Minivans are the new cool, but kindness is always the coolest!

IMG-8404This post is dedicated to all the mamas who bloom where they are planted, making minivans and mic-key buttons the new cool. There are little reminders all around me telling me that my life is not my own, but instead driven by my medically complex child. Cars are just another reminder that I am on a different journey than I was before, you know, Holland and not Italy. This was prompted by an Instagram post I saw back in the summer from a super popular mommy blogger. It was during a particularly vulnerable moment of mine, but I found her words at that time to be another painful reminder. She wrote things like, “lord knows I refuse to get a minivan,” and #notaminivanmom. I am not a very sensitive person, but this post made me feel ashamed of my van. This may come as a shock, but it has not been my lifelong dream to drive a minivan. So I am as shocked as you to be writing a piece in defense of the minivan life. (haha!) 

About a month ago, I got into a small accident in my beloved minivan. No one was hurt, but my car sustained a lot of damage. After almost 2 weeks, I finally got my van back yesterday and I am ecstatic. I quickly and proudly donned my new Littlest Warrior & Gwendolyn Strong Foundation stickers on the windows. They say amazing things like, “Dragon Mom, Never Give Up, Advocate Like a Mother”, etc. I have never put stickers or magnets on a car I have owned, but I am so proud of my van and the amazing things it allows me to do for my family. I have also always been paranoid about having stickers and magnets on my car in case I make another driver angry and they can identify my car easily by my stickers…er, I’m not known for being an amazing driver. (haha) BUT yesterday, I wanted to fully embrace my life and my love for my minivan by applying these incredibly meaningful stickers so my pride is displayed for the world to see now. Never in my wildest dreams did I think I would be driving and loving a minivan. But never in my wildest nightmares did I think I would have a child with a rare genetic disorder either. So I feel the need to take back the van, if you will; to empower those mamas rockin’ their vans and their different but beautiful lives! 

When Jack was born, I drove a Kia Sorento and loved it. However, it was soon clear that the car would not work with Jack’s needs.  I have been shuffling Jack back and forth to Atlanta (about a 2 hour drive) to see different specialists since his first discharge from CHOA at 2 weeks old. When he was little I couldn’t put him on a changing table for fear of germs (he was in the hospital all the time), and now he is way too big for a changing table. We have always and still do all diapers changes in the van when we are out. I do tube feeds, mix formula, give meds, whatever is necessary. I need the space. I have no idea how long Jack will be in diapers and having the peace of mind that I can just lay him down in the car and change him easily is wonderful. There are so many van things that I too used to think we super lame, but actually make all the difference in the world for me now. I am usually holding Jack when we are out and about and can’t put him down to open a door, but my van doors open for me. (woop woop!!)  I can store Jack’s walker and stroller without putting the third row of seats down. The Tahoe I drove briefly couldn’t even do that (clearly, I’m impressed by big storage spaces). I know I haven’t done a great job of making minivans sound sexy so far, but sometimes practical is more important…we can add the sexy! 

There are so many reason that I love my minivan. I can do so much inside it. Here are just few awesome things I have done easily in my minivan: changed clothes, napped, had sex in the front seats, peed in a cup, had an enjoyable dinner, had sex in the middle seats, changed a tampon, had a beer, built a fort, the list really goes on and on. I seriously have to ensure that we drive my husband’s car if we ever get to go anywhere solo because he automatically thinks that the two of + the van = a good time. It really doesn’t matter where we are going or what we have to do, if we are alone in the van then my husband thinks it’s go time! So I guess I would say that the minivan is the ultimate mom machine. wink wink!

Here’s what else I think about vans. They usually hold some incredibly kind and brave individuals, especially the really big and specially made ones. Some of Jack’s best buds from therapy have a really large van and Jack gets so excited to see it on Wednesdays. The family this van belongs to has several children, most are adopted and have different needs and abilities. I admire the mama of this family and I love seeing the van as well because it means I get to see her amazing kiddos and chat for a second. I never want another mom to feel ashamed of what she drives! I know it’s on me that the blogger’s comments made me feel less than, but I don’t think it’s a secret that minivans have a bad rep. AND of course I will take every opportunity I can to spread a little awareness. I think people (especially those with a platform) tend to forget their privilege. This anti-van mommy blogger, for example, has so many women listening and watching; no one wants to feel that their life is less than because of the car they drive. I can’t be her only (former) follower who drove a van. That’s why I also say that kindness is always the coolest!! Words have so much impact, especially on us medical mamas who already have to sift through the bullsh*t of what is said to us. I have plenty of daily reminders that my life is different, but it’s important to me to make sure everyone knows that different is not less! Different is beautiful, my van is beautiful, my life is beautiful, and I’m so proud of it all. ❤

This is me, my messy mom bun, and my vanny van with the new stickers!!IMG-8405

KILL BILL VOL. 4

unnamedIf you’re reading this, hopefully you have also seen Quentin Tarantino’s Kill Bill so you don’t think I’m a psychopath (and maybe you will anyway–I’m not, just a mom on a mission). If you haven’t seen it, let’s just say that Uma Thurman is a badass rise-from-the ashes and take no nonsense kind of gal. In the movies (Kill Bill Vol. 1-3), Bill tries and thinks he succeeds in killing Uma’a character, but she comes back smarter, more determined, and stronger than ever! Kill Bill Vol. 4 doesn’t stray from any of these ideals so I hope you enjoy my way of turning a terrible situation into something I can both laugh at and learn from. It is hard to separate myself from the anger and pain that I felt during this event because those feelings haven’t gone away. But I am choosing to take control of the story by talking about it and also laughing at it so the villain (clearly Bill) no longer holds any power of me.

