Raising Hell, Awareness, and 1 hell of a Football fan!

On August 24th, 2013, the Philadelphia Eagles beat the Jacksonville Jaguars 31 to 24 in the pre season. It was also the day I was admitted to the hospital to induce labor. We had 2 reasons to be excited that day! Not only was the team we love starting off on the right foot, we were going to meet our baby girl! I remember watching the game on TV, Jay wearing his football jersey and the Doctor's face shield, goofing off at the foot of the bed in a receiver stance. 
Because Jaylyn's issues were not known until after she was born, labor was induced slowly, and she was born the next day. In hind sight, it was very much like watching an Eagles game. We had so much anticipation for a win! We had such high expectations for a perfect "season". 
Of course as Eagles fans, that doesnt always seem to be the case. The ups and downs much like a roller coaster ride. It very much parallels Jaylyn's life and the challenges she faces daily.
Yet despite those challenges, she presses on. Like a determined athlete, she pushes herself to find a way to succeed and achieve. Jaylyn was dealt a life of many challenges and she has risen to each and every one and being a fan of the Philadelphia Eagles has played a huge part in that. Jaylyn is non verbal. She doesnt even say "Mommy" or "Daddy", BUT she does say "Eagles"! Every game, Jaylyn can be seen clapping and saying "Yay Eagles"! Jaylyn has significant physical limitations and was not expected to walk, yet her first attempt at taking steps independently was initiated by her hearing the Philadelphia Eagles fight song. 
So although Eagles fans typically have a bad reputation, and we often hear trash talk about encouraging Jaylyn's love of football and the Eagles, we are proud of our little Eagles fan! She is an under dog, just like the team we love. If only the Make a Wish Foundation could grant a super bowl win...

Shhhhhhh!

shhhhhh!!!!!: http://youtu.be/CjdFNammmTk

Just bad luck!

When you're as analytical as I am, I need to know the "why" to everything. So after the months of guessing games, tests, and finally a multitude of diagnoses, of course I needed to know WHY?! What caused this? Could it have been prevented? Was it something I was exposed to? Was it a medication to ease the discomforts of morning sickness? Is there a way to find out? And so I began asking questions of the doctors that are now caring for my daughter who has hit the rare disease jackpot so to speak. Due to the diagnoses of 2 rare brain abnormalities, naturally I asked the neurologist. He would know best right? His answer? You guessed it! "Just bad luck!". This answer has yet to sit well with me. There has to be a reason other than just bad luck! And so after switching pediatricians, and going over every finite detail of Jaylyn's birth history, diagnosis of neonatal alloimmune thrombocytopenia and the barrage of things it could possibly be responsible for, she wants us to follow up with hematology to see if there may be another reason Jaylyn had suffered a stroke and brain bleed in utero. So we could actually have some answers!  Of course I dont want Jaylyn to suffer anymore poking and prodding than necessary but a why could lead to more appropriate treatment and protect my other children when they decide to have their own children. And yes she did agree that my unfortunate exposures to contaminated water and vinyl chloride could very well be the culprit. And then there is the medication I was prescribed for morning sickness. Now there is a huge class action lawsuit for the birth deffects caused by that. So I know deep in my heart that there is a "why" just as I knew deep in my heart something was just not right throughout my entire pregnancy. Just like I knew deep in my heart I had to keep pushing for months for appropriate testing that led to proper diagnoses. So if anyone can learn just 1 thing from our journey is to never give up on finding answers and not all experts are experts on YOUR child.

Faith, Hope, Love, AND REALITY

Along our journey, I have been searching for ways to cope, grieve, and find some happiness. I am pulled in so many directions on a daily basis, that I rarely have the time.  I enjoy those little moments when Jaylyn does even the smallest unexpected thing. Its a celebration.  Those rare moments when she purposefully uses her right hand are monumental to me. She has surprised me and those "experts" with how well she is doing compared to so many others with the same diagnoses.

With that in mind, it certainly does not take away from the reality of it. The facts. So when I am excitingly updating a family member, and those unfortunate but well meaning words cross their lips, "maybe the Drs are wrong and she will be normal", my head falls heavy into my hands. I feel like you are calling me a liar and Jaylyn a faker. That perhaps I am exaggerating the severity of this. I assure you, I AM NOT. Its great to be hopeful and have faith that "everything will be fine". But the reality and facts cannot go ignored.

And just what prompted me to write this? The other day, after giving Jaylyn her first dose of seizure meds for the day, she gingerly reached for the syringe and explored it with both hands. Hooray! And as quick as I was to celebrate this event, the words that followed out of my typical daughter's mouth broke my heart. It certainly was not intentional, but it made me realize just how hurtful those false hopes AND reality really are. How do you explain such a thing to an 11 year old so that she could possibly understand? And so I remained silent, faked a smile and cried in private like I often do. It took over 24 hours to gain the composure to address just what she had said.

As Jaylyn explored the syringe, Sam had said "maybe she will grow up to be a doctor!". Those words were so full of hope and anticipation,  that I was not prepared or willing to crush that dream...at that time. What was running through my mind was "if she grows up", "if she becomes ambulatory", "if she becomes verbal", "if she lives".  I try my best not to be a Debbie Downer, but lets face it, when your child is diagnosed with not 1 but 2 brain abnormalities that shorten their lifespan, it does get me down.

The truth is, we do not know just what Jaylyn's future will hold, what she will and wont be capable of. There are many a "what ifs", but I am not prepared for the devastation my other children's false hopes may bring in the future either. So whats a mom to do? After thinking, crying, and talking with Jay, it was yet again time to sit my typical daughter down for a talk and a gentle reality check.

As kindly as I could, I reminded her of the conversation and of her words. She saw that I had tears in my eyes and began crying herself. She knew! I had explained again about Jaylyn's condition and her response was still so full of hope. "I was just hoping Jaylyn would grow up to do something big."  I explained that her waking up to see another day is BIG. Every time she smiles is BIG. Her determination and drive and resulting progress is HUGE! And that is what matters. To focus on the day we have with her. To enjoy and celebrate the accomplishments she is making now, because tomorrow is a promise that is so easily broken.

Roller Coaster rides arent just for amusement

Being the parent of a special needs child is much like a roller coaster. Often times, youre on this ride alone, unless you have an equally determined partner to help encourage that overly determined child. Even still, this is a ride we are on together....alone.  And then there are some who find amusement in derailing that roller coaster, as if the ups and downs are not already enough.

We often hear encouraging words, and those dreaded well meaning but insensitive cliche's. We just chalk it up to someone not really knowing what to say, and there is no ill intent meant. And we try our best not to take offense.

And then of course there are people that do intentionally say cruel and hurtful things. Or at least have ill intent, but we are resilient and try and brush it off.  Even with years of experience as a pediatric nurse that works specifically with special needs children,  I was far from prepared for my daughter's diagnoses, the care, therapies, adaptive equipment, and countless appointments with specialists.

"But she looks normal". Yes to the untrained, ignorant and judgemental,  at first glance she does "look normal". But that's because she doesnt wear her brain outside of her body. She is still a baby and we are learning as we go what her needs will be. She doesnt wear a sign listing all of her medical issues and daily challenges. As her parents, we do not constantly update the world with "woe is me" posts on Facebook for pity or sympathy. She doesnt have a warning alarm letting us know when SUDEP may occur. (SUDEP is an acronym for Sudden Unexpected Death in EPilepsy). We are rejoicing in and sharing as much happiness as we can muster because in the blink of an eye it can be gone. I often find myself speeding home from work in a panic. We take turns losing sleep. We are constantly on edge, waiting for the other shoe to drop. We incorporate physical therapy into every moment of the day to keep her moving and avoid her being in a wheelchair. There is still so much that she should be doing on her own, that we patiently do for her. Sometimes she even has to accompany us on bathroom trips. Her odd neurologically affected sleep pattern makes it hard to plan even the simplest outting. We cant just get up and go when either 1 or both of us is pushing being awake for 24 hours. So if you think we have it easy, think again. If you think having a special needs child is an advantage in any way, or entitles us to benefits of riches beyond our wildest dreams, think again. And by all means, before saying ANYTHING even remotely malicious,  remember everyone is fighting a battle you know nothing about. Especially our daughter, who has beaten all odds and exceeded the experts expectations.  Together,  we will ensure her fullest potential. We will not allow anyone to rain on that parade.

