Research before you judge

For months I've ignored the hateful statements made by those who feel Justina Pelletier was unjustly taken from her parents care by Boston Children's Hospital.     Of course with the media paints a scary picture of a seemingly normal girl being ripped from her parents arms and forced into the "system".  There is propaganda surrounding this case everywhere.  People who have no connection to Boston Children's bashing them, talking about how awful they are.  On the surface, yes it looks like a horrible story of parents losing their child after looking for a second opinion.   However, any educated person should know that you cannot take a story from a newspaper for 100% fact, nor to believe that pertinent information may have been excluded.

So the question remains: Does Pelletier suffer from mitochondrial disease as her parents state, or is Justina a victim of medical abuse?  How do we make that decision based solely on sensationalized news stories?    Of course it's always heart breaking to see a family torn apart, but in reality,  this has the potential to be child abuse.    As stated in an article written by the Slate Group:

 A 2011 study of medical child abuse cases published in the journal Pediatrics suggested that many medical child abusers seek out a diagnosis of mitochondrial disease, in part because it guarantees a long period of heavy involvement with the medical system. Although the study’s sample size was small, the numbers are still deeply troubling: More than half of children subjected to medical child abuse had been tested for mitochondrial disease.

Unfortunately, the symptoms between medical abuse and mitochondrial disease are very similar, both of which can be life threatening.  So which is the correct way to handle it?   Contrary to popular belief, DCF does not make the decision on where the child gets placed.  That decision is made by the judicial system.  In this case the evidence was substantial enough for a judge to place Justina is alternate care away from her parents.     So, you have a doctor who does not believe Justina has mito, a DCF worker who feels there is abuse/neglect involved, and a judge who takes all of this evidence and finds it pertinent to his decision.     This is the legal system of the United States.  This is the very system that keeps crack babies out of the arms of their crack addicted mothers.  Just because a family looks good on the exterior doesn't mean they are any better than the crack moms.     Removal of a child from their family requires a OVERWHELMING burden of proof.  

Of course I feel for this family, if they are in fact innocent in all of this.  However,  what if BCH is actually right?  Then they may have saved this child.   If the tables were turned and BCH released Justina to her parents and it was later discovered that the parents were abusive, the outrage would be unimaginable.    There is no winning with the public.  

As for my family,  my entire blog is dedicated to the passion I have for Children's Hospital Boston.   I never, ever once was threatened in any way, shape or form.  My daughter was labeled as "failure to thrive"  that could easily be misconstrued as I wasn't feeding or caring for her properly.    There was never even an insinuation that I could be to blame for any of her illness.   (And yes, she had a rare diagnosis)   The doctors at Children's Hospital Boston are the most amazing team of doctors I have ever met in my life.   My daughter had a team of 5.  We met many more along the way, from surgeons to anesthesiologists and every one of them were respectful, knowledgeable and truly caring.   One anesthesiologist was literally rocking my daughter to comfort her when I was allowed back into recovery.   You do not receive that type of personalized, heart warming care anywhere else.   

The point of this blog is to pretty much say, THERE ARE TWO SIDES TO EVERY STORY.   HIPPA is hindering CHB's side.  Before bashing an institution comprised of  first-class doctors with knowledge that saves the lives of THOUSANDS of children every year   take a unbiased approach and research the topic at hand.   

My daughter with her surgeon at Boston Children's

Maybe Children's is wrong, but in my heart I don't think they are.   Tarnishing a hospital that has made so many families lives complete (my own included) truly isn't fair.   Don't believe everything you read, and take every news story with a grain of salt.  

I wish the best to the Pelletier family, but truly, in my eyes the hospital did what they felt was best. 

Soliciting...