Throughout Jack’s first six months of hospitalizations, he had over 10 EEGs because his epilepsy etiology was such a mystery. I became pretty comfortable taking care of a baby with dozens of wires + a heavy box that connected them coming out of his head. After the first 3, I had a system after the take off. The sticky glue stuff the techs use to make the leads stay is so hard to get out of hair and off the face! The EEGs techs were always so wonderful and would take their time trying to get the leads and glue off Jack’s head and out of his hair. It took a little while as you can imagine, especially since Jack did have some hair and his EEGs always stayed on 48-72 hours. The process was clear: when neuro said that the EEG could come off and put the order in, the nurse would call down to the EEG techs. The EEGs techs ALWAYS take off the EEG (ya know, because it’s literally their job). Unfortunately, this is where you meet Bill.

During Jack’s worst hospitalization ever, he was in the PICU and had a nurse named Bill. We were likely going to leave PICU and move to the neuro floor on this particular day and we were over the moon. Unless Jack needed help breathing, I hated being in PICU because the nurses were not as familiar with seizures as the neuro nurses were. Even though Jack was still having seizures, it was going to be a good day because we were leaving PICU!! –>Enter Bill. WORST DAY AND WORST MOM FAIL EVER! Jack’s team said the EEG could come off and then we could move to the floor. Woo Hoo! Except, the next thing I know Bill comes in the room in a huff and says that he is going to take Jack’s EEG off because he didn’t want to wait on the EEG team. I was still pretty new in the game, but I had a bad feeling and didn’t agree with Bill. I really thought he should wait for the tech, but I’m not a medical professional, just a scared mama, so I second guessed myself. I let it happen and I don’t know if I will ever forgive myself. In 30 seconds flat Bill ripped off an EEG that had been on my SEIZING infant son for a full 3 days! If your child has ever had an EEG then you probably want to throw up because I know did. My heart broke and fell to pieces on the floor; that has to be the reason that I didn’t speak up. I mean it happened so fast, but I should have tackled Bill…done anything to stop it!

Let me set the scene a little better. Since Jack was leaving PICU, his big sister had come to the hospital with their grandparents for a special visit. The last time Jack’s big sister had seen us, it was an emergency and Jack was being rushed to the hospital in status. Rowan was just 3.5 at the time so we really want to make this visit less frightening for her. Thus, while Bill was ripping the EEG off my son’s head, my husband was downstairs in the cafeteria taking his turn visiting with Rowan. The only saving grace is that I did not leave Jack’s side, but had decided my husband and I should take shifts visiting Rowan so Jack always had a watchful eye on him. I was utterly alone when this happened and have never felt so powerless. I silently watched someone who was supposed to be caring for my medically fragile infant inflict unnecessary pain on him, pain that would last for days. I stood there seething and wanting nothing more than to kill Bill. You can see the sores that Bill actions created below. IMG-7556 (1)SO I called my husband because I could barely think, speak, or function. Many a murder has been prevented on his watch (JUST KIDDING, but I am definitely the more outspoken & slightly unhinged one when it comes to our children). I was already planning where I should hide Bill’s body when my husband got back to the room and managed to calmly get us to the neuro floor while also telling Bill to stay the hell away from our son. Were we overreacting? I was still shaking and visibly upset. The second we got to Jack’s room on the neuro floor, there was a flood of nurses wondering what happened to his head. I didn’t want to talk about it. I was scared to implicate on of their own…what if caused other nurses to hate us or not want to take care of Jack? Snitches get stitches, right? Maybe this was the turning point, the defining day that made me forever want to speak out and speak out. One of the most amazing nurses urged me to tell her and I will be forever grateful that I didn’t stay silent about what happened. Before the day was over a legal representative was in our room and I realized that I wasn’t being an overprotective crazy mom, and that what happened to Jack was wrong!

Unpleasant testing is part of life with a serious medical condition. I can accept that and I can make my son endure them for the good of his health. BUT that does not mean that I have to stay silent and I hope no mama ever feels as helpless as I did above. I feel sad, ashamed, and sick about what happened to Jack. My only hope is that sharing this story will help other moms and their babies. It’s so important to remember that even when things are terrible, we still get to control our story. By sharing this I took Bill’s power away and I’ve made him into a sort of joke/lesson because it doesn’t hurt so bad when I approach it that way. Since our kiddos can’t advocate for themselves, we have to channel our own Uma Thurman ass-kicking selves so we can speak up and (metaphorically) KILL BILL.

Here’s a little EEG photo roundup for Epilepsy Awareness Month!! Sending love to all the warriors out there!

 

Epilepsy Awareness: Siblings Edition!

EVERYHTING.jpgIt’s a good thing that Jack’s big sister, Rowan, was already in love with butterflies and the color purple before he was born. These important symbols of epilepsy have sort of become staples for everything in our life. What color should we get is never a question; we always purple for epilepsy awareness. If it has a butterfly on it then we are definitely getting it (doesn’t really matter what it is)! Epilepsy Awareness is so important to our family, especially Jack’s big sister! This post is dedicated to ALL the special needs siblings out there. You are seen, loved, and so important to this world!rowan and jackI am a different mom than I was before Jack was born. I am not sure if this is better or worse for Rowan. I do know that it has been one of the most difficult parts of this journey for me and certainly one of the most difficult to talk about. Since the day Jack found himself in Egleston’s PICU, I have struggled to be the mom that both of my kids need. I had to jump all in to protect and fight for Jack. From the very beginning doctors were confused by Jack. He had a brain injury and was having seizures, but they didn’t know why they so they were throwing the kitchen sink at us. I had to be fully present every second to make sure one decision didn’t cost my newborn son his life. The mystery that was Jack only got deeper as time went on until one day we were faced with how to explain to our 4-year-old that her newborn brother was going to die. Through it all, I had a really hard time accepting how perfect Rowan was versus how sick Jack was…why was there no balance?? Of course this wasn’t Rowan’s fault, but I hurt for my sick boy and I didn’t understand how such cruel things can happen to children, to newborn babies. I wish I would have handled so much differently in the beginning, but mostly I wish I would have encouraged a relationship instead of trying to protect Rowan from Jack & protect Jack from Rowan.