Dear person Ive explained this to for the umpteenth time today!

When your child is sick enough to warrant a call to the doctor, you usually have to describe symptoms, etc to the receptionist prior to the appointment. Once you arrive, the nurse that takes you to a room asks, and then once the doctor comes in, you have to explain yet again symptoms, timeline of onset, what meds were given, and what interventions were taken.

Now lets say you have a special needs child with a complex history? This may be the one time you do not want your child treated like everybody else! If not for their well being, for your sanity as well!

Jaylyn received her 15 month vaccines 9 days ago. She has been running a fever since. Symptoms progressed to the point of an office visit, antibiotics,  a trip to the emergency room, and a follow up with the pediatrician pending in 1 to 2 days. Its been determined that the vaccines have caused an adverse reaction. But the process to come to that conclusion has been stressful and frustrating.

#1 when calling the pediatrician with concerns about symptoms lasting this long, I do not want to be told "let me see if triage can take your call". All of this pussy footing around for months on end and this wait and see approach has done nothing but inhibit my daughter's progress. This was a 3 hour back and forth event that resulted in me demanding her pediatrician be notified. The Dr did determine that her prolonged symptoms warranted a trip to the emergency room.  I tried to spare myself some aggrivation by taking her to a children's hospital where a lot of the patients are also special needs.
#2 once we arrived, we had to explain a weeks worth of events and symptoms to the person at the desk. Once we were called back by the triage nurse, we had to explain again. Juggling a squirmy crying baby, a diaper bag that was spilling out while this chick was talking over my daughter's screams and simultaneously taking her vital signs inducing even more ear piercing screams as the nurse continued to ask me question after question. Did I mention I have hearing loss and tinnitus?
#3 Once we were taken into an exam room, yet another nurse comes in to reassess Jaylyn, as if the vital signs just taken seconds ago were invalid. Jaylyn was still crying, screaming, and squirming.  And of course, que the explanation of why we were there, more of the same questions, and a very unaccomodating gurney. Of course the ASSumption of a female child and a fever for a week sparks concern of her having a urinary tract infection.  I know how to wipe my childs ass thank you very much, and the adhesive bag wound up leaking all over me. Awesome! At least it was enough to determine that yes they will bill my insurance company for collecting the urine, as it sat in a cup on the counter and not touched or sent to a lab. It was also dark, indicating that Jaylyn was a bit dehydrated.

#4 Because the children's hospital we frequent is a teaching hospital,  of course we dont see a doctor right away, they send in a student! Yay! *sarcasm* So again, I have to explain why we were there, got asked a lot of stupid questions that I had given the answer to already while explaining why we were there. The redheaded homocidal rage was mounting at this point as I was making my own assessment of this student. The lack of confidence and uncertainty while she attempted to examine my child was overwhelming.  It wound up being half assed and incomplete.
 
#5 3 hours later a "Fellow" came in to examine Jaylyn.  His approach, ability to interact with my child without making her cry, and skills were notable. His ASSumption that my daughter's vaccines received at 15 months should have been given at 12 and that they were late made me go redhead on his ass with facts, knowlege and vaccination records indicating that Jaylyn got her appropriate vaccines at 12 AND 15 months. Better brush up on the birth to 18 vaccine schedule there friend ;-). Of course he also began asking the same questions I was asked umpteen times today, along with the student's account of her misinformed and twisted version of what she thought was going on. Although I had explained everything no less than 3 times while facepalming of course. So I had to re explain everything all over again. And it was a good thing I did. Jaylyn was then spared unnecessary blood work.

#6 FINALLY the attending physician sees Jaylyn and yes, you guessed it, the whole explaining and questions routine! And I may have forgotten to mention that because Jaylyn's complex medical history and diagnoses are so rare, we get asked a lot of questions about that too! But alas we were finally discharged!

#7 The "exit" strategy.  Leaving this hospital is a process. After getting your little parking ticket stub validated, typically you insert it into a machine in the parking garage,  pay, and are issued a receipt that gets scanned at the exit resulting in the electronic barricade lifting and youre on your way! So the machine is out of order and they usually have cashiers in booths at the exit, which would be easier than juggling baby, diaper bag, wallet and a transaction with said machine. I get 3/4 of the way to my car and notice a sign stating that there are no longer tellers in booths at the exits. It instructed me to go to a booth by the elevators, all the way back near where I just was. Awesome! Ok, juggling squirmy baby, diaper bag, wallet, and transaction complete. Got my receipt to scan at the machine. Finally got to the car, got Jaylyn settled and we were on our way home! Yay! If it weren't for the clueless woman PARKED right at the exit causing two lanes of backed up cars trying to leave. I see her just sitting in her car. After a few minutes I honked. As did the 20 others waiting to leave. The cashier came out of her booth, and I explained that this woman had been just sitting idle here. Ignoring all the beeps and traffic, and now at this point, irate shouting from the 5th car back.  Ok so booth lady approaches clueless ladys car, knocks on her window and showed her the commotion she was causing and told her she needed to move. FINALLY!  She made it all the way to the machine where you scan your receipt,  scanned her receipt, barracade went up, and still she sat. SERIOUSLY?! I honked my horn and motioned her to go. She opens her car door, peeks out, and says she doesnt know what to do next....SERIOUSLY?! DRIVE! YOU DRIVE! JUST GO! being behind this woman was just the icing on the cake of my day! All the way up the winding exit, I was hoping that she wasnt turning right. She turned right. I saw my opportunity to whip around her and I took it.

#8 I arrive home to explain all that had happened to my family and then bitch blog about it to vent and feel better! But perhaps those that work in the medical field (myself included ) can learn from this. Not all children are tolerant of excessive and unnecessary poking and prodding and not all parents of special needs children have patience of saints when it comes to the barrage of repeated questions. 

Dont ostrasize me!

Whether it's a "well meaning" attempt to "protect" my disabled child from your typical child, or an unfounded act of fear, the message you give to your children is one of continued ignorance. 

When your curious child approaches my daughter, I see wonderment, curiosity, and a hand reaching out to make a friend. When you run up and snatch your child away from such a beautiful encounter, what does your child see? What does my child see?

I want nothing more than for my daughter to be able to run around and play. For now she has to settle for army crawling to propel herself in her desired direction, or walking with maximum assistance. Her determination tells me she wants what I want too. My faith in her tells me she will reach that goal.

She doesn't want to be "left alone", and frankly neither do I! Chances to socialize with other children are far and few between. Sure she has older siblings, but it would be nice if Jaylyn had an accepting friend.  It would also be nice if we didn't have experiences such as this. My daughter is not some contageous delicate flower that will break while simultaneously spreading disease. Cerebral palsy and epilepsy are not contageous,  neither are the causes.

Jaylyn is a happy, determined, rough and tumble playing baby! Rather than saying she is disabled, I prefer the term differently-abled. She finds a way to manipulate her toys, play with her apps on my phone, even semi assist me when dressing her! Despite her challenges, she manages to crawl into the kitchen and tip over the dog's water bowl. Opens cabinets, tears up papers, pulls things off the coffee table, and yes even throws an occasional tantrum when she does not get her way. If I described a day in the life of Jaylyn and left out the difficulties she has, I would be describing typical toddler behavior. Jaylyn has a lot of physical challenges that make a lot of tasks babies her age should be doing, difficult or impossible.  I don't think the things she's unable to do are because she is delayed, but due to her inability to do them physically.  The fact that she does not yet speak definitely makes it even more challenging. 
Jaylyn knows a little sign language,  but again, physical challenges inhibit her from signing more complex words that require the use of both hands. I have been working with her on pushing buttons on her apps to prime her for a communication device. I even have one downloaded that uses pictures and speaks the word.  I know it will take a special person to be her friend and find alternative ways to play and communicate.  Until then, she has her family!

MAFOS and MOFOS!

YAY! Jaylyn finally got her MAFOS! And surprisingly she is adjusting very well to these strange contraptions.  They dont seem to even slow her down with her little crazy army crawl she uses to get around. I cant wait to see even more progress with physical therapy now that she has the support she needs to stand. Will she do it on her own? Will she ever walk? I most certainly hope so and have faith that maybe one day she will. Baby steps! We still have speech and occupational therapy in our near future too.
Yet with the good, comes the bad. Today I realized just how difficult and frustrating a simple thing like shoe shopping can be. Money is tight, so of course I did exactly what I promised my mother I wouldnt do, and used the gift card she sent me for my birthday on someone else. She even carefully chose a store she didnt think I would shop in for my kids to reinforce the fact that I was to get something for myself. I fully intended to get some much needed things for me, but my kids come first.
Not being savvy to this particular higher end department store, I was not aware just how unaccomodating they are even for shoppers with typical children. Their shopping carts are adorable,  no doubt. However,  they lack a seat and even have warnings that the basket is not for children to sit in. They had 1 wheelchair, adult sized. So I was faced with either carrying Jaylyn around or going back out to the car in the pouring rain to single handedly get her stroller while simultaneously holding her. I decided,  due to the fact that my time was limited, to suck it up and carry her to the shoe department I made sure to familiarize myself with online prior to going. I knew exactly which shoes I wanted to look at.  I was mumbling under my breath what a pain in the ass the store was for not having "normal" shopping carts. Of course the shoe department was at the farthest point from the entrance, but I was on a mission and knew exactly what I wanted so I wasnt going to be long. I couldn't have been more wrong!
The large variety of shoes, widths, styles, brands displayed on the store's website was an extremely poor representation of what was on their shelves.  Half a rack, divided in half again to separate boys shoes from girls shoes and of course the styles and brands I had anticipated were not there. So I had about a half an hour to start from scratch.  No cart, no stroller, no seats to sit and try on shoes. The frustration was already mounting.
The process must have looked ridiculous.  Holding Jaylyn and a giant diaper bag. Selecting a pair in various sizes to see which would fit with her MAFOS. Shimmy all this and baby to the floor. Discover the shoes dont fit, and manage to scoop it all back up and repeat. After about the third or fourth pair, Jaylyn let out a sneeze followed by what I could only describe as a clear yellow dam that finally broke free. So adding a runny nose of Niagra Falls proportions to this already crazy experience added to the rush to get out of there ASAP. An employee had walked by me a couple of times and I know he noticed my difficulty just as fast as I noticed he was wearing dress shoes with no socks. He seemed to purposely rush by as if what he was doing was of such urgency, that if he had stopped to assist me would have dire consequences.  I took the hint. I also became less considerate about where I reshelved the shoes that we had tried on.
My daily alarm alerting me that my other daughter will be dismissed from school in 30 minutes had just gone off.  I had tried on every shoe in the girls department. All were too narrow. Unless I wanted a shoe that was 4 sizes too big, even accomodating the MAFOS. I worked my way over to the boys shoes although I was secretly hoping I could get Jaylyn a cute pair of Disney Princess shoes. After trying on several pairs of boys shoes, managing an intolerant baby that was becoming feverish ( and with that, fear of seizures) I found a pair and a lightbulb had gone off as well. Slippers! Slippers with traction would be great! And slippers are sold everywhere! Shouldnt be a problem to pick up a cheap pair of cute character slippers in a large chain department store, right?!?! WRONG! I tracked down the no sock wearing employee, I was a bit winded, frustrated, and on the vurge of tears. Im sure my feelings of being overwhelmed were overwhelming but I managed a smile and asked him where I could find children's slippers. "For her?!?!" "Yes" I said. "To fit over these" as I pointed to the more than obvious plastic contraptions with bright purple velcro straps attatched to the baby I was holding's legs. Trying to lighten the obvious bad mood this dude was put in by my interupting his "busy work" of cutting up a box, I smiled, and gave Jaylyn some encouragement to say "Hi". She smiled her flirtatious smile and then laid her head on my shoulder as she often does when playing shy. She then peaked up to see if the guy was paying attention,  smiled and then hid her face again. But not before sneezing right into mine, all over my black shirt and down her upper lip. We were directed to the children's wear department,  which was on the way out, but of course all they had were $14 slipper socks that were akin to the kind you would get in the hospital,  only cuter with sock monkeys and duckies. "Eff that, we will go to Payless or Kmart" I mumbled to myself and rushed to the register to pay for the shoes.
Now with this giant diaper bag that also substitutes for my purse, digging for my wallet, keys, all while holding Jaylyn who doesnt exactly cooperate with being held, yet cant stand or walk, the cashier obviously doesnt have a clue. Even the simplest gesture of putting the receipt in the bag would have been a huge help. Instead, she extended it to me as if she were expecting me to sprout a 3rd arm just for her. I juggled and shifted things around to accomodate her. Put my keys in my mouth and muttered a few subliminal unpleasantries on my way out the door.
I then had 2 minutes to get to my daughter's school that was 10 minutes away. Hooray for technology and talk to text! After that was all straightened out, me, my snot covered shirt, and my girls had to rush right to an appointment so I had no time to de-snot, change or disinfect myself. Hooray for antibacterial hand wipes!
So the lesson of the day here folks is if you see someone struggling, even offering to put a receipt in a bag is a huge deal and can make a world of difference in someone's day! Dont be a MOFO!

Just another bump in the road, right?!

I am about to embark on probably the scariest part of our journey yet. Although temporarily,  and having my older children at my side, I wont have my partner in crime. My rock. My best friend. He is about to have major surgery.  A scary surgery.  And yes "that" thought has crossed both of our minds. He has been so vocal about it that I had to get medication to cope with the stress and anxiety of it all. I havent slept or eaten properly in days. Jaylyn still manages to brighten my day but I cant imagine, nor do I want to entertain the thoughts that Jays feelings have planted in my mind. So for at least 5 days Im flying solo. And thats if everything goes well. This is all going on in the midst of 3 field hockey games, 2 practices, 2 doctors appointments,  and Jaylyn's physical therapy. So many people ask me how I do it. I do not honestly know how 1 person can do all I do. But I do know that I couldn't do it without all the help my son gives. Where a typical 19/20 year old young man should be focusing on girls, video games, friends, school etc, Dev has set those things on the back burner to help care for Jaylyn.  I thank him every single day and tell him how much I appreciate all that he does. I know how much he has sacraficed. And now I believe he understands just how much I have had to go through when he was younger too. It doesn't ease the guilt I feel but the woman who is lucky enough to capture his heart will be the luckiest woman in the world. I am hoping once Jay recovers that he will be able to have a more active role and be able to participate fully as a parent and member of the household. Since his illness had started just prior to Jaylyn's birth, he neglected to care for himself amongst all the chaos and heartache of Jaylyn's diagnoses.  This is why it is so very important for parents of special needs children to take care of themselves too! The problem was ignored for so long that it has become serious and possibly life threatening.  As if all of the "what ifs" we face daily about Jaylyn are not enough....Now? There are so many "what ifs" about her daddy too. Happy Birthday to me!

Schizencephaly awareness

My schizencephaly awareness video: http://youtu.be/lRDi7QsDS3k

Letting go and forgiveness

Its so easy for an outsider to judge, make a blanket statement, and give well meaning advice. I know it is not meant to be malicious or hurtful but some things sting none the less. As positive as I try to be, I also have to be realistic.  Having unrealistic ideas and expectations will only lead to disappointment and heartache for all involved. 

First of all the reality of schizencephaly and polymicrogyria is not always a good one. The fact that Jaylyn has both of these rare brain anomalies leaves me with so many questions and worries.  There is very little research but I have read every single scholarly article and medical journal entry that I could find on both. I have joined support groups for both. I have spoke with parents of other children of both and a few that have both just like Jaylyn.  I have educated myself more than most of the specialists Jaylyn has seen. Although Jaylyn is not presenting as the text book definition of either, and is making some promising progress she will not "get better". Her brain is severely malformed and nothing will change that. When we first got the news, the neurologist went through the MRI results slide by slide, explaining the images and the parts of her brain that were effected and what we can and cannot expect. 
What I was least prepared for is the blame. I blamed myself. I blamed environmental exposures, I blamed inept care, I blamed anything and everything.  I am so full of anger, hurt and confusion.  Since Jaylyn's 1st birthday is fast approaching, its time for me to let go of those emotions, and stop blaming myself. 

Theres no text book on parenting thats for damn sure but at least you have friends, family and Google to provide all the advice one would ever need. But special needs parenting? Someone that could relate to your specific situation?!? The chances of that are few and far between. I belong to 12 online support groups for the various diagnoses Jaylyn has. Some groups are for networking and others are for adaptive equipment ideas etc. Including the one I created and maintain myself in hopes of raising awareness.  Awareness for 3 extremely rare diseases that even in my 15 years as a special needs pediatric nurse had never heard of. And believe me, I have worked in places where you would think you had seen and heard of it all!  So what makes an outsider or a doctor whos only seen my child a few times such an expert on my child?  What makes them such an expert on me? Who are they to tell me to cheer up and stay positive?  Do I not have the right to grieve for the child we were expecting and planning for? Do I not have the right to cry when I want to cry?  This by no means makes me a negative person.  It makes me real. I look forward to the positives in my life. My children are my everything.  They are my heart and soul. They are the 1 thing I know I did right! And I can say this with pride and without reservation because I get compliments on their manners and behavior all the time.

One less worry

Its an amazing feeling to have even just a little weight off my shoulders.  Enough for me to get a little sleep in between work, appointments and the responsibility of having a special needs child at home.  Since having Jaylyn, the typical mother roles had to be modified.  Instead of chasing a toddling baby around, I support her while she goes through the mechanics of putting 1 foot in front of the other. Screeching with delight and pride as she makes her way from room to room. Although Im the one with the sore back from being hunched over, I am proud too. I will endure a little pain if it will bring Jaylyn joy. Today we had an appointment at Shriners Hospital's CP clinic.  It wasn't as intensive as the one at CHOP but the end result is the same. My baby is getting orthotics to assist her in "walking". Due to the high deductible for durable medical equipment and out of pocket expense for 2 little pieces of plastic and some velcro, we were scrambling for ideas as to how we could afford them. Thats when we heard about Shriners. The burden and worry has been lifted. Any future orthopedic care will be followed by Shriners.  If Jaylyn needs a gait trainer, walker or wheelchair they will help. I am continuing to fight the good fight. Petitioning,  reaching out to the media, and appealing unjust decisions. This alone has consumed a lot of my time. It's draining,  stressful,  and a lonely road. A lot of it seems to fall on deaf ears, ignorant minds, and uncaring hearts. Yet I refuse to be discouraged.  Someone has to care! Over 100 people cared enough to sign our petition.  It was disappointing that more "friends" and "family" didnt care enough to bother but we couldnt be more grateful for those that did. And that is what we are trying to focus on. The positives,  the good things and the little blessings scattered along a very bumpy road. We are facing the biggest bump in the road yet. Daddy will be getting major surgery.  He has put his own health issues on hold long enough and unfortunately this is necessary.  Thankfully we collectively have our own resourceful support team. Our children.  Noone is going to come and save us so we are  saving ourselves. Of course thinking over the details,  waves of anxiety tend to wash over us but this is nothing we haven't gotten through before. I have faith that all will work out.

The fight!

As early as 6-8 weeks old I noticed "something" was just not right with Jaylyn. Hand dominance is not established until a child is 2 or 3 years old, and at the youngest 18 months old. Hand dominance in infancy is a huge red flag, but I was doubted and told I"I worry too much", "I know too much", and "I research too much". No...I am a seasoned special needs pediatric nurse with amazing assessment skills, and most importantly,  I AM HER MOTHER!  But apparently that doesnt trump the "experts" that assessed her for a whole 10 minutes and brushed off my concerns at every turn...for 8 months. Yes I do admit the concerns were subtle signs of an issue, but they are serious signs of serious issues. Lets see, shes left hand dominant, right hand is almost always in a fist, has right eye exotropia, right side weakness and size discrepancies between her left and right legs, AND a history of thrombocytopenia.  Hmmm Im no effing genius or anything BUT wouldnt a child with a history of thrombocytopenia, which is at risk of a brain bleed and/or stroke get an mri to rule out said brain bleed and/or stroke?!?!  No, we were questioned and sent for an xray to rule out a leg fracture due to the size difference in her legs, and because that was negative we were sent to a surgeon to rule out lymphatic disease. All along it wasnt her left leg that was swollen, it was her right leg that is underdeveloped. At every well visit, I mentioned my concerns and was told that if I am so concerned,  to call Early Intervention.  And then there came the delays in milestones. Yet not delayed enough according to early intervention, to be eligible for services...at her 4 month eval anyway. It wasnt until her second early intervention eval that we made any head way. Thankfully a physical therapist had also come out and had given her informed opinion to over ride Jaylyn's eval scores, because again she would not have been "delayed enough" to be eligible for services although her mobility issues were worsening by the day. Even after being found eligible,  it had taken several weeks to get services started due to the amount of hoops the state requires parents of special needs children to jump through for any kind of help. So in the mean time, I had called Jaylyn's pediatrician to let them know she was in fact eligible for services and can she now please get an mri?!?! I was fully prepared to hear she had a bleed, and/or a stroke which led to cerebral palsy. When her pediatrician told me that she needed a specialist to read and interpret it due to the technicality, I became nervous.  Even after the pediatrician spoke with the neurologist,  she still had some difficulty grasping just what the report said. In addition to old blood particles and signs of a stroke, Jaylyn also has a few brain abnormalities that are extremely rare. If you thought neonatal alloimmune thrombocytopenia was a mouthful, try saying "bilateral perisylvian polymicrogyria " 3 times fast! "Malformed hippocampi " , "bilateral schizencephaly ". "Temporal and pariatal abnormalities ". Needless to say...the prognosis is devastating.

Jaylyn's 1st diagnosis

Neonatal alloimmune thrombocytopenia is quite a mouthful. The first time I had ever heard of it was after Jaylyn was born and it was suspected that she had it. It is so rare that unless you are personally affected, or know someone thats affected, you most likely would never hear of it. Only about 1 in 1000 babies in the world are born with it each year. A simple blood test along with the other routine prenatal screening blood work would have spared us this horrific experience.  I could have gotten treatment while pregnant, and Jaylyn would not have suffered an undiagnosed brain bleed or stroke, if only.... A normal platelet count is 150k-450k. Jaylyn was born with a platelet count of 13k, and then had dropped to 7k. She required a transfusion of iv immunoglobulin and 2 platelet transfusions. She initially responded with an increase in platelets to 27k and then they had dropped again, and so our emotional roller coaster began! We were told she was at risk of brain and gastrointestinal bleeds, so she wasnt allowed to eat and they had ordered an ultrasound of her brain. The ultrasound was "negative" but we had requested an MRI when she was transported from the hospital I had given birth to her at, to Nemours Dupont. We had spent a week at Dupont, checking platelet levels, ruling out possible causes, going over my complex history and narrowing down that I had a platelet incompatibility with Jaylyn. In essence, although our blood types were compatible,  our platelet types were not. I had developed a platelet antibody and it had begun attacking her platelets in utero. So even months before she was born, she had a fight on her little hands, and despite everything,  shes still here! The week in the NICU was extremely difficult but we were told that once Jaylyn's platelets returned to normal, she would be fine. The night before we were told she could go home her platelets rose to 275k! We thought it was all over and were so excited to be able to bring our baby girl home! Needless to say, its far from over and we have really just begun!