"Everything" happens for a reason

Something I have always believed is that everything does happen for a reason. What that reason is, isn't always obvious or apparent.  For instance,  what is the reason children are born with horrific things? Without getting into a religious debate, this is the very reason I had lost my "faith". I could not understand how a "God"  for whom I was once so very devout would allow such terrible things to happen. Long before I had Jaylyn, Samaura, and even Devon I was a very devout Catholic.  I had taught CCD. Gone to church 2 to 3 times a week. And growing up in NY, my favorite thing to do in the city? The stations of the cross at St Patrick's cathedral.  At one point in my life I had even entertained the thought of being a nun. Holy shit! Yes its true! I loved church and God and even being a Catholic.  A lot has happened to rapidly change my faith and feelings toward organized religion. Being a nurse also had a lot to do with it. Seeing children suffer from horrific things made me question and doubt. Hearing biblical cliches about Gods "plan", that He doesn't make mistakes, and my all time favorite for when things got really bad?!? Its a "test". Im all for prayers, intentions and positive energy. I'm a very metaphysical person. I do believe that what you send out comes back full circle. I have seen it and experienced it too many times not to believe. I consider myself a spiritual person.  The moment I found out Jaylyn had something seriously wrong with her, you best believe I begged the "powers that be" to watch over my babygirl. I also asked friends and family of all religious paths to pray or whatever it is that they do, for her. Just because I had lost my faith, doesnt mean I begrudge anyone else theirs. Especially when the good intentions are there.  The word had spread rather quickly and people from all corners of the world were praying for Jaylyn.  We received blessed rosary beads and a crucifix, Goddess poppets and candles, prayers, chants, you name it! It had taken a week in the NICU but she survived. So had this experience renewed my faith? The answer is a bit unexpected.  It absolutely did! But not in "God", or any other deity. But in humanity.  People from all walks of religious beliefs combined their efforts for 1 purpose, for 1 child. People who for many a reason would either not interact, cross paths, or even get along due to religious beliefs all pulled through for my little girl. If only this ripple effect could reach the areas of conflict in the middle east. Or even right here in America. Im certainly not jumping back on the church bandwagon,  but I do have faith. In myself, in my family, and in the fact that Jaylyn happened for a reason.

Jaylyn has more brains than most!

As part of our interdisciplinary CP clinic appointment the other day, we saw social services. Now keep in mind that they see patients from all over the country. We of course went over what services are available,  the family dynamics of our home, and of course the financial difficulties we have been faced with since Jaylyn's diagnoses, and requirement of a lot more care than a "normal" baby. I may have mentioned in a previous blog that we had applied for and were denied SSI, told to apply for welfare/medicaid, etc. We have appealed, contacted our Senator, got denied county medicaid, and was told Jaylyn would be eligible for state medicaid because of her multitude of diagnoses and that she falls under their criteria for "special circumstances ". Keep in mind that she has been on my health insurance plan, open enrollment is the only time I can add, remove, or make any changes to my plan.UNLESS she gets medicaid. And typically a person can only be eligible for medicaid if they have not had insurance for over 3 months. So I cant get medicaid UNLESS shes uninsured for 3 months BUT I cant remove her from my insurance unless she gets medicaid, MAKE SENSE?!?!?! Well open enrollment ended in June, and although the cost had gone up to $217 a week, I was going by what the intake personnel had told me and kept Jaylyn on my insurance until she was approved for medicaid. I mean, after all,  how could they deny someone with severe disabilities, let alone a baby that cant afford not to be insured for even a day! After the crushing blow of being denied SSI, I thought for sure the "experts" that can barely speak English, or spell my name right on important documents no matter how many times Ive corrected them would obviously give me the correct info when they told me Jaylyn is sure to be eligible for medicaid. So now because I was obviously misinformed,  and open enrollment for insurance through my employer has closed, I am locked in for a year. $217 automatically gets removed from my pay check every week, whether I can afford it or not. Whether I have bills to pay or not. Whether we are hungry or not. So round and round we went explaining this big confusing mess to the social worker at CHOP, hoping we could get some direction or assistance. The only sage words were that "New Jersey is THE WORST state when it comes to getting help and services for special needs children." Well that was obviously NOT a revelation to us considering everything we have been through thus far. However, considering this hospital has patients from all over the U.S. and the world?!?! THATS PRETTY BAD!  Jay and I often fantasize about moving to a house in the country, a pond for fishing, a cow for milking, a pig for bacon....Obviously NOT in New Jersey. Of course we wouldn't move completely off the grid because we fully intend on being in close proximity to CHOP for as long as Jaylyn is with us. New Jersey has some very unforgiving rules and laws as far as health insurance, getting assistance and services. Even those that provide said services complain of the difficulties and unfairness special needs families face. After writing a very lengthy appeal letter to medicaid, I of course called the senator's office to update them on that as well as to see what we can do to make changes for all special needs children and their families in this state! Many other states have laws protecting these children and assuring them assistance and medical insurance regardless of income. In NJ you have to be destitute for such a great length of time before even being considered for assistance or services, unless youre an illegal or a crackhead so it seems. The multitude of applications, required documents,  and flaming hoops one has to jump through for any type of help is enough to make anyone give up. And I honestly believe thats why things are made to be so difficult.  Most would quit. Most would give up. Not this chick!!! Hell to the NO! I contacted the president of my company as well as the president of the United States, and everyone in between. Laws need to change! As if having a child with special needs is not difficult enough. Considering the circumstances of Jaylyn's diagnoses, it cannot be proven 100% that the vinyl chloride and/or contaminated water is NOT responsible at least in part. We did not plan or prepare for any of this. So we are doing the best we can with the cards we were dealt so to speak. But yes it would be nice if more people were competent in their chosen fields of employment. Especially when it comes to special needs children. We can use a friggin break! I mean seriously! It is currently 4am. In 3 hours, my shift ends, I have to stop to pick up de-skunking ingredients,  go home, get baby ready for PT at 9am, deal with my stupid dog that got sprayed by a skunk, run errands, go food shopping, and all the "normal" mom stuff as well as manage the multitude of phone calls I get for Jaylyn.  I hope that somewhere in there I can get some sleep too.