Rowan Eliza is my oldest and the one who made me a mommy, and she is turning 6 in a month. She was 3.5 years old when Jack was born and she wanted a sister. When we told Ro that she was going to have a little brother, she called him baby Lucy and said he would be a girl, not accepting a thing we said as the truth. I would literally have people say, “I thought you were having a boy. Rowan told me you were having a little girl named Lucy”. My outgoing, gregarious, and incredibly empathetic little girl had her whole world turned upside down the day her brother was born. Instead of life with a new little brother, she got life with her grandparents while her mom and dad were hours away in the hospital with her new brother. There’s no way to protect your other child(ren) when a tragedy occurs. Jack was in status epilepticus and being life-fllighted, but Rowan was also along for the ride. She sat in the PICU waiting room for over 10 hours that first day and came back almost every day with her grandparents. Rowan was the first one to adapt to our new life when Jack came home from the hospital. Jack wasn’t the only baby having seizures and therapy appointments, Rowan’s baby dolls were also going through similar experiences. Her baby doll named Sunny even had an NG tube with the same tape as her Jacks. She would get competitive some days when I was taking care of Jack. She would walk by in her plastic princess heels ask how therapies my baby had today; of course, her baby doll always had a few more appointments than my baby (aka Jack) did. After the first several hospitalizations, it became obvious when were about to take Jack to CHOA. Rowan developed a stiff upper lip and would help me pack a bag because she knew we would be there a few days, never making me feel bad for leaving her.

ro jack 4

After we met with palliative care for the first time, it was suggested that we speak to a child life specialist about to approach this subject with Rowan. We did this in hospital one day with Rowan. The child life specialist gave Rowan this special bear that had a pouch where she could put messages she wanted to write to her brother or pictures she wanted to draw for him. I was so happy for this sweet little message bear and Rowan 100% rejected it. She would touch it, hold it, talk about it and every time I have tried to talk to her about that bear since, she still does not want to go there. It is so interesting! I feel like it is her own private revolt against the mito diagnosis and the “he’s going to die” inevitability that hung over our heads for so many months. It used to make me so sad because it felt like she was rejecting her brother, but now I am proud because it was her own way of protecting her brother (and herself maybe) by protesting against the stupid hospital bear. Rowan has always been Jack’s biggest cheerleader, but it is not easy for siblings to sit in doctor’s offices and therapy waiting rooms. You forget what they hear and what they are learning during phone calls with insurance, doctors, schedulers, etc. This is your life and they can’t escape it, just as we can’t. I got off a particularly upsetting phone call with neurology one time and Rowan asked me, “Mommy what is brain damage?” When she plays pretend, you will often overhear her saying that so and so had a genetic disorder, but does everything other kids do. I mean she is just the best despite all the pain and sadness has surrounded her for much of the past few years. Rowan’s daddy and I missed her 4th birthday because Jack was in the hospital and doing really poorly. She and my mom sat tried to eat the Barbie cake (see photo) and celebrate through the sadness. We’ve moved past all of this on the surface of course, but it still weighs so heavy on my heart and mind.

Rowan and Jack have recently developed a relationship that means so much to me thanks to the walker and Jack’s increased mobility and awareness! But, prior to this it was obvious that they didn’t know how to interact with one another once Jack’s seizures were under control and he was more aware. He is a hard kiddo to love on sometimes. Rowan wants to freely hug and kiss her little brother, but this is so overstimulating for him (even today) and he often screams, hits, and kicks her. He doesn’t like to be approached or touched without lots of warning, and even then he is likely to fight your advances. This used to hurt Rowan’s feelings so bad…”he’s pushing me away again,” she would cry. We have talked through things like this so much and I know that Rowan is wise well beyond her years. Her constant kindness and understanding always humbles me. To wrap up, I want to tell you about a little surprise that I am planning for Rowan’s 6th birthday next month AND I will be forever grateful if anyone can help me make this surprise EXTRA SPECIAL!!!

My heart is so heavy every single day with the weight of what I’m not doing for Rowan or how she always ends up having to wait because Jack needs something or has an appointment or is hospitalized. She’s NEVER once complained about her brother or uttered a selfish word. She tells me sometimes, “I remember what it was like before brother, but it would never be the same without him”. She’s been the strongest and most graceful of us all and her life has probably changed the most. If I could give this girl an experience she’ll never forget then maybe I could forgive myself for two years of missing things, failing her, and a lifetime of “hang on I need to give brother this first” or something similar. I got tickets to the Jingle Ball for her birthday, but now I need to figure out how she can meet her idol, Sabrina Carpenter!! ✨ HELP ROWAN MEET SABRINA!!! Does anyone know how I can get this amazing girl passes to meet Sabrina Carpenter​ at the POWER 96.1​ Jingle Ball in Atlanta next month?! Hit me with your contacts AND SHARE PLEASE because this amazing big sister deserves the most special gift for her 6th birthday! We have tickets for the Jingle Ball, but I can’t find any info about meeting artists! THANK YOU!!!!

Pictured below is my sweet girl celebrating her 4th birthday with just her YaYa (my mom). We had tried to prepare for a party, even ordered this princess cake! But Jack was in status AGAIN and we things were pretty bad at the hospital. It was TERRIBLE for everyone. Below this photo is one of Jack jack in the hospital with Rowan’s Minnie mouse of she insisted keep him company in the hospital. ❤rowan bday cakejack and minnie

This is the very first photo of both of babies! We had no idea about the secret battle Jack was fighting at this time! img_2807

What’s with the walker?

This summer was the first time Jack has ever gotten to stand up and hug his big sister thanks to his walker! 

Hi friends! This post has been on my heart and bouncing around in my head for several weeks.  As most of you know, Jack’s medical journey has never been straightforward nor simple. One of the worst parts of having a child with a brain injury is the “wait and see”. When Jack had his 2-year-old MRI and follow-up with Neurology, several specialists came in to see Jack (because it is still so shocking to look at his medical history and then see him today).  The good news is that Jack’s brain injury did not seem to be progressive so his Neuro diagnosed him with CP. They all agreed that Jack needed some extra help meeting his milestones and wrote him a prescription for a walker. This was at the very beginning of July. My hope was to have Jack’s very own by the time I wrote this, but this still has not happened. We are lucky enough that Jack’s PT and therapy service had an extra posterior Kaye walker for us to borrow.  However, it is old and the wheels are terrible. Every time I see a kiddo in a walker with good wheels, I seriously get green with envy. haha! My husband has a great job and we have good insurance so this is absolutely INSANE! The prescription for the walker was written and submitted to Numotion in JULY of this year and it is the end of OCTOBER and I am still fighting with insurance and Numotion to get my child a device that has given him such an incredible quality of life AND helped him progress/meet milestones that he was previously stuck on. Literally, the walker is at Numotion and our insurance company is questioning ONE ACCESSORY on the walker. The fight for Jack’s quality of life is so soul crushing sometimes. That’s where we are at with Jack’s very own walker, but on to more positive things…

I want to give Jack an accessible life. I want him to do whatever he wants to do. Like all families of kids with complex needs, we go through ups and downs. This summer was an absolute LOW for us. Jack was right on the verge of turning two and had hit a wall around May and really stopped progressing physically. He became increasingly agitated and everything made him angry. He was lashing out by throwing himself backwards, kicking, flailing, biting, and screaming. It had started to feel like every second I was fighting a battle that I didn’t understand. Jack wasn’t even trying to communicate; his instinct had become to scream. We went to Orlando for a long weekend in June and Jack stayed in the hotel the entire time (Cliff and I took shifts with he and Rowan) because he was so out of control. I was trying so hard to understand where all Jack’s frustrations were coming from. It started to become obvious that Jack was stuck. He is a pretty big kiddo and was around 27-28 lbs this summer. We were completely out of infant walkers that could hold him and help him learn to use his legs. One day I took Jack out to play at a local spot and I watched him repeatedly get upset as kids would walk and run past him while he was stuck in one spot and could maybe pull to a stand. He was screaming and hitting in their direction. I know I said he wasn’t communicating well, but this seemed pretty clear.

I was super nervous, but all for it when Jack’s neuro team/PT mentioned a walker/gait trainer. Jack’s CP has always been a little different. I would look at other kiddos and wonder why the same things PTs used for them weren’t working for Jack. To be clear and specific, Jack’s CP is called Hypotonia. I will never forget how many times he was referred to as “floppy” when he was an infant. Floppy, like puppy ears. I remember getting sassy with the first PT in the hospital who told me that Jack had poor head control. I said, “he’s 10 days old so why would he”?? In the beginning, I wasn’t quite sure what advocating for Jack meant. So I would stick up for him and get angry when docs/nurses/babies can’t wait/etc. said that Jack had CP when he was so young. But now I know that the diagnosis doesn’t matter and in some cases the diagnosis is the ONLY WAY to get the services and equipment your child needs. Here’s a little more info on Hypotonia:

“Hypotonic cerebral palsy is a form of the disorder marked by floppy (overly relaxed) muscles; hypotonic CP is rarer than the spastic forms of the disorder. Hypotonic cerebral palsy is hypotonia which is caused by brain damage or brain malformation; it is generally congenital (present at birth), but an injury shortly after birth can also cause it. A child with hypotonia often takes longer to reach motor developmental milestones, such as sitting up, crawling, walking, talking, and feeding themselves. An adult with hypotonia may have the following problems: clumsiness and falling frequently, difficulty getting up from a lying or sitting position, an unusually high degree of flexibility in the hips, elbows and knees, difficulty reaching for or lifting objects (in cases where there’s also muscle weakness).”

Above describes Jack to a tee. Jack couldn’t sit up independently until he was a year old. And this was all he could do at that time. We finally felt like Jack could handle more therapies per week and his Neuro team really felt like he needed 2 PTs per week so we bumped up to getting 2 PT, 2 OT, 2 Speech/feeding therapies per week. We have been doing this consistently since Jack turned one. This is also why we live in a basement apartment at my parent’s house. Therapies are incredible expensive, we max out our policy’s allotted therapies by like April, and we don’t qualify for any assistance. But I could honestly care less because Jack’s quality of life is most important to me and early intervention is absolutely everything! I wish I would have had more foresight with the walker because I would have pushed for it much sooner. We worked on walking for so so long and Jack just wasn’t putting the pieces together and it became clear that his body/brain also physically couldn’t put the pieces together. I just wasn’t sure what to do for Jack at the time, but he showed me the way just like he always does. The walker was the way and this was obvious from the first time Jack got his hands on it. The independence the walker allowed Jack broke him free from all the frustrations he was feeling and we finally had hope again.

Jack has been borrowing his posterior Kaye walker for 3.5 months now and he has made so much progress. He started taking steps and is now even walking independently some! I cannot believe he hit this huge milestone after only having the walker 3 months!!! However, now that he is on his feet, we can also see where he struggles most. Balance, coordination, tone, motor planning, sensory struggles, and stamina are all daily concerns as Jack continues learning to walk. Jack still uses his walker often, however if we are in a small space or a space with lots of chairs/things to hold on to then I often won’t bring the walker in. I know life will be SO much easier when Jack gets his walker because the WHEELS will be perfect! You can think of Jack’s borrowed walker as the grocery cart with the weird wheel that keeps turning and slowing you down. This also means that mama has to do lots of pulling/helping when Jack’s in the walker. But that’s okay because those archaic wheels have given Jack his life back! I didn’t know how I was going to manage this summer because I was getting kicked, hit, and bit every single day by my struggling toddler. But now, we go everywhere and do everything because I can bring the walker and know Jack will have something (besides me) to support him.

I have so so so much to say about the walker, but I don’t want to drone on and on. So I just want to say PLEASE message me on IG or email me if you have any questions about this topic!! I could go on and on. The walker has also given us more PT activities to do at home where Jack can strengthen his core. We are about to transition to wall exercises and I will slowly take the walker away as he gets more steady. Super excited about this!

Lastly, I wanted to speak quickly on being in public with the walker. We have had mostly support and encouragement when out in public. However, my poor kiddo really struggles with sensory issues and once strangers start noticing him and talking to him, he shuts down. So this has been sort of challenging when we take the walker out in public. It’s big and bulky and of course you’re going to notice it. I don’t mind at all…and I encourage people to ask questions. BUT please remember that kiddos struggle with this sort of attention too. So stopping to speak may not be a great idea, but a kind smile and encouraging word as you pass is amazing! On the other hand, I have had a few misguided comments regarding the walker. I realize that Jack looks like a baby, but he’s 28-months old…he’s two, he’s a toddler. He doesn’t want to be a baby and is very aware of actual babies. Thus, when the father with the 9 or 10-month old infant says, “oh man if she had one of those, she would be gone,” it hurts my mama heart. I am usually pretty quick on my feet, but this time I was dumbfounded by this father’s ignorant comment. I hope his child never needs a walker. You know what is amazing, though? The other kids!! Most other kids Jack’s age love his walker and want to approach it and use it too. I think that’s great motivation for Jack and encourage kids to be interested and interactive. Yet, there are always embarrassed and flustered moms trying to drag their interested kids away from us. It’s okay! PLEASE encourage your kids to speak to and befriend kids with walkers, wheelchairs, etc. This is the only way we can truly be inclusive and normalize disabilities. Do not shy away from differences! Thanks for hanging with me, friends and contact me if there’s anything I did not touch on or you want to know more!!

jackcfob

We are so passionate about what this walker has done for Jack’s quality of life! We would love to see more brands using differently abled models to represent them. So we took a little road trip and went to Tennessee for a Changing the Face of Beauty head shot clinic. Inclusion and kindness matter more than anything so help us change the world! ❤

Inchstones

Inchstones. How I wish I had heard this term two years ago when we started this journey.

When you’re having a baby and especially during that child’s first year, you could drown in the amount of times you hear the word, “milestones”. It’s freaking conversational even. I guess you don’t know what you don’t know…however, I know and am so much more sensitive about this word being used at me since Jack was born. Jack didn’t roll over until he was almost 6-months-old. At 5 months old, I had to remind the few people who were actually allowed to hold Jack that his head should be supported like a newborn. When we were told by a Neurologist that Jack was going to die, I even became pissy about cute baby clothes. I absolutely loathed those stupid Carter’s Baby’s FIRST Christmas/Halloween/Whatever outfits. I distinctly remember having a little meltdown to my mom about those outfits one day when we still thought Jack was dying. I was so mad at those outfits and said, “I wish they made Baby’s ONLY Christmas outfits”.

Sorry to all those who think I handled Jack’s medical issues with grace. I do try, but the sadness and bitterness creeps in, even now. I have to actively work on keeping the bitterness at bay. I will say that being a part of the powerful special needs community online really helps me keep the shitty thoughts out. That being said, I want to give a shout out to an amazing non-profit organization helping medically complex/special needs kiddos: Go Shout Love (https://goshout.love/).  I have only been following them for a few weeks, but the organization has already touched my heart. I read a post about the kiddo of the month, Sofia, and how her family celebrates her inchstones as she goes at her own pace. Oh man, I loved that so much.

I have always silently celebrated inchstones, but didn’t know what to call them. We’ve had such a hard road that I’m always waiting for the other shoe to drop. I feel like I will jinx it if I celebrate a few words or a few steps here and there. Many times Jack will make huge strides in one area (PT for example) only to fall farther behind in another area (Speech for example). Just because Jack does something one time does not mean he will repeat it. Seriously, this makes it challenging and confusing to celebrate Jack’s little accomplishments. I know people think I am so hard on Jack because I don’t stop and celebrate his inchstones, because instead I am pushing him on to that next one. But Sofia’s story has reminded me to slow down and celebrate Jack’s inchstones. They are meaningful, they are important, and they don’t come without blood, sweat, and tears (hopefully not blood too often), so let’s celebrate!!

We will let Jack take the lead and we will go at his pace, reaching both inchstones AND milestones.

If you want to learn about Sofia, Go Shout Love, or purchase one of these amazing “Hang on to Hope” Sloth tees to support Sofia, visit (https://goshout.love/). I found a little inspiration here so thought I would share & shout love for Sofia! Look, no hands!!! ❤IMG_4849.jpg

Where does that leave Jack?

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Hi friends! It has been a while so allow me to reintroduce for new followers! I’m Leah, Jack’s mom. We lovingly call him Jack-jack like from The Incredibles. Jack has a very rare genetic and metabolic disorder called Pyridoxine Dependent Epilepsy. This condition has left Jack with a brain injury, as well as many struggles and delays. To put it simply, Jack’s body lacks an essential enzyme known as Antiquitin, which breaks down the protein building block called lysine in the brain. The breakdown of lysine in the brain is necessary for the brain to function properly. This essential amino acid breakdown doesn’t happen in PDE patients and the build-up of lysine is toxic to the neurotransmitters in the brain, resulting in seizures and abnormal brain function. What does this mean for Jack?

For the first 5.5 months of Jack’s life, he suffered from intractable epilepsy (uncontrolled seizures). He was life-flighted from our hometown to the best Children’s hospital in our state at 5 days old in status epilepticus; he was in a constant seizure state that could not be controlled. For the next several months, Jack was a medical mystery. He spent so much time in the hospital having seizures, being sedated, getting tests done. When Jack was 11-weeks-old, he had his second stay in the PICU at CHOA. His seizures were getting worse and worse. He was on 3 different types of anti-epilepsy medication and still he was having terrible seizures. The doctors did a bunch of tests and an MRI and told us that Jack had Mitochondrial Disease and that he was going to die. We were devastated but kept fighting for Jack. That turned out to be a misdiagnosis, but does illustrate how sick Jack was at the time. After much genetic testing, Jack was properly diagnosed with PDE and we have been fighting for his development ever since! At 6 months old, Jack had the skills of 1 or 2-month-old baby. He still suffers many delays from everything he has been through and his health is a daily battle. He is on a diet and therapy specific to his condition. He sees Neurology, Genetics, GI (because he has a feeding tube known as a G-tube), Neuro-developmental doctors, Developmental Pediatricians, as well as a Physical Therapist, Occupational Therapist, and Speech Language Pathologist. In addition to PDE, Jack has been diagnosed with Global Developmental Delays, Sensory Processing Disorder, ASD, Apraxia, and Cerebral Palsy. Jack is the happiest, sweetest, most wonderful little boy despite everything he has been through! He loves life and exploring his surroundings more than anything. He has been completely stuck and unable to do this until his doctors prescribed him a walker! We have been waiting on Jack to get his own walker for over a month now and still no word…Currently, Jack is borrowing a walker from his Physical Therapist while we wait for the insurance company to approve one of his own. I live in fear another kiddo will need it and we will have to give it back.

And this is where we circle back to the title. Where does this leave Jack? Out.  Because Jack was not a little sicker or because it wasn’t caught in time, it is a constant battle to get him the services and equipment he needs.  Jack was likely having seizures in utero that were not caught. I used to say I could feel him hiccuping all the time…makes me sick to think those were seizures. Anyway, the seizure activity was not caught (by me) until he was 4-days-old. I hate thinking we could have been better prepared…where was our help and our support? We have always been handed these huge and life-altering diagnoses with little no support. The doctors can only do so much and this shit is EXPENSIVE! This is not supposed to be a bitch session so I apologize if that’s what it’s turned into. However, the struggles and battles we face as special needs parents are so soul-crushing that I feel like writing about them may help me shed some of my anger and frustration.

Our biggest struggle is getting Jack what he needs. Jack’s doctors say he needs a certain amount of therapies to be able catch up and have a decent quality of life. This is 6 therapies per week and we currently do 5 a week to try and save a little money. We have private insurance through my husband’s work. He has a great job and we are very lucky. However, I was unable to go back to work after Jack was born and his daily needs keep me from being able to work a full-time job now. This means we are stuck. We live in a basement apartment at my parent’s house because our finances are so strained. Can you imagine?? We have two windows for the whole place. Again, not complaining because we are very lucky.  Private insurance doesn’t cover much of Jack’s therapies and they only pay for so many visits. In addition, we also do not qualify for any assistance so we are stuck. See a theme?  Jack is two-years-old and does not walk or talk. He does not have the fine motor skills to ever be able to button or zip, hold a pencil, etc. THIS IS WHY KIDS NEED THERAPIES! Shit, sorry did I shout that?! Thanks to therapies, Jack has learned how to do everything he knows how to now. Jack LOVES his walker and the independence/confidence it gives him. He is a totally different kiddo since he got the walker and his development is taking off! At two-years-old, Jack was able to stand up and hug his sister for the first time. I am livid thinking about the waiting Jack would be doing if his PT had not given him this walker to borrow. I can only imagine the price tag that will be attached once the walker is approved. Instead of battling insurance today, I decided to write. I hope there is a way to shed to this hard shell that these battles have given me, but so far I just feel like fire-breathing dragon that scorches anyone who gets too close.

P.S. As always, I welcome questions and I am always open to helping in any way I can. If you want more info on PDE, check out http://www.pdeonline.orgIMG_2909IMG_2558

It’s been one year…

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We survived one full year, all of us. I haven’t posted about our journey the way I would have liked to, but I feel ready to share some about Jack’s first year of life.

One year ago today, I was getting ready to have baby Jack. I assumed the delivery would go smoothly and was already seeing past that part and on to my life as a mother of two. I was so excited to nurse Jack and spend lots of time snuggling with both of my babies before returning to work. I always assumed I would go back to work. I loved my job at the humane society and in many ways my entire adult identity was been based around the humane society. I already saw our lives with me back at work. I was completely comfortable and confident in my life.

That life seems so far away that it is hard to believe it was actually mine.

