a year before I took a breath again, and it was so hard.
    Her and I are proving to ourselves that we can do this, and while it is the hardest thing we have ever done, we have had help from our family and made some connections along the way.
    We can do this!

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    Letter to my teenage self

    Over the last year I have really pushed my acting career but also doing things for myself.
    If I could pen a letter back to my teenage self I would say that life gets better. That the people that didn’t believe in you or bullied you will make you #Stronger . And that maybe you’ll become an inspiration to other people. I struggled academically at school due to the learning difficulties both my conditions have given me one is a brain injury from the lack of oxygen at birth (#PeriventricularLeukomalacia ) and the other one is due to having #NoonanSyndrome where we don’t send the right signals throughout our bodies. All I want to say is the despite the #Anxiety and #Depression you will be amazing and be successful in your own unique way.

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    The Roller Coaster Ride of a Special Needs Life

    My son Nathan was a twin who was born at 33 weeks gestation November 2, 2009. I thought I was having a normal pregnancy. But I went into labor at 33 weeks and had an emergency C-section. Jenna was removed first. A beautiful healthy baby girl. They placed her in my arms right away. When it came time to take Nathan out, the room grew quiet and I saw several other health care hurting over. I heard no cries. Then finally the cry of my baby boy. And I got to hold him in my arms too.

    As time passed, I noticed he wasn’t developing as quickly as Jenna but I was told that girls develop faster than boys. Nathan had an MRI at 9 months old and the results indicated #PeriventricularLeukomalacia. He was then given the diagnosis of spastic diplegia #CerebralPalsy affecting his legs and core strength. The past nine years have definitely been a challenge but all worth it. He is walking with a walker at this time and we’ll walk with his hand braces just not that well yet. The deep in my heart I know that little boy is going to walk someday. Here’s some pics if his progress through out the years. I don’t know what got into me today, I just felt the need to share.

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    Gratefully Grieving

    Have you ever had a feeling that you almost can’t describe? A feeling that you’re really not even sure if anyone else has ever felt? Maybe it’s embarrassing or you think nobody else will understand so you keep it to yourself. I have this feeling almost daily.

    My daughter was born into mass chaos. She was completely lifeless and grey. She was rushed out into the hallway and resuscitated and immediately put on a ventilator. Within an hour she was on life support and put into hypothermia. It turns out that we had what is known as a fetal maternal hemorrhage and it basically means that her body bled into mine while she was still in the womb. She had no blood in her body, which meant she wasn’t getting oxygen to her brain. For days the doctors prepared me for her to die. The neonatologist was constantly telling me how sick she was and how he’s never seen a baby with FMH with as little blood as she had bounce back, and at the very least she would be severely brain damaged.

    When she was 14 days old she had an MRI that showed massive brain damage. The neurologist, a neonatologist, and a few others came in on day 15 and explained that she would never live a normal life. She would never eat on her own, she would never talk, she would never walk, and she would be solely dependent on her dad and I for the rest of her life. They diagnosed her with a condition called #PeriventricularLeukomalacia secondary to #HypoxicIschemicEncephalopathy. It meant that she would have #CerebralPalsy as well.

    Fast forward 2 years and she does everything that she was never supposed to do, except walk. She talks constantly, she feeds herself everything that we eat, she’s never had a feeding tube, and she’s working hard on motor ability so that eventually she can walk.

    Here’s where that weird feeling comes in…

    As her mom who once thought she would live in a vegetative state, I am obviously overjoyed that she couldn’t be further from a carrot, but I’m also sad. I’m sad for her that she has to work so hard at everything, but I’m so thrilled that she has abilities that exceed all expectations. I’m sad that she’s 2 and instead of going on Friday morning play dates we head off to physical therapy, but I’m happy for access to amazing therapists who are helping her everyday. I am extremely thankful for a daughter who tells me “love you too!” but I grieve the daughter who I chase around the kitchen and licks the spoon after we mix up brownies together.

    I get so caught up in how I think I “should” feel rather than just letting myself feel, and I think a lot of special needs moms do the same. We have it engrained in our minds that we should be grateful for EVERY LITTLE THING, and we are, but it’s okay to also grieve those things we don’t have and don’t get to experience. Maybe I’ll start referring to this as grateful grieving so I feel okay about letting it happen. You should do the same if you find yourself in this position. Give yourself grace mama, and remember that emotions are normal and we’re buckled into this rollercoaster together.

    #NamelessFeeling

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    Why I still use a crutch as a safety net #Disability #NoonanSyndrome #ChronicPain #PeriventricularLeukomalacia

    Three and a half months ago I had surgery on my ankle to replace a ruptured tendon and realign the ankle back into place from an injury I sustained two years ago. Due to misdiagnosis at the start and drs not listening to me ( I know my body better than anyone) I finally got the treatment I needed. Which was surgery, it was during my appointments with my consultant that he also noticed that there was a way of fixing the way I walk but also the deformity that my foot has been under through the way I walk. Due to my short Achilles’ tendon I walk on the side of my feet and tiptoes. My balance is also affected as well and I have a lot of chronic pain and fatigue so there are day’s when I really struggle to get about.

    I’m able to fully weightbare now and there’s days I don’t need my crutch. I still have a limp and the pain in my hips can be painful from the sciatica.
    The only issue is, I feel that I need my crutch to prove that I have a disability when I park in the blue badge bays, priority seating on transport to the assistance through the airport which I was fortunate to use a few weeks ago and will use it again. But unfortunately I’m scared , because I feel without it people will look and judge me. When will the anxiety for me to prove or not feel judge go away?

    Soon I’ll become dependent on the crutch which I don’t want either. I’m already happy in myself that I can now live a more relaxed life when it comes to work. And that I can finally say no to that extra overtime and not feel guilty about missing work for my various hospital appointments . But will I finally be happy in myself to ditch the crutch except on the really bad days?

    I have two conditions both can affect me the same and differently.

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    why I take the amount of medication I need for my condition?

    I suffer with Noonan Syndrome I also have Periventricular Leukomalacia. The Noonan Syndrome affects my heart, muscles, stature, balance, cognitive issues, anxiety, depression I have chronic pain and fatigue with it also I bruise and bleed easily with it also. The PVL affects my legs I have spasticity, tight muscles and my Achilles tendons are very short.

    So when people see my weekly pill box, that has each day and the four times a day to take each medication, they are often shocked by how much they see. I get the usual comments 'ohh I bet your rattling after you take that lot' or thats a lot to be taking a such a young age and my favourite ' have you ever tried to cut down on what your taking. The answer to those are no I'm not rattling, yes it is a lot to be taking at 29 and yes I have tried to cut down and guess what its made my condition worse.

    It's not fun having to take all this medication, and I must admit I have on good days not taken as much because I feel fine, however a day or two later the feeling hits me like I've been hit by a ton of bricks and then I'm dragging them through the mud. I was fortunate when I was younger that I didn't need to take as much medication, but as I get older this will either stay the same way or it will increase. Either way it is a part of me now. And that I use it as a reminder to people that without this medication, I wouldn't be able to do and achieve half the things I'm able to do because of them.