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.

Tis the Season, but what's the reason?

Ah, the holidays! A time for friends,  family, and fun! Yet this particular Christmas is equivalent to the year I found out  that there is no Santa. I was 8 years old, my parents had just split, and I had to grow up fast to take care of myself so that my dad could work to support me. I had that 1 thing to hang on to. That magical moment was taken away so abruptly and harshly, that the memory of it trumps any others. I guess you could say it was traumatic. I dont remember what exactly sparked an argument with my dad about Christmas.  We were standing in the livingroom of the small 1 bedroom furnished apartment we were renting in Staten Island, definitely a step up from the pull out couch in the basement of a family friend's house on "the other side of the island". I think I may have asked about going to see Santa. It most certainly was not my intention to enrage my father, who's temper would go from zero to angry active errupting volcano proportions in a matter of seconds and without warning. He often referred to himself as a "dry drunk". No longer an active drinker, but still managed to have the angry outbursts that alcohol abuse is often responsible for. He did go through an awful lot of listerine and nyquil for someone who didnt seem to be sick or have a problem with halitosis.  The next thing I knew, he yelled several "exploitive deleted's" about there not being an effing Santa, that he was Santa, as he pulled a large black plastic trash bag out of the closet, proclaiming his effing Santa status. Throwing it at me, saying here are your effing presents, and Merry Effing Christmas! My worst and most outstanding Christmas memory.
As I had my own children,  making new memories, baking cookies, seeing Santa, I was trying to wipe that horrible memory from my mind. Yet every Christmas,  it pops up to serve as a reminder that no matter what I am dealing with as a parent, no child deserves to feel that way! I always put "from Santa" on everyone's presents, even my 20 year old's. Even when I had very limited means, I made sure we still made good memories and celebrated the spirit of giving, paying it forward, and helping others.  I am so thankful those values have been instilled so deeply. Deeply to the point that my 11 year old said that she had only asked for 1 thing this year because of our "situation" even though she deserves so much more!  We usually donate to Toys for Tots, Camp out for Hunger, and a few other local organizations this time of year. And because of my giving nature, I now find myself on the receiving end of such acts of kindness and giving. From the food bank that delivers, to the anonymous angel from Jaylyn's early intervention program who bought her toys and clothes. I am floored at the generosity, and forever grateful although heart broken and ashamed to be in such a lowly state. So sadly this holiday season,  I do not have much to give to anyone except hair, so the next local "Locks of Love" event will be getting 10 inches of my ginger locks!

Dear Devon, Love Jaylyn

Dear Devon,
If I could speak, I would have so much to say! But that does not mean that my expressions and vocalizations do not mean something too. You are an amazing big brother. And I know that it was somewhat easier being a big brother to a typical sibling than it is being a big brother to me.

From the beginning, you were so helpful and caring. Taking care of mommy, and you have been there for me since the fetus!  I am definitely not what everyone expected and I know it must be frustrating trying to figure out what I want,while still trying to accept that I am not a typical child. I am special needs, and I will need care for the rest of my life. Youre definitely not alone in that because sometimes mommy and daddy have a tough time of it too! But please be patient. I cannot help the way that I am, and its just as frustrating for me when I cant communicate my wants and needs as it is for you.

So out of frustration,  when I throw myself back, understand that its not because I want to hurt you. I am trying to be heard and do not know how (Mommy knows someone that was sorta the same when he was little). I know at 15 months old, I should be doing a lot more than I can do, especially feeding myself and holding a bottle. It must be so exhausting having to do something for me all the time that I should already know how to do. Nothing I do is out of malace. The amazing thing about special needs children is that we are so pure of heart and mind, we would never hurt anyone on purpose.

I know you were expecting a little sister that would be running behind you and getting into things by now. Babbling your name and being more interactive.  Instead, I have to be carried everywhere.  Again, imagine how frustrating it is for me! I want to go. I want to walk, and I want to talk! And I can see it in your eyes and hear it in your voice when you are having a hard time understanding MY way of communicating. Sometimes it makes me cry because all I want is for you to understand me.

Understand that because my brain does not communicate with my body that my limbs do not work right, so dressing me does take time and patience. Do not get upset when my legs involuntarily cross. Take your time and listen to mommy on how to do it. I do appreciate it and mommy sure can use a break too! Besides, I love our bonding time! I love the way you make me laugh and smile! And let me play with your hats!

I know that if I were a typical child, it would be easier on everyone and mommy wouldnt have to rely so much on you to help take care of me. Im sure you would rather be hanging out with friends than going to the umpteenth doctor's appointment or having to do extra chores because I was such a handful mommy didnt get a chance to even sleep, let alone get anything done.

You are one of the most important people in my life! I love you so much! I know I cant say it with words yet or if I will ever be able to, but look into my eyes! Look at my facial expressions,  and pay attention to my body language. I know that you have overcome your own difficulties which is why I think we have such a close bond. So please be patient. Please understand,  and most of all, please stay awesome!

So we had a busy weekend

Cruising and pulling to stand!: http://youtu.be/SnAIwuznQ7o

Too many hands in the cookie jar

Disclaimer: This is definitely my longest ever blog! I apologize for any redundancy,  but I feel I need to keep Jaylyn's story alive in hopes that someone will finally hear us and see just how much the healthcare system needs to change for special needs children! It is also my outlet and not a cry for attention or sympathy, merely a vent. The only thing I look to gain from this is the unloading of my busy mind and to raise awareness.

When my older children were younger, we collectively went to a Family Practice. A one stop shop for routine medical care, vaccines, etc. I decided it was time to find my children their own pediatrician when one too many times I was told to take them to the ER for things such as asthma flare ups and pink eye because there were no openings. I was disappointed because I still see the doctor at the family practice myself, and find him to be superb across the board. It was the office dealings I had issue with. He himself was disappointed but understood and still often asks about them, gives them hugs and high fives when they accompany me for an appointment.  I couldnt ask for a better, more personable doctor.

And so I found a pediatric practice that I found to be more than adequate for what I was looking for. If my kids were sick, they were seen in a more than reasonable time frame, and I found that even the nurse practitioners were on their game when it came to diagnoses and treatment for illness or injury. I was more than satisfied with them caring enough to call and follow up if my children were seen in the emergency room or admitted to the hospital. 

So when I found out I was pregnant with Jaylyn,  I had no reservations in taking her there as well once she was born. After all, despite the many red flags, I was assured all was well and "normal".  So why then, if being so satisfied, would I dare switch pediatricians now you ask? In the 15 months that Jaylyn has been a patient there, it has been one thing after another and it has finally escalated to the point of switching for her safety, well being and yes even privacy.

Let me rewind for a moment to my last ultrasound appointment before delivering at 37 weeks. Not 1, not 2, but 3 ultrasound techs saw "something" that the doctor brushed off as "nothing to worry about" that turned out to be ventrculomegaly,  and it was in fact noted on the ultrasound report as such. Of course I found this out many months later from an attorney reviewing my records to see if I had a case. The next day, I began contracting to the point of warranting going to the hospital.  My pre admission blood work was done in anticipation of me being in labor. I had an alkaline phosphotase level of 1100. A definite red flag that something was wrong. The contractions had stopped and I was discharged with instructions to follow up with gastroenterology because that particular lab value COULD mean my gall bladder was acting up.  Mind you, I had none of the symptoms of having anything wrong with my gall bladder and my immediate fear was that I possibly could be suffering the effects from the vinyl chloride exposure I was subjected to from a train derailment where I live. After all,  liver cancer is one of the major things vinyl chloride causes. I received a call after 5pm that day instructing me to return to the hospital because the doctor that discharged me decided to consult the specialists that were following me and that particular lab value could very well be the early signs of placenta abruption which is an emergency.  Cue the labor induction.  All seemed to be ok until it was time to push. Jaylyn's heart had slowed and stopped. The doctor said we need to get this baby out now. And so I pushed with all my might and within 2 minutes,  she was here! Along with a team of neonatologists to make sure she was ok.  I noticed she was covered in bruises and petechae.  Her feet were so bruised that they resembled an eggplant in color.  I also noticed that the sclera of her right eye was filled with blood. All from such a rapid delivery, I was told and assured.  This wasnt my first, or even second rodeo, but seemed plausible.  I myself began having issues and required iv meds to stop the pain and bleeding, so Jaylyn was taken to the nursery until the pain meds wore off. Once I was ok, I had asked my nurse if I could have my baby. She began acting strange and quickly came out with a response I immediately saw as BS. She told me that Jaylyn was a little chilly after her bath and had to be taken to the special care nursery to be warmed up. Again, not my first rodeo, warmers are kept in the regular nursery too. With my heart in my throat, I walked down two long hallways to where the special care nursery was. It was a locked unit that required being buzzed in and a procedure to scrub prior to entering.  Instead of being buzzed in, a nurse poked her head out the door and seemed annoyed that I was there. I felt as if I had showed up early to my own surprise birthday party and ruined the surprise.  Something told me I wasnt going to like it anyway. She checked my bracelet,  grabbed her scissors and had cut off the yellow bracelet that said " FALL RISK". She said they annoy her and are not necessary.  Ummm yea they are if you have menieres disease you dummy....Ihad been symptom free and hadnt gotten dizzy or lost my balance in a while, so I kept my thoughts to myself. Jaylyn had ivs and the nurse was dipping a pacifier in a medication cup with a peeled back foil seal. The nurse told me Jaylyn was getting glucose because her blood sugar was low because she was not allowed to eat. " why not" I had asked. Her response was that I shouldn't have been there and that I should have waited for the doctor to talk to me. I gave her back the same attitude she was giving me. I told her what my nurse had told me and she just huffed and puffed her ass over to the phone to call the neonatologist to come and talk to me. I got devastating news at 4am and had noone to talk to. Noone at home answered the phone. I had to process that my daughter was diagnosed with something I never heard of and knew nothing about. Neonatal alloimmune thrombocytopenia.  Hense all the bruising, petechae and her not being allowed to eat due to risk of bleeding. That wasnt the only place we had to worry about her bleeding.  Her brain as well. An ultrasound was ordered, and in the meantime, so were transfusions of iv immunoglobulin and platelets. Makes me wonder now,if that ventrculomegaly that was brushed off as nothing was related (it was later discovered that it was). I also wondered if those elevated lab values were related (according to all of the research I have done, it also was) So all those red flags that this little pediatric lpn put together were missed by "experts". Jaylyn's platelets didnt respond satisfactorily to the transfusions and so she had to be transferred to a children's hospital.  The brain ultrasound was found to be negative.  After talking to other moms of nait babies and doing my own research, ultrasound often misses bleeds and mri is strongly recommended.  The children's hospital said that was in the works, yet after a week of being there, Jaylyn recovering, we were discharged without it and the newborn hearing screen. We were discharged with the notion that Jaylyn would have no further issues. I was nervous regardless and waiting out the results of her follow up lab work was excruciating. 

All seemed to be well. Eating, sleeping, pooping and peeing like newborn babies are expected. At around 5 or 6 weeks, I noticed a little difficulty dressing Jaylyn due to her right arm being a bit stiff. I also noticed that she seemed to have hand preference and that her right hand was always in a fist.  To be on the safe side, we mentioned it to the pediatrician.  I myself know that infants should not have a hand preference. That happens closer to age 18months to 2 years of age...unless something was wrong. It even states this on one of the most trusted of websites for medical information  (CDC). I mentioned this at every appointment up until Jaylyn was 8 months old " wait and see", " hmmm thats strange", "its a newborn reflex" were what we were told. At around 3 to 4 months we noticed that when Jaylyn's eyes should have began to set normally, her right eye tended to wander out. We were sent to a pediatric opthomologist. At 4 months we also began to notice a size discrepancy in Jaylyn's legs.
Our intial appointment with the pediatrician regarding this issue led to everything but a flat out accusation that Jaylyn's leg somehow were broken. Xray was negative, cue the suspicion that it was lymphatic in nature and all of the specialists,  tests, etc involved in ruling that out. Of course it turned out that the left leg was normal (not swollen) and that her right leg was under developed. YET no alarms are going off in anyones head but mine. Add in more and more missed milestones, concerns, and seizure like activity along with a reccomendation to call early intervention. Early intervention found that Jaylyn was "not delayed enough" and that was good enough for the pediatrician to run with the idea that Jaylyn was normal and I was nothing short of crazy. They seemed to placate me enough to refer me to neurology.  The EEG was normal (of course because Jaylyn wasnt exhibiting seizure activity during the 20 minute test). However he did say that her delays were a concern and suggested a reevaluation by early intervention and thankfully the reevaluation and MRI results were timed perfectly and she was found eligible for physical therapy .  I again begged and pleaded for them to put the 2 and 2 together that I had when Jaylyn was just a few weeks old. Considering her history of n.a.i.t. and everything on her right side being affected, I was sure she had had a stroke and/or cerebral palsy.  A pediatrician in the practice that had never even seen Jaylyn had called me, gone over my months of concerns and actually listened to me and agreed that all of this had warranted a brain MRI months ago.

Mind you, as if all of this wasnt frustrating enough, I had received a few calls regarding another "Jaylyn Martinez" that not only was a male, but 12 years old with a completely different birthday.  Hello patient privacy act that everyone signs? Are you there? I had also had a few encounters with the triage nurse and other staff refer to Jaylyn as "he" or "him" and often wondered how many times our information was shared with this other Jaylyn's mother. After the first time, I was assured it wouldn't happen again. Unfortunately,  it had. Again and again. My only solace and this practices saving grace was that one doctor that had listened! And so the MRI was ordered. The results were so devastating,  alarming, and complicated that a specialist had to be called to interpret it for the pediatrician.  Not only had there been a missed bleed, a stroke, ventrculomegaly,  but also 2 rare brain abnormalities.  Schizencephaly and polymicrogyria and a bunch of other stuff Im still teying to comprehend.  Im not going to get into great detail explaining all of the findings but as a result Jaylyn has epilepsy and cerebral palsy.  And being a pediatric nurse that has worked exclusively with special needs children for the past 15 years, I know all too well what is in store.

Jaylyn's 1st cold led to an ear infection which led to antibiotics and allergic reaction to said antibiotics.  She was put on another that had worked well. Cue the dreaded 15 month vaccines. Jaylyn immediately spiked a fever within 24 hours of receiving them. Stopped eating. Developed cold like symptoms and we were told it was just that. Thats right, I do not know my own child well enough to know that she went from eating everything that started with "F" and ended in "OOD" to absolutely nothing for a week straight.  We made an appointment,  "just a cold" but put on an antibiotic for an "ear infection ". I had asked if Jaylyn could be put on the one we knew had worked and that she wasnt allergic to. We were assured this one would be ok. Once we got to the the pharmacy,  the pharmacist said he didnt fill it and had called the pediatrician thinking this was some sort of mistake. He informed me that the antibiotics prescribed had at least a 10% chance of causing the same reaction as the one she was allergic to. I called the pediatrician from the pharmacy and spoke to the nurse that had rudely replied with "the doctor still wants her to have it".  The pharmacist shook his head and reluctantly filled it and said to make sure we have benadryl on hand, which we did. So status post over a week of continued fevers and "cold symptoms" we called the pediatrician again. I had asked to speak to triage. "Let me see if they are can take your call".  A 3 hour back and forth phone event that led to being advised to take Jaylyn to the emergency room where it was determined that her symptoms were related to a reaction to the vaccines, but her ears looked fine. The next day Jaylyn began breaking out in a rash from the antibiotics so we stopped them, called the pediatrician and started her on benadryl.  No follow up to check and see if she needed another, how she was, or anything of that sort. I was rather relieved that they put the final nail in the coffin of our relationship.  After talking to the parents of patients of my own, I have found a practice that has experience with special needs children and the knowledge and bedside manner that should be of any pediatrician.  My 11 year old was transferred as well since her 2 month on going ankle sprain may in fact be a broken bone. We are in the process of seeing specialists etc to make that determination. 
Throughout all of this, life has continued to jip me of good karma. Not that I do good deeds for the purpose of getting something back in return, but we really could use a break! All of the illness, injuries, Jays surgery and job screwing him right before the holidays is too much! Jay was released to return to work after his surgery as of December 1st and we planned on playing catch up on the mounting bills and still having enough to give our kids a Christmas.  "We will call you with your schedule" they say! And now they are waiting on someone elses departure in a week or two before putting him on the schedule. So how its looking, the biggest gift under our tree this year will be the gift of disappointment. I have never felt like such a failure to my family in my life! The demands of work, managing all of Jaylyn's appointments, therapies and care, household issues are taking its toll on my own health and emotions. I have put off my own appointments due to the countless appointments, copays and over the counter treatments for colds, pain, fevers, etc to the tune of what most people pay for rent a month.  How could I possibly be in the holiday spirit?  Even a song as light hearted as "I want a hippopotamus for Christmas " has me on the verge of tears. All of the "it will work out", "we will get through this" and "youre so strong" comments mean nothing when you know that youre failing your children. Yes they have a roof over their heads, food in their bellies, and clothes on their backs,  but thats only because we are behind on so many other things to make that happen. I have done all I can to get out of my insurance plan that sucks up a third of my paycheck. I had emailed the head hancho and my pleas have been ignored. I have spent countless hours doing anything and everything I can to get much needed help but with Jay in limbo as to when he will return to work, we are stuck and ineligible for anything! Jaylyn is expected to be without health insurance for 3 months in order to receive NJ FamilyCare YET my 20 year old INSURED son was sent cards and a welcome letter without question. When I called to inquire, "I dont know how that happened". The system sucks and NEEDS TO CHANGE! Local politicians capable of making the much needed changes to the health care system for special needs children are only good for blowing sunshine up people's arses during election time because we all know children like Jaylyn grow up to be adults that cannot vote. The expendibles. The innocent victims of a corrupt world.
My mother's words resonate in my mind to just breathe and take 1 thing at a time. I wish it were that simple when youre getting hit with 5 things at a time, trying to feel better,  doing the very un-nurse like thing of taking someone elses left over antibiotics because I can neither afford the time or money to get the care I need. I have too many people depending on me and it still doesnt seem to be good enough! I do not, nor am I looking for anyone to blame for Jaylyn's condition but there are some power points in both my prenatal care and her early months that have delayed her treatment and care. So in Mama bear fashion, I do intend to investigate possible causes such as my vinyl chloride exposure and the water contamination prior to, throughout and after my pregnancy as well as the many oversights by various medical professionals that were so blatant to me right away, and to others in hindsight.

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. 

No news is good news

Jaylyn officially turned 15 months old the other day and had her well visit and age appropriate vaccines.  The visit had jostled some thoughts and feelings.

First, the nurse goes down her list of questions about insurance, family history, changes in the home...etc...and then she comes to the list of milestones Jaylyn should be meeting or should have already met. She treaded lightly this time. I guess she recalled the tongue lashing I had given her last time.  When you see a child that visably and obviously cannot do certain things, why would you put the parent in that situation to even ask? It hurts enough to know my daughter cannot walk or talk. But to be reminded like that? Looked at and judged as if it was something I did as a parent?

I sincerely wish more of the staff in the pediatrician's office were more savvy and experienced with special needs children.  One particular pediatrician in that practice has been its saving grace from me switching providers.  I have used this practice for years (my oldest is 20) and never had an issue with the care of my children.  Then again over the course of our countless visits and time spent in the waiting room, I do not recall seeing even 1 disabled child.  The fact that some of the nurses were staring at Jaylyn in her MAFOS makes me wonder how much it was even touched upon in nursing school and where they did their peds rotation. Maybe because I have been working with special needs children so long, it doesnt phase me in the least when I see a disabled child with adaptive equipment.

So after the nurse finished her bla bla bla list of things Jaylyn cannot do, the doctor comes in and goes over the growth chart, where Jaylyn is and where she should be. Again putting her in a "typical" box. And then the milestone list with the doctor. Can she do this, can she do that....no, no AND no. BUT...she can do this, this AND this! And because of her physical limitations,  Jaylyn has been deemed to be on the level of a 6 to 9 month old developmentally.  It doesnt matter that she has quadriplegic cp yet will reach for my fingers, scootch off my lap and expect me to support her as she goes through the appropriate one foot in front of the other motions. It does not matter that she has the absolute desire to walk.  My favorite question that I have been asked at every single appointment since Jaylyn turned 6 months old is "can she drink from a sippy cup"? Hmm lets see....she had an intrauterine stroke that affects her entire right side...including her mouth. Due to that, even with a bottle, at least 1/3 of its contents winds up down her chin. With a sippy cup? Its more than half! So do we risk hydration and calories for the sake of a milestone? Can she hold the sippy cup with a contracted right hand? These are the things that make me irate. As often as Jaylyn is seen, every visit feels like an introduction.  As if they do not know by now that Jaylyn is not typical yet persue the avenue that she is with some of the questions and expectations.

We then touched on the subject of Jaylyn's sleeping habits. Or lack there of. Of course the suggestions offered were things we have tried. And then it was suggested that Jaylyn should have a sleep study done to rule out seizures. Considering her MRI findings, I wouldnt be surprised if her brain abnormalities have something to do with why she is so nocturnal and has trouble sleeping. Or perhaps its hereditary. Myself and my oldest child are night owls.

Not every child is a perfect cookie cutter mold that fits into the perameters and growth charts. And children like Jaylyn should have their different-abilities takrn into consideration during appointments.  Especially with a medical practice that will be following her throughout her life.

What I am Thankful for...

All across social media, people have been taking a "challenge" of sorts. Posting for so many days what they are thankful for, for each given day. It is a refreshing change from a lot of the negativity and political disagreements that monopolize my news feed.

Its far from a "challenge" and no secret what I am thankful for, not just for Thanksgiving but every single day. Every day Jaylyn is with us. Every moment, good or bad. Every smile. Every sloppy, drool filled open mouthed attempt at giving me a kiss. Every time she snuggles up close and tight.

As I scroll through the posts in my online support groups for Jaylyn's various diagnoses, I am thankful she is doing as well as she is. That she is even here at all.  That she survived N.A.I.T. That despite her other diagnoses,  she continues to persevere.

I remember a few Thanksgiving gatherings from my past where everyone at the table would take turns saying what they were thankful for. If that were to occur today, I think I would probably break down and cry.  Yes, I am thankful for the usual list of things everyone else is thankful for. A job, a house, family,  friends, etc. Those are the easy answers. The typical replies. The things many of us take for granted.  I am still thankful for those things. However,  Jaylyn will forever be in the forefront of that list. I would like to thank all of those who have joined and supported Jaylyn's Journey.  I wish you and your families a happy and healthy holiday season!

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!

When were they going to tell me?!?!

When waiting for a diagnosis or test results, nothing can cushion the blow or prepare you for bad news.  Especially when it comes to your children. Most of Jaylyn's life, from the night she was born up to today at her CP clinic appointment,  that wound in my heart that was just about healed...got ripped open all over again.
That moment where you feel that your mourning for the child you thought you were going to have is over, and then realizing just how far from it you are.
Not that doctors purposely lack sensitivity or bedside manner,  but the manner in which each blow of a diagnosis was delivered, certainly was lacking in those departments! I was never asked to sit down to discuss any of these things with anyone.  Im certainly not complaining about the care or the physician's that treat Jaylyn, quite the contrary. If I ever have questions,  all I need to do is ask and the docs are great at getting back to me. But why am I left with so many questions?  Why wasn't  I sat down and given the full rundown?
Why are there so many pieces of the puzzle that I myself have to put together? One answer to that is continuity of care! With so many doctors even in the general pediatric group that sees my typical children, many many mistakes have been made.
With the multitude of specialists at 2 seperate children's hospitals,  information doesn't always get passed along to the appropriate persons. Most often, the parents. As was the case today. Jaylyn's neurologist had diagnosed her with right hemiplegic cerebral palsy several months ago because that was the side that has shown the most concern due to her stroke. I noticed some issues with her left side as well, such as her inability to pick up small objects using the pinscher grasp. I chalked it up to being delayed. Or maybe I didnt want to believe it. Maybe I let my guard down and wanted to be hopeful. And because I was hopeful, had faith, and had the highest hopes that she would only have to worry about one side of her body being affected, that wound in my heart was ripped open yet again.
It wasn't so much the news itself but the delivery.  The assumption by the orthopedic specialist that I had already known. Yes Im a nurse.  Yes my area of expertise is special needs children.  But at home, I AM MOM! I get scared, I panic, I worry, I question and doubt myself and call the pediatrician at the slightest sign of anything being wrong. But...with being a nurse, I also have high expectations of the peers and fellow medical professionals that provide my daughter's care. The care she received today  in and of itself was superb!  However,  hearing a change in your child's diagnosis shouldn't be via the physician's dictation over the phone. He had used a few archaic medical terms that I myself had to re familiarize myself with. Once I had gotten home to do that, I was upset. I did what any mother would do and began to Google.  My main points of reference aren't mommy blogs or message boards. I use the same sites as pediatricians do, so I dont get misinformation overload. After reviewing the word tetraplegic (aka quadriplegic cerebral palsy ), I looked at Jaylyn and then the definition of the diagnosis.  I looked again at Jaylyn and yet again at the diagnosis.
She did it again! Jaylyn has surpassed the expectations. She has beaten the odds! And even though I already blasted this little secret all over Facebook today, the orthopedic specialist did say that (even though he isn't supposed to ) Jaylyn is so determined that he thinks she will walk!  Not like a typical child of course but she will walk nonetheless. So today was a bitter sweet day.

"We don't address the cause, we treat the symptoms"

Probably the BIGGEST mistake in healthcare in the United States today!  In the almost 15 months Jaylyn has been on this earth, I have heard this phrase more times than I can count. I cringe. I start to believe my brothers conspiracy theories. It makes entirely too much sense to address the cause and do something about it. However,  the cause is often ignored and only the symptoms are treated. No matter what your age, stage, or diagnosis. If you've gone to the doctor for a problem, the answer is 9 times out of 10 a prescription to treat the symptoms. 
My BIGGEST problem with this?!?! Jaylyn has 2 extremely rare brain abnormalities.  Do I expect early intervention to become immediate experts?!?! No of course not! But I do expect them to understand that although "The State" says they "normally" wont provide speech therapy until after age 2, take into consideration that alone, either/or of these diagnoses affects speech. Most of these kids are non verbal. ADDRESS THE CAUSE! Why wait 2 years and allow those speech and swallow muscles to become weaker?!?!
Jaylyn will be 15 months old soon. She doesn't speak. She vocalizes some sounds. Mostly vowel sounds. But no purposeful speech. I do get excited when she makes those "ma ma ma" sounds. I am hopeful that she will be one of the lucky few that can speak. She is determined!  As am I to make sure she gets everything she needs to reach her full potential. 
But addressing only symptoms? So put her on meds to stop the constant drooling instead of addressing the fact that her facial muscles are weak on the right side? Does that make sense?!?! Only in 'Merica.

We embark on yet another adventure!

Kids do not come with instructions.  And special needs kids?!?! They dont come with instructions, a how to manual, or even a diagram to give you a hint of whats in store! Of course I am using my sarcastic sense of humor here, because even parenting typical children has its challenges! However, a map to help navigate the endless appointments, specialists,  services and agencies sure would be nice! Its more than overwhelming,  and sometimes I just want to curl up, take a nap and wake up to a different set of circumstances.  And by that, I mean that maybe these agencies and powers that be that seem to know more about my daughter's needs than I do would make things just a little easier. Nothing has been easy since Jaylyn was born. Not even getting the necessary testing for diagnosing and treating her. I certainly do not expect people to go out of their way, make exceptions or bend over backwards for the simple reason that Jaylyn is special needs.  Just perhaps be more aware of the already difficult time parents are having. Understand that we are grieving. We do not want a pity party, but we certainly do not appreciate the seemingly purposeful hard time we are given getting care, services and benefits for our children. 
Tomorrow's adventure is to the CP clinic at Shriners. We were exclusively a CHOP family until we were faced with more obstacles getting services and benefits than ANY parent should. We were faced with the reality that Jaylyn will need assistive devices and equipment that we couldnt possibly afford.  Even my weekly insurance premium is too much and I will be faced with a difficult decision when it comes time for open enrollment.  Thank goodness for the good people at Shriners who provide Jaylyn's orthopedic care and equipment free of charge! I hope to one day be in a position to pay it forward because I firmly believe in it! I know when I had the opportunity to give a sick little girl a doll for Christmas that was sold out, the smile and joy it brought her filled my heart. The little pearl beaded angel she had given me in return still sits in my china cabinet as a reminder of that day and the reason behind it. I have to keep thinking that all the difficulties and challenges we are facing now, will lead to something good in the very near future. Jaylyn is my little reminder every time she smiles at me.

I feel so un - American but Im ready for next year!

I have never missed a chance to vote on election day since I was 18 years old.....until last year. Now that things are more in perspective with Jaylyn's diagnoses,  I have been sitting here thinking how I could possibly vote today with my crazy schedule and small window of opportunity to sleep. Of course it dawned on me just moments ago to look into absentee ballots. Too late for this year of course, but I am more informed and prepared for next year. And of course I know I am not the only one who has been in this situation.  Being the primary caregiver to my special needs child doesnt give me much opportunity to get out of the house for the trivial things like a haircut or sometimes the important things, like voting! How many other families must be faced with the same dilemma.  They want to vote, but are so overwhelmed with the care of a loved one that getting out to the polls is impossible.  If only things like this were in that "how to" guide to life. A "life hack" meme on Facebook perhaps. But of course things like this dont go viral. Even spending countless hours petitioning the Senator for better health care options for special needs children barely got the attention it so deserved!
Sometimes the weary parents of special needs children need a simple little break. Yes, even the mere suggestions of the simple things such as absentee ballots feels like a vacation to me! A refreshing break after hitting wall after wall in the obstacle course that is being the parent of a special needs child. 

Jaylyn is a True Eagles fan!

Jaylyn's Eagles Tribute: http://youtu.be/RfMjIgng9ug

Epilepsy awareness month

Check out @devsamjt's Tweet: https://twitter.com/devsamjt/status/528978418021720065?s=09

Special needs nurse vs special needs parent

If I had a dime for every time someone has said that Jaylyn is lucky to have me as a mom, Id be rich! This is often said to me because I am a nurse. Not only am I a nurse, but for the past 15 years, I have been blessed with caring for special needs children.  I had tried other specialties, looking for my niche. Med/surg, rehab, geriatrics, psych. And although there were many aspects I did enjoy, pediatric nursing has my heart. Special needs kids have a light inside them so few can understand. So many have said to me "I dont know how you do it", "it must be so depressing!". To the contrary, there is nothing more rewarding than taking care of a completely dependent child, perhaps on a vent and in a wheelchair that still manages to make others smile! I have had some heart breaking situations but through it all, these kids amaze me with their strength and differentabilities. Knowing that some of these kids are the way they are at the hands of a parent or caregiver, THAT is heart breaking! But hearing a vent dependent baby use their speech valve for the first time and see their reaction to their own voice? Watching those first steps being taken by a child whos prognosis was sure death? Watching them reach adulthood and have loving relationships of their own? These gifts are priceless! I have amazing memories I will cherish along with the milestones of my own children. 
And then I had Jaylyn!  Not only was she quite the unexpected surprise, so were her diagnoses.  All of them! And then everything there was to follow. The therapies, early intervention,  doctors appointments,  specialists, equipment, explaining to siblings and family. Explaining to friends. Explaining to rude or ignorant strangers. Its never ending. Unless you actually spend a day witnessing all that we do to provide routine daily care for Jaylyn,  you couldn't possibly have a clue just how difficult being a special needs parent is! How exhausting. How heart breaking.  And yes,  how rewarding and fulfilling. 
Whats even more heartbreaking is that I have to leave her to provide the same for someone elses child while unable to afford it for her.
At 14 months old, Jaylyn is still unable to do a lot of things babies her age can do. Hold a bottle? Feed herself? Crawl or walk? No. None of that is happening. Well she still army crawls and manages to drag herself around that way but theres no such thing as a quick trip to a store with such a dependent child. I cant carry her in to a store or appointment and set her down for a second like other babies.
I now find myself not comparing Jaylyn to typical babies anymore, but to patients of past and present. Shes not as bad off as this one but shes worse than that one. I wonder if she will always be non verbal, or be able to say some words. Will she ever be potty trained? Will she lose skills? Or one day be able to do the things she should have been doing at 6 months? I know she is happy and at least partially unaware of her limitations.  Its somewhat comical and heart wrenching at the same time to witness her scootch off the couch and reach for my fingers so she can "walk". Jaylyn's version of walking is completely assisted with total support. Shes not able to fully weight bare but that doesnt stop her from wanting to go either.
So the happy and enjoyable moments I have witnessed in my career also break my heart on the home front.  So is Jaylyn lucky to have me as a mother? I wont dispute that but I will say I am far more fortunate to have her as my daughter!

Jaylyn's 2nd Halloween

This time last year, we had a sense of calm. We thought the worst was over! When Jaylyn was born with low platelets and required transfusions and a week long NICU stay, we were told that once her platelets normalized that she was out of the woods and we had nothing more to worry about. And so for this brief moment in time, we thought no different! We were relieved! I felt as though I could breathe again after holding my breath. It wasnt until Jaylyn was around 4 months old that we began to suspect that something more was wrong. So in this moment in time I can revel in my happiness. Enjoy the calm. And honestly the only thing thats really changed how I feel about Jaylyn is that I love her even more! We were planning on Jaylyn being able to walk at this time and fantasized about her running door to door to trick or treat.  So this years Halloween is bitter sweet. Jaylyn still mostly army crawls to get around. She has been getting up on her knees more which is very exciting and we wonder if next Halloween I will be blogging about having to chase after her. I certainly hope so! And I look forward to looking back on this one next year! Have a happy and safe Halloween from all of us here on Jaylyn's Journey!

Busy days are a blessing in disguise!

As much as I do not slow down, relax, or even sleep, I consider it a blessing in disguise.  As much as I long for a day at a spa, or even going to get my hair done, I know exactly what will happen. I will think. I will dwell. And I will cry! As much as I would love a day just for me, I am thankful I never get that. As much as I would love for a friend to reach out and invite me somewhere, for a coffee or a nice cold beer, I would not enjoy it.
Being busy and overwhelmed, on high alert and full of constant worry and anxiety is by no means an enjoyable feeling. I hate it! But I hate sorrow more.
Oh but "everything happens for a reason". "God wouldnt give you anything more than you could handle". "God only gives special children to special people". "But Jaylyn looks normal, I cant even tell theres anything wrong with her". "She will turn out just fine, doctors are always wrong". Each of those phrases has been said to me on more than 1 occasion and each time I hear them, its like a knife in my heart. Until you live this, you will not understand and I wouldn't wish this on anyone. Its one thing to lose a loved one when they die. You grieve and mourn and the finality of it eventually settles in and with each day that goes by it becomes easier to cope and accept. When you have a child with special needs, you never want to fully accept the diagnosis, the prognosis, or the expectations and limitations your child will face. I admit I am still grieving and even though it took 8 months for the full shabang of diagnoses, I knew there was something seriously wrong. The "wait and see" approach did not sit well with me and I pushed for answers. Not the answers I wanted or expected, so it was as if I was not prepared at all to be hit with all of this at once.
I am very analytical by nature and am always looking for the "why". Why did this happen, what caused this, why me, why her, etc etc....not in a self pity "woah is me", attention seeking way. I just really need to know as if it would perhaps ease some of the pain. Another phrase I just LOVE to hear.... (analytical and sarcastic by the way) is that "it could be worse!" The only 2 people I do not get upset with for saying this to me is myself and Jay. Of course it could be worse! She could have suffered a great deal more than she already has, or not have made it at all! I think about that all the damn time, and I certainly do not need an outsider pointing that out when they do not comprehend in the slightest all we have been through and will continue to go through. We have a child that is essentially a ticking time bomb that has difficulty communicating her needs. Sometimes living in the now, seizing the moment and enjoying her while she is here is not the easiest thing to do when we are all exhausted from staying up with her, trying to guess what it is that she wants or needs. Whether or not she is in pain. Wondering if its her teeth cutting or something far more serious.
A few weeks ago, with 'the great ear infection fiasco of 2014' as I like to call it, I dont think anyone slept. The fevers, the crying, the temperature taking, the allergic reaction to antibiotics,  3 pediatrician visits and a trip to the ER. But I was too busy and exhausted to even think...thank goodness! The illness exacerbated Jaylyn's epilepsy,  lowered her seizure threshold,  she had a significant event and required a dosage increase of her seizure meds. Out of all of that, what upset me the most was an insensitive remark that the triage nurse had made when I had called about Jaylyn's allergic reaction to the 1st antibiotic she was put on. "Is JAQUELINE still pulling at her ears". 1st of all, the dopey bitch got my daughter's name wrong. And 2nd of all, Jaylyn has never in her 14 months on this earth been able, or made an attempt to pull at her ears. So after being on the defensive about that,  a comment that the emergency room resident had made, definitely put things in perspective.  She was admittedly shocked as she came in the room to see Jaylyn in a sitting position without support.  The resident had said she was expecting to see a child with significantly more disabilities than Jaylyn presents with. Now THAT is a proud moment! Knowing Jaylyn has exceeded someones expectations! Knowing she doesnt have to be in the same box as other babies her age. No,she doesnt have to be on point with typical babies her age. The only problem with her not pulling at her ears due to pain is the fact that no we didnt know her ears were bothering her. Maybe they werent! Maybe she is like her mama or many other typical redheads and has a high tolerance for pain! Or maybe we will have to find other means to communicate.  I have been on Early Intervention since day 1 about starting speech therapy. "Typically the state wont pay until after the age of 2" is what I am told every time I ask. Of course they switch it up and rephrase the same scripted answer but that doesnt stop me from getting my daughter the help she needs! I went a different route this time, addressing my concerns regarding the nutritional and medical aspects of further delaying her getting speech therapy.  So....her PT is starting it and its incorporated into her treatment plan until Jaylyn is 2 and the state will pay for more intensive therapy. Hooray for multidisciplinary therapists! So maybe Jaylyn has blessed our lives for a reason. Maybe just maybe an invisible sky daddy gave her to us because we can handle it. But we are no more "special" than any other parent that loves their child.

Diaper Rash, puberty, and manhood-ahhh motherhood!

I didnt space out my children on purpose. Sometimes I feel like I have to hand people back their eyeballs when I tell them the age ranges of my children. 1, 11, and 20! My eldest is my son. And often times my right hand man when it comes to helping with his sisters. Sometimes when its just him, me and the baby, we get funny looks, whispers and disbelief! Am I the grandma of that baby? Are we a couple? We have stopped getting agry at the ignorance and we enjoy the humor of it. No Im not the stereotypical soccer mom. Im far from it! I curse, I have tattoos, I work as hard as or more than your average man to make sure my kids are taken care of. Im not the damsel in distress if I get a flat tire and yes I know how to change the oil in my car too! But that doesnt make me any less or worse of a mother because my kids are fed, clothed, and loved! But it still makes me a target to be judged. But I wouldnt rewind my life to change a thing! Im glad Im not the princess girly girl that has to rely on others because I dont want to get dirty or break a nail. If the pilot light for the furnace goes out, I have no problem getting in the crawl space to relight it. As Jaylyn grows into the little person she is, I see that she does not fit in the same box as other babies her age. And Im ok with that! Samaura, my 11 year old is a career high honor roll student that doesnt follow the crowd and keeps her eye on the prize! She wants to be a scientist.  Something tells me she will indeed become one. Dev is the late bloomer into adulthood and is going back to school but still values my opinion, even about growing out his facial hair. I am proud of all of them! I am always flattered when I get compliments on how polite my children are. Apparently thats a rarity these days. Im proud of how they handle themselves in situations that would infuriate and spark a negative reaction. When we are out with Jaylyn and shes wearing her MAFOS, they do attract attention. Stares. Whispers. Looks of pity. Its pretty sad that we have to go out in public forarmed with responses just in case someone decides to take the next step and say something ignorant and insensitive.  And yes it has happened. Jaylyn is oblivious to it all but Dev and Sam are not. I cant imagine how difficult it must be to be a sibling of a special needs child.  Its pretty tough on me and I do rely on their help....A LOT! So when they get an opportunity to have some normalcy or an escape, I support it. Samaura plays field hockey but also understands if I cant make it to one of her games. Dev works and goes to school. So if hes playing video games online with his friends or plays touch football in the field down the street, at least hes not home constantly being asked to help with Jaylyn.  Whenever I ask, they are both more than eager to help. But I cant help but worry that they might get burned out. I know I have my moments where I need a break too! My escape is often going to work... As a nurse.... Of special needs children.  Not much of an escape when I am a care giver 24/7,my child or not. But its different. I have always loved.my job. And now probably more so! I have also embarked on a direct sales venture that I absolutely love and using the profits toward Jaylyn's care. A simple cold for her led to a 2 week ordeal of 3 visits to the pediatrician.  A trip to the ER and 2 different antibiotics due to a serious allergic reaction. She is ok now and back to her usual happy self! I couldnt help but enjoy watching a riveting game of "this little piggy" between her and Samaura this afternoon before Samaura had to pack for a sleep over. See? The not so typical family is more tight knit and "normal" than most. We just dont feel the need to pretend to be picture perfect. Because we are not. And neither is anyone else!

Jaylyn's 1st "cold"

It has been 2 full weeks of torture. What started out as a case of the sniffles on a Tuesday has turned into a nightmare by Friday! As soon as Jaylyn's usually lower temp went over 99.5 we had a call in to her pediatrician.  They treated her as any other baby would have been treated. Checked her ears, nose, throat, and lungs. Dismissed her and her "just a virus". They treated me as any other panicky, over protective 1st time mom would be treated. Only Im not panicky, admittedly over protective, and this is not my 1st rodeo.
The initial strep test done in the office was negative. The specimen sent away was also negative. I was sure to call 1st thing that Monday because Jaylyn was still running a low grade fever. 100.2-100.3. I expressed this concern to the triage nurse when I called about the strep test results and she was sure to rattle off the new textbook perameters of what a fever consists of. Of course this screams to me that she enjoys insulting my intelligence as a peds nurse myself, and that she knows my child better than I do. It didnt seem to phase her that my daughter is "special needs". Has some scary brain abnormalities that most Drs know very little about, or that she has a seizure disorder thar could be exacerbated by fevers. Nope! My daughter is expected to fit in the same box as every other child and nervous mother. Especially with Enterovirus and Ebola scares popping up all over the country! I really wanted to tell her to go EFF herself. But I was nice and went on my soap box as to why I was so concerned and why I was not comfortable with my daughter having these symptoms for so long. I got the technical speech AGAIN about what a fever is. To make matters worse, the very next day this beeyotch calls me back!!! Asks how Jaylyn is doing and then proceeds to tell me that they would like to reevaluate her IF AND ONLY IF her temp is 100.4 or higher. Eff you lady! Thats what I wanted to say. I wound up giving her a half asleep response of "ok" and hung up on her for waking me up. On Friday, I woke Jaylyn up just as her physical therapist had arrived and noticed she had felt warmer than usual. Hot in fact. I took her temp and sure enough it was 100.3! So although technically not a temp by todays standards, the PT had to leave to decrease the chances of her spreading anything to her other clients. I called the pediatrician and fudged a bit on the temp. A tenth of a degree shouldnt make or break my daughter being seen. She was still sick a full 10 days later and a full week after 1st being seen in their office. Sure enough Jaylyn was then diagnosed with a bilateral ear infection and prescribed antibiotics.  We filled and started them immediately. 
I felt relieved that she was on an antibiotic and should start to feel better! Her fever began to increase. 103 and 104. My fear that these temps may cause a seizure increased too! Alternating tylenol and motrin. Taking her temp what seemed to be a hundred times a day. By her third dose of antibiotics,  I was sure she would show improvement. Usually 24 hours after the start of an antibiotic that is the case! Not with Jaylyn. She doesnt quite want to fit into that box either! Her temp was 104! I called her pediatrician and thankfully the on call triage nurse was smart enough to review Jaylyn's chart and history prior to speaking to me. She contacted the on call dr, who was actually Jaylyn's usual pediatrician.  She gave us different instructions on alternating tylenol and motrin (made sure I was giving the correct dose...bitch)and advised us that at any time we were not comfortable with the fever situation or if Jaylyn began seizing, to take her to the emergency room. Otherwise thwy wanted to see her back in the office Sunday morning. Jay and I found that to be a ridiculous waste of time and decided that if Jaylyn spiked another temp that we would take her to the Children's Hospital where she receives all of her specialized care.
Well the fever happened, and off we went. Expecting answers and a solution.  After all was said and done and a urinary tract infection was ruled out, Jaylyn was sent home with a fever, tylenol and motrin instructions,  and instructions to follow up with the pediatrician.
Im starting to think these people do not believe me...again! After all,  it took 8 months of convincing to get them to order a brain MRI and we were all shocked at those results! So now we are in limbo day 14 of a fever, and no answers. Also no blood work, or other studies done, or consults with her neuro to rule anything neurological out. Why do I have to tell these people how to do their job?!?! Why do thwy not consider my input? If that was done from the get go, Jaylyn could have been properly diagnosed and treated sooner...but what do I know?!?! Im JUST her mom, right?!?! Something someone told them to read in a book says this is the way things are and every patient is the same...at least that is how it feels. So come Monday when the office is opened, Im sure to get a call requesting to see Jaylyn in thwir office for "follow up". I have been plotting the conversation since we were discharged from the emergency room. I am not going to be nice. I know part of the grieving process is anger. And yes I am still grieving BUT I am also furious at the care or lack thereof. I do not blame othwrs for my daughter's diagnoses, but I hold the pediatricians office responsible for the delay and every time there is the slightest glitch, from confusing her with another patient whos 12 years older and the opposite sex, to documenting on her chart that she takes tegretol when she is prescribed trileptal. See, me being a nurse is a blessing and a curse and I will be ripping someone a new asshole! Wish me luck!

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!

Dear "typical" parent

Dear typical parent.
I hear your complaints loud and clear. Chasing after your toddler is exhausting. Wiping up those messes from spilled cups and tipped over lunches does get redundant! Wishing for those days when all your baby did was "lie there" not making a peep. Believe me I do "GET IT".  I was once that typical mother too. Twice in fact. All the babble, chatter and sound effects my son would make drove me INSANE! Not being able to turn my back on my typical daughter because she would get her self into something that would result in injury or a big mess. Oh how I long for those days now. Oh how I wish my "quiet", "lazy" baby would be loud, babble, talk, scream and screech until my ears bleed. Oh how I wish she would have full use of her arms and legs so I can chase her away from the stairs, have to worry about her dumping and flushing goodness knows what down the toilet. How I wish she was able to dump her milk all over the table and dump her food over her head. I would love and long for the day she asks "whats that" and "why" a bajillion times a day! Even repeating words she shouldnt! So when you have to replace your carpet, have a plumber come out at odd hours, or youre so mad that youre wiping food off the walls for the 5th time in 2 days, remember just how lucky you are. Those tedious tasks are a privilege bestowed on you as a parent. Just as it was my privilege with my older children. I just didnt appreciate how much all those things I once bitched about would really mean. Now I have the privilege of modifying everything in my home and my life for my miracle baby who despite it all still manages to get into trouble in her own way and I LOVE IT!

Polymicrogyria awareness

Polymicrogyria awareness: http://youtu.be/2R53xrwzXZQ

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.