No matter what!

Its been a long journey thus far. Knowing there is something wrong with my child, fighting for doctors to listen, a wild goose chase for various specialists and tests to rule out ridiculousness. And now we are here. Now we know. Now everything is confirmed. All of my suspicions,  concerns, and intuition were right...and then some. Im no longer that "crazy mom", or am I? The one time I wish I was wrong, the one time I wish I could fix it, and I cant. All I can do is grieve, get over it, move on and continue fighting, advocating and doing my best. I cant emphasize enough how much I am NOT a nurse at home. Im just mom. I have a new found appreciation and respect for the parents of the children entrusted to my care and skills. Does it make it easier to care for my own special needs child? No, not really, but when it comes to getting her the help and care she needs, absolutely!  Imagine if I didnt pick up on the little things as early as I did. We would still be scratching our heads and abiding by the pediatricians "wait and see" approach.  So being that "crazy mom" paid off. We got the answers, we are on the right path and getting Jaylyn the therapies and services she needs. Im done blaming myself, but with all of the red flags, tests, monitoring, exposure to contaminated water and vinyl chloride, something is to blame. Something was missed. Something was overlooked. I was looking through all of the ultrasound pictures I had while pregnant, and I found one that you can clearly see the malformation in Jaylyn's brain in utero. The date of the ultrasound was in April of 2013, 4 months before Jaylyn was born. Negligence does not even begin to describe my prenatal treatment. There is a laundry list of things that had gone wrong while I was pregnant. I can sit here and go through the "what ifs" and "if onlys" all day long. It will not change the way Jaylyn is, it will not make me feel any better, it will not change anything for the better. However, I hope this can help someone, somewhere. Never give up! I know, no matter what, I wont.

soon to be 11 months...

Looking at my calendar,  if you squint, all of the appointments entered make it look like it has chicken pox.  Today, I realized Jaylyn will be 11 months old this coming week! Wow, where does the time go? Im enjoying a few stolen moments to myself in the kitchen while I make dinner, so I look up what milestones an 11 month old should be meeting. And now....I just want to cry. Why do I keep doing this to myself?  Why do people feel the need to force advice as if its going to "fix her"? We got stood up for a "play date" last week and I cant help but wonder if its because Jaylyn is different. Why did I get my hopes up that Jaylyn could have a little friend? And why was I so hurt and dissapointed?  After all, its not the first time, and Im sure it wont be the last.  I don't want Jaylyn to grow up feeling the way I felt. Having to be independent at a much too early age, your own best friend, and not being able to rely on people when she needs friends, family, or help. She is only 11 months old so she doesn't realize what being stood up means or feels like, but I hurt for her. It hurt me. This is just one of many times in her life someone will be inconsiderate.  She is a red head. If she does take after me, she will be little miss independent with a fuck the world attitude to protect the fragile heart underneath.

My "vacation"

In 26 hours, I will officially be on "vacation" . I had used 2 days of PTO for Jaylyn's last hospital stay and had 2 more banked to be magically whisked away to.......CHOP! for a 6 hour appointment,  a 6 hour appointment.  (Yes I am a Gilligans Island fan, dont judge). Because I work nights, I had scheduled the night before and the night of to be off.  So yes thats my vacation. Meeting with neurology, orthopedics, speech, occupational therapy, speech therapy, measuring for splints and braces, referrals and recommendations for various other clinics like sitting and feeding. Exciting, right?!?! I am actually looking forward to it because its to help Jaylyn.  I'll take day trips to the beach over getting on an airplane any day!

The seizures

As a nurse, I have seen all sorts of seizure activity . From the violent convulsive type, to the staring spells that are easily mistaken as day dreaming. So when Jaylyn had her first seizure, I knew to time it, monitor her vital signs and call her pediatrician.  Jaylyn has complex partial seizures. She will space out, become a rag doll, have episodes of blinking, and briefly stop breathing. Jaylyn's seizures are so infrequent and brief in duration that it has been difficult to capture these events on video to show her neurologist.  All that we do know is what we were told. Basically I feel as though Im waiting for the other shoe to drop. We were told to expect worsening seizure activity as she gets older. We cannot get any guarantee that this will be controlled. We cant get any guarantee that the worsening seizures wont be her demise. We cant get a guarantee that she will be one of the lucky ones that lives into her 20s. Just today I was having a conversation with my 2 older children.  My son was admiring an elderly couple and commented that its nice to see them still together. My 11 year old daughter then began asking what she and her brother and various other family members would look like when they get old. And then she asked about Jaylyn. How do I tell her that is not going to happen? I am all for being optimistic but I am a bigger fan of realism.  There are no guarantees in life. Not even with children. Love them every day!

Such a lonely road

I had an over abundance of support while pregnant.  Friends and family were supportive, excited and were looking forward to the same thing we were...a healthy baby girl. Well...thats not the plan the powers that be had for us apparently. 
As the days, weeks, and months passed as Jaylyn's diagnoses began to unfold, it seemed to scare people away. I even went so far as to post a Facebook status explaining and apologizing like an asshole! I explained that due to our schedules, Jaylyn's appointments and therapies that we just cant pack up and go to cater to everyone else that wants to see her. I extended an open invitation to anyone who wants to be in her life. No one came. No one called. We even got stood up a few times. And some that chose to reach out, were not exactly doing so out of concern. I was told I post way too many pics of my baby girl. I was also questioned as to whether or not Jaylyn's diagnosis and prognosis were legit.  Someone is an over paranoid twat that watched 1 too many episodes of "Catfish".  Its all good, how could we possibly understand what being busy is like, let alone deserve a phone call or text saying you aren't coming?  Being that we are a 1 vehicle household and I am the sole driver, even my days off are not my own. I am responsible for getting 5 people to work, school, practices,  appointments, etc . I couldn't go anywhere or visit my family in New York even if I wanted to, unless of course I can squeeze it into the window of time before my next taxi services are needed. I am by no means complaining. After all, even Jays days off are often arranged to accompany me on this, that or the other appointment.  Jaylyn only gets physical therapy once a week. She will be starting other therapies in the very near future, which will be on other days of the week. For the next 3 years that she is under Early Intervention services, this will be my life. Most people sleep more in a night than I average in a week. So I do like to unwind, relax, spend time with my family and maybe have a lazy day where I sleep more that a couple hours.  Social media support groups are my social life. Sometimes I can go days without speaking to another adult human being. Because Jay and I work crazy conflicting hours, I have to settle for cyber support, cyber hugs and an occasional kissy face emoji. Im not even sure wtf an emoji really is. All that I do know is I love this little girl with all my heart and I will do anything and everything I can for her. That includes advocating and educating. That includes explaining that just because Jaylyn "looks healthy", it does not mean that she is. Do not judge a book by its cover based on a few smiling pics of my baby. Do not down play the severity of something you cant possibly understand. We are still trying to understand ourselves. We are still trying to accept the prognosis. I am honestly still in awe over the outpouring of support we have gotten from complete strangers, friends from high school I hadn't seen....well, since high school. We are still working on collecting funds for her bills and I appreciate all thats been done and hope to one day pay it forward to another family with a special needs child. All the cyber aupport and love in the world absolutely cannot replace a real life hug. 

Guess whos crawling?! Well, sorta

Being that we are fast approaching Jaylyn's 1st birthday, we now have more to celebrate than ever! During my pregnancy I had joined an online pregnancy group and all the mamas that were due in September had all formed a separate group. Of course Jaylyn arrived 2 weeks before her due date, but that did not interfere with the bond and friendships I had formed. As I saw these other moms excitingly posting about their baby's milestones, I became more and more discouraged. There were some days that I didnt speak to anyone at all for days at a time, and these are women I had interacted with daily, for several hours a day throughout my pregnancy,  labor, delivery and throughout Jaylyn's early weeks and months. I was definitely grieving for the child we were expecting and did not have. Yet, we were given so much more. I never would have thought I could learn so much from such a little person.
Jaylyn gives me a reason to celebrate every single day! As bad as this sounds, I was so glad that some of the moms in that group had said their baby couldnt do certain things like clap, why?!? Because Jaylyn can! It was the one thing she can do that some of her little online buddies couldn't do. It brought me a sense of normalcy and accomplishment. No she cant do most of the things other babies her age are doing, but shes definitely making progress with physical therapy! Just last week her therapist had said that she will most likely be a "tripod" crawler. Sure enough, Jaylyn uses her left side to the max, uses her right arm minimally and drags her right leg,but she is moving!  She is "crawling". The intent is there, she wants to move! Due to her disabilities,  she is either held, carried, or in some sort of sitting device most of the time while awake. Lately, when being held, Jaylyn is often trying to wiggle away to the floor in attempts to do her own thing. She wants so badly to move independently. I couldn't be more proud of just her desire and will. She is a fighter, and although we have a lifelong fight ahead, she is the strongest, toughest and most determined person I know. Just because shes still in diapers, does not mean she cant be an inspiration.  She is definitely mine!

The fight!

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

Jaylyn's 1st diagnosis

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