Today after a slight "family disagreement"  someone told me I was "soliciting" for donations to Children's.    Soliciting seems like such a sterile word.   Such a harsh word. So business- like.  Not the warm and fuzzy I was going for with FUNDRAISING.   So here it is.   My children are the very reason I breathe.  There is not a single thing more important to me on this Earth than Christian, Julia and Olivia Kelly.  I would die for them.  I live my life FOR them.   In 2010 when Olivia completed our family and was so very sick, I literally thought I was going to die from the stress of her illness.   I knew I had two other children to take care of, and that kept me going, but the waiting, the testing, the unanswered questions, sucked the life out of me.   It was a long, long road.  It was covered in bumps along the way.    Since those days are a thing of the past and my daughter is the most delightful, fearless, beautiful four year old I know, I have been humbled.    Would I  have ever walked 2 miles for anything 4 years ago? Probably not.   Today,  I jump at the opportunity to help the hospital that saved my daughter.      I am not "soliciting" I am simply trying to give back.  Paying it forward.  My daughter was lucky.  Some parents are not so lucky.  Some have children with terminal illness.  Some kids never walk or talk or do anything with normalcy.  Olivia does, and it's not because of luck its because of the dedicated men and women at Children's Hospital Boston who meticulously FIXED her problem. 

Olivia had a 1 in 20,000 congenital defect.  There are kids in Children's Hospital with diseases even more rare, that need research.  Olivia's surgeon is the man who developed the robotic laryngeal cleft repair.   That research takes money, and we all know that money doesn't grow on trees.  So that  family who may not have the best health insurance, or the ability to pay for uncovered expenses  should just be left to suffer?  Without fundraising this hospital couldn't do what it does! 

So, maybe I am soliciting.  I'm asking people who are close to me or even not so close (Ive had complete strangers donate to my page, and it truly warms my heart) to help the cause in the name of my daughter who fought until she won.    My baby won her battle...and those who have not reached victory yet deserve the chance.  Their parents deserve to know every possible treatment will be available to them regardless of their socioeconomic status.   If  that's soliciting, well then, call me a solicitor. 

My daughter is alive and well today because of a building with a team of amazing people.   I'm not trying to raise money for the benefit of me, or my family. I am doing it for the thousands of children who aren't quite there yet.

It's a personal choice, support our mission or don't.  If you don't, I understand.  But please do not look down upon me as a "beggar" for trying to raise money for those less fortunate than myself.  No, I don't know these kids, or their parents, and I don't know their stories, but what I do know is that no child should suffer and they all should be afforded the best possible care.  

And that is why we,  The Kelly Family and The Foley Family are TEAM OLIVIA STRONG. 

Much overdue update...never forget where you came from...

In the excitement of it all, I realized this blog didn't get the attention it so desperately needed.  You see, when my whole world was falling apart blogging about it was therapeutic, helpful, healing.   Now that my once sick, failure to thrive daughter is a fully thriving, stubborn, energetic three year old, some things just get pushed to the wayside.  :)

On October 23, 2013 OLIVIA DIANNE KELLY PASSED HER THIN LIQUIDS SWALLOW STUDY!     It is a day that will forever be in my top 10 best days EVER.    It was her 6th swallow study.  The initial first one, a complete and utter shock back in August 2010 resulted in Olivia being admitted IMMEDIATELY for observations that lasted 4 days and got her a feeding tube in place.  

Olivia sat through the test like a champion, like the true fighter she is and when they told me she passed I literally cried tears of joy.  I was SHOCKED.  After hearing so many times before " she didn't pass, she is still aspirating" and then trying to figure out the "next course of treatment"  I thought my chance of getting a positive result were slim.   The entire staff was thrilled, as they all became familiar with Olivia.  They all cheered for her! It was a life changing day!  A day we will never, ever forget.  

Although the phrase "Don't ever forget where you came from" is so cliche, in this situation it's really all I can think to sum it up.   I had my first baby at age 23, a completely healthy, uncomplicated pregnancy, a difficult labor which ended in a c-section, but at the end an extremely healthy baby boy who consumed every ounce of love I had within my being.  Two years later,  at age 25, I had another seamless pregnancy, not a touch of morