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