Today I opened my eyes as you stood before me, half my height. Feels like only weeks have passed since I seen your beautiful face for the very first time. I would hold you in my arms singing all my loving while you’d sleep soundly. I embraced you while you cried, were fussy, happy, and just because. Never would I have imagined that this little bundle in my arms would have changed my life so radically, so unexpectedly those first few months. Soon the excruciating seizures came, those deplorable seconds turned my world upside down and shook me to my core.

I would hold you. I would hold you gently in my arms and count, while you cried out in between. I held you against my chest and pleaded with God when I looked down upon you. When those seconds felt hours, I would hold you and fight back tears that would burst profusely from my eyes.

The following months have been recovery. Countless hours of agonizing shrieks, blows to my body, sleepless nights, and despairing thoughts plagued my mind. I would watch with sorrowful eyes as you’d struggle to drag your body across the ground using only one arm. I would watch you grow angry and tired with your limbs not functioning the way you’d want them to. I held you in my arms and cried. Cried for all the things I wished would disappear, cried for all the things you couldn’t do. 

I pushed, compelled to see your light. To see you conquer all that was given to you. To see you smile as you stood for the first time, legs shaking. To see you take those not so graceful first steps, but overcome with joy as you’d fall onto your knees. Only to get up and run towards me to be embraced once more. To see the hand that was only there, to strike keys on a piano, to strum a guitar and serenade me with it’s beautiful sound. To see you laugh until you’ve ran out of breath, to giggle on anyways. To hear your voice, that was buried deep within your chest. Your voice that made my whole world suspend into silence to hear you speak. To hear I love you from your small lips that filled my eager ears, and completed my soul. To see that smile, teeth gleaming with pride once you’ve accomplished something you’ve done a thousand times, or have just learned. 

To see you grow into this magnificent man, radiating with passion in all your glory. A man that has changed every aspect of my being. Who has taught me true humility, the ever loving feeling of carrying a child and being a mother. Who taught me the sun always shines after the worst of storms.

I will always love you. Fearlessly, endlessly, and forever.

Skylar never ceases to amaze me. We went to the doctor this morning to get a new script for physical therapy and headed down south to see the neuro about his seizures he had last week. We spoke for a very long time, he answered all of my questions. There was only one other patient there so it was really nice to have some one on one time with a specialist, because he has 4 offices and so many patients to work with. He told me from what I described Skylar had complex partial seizures. Skylar did wonderful during the hook up of the EEG and only complained a few times during the entire recording. The tech was such a lovely woman, and was so helpful. All in all Skylar was awesome because he doesn’t even like me brushing his hair. During the 40 minutes he was hooked up there was a lot of seizure activity going on in the left part of his brain, he almost had 8 seizures the entire time but there was no trace of hypsarrhythmia. And no more infantile spasms! We are uping his dose of his medication, getting some blood work done later this week to check his levels. After he was all done, the tech gave him his first lollipop ever, and now he’s obsessed. We got him a giant bag on the way back. Crossing my fingers and praying we get them back under control. 

Also, Skylar is exactly three feet tall now, he’s more than half my height and almost 3. You are so awesome my little giant, I love you so much. 

Skylar had another seizure. Today was no different, when I went to get him up from his nap so I could grill dinner he was incredibly happy. As soon as I took him outside I knew, something clicked in me the second I made eye contact. He wasn’t sitting up, very distant. I sat down on my knees in front of him and watched him like a hawk, everyone around me kept saying repeatedly that he was just tired. I was positive he was acting exactly like he did before he had his last seizure in March. We brought him inside and I just kept staring, watching every movement, trying to get a reaction out of him, clapping my hands, saying phrases to get some response and I got barely anything. This went on and off for a bit, I couldn’t tell what was happening because I’m only familiar with the seizures he’s had from his Infantile Spasms.

Ian held him for awhile and we were debating and I kept searching online trying to figure out what the fuck was happening. If he actually was having a seizure, checking him temperature, should I give him his rescue med. My mind was spinning and so much was going around I couldn’t focus. 

After a bit he started to act a bit normal, playing with keys- everyone kept reassuring me to calm down and I just couldn’t. We spoke about last seizure in March and I lost it. Tears started pouring down my face and I went in the bathroom. My lips were quivering, and the tears kept coming. Ian followed me into the room and held me. I shook it off, washed my face and Skylar looked okay. I thought maybe he didn’t have a seizure. I go to grab us a plate, sit down and he starts throwing up everywhere. Now I knew.

We took him into the bathtub and he continued to vomit over and over again until there was nothing left but foam. He was sitting up so he was slowly getting better, stopped throwing up and eventually starting playing with us a bit. We sat with him in the bathroom for over an hour, brought him into the room to get dressed. He looked as if he was falling asleep, his eyes were half way closed darting back and fourth. I pick him up to bring him into the living room to sleep so we could keep and eye on him and he started vomiting once again, a few minutes after he finished he fell asleep. He is now laying on our mattress in the living room floor in front of me sleeping soundly. I can tell how miserable he is and it’s killing me.

I am calling the neurologist in the morning and scheduling for another EEG to figure out what the hell is going on. He hasn’t had another seizure this close the last since the IS. I am kicking myself in the ass for not giving him the diasat. His seizures are always changing and I have to keep learning, over and over. My eyes are dry, head is throbbing horribly and my eye lids feel like they’re sewn open.

Always trust your gut. 

My paranoia levels have been on high since last week’s trip the the ER. I find myself getting up numerous amounts of time in during the night checking on Skylar to reassure myself he’s still breathing. Along with Skylar’s Schizencephaly his epilepsy fucking sucks, (pardon my french) and so do insurance companies (his rescue med is $263 for two doses.. can you believe that?!). I’ve been doing hours of research educating and familiarizing myself with the different types and symptoms of seizures so I can recognize them right away.

In the midst of reading, I ran across atonic seizures, and have discovered that one seizure can manifest itself into another one. Also, most children like Skylar who have West Sydrome (Infantile spasms) are unfortunately more likely to develop different kinds of seizures later throughout life. My best educated guess of the cause of his seizure last week is his growth spurt he’s been going through. I believe Skylar had a grandmal seizure while he was in his room and then had an atonic seizure. Apparently you loose all muscle control, hence the not sitting up and poor head/motor control, and can sometimes cause temporary paralysis in parts of the body- he was only smiling with half of his face. 

In need of a serious vacation, and another job. Looking into working more at home and becoming a server somewhere close by. /endrant

We just got back from the neurologist a bit ago, we’re all sitting on the porch watching Skylar eat a drumstick and laughing. Apparently he had a grand mal seizure and the cause is probably from a huge growth spurt he just went through. We were going to up his dose of medication, but decided against it since they’ve been controlling them (he hasn’t had one in about a year). I asked for a rescue med and he gave me a script for diastat and sent us on our way. So no more trips to the ER please! Skylar has been doing absolutely incredible since last night- eating more food than I’ve ever seen, happy, laughing, energetic, talkative, just amazing. 

No more stress, worrying and crying. I’m so happy and content to see him okay. Thank you everyone for the thoughts and prayers.

Bianca xo

sayholalola:

My virtual friend, Bianca recently wrote a post about the experience her son Skylar had with West Syndrome. Skylar has a rare developmental birth defect called Schizencephaly. Bianca posted her seizure notebook and she spoke of the constant monitoring, the worry, the fear and many other…

I am so grateful that we got so lucky to stop the seizures in time. I have grown to love you and Lola so dearly. We are so blessed Meredith.

<3