My life today consists of therapies, special diets and medicine, g-tubes, neurology appointments, genetics appointments, lots of blood draws, ER visits, service dogs, hospitals…you get the idea. I wouldn’t change it for the world and I know how lucky I am because Jack is doing remarkably well considering everything he has been through. But it is overwhleming and all-consuming and sometimes I just have to cry; cry for what was lost, cry for the trauma we all suffered, and cry with overwhelming gratitude that Jack is here.

My first blog post describes our time in the PICU when Jack was a newborn so I will skip that part. After that initial hospitalization, we were told that had an HIE (Hypoxic Ischemic Encephalopathy). The neurologist who delivered this news was noticeably upset and told us that Jack would likely have CP. We were discharged and we immediately started early intervention to try and compensate for what had been damaged in Jack’s brain. We swallowed this diagnosis and faced it head on. But, this was misdiagnosis we soon found out.  After three hospitalizations for breakthrough seizures, Jack was admitted in status epilepticus; he had been in a “seizure state” for over an hour. We were admitted to PICU and Jack had a terrible postictal phase, which is the time after a seizure when the person is recovering so to speak. Well Jack was not recovering very well and he was having horrible muscle contractions and couldn’t or wouldn’t make any sort of eye contact. My heart was beating so fast and I was nauseous. I swear if you could throw up your heart then I would have done it in that moment.

Once Jack was stable and moved to the neuro floor, he started having a pretty rare form of seizure known as a gelastic seizure. Let me just say that Jack was only 10 weeks old so he was JUST starting to smile. He did not laugh. Interesting fact: gelastic seizures are laughing seizures and not the fun kind of laughing. It was horrible. Jack could not control himself. He was laughing hysterically and his body was jerking around. This prompted the need for Jack to have a MRS, which is just a fancy MRI and I hate it and I am not getting into anything about this stupid test. One more interesting fact, gelastic seizures are most commonly associated with a certain type of brain tumor. So I am thinking, “brain tumor, okay not so bad and at least it would be an answer and something we could try to fix”. That’s the world I was living in; the world where a brain tumor is a decent option.

I will never forget setting a meeting time to discuss Jack’s results. I was almost excited because I thought maybe we would have an answer. There were three doctors in the room, along with my mom, my mother-in-law, myself, and my husband. They brought in a big computer screen to show us the results, but were having technical difficulties. I was searching the face of my favorite neurologist, but she was looking at the floor. Everyone seemed nervous, maybe even sad. FUCK! Just tell me.

We were told that Jack had Mitochondrial Disease and in no uncertain terms that he would not live very long. My husband asked, “are you sure?” and the doctor just looked down and said, “I’m sorry”. We lived for two and a half months believing that our little baby was going to die…soon. I now lived in a world where babies die. I lost my innocence in ways that many people won’t understand and I had to adapt quickly to learn how to survive in this world. I did the most logical thing I could think of and started asking BIG questions and talking about what I wanted for my son. They sent in Palliative Care and my husband and I discussed what we wanted for our son as he died. Can you imagine?

There is a lot more to this story and our journey, but I’m exhausted and I imagine you are as well. If you know Jack, then you know that he does not have Mitochondrial Disease. Genetic testing revealed that Jack has a rare form of genetic and metabolic epilepsy known as Pyridoxine Dependent Epilepsy. A correct diagnosis can do wonders. I want to share something special in honor of Jack’s first birthday. Welcome to Holland sums up our first year with Jack and I am so glad we landed in Holland! ❤

Happy First Birthday, Buddy!

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The House That Jack Built

“This is the house that Jack built, y’all. Remember this house…This was the room that was filled with love. It was a love that I was proud of.” -Aretha Franklin

I was a happy, social, outgoing pregnant lady when my dear friend would blast the above Aretha song EVERY time we got in the car after she found out that I was going to name my son “Jack”. Most of the time I wanted to vomit because she would crank the song up and she drives like a bat out of hell who doesn’t seem to quite understand the art of braking. This song has stuck with me more than I ever could have imagined in early 2016 when I used to roll my eyes as it blared in Janie’s car as she serenaded me loudly with no regard to basic traffic laws. I took this carefree existence for granted as I never expected that I would have anything but a healthy baby boy. I could kick the silly, selfish, ignorant girl that I was before July 28th, 2016.

So much has happened between the day my son was born (July 23rd, 2016) and now. I have pined to write about this for so long, but I have been unable to get the words out for so many reasons. There is a lot to tell so I will break it up in several posts so I don’t lose you before we even get started.

My name is Leah Trotter and I live in Athens, GA with my husband, 4-year-old daughter, 5-month-old son, and two dogs. Prior to my son’s birth, I worked at Athens Area Humane Society and was incredibly happy and fulfilled…or so I thought. I am passionate about animal rescue and could have never imagined that I would leave my job as the Outreach and Communications Specialist for AAHS. This is story of how my world got turned upside down.

Baby Jack, as we like to call him, was born on July 23, 2016 after a VERY normal labor and delivery. My water broke on July 22 after a night swim with my 3-year-old daughter, Rowan. My husband drove me to the hospital and  I was so excited because I so badly wanted to go into labor naturally this time. I was induced with my daughter because she had refused to leave her cozy home in my uterus. Everything was happening just like you see on TV…exciting/unexpected water break + crazy/intense/painful/funny car ride to the hospital. Cliff, my husband, pulled up to the ER doors (after asking me if he could park in the deck and walk me up…I may have bit his head off for the suggestion because my contractions were getting stronger and walking was NOT an option). Two nurses were walking in from grabbing their dinner across the street and saw that I was obviously in labor. Lucky me, they were L & D nurses and put me in a wheelchair and brought me up to the floor to get settled. Seriously, what luck!

I was only in labor for about 12 hours and only pushed for 45 minutes before sweet Jack made his appearance into the world. I got an epidural and it worked beautifully. I honestly had the most lovely labor experience, other than the painful pushing part of course. However, 45 minutes of pushing is MUCH better than the 3 hours I pushed with my daughter. I was on top of the world when Jack was born. He was perfect at 8 pounds and 3 ounces, 22 inches long. He nursed perfectly right off the bat. We had beautiful newborn photos taken in the hospital by a friend who did a fabulous job. My daughter was in NICU when she was born and did not get newborn photos, which was something I had regretted terribly. We were getting those photos no matter what this time. Rowan even cooperated (with only a small amount of bribery) and got photos taken with her new baby brother. In the months leading up to Jack’s birth, Rowan had insisted that I would have a baby girl and called the baby Lucy. However, after he was born she was so good and even seemed happy. Seriously, I was over the moon and felt like the luckiest lady alive!

I had Jack on a Saturday  morning and we went home on Monday afternoon. Everything was perfect. He ate well, he slept well, he was an easy/happy baby. On Tuesday, the day after we came home from the hospital, I told my mom and husband (as I cried like a hormonal idiot) that I was so happy and could not believe I was so lucky! I felt like I had the most incredible life and family. I had been wary about adding another baby and after Jack was born it was so clear that having a second child was the right move.

I was so blind to the true hardships in life and without warning, my life changed in an instant. Did I even blink? Had I been dreaming all along? What happened?

Tuesday evening, late, Jack started crying. His crying intensified and he became inconsolable. I was so calm and patient and didn’t feel the least bit worried. I rocked him and loved him and knew he would feel better soon. We had our routine follow-up with his pediatrician on Wednesday. Jack had still not stopped crying by that time. No exaggeration, Jack cried for 15 hours straight. He cried the entire time at the pediatrician’s office and I expressed my concern. Probably gas or reflux or colic. We went home and the crying did not stop until about 8pm that evening. Jack had still been eating some throughout all the crying, but then he stopped nursing. I pumped and tried the bottle. Gradually throughout the night he basically just stopped eating, but he eventually stopped crying as well. As the crying stopped, something new started. I cannot explain it, although I have told the story to more doctors than I can count. I have retold this story so many times that it is painful to do again, but I know I need to get it out one final time.

Jack did not look quite right after the crying stopped. Keep in mind, he was barely 5 days old at this time so it was hard to say if he was just brand new or if he was acting strange. Babies are strange; they have strange movements. But something was neurologically not right and I knew it. He did not look like he was seizing (not in the sense that I thought a seizure looked like at that time at least), but something told me he was having little seizures. He was slightly shaking, jittery as they called it in the hospital, and then he would startle and throw his left arm out and turn his head to the left simultaneously. There is no way to explain this act, you just had to see it. I tried everything to see if I was imaging it or if something wasn’t right. My mom helped me give him a little sponge bath. He started seeming rigid. I was done. I called the pediatrician and we went back in on Wednesday morning. Jack was 5 days old.

Immediately, our pediatrician sent us to the local hospital. She wanted Jack to be admitted and see the neurologist. There is only one pediatric neurologist in our town. WTF?! We finally got to the peds floor after 30 minutes of registration, which I now cannot believe even happened…for fuck’s sake my newborn was seizing in my arms and no one felt a sense of urgency??! Yes, his shaking/startling was still going on this entire time. The first nurse who saw Jack immediately knew something was wrong and started getting other nurses in the room. She was a freaking rock star and I love her for the care she provided my son. It was obvious that something serious was wrong with Jack. Before I knew it there were 6 or 7 nurses in the room, all crowded around Jack trying to help him and my husband and I faded into the background as they worked. I have never been so scared in my life. It was soon decided that Jack needed to be sent to Children’s Healthcare of Atlanta, the best pediatric specialists in our state. I was terrified because this confirmed that something bad was happening to our newborn son.

Everyone in the hospital room kept calling it “seizure activity”. What the hell does that mean? Is he or is he not having a seizure?! I was borderline hysterical and we were told that only person could ride in the ambulance so my mom came and picked me up so we could meet my husband and son at CHOA. I’m sure it seems weird that I wasn’t the one to stay with my son, but I couldn’t even function. I would have been no good to anyone. My husband was much more composed, though obviously terrified, and he agreed it was best for him to stay and ride in the ambulance. What happened next only added to the nightmare we were already living.

Jack could not be stabilized, meaning they could not stop the seizure activity which was only getting worse. The CHOA doctors wanted him on the helicopter instead. It took 4 long hours to get Jack stable, intubated, and on the helicopter to Atlanta. My poor husband was left in the dust. There was no room on the helicopter for him. Luckily, the ambulance from CHOA had also arrived at the hospital and my husband rode to Atlanta in it. I had taken the car keys so he was going to be stranded otherwise. Meanwhile, my mom, my daughter, my in-laws, and myself waited in the PICU waiting room for Jack and Cliff to arrive. I would have sworn we waited for 12 hours, but it was more like 5 or 6. Yes, Jack was going to be taken straight to the Pediatric Intensive Care Unit because he had been given a paralytic, intubated, and pumped full of phenobarbital and ativan.

I don’t have a picture of the first time we saw Jack in the PICU because it would not have been appropriate, but this photo shows Jack on his second day in PICU. He was extubated and breathing on his own, but also under the bilirubin lights and hooked up to his first of many EEGs. Look at him. He is a healthy weight and does not look like a sick baby. Honestly, I have grown tired and weary of having people telling me that Jack doesn’t “look sick”… welcome to epilepsy, people!

There are many more chapters to Jack’s story, but I will end the first one here because the story is an emotional roller coaster and I can only take so many ups and downs in one sitting (as I am sure you will agree because reading this, just like living it, will make you dizzy and nauseous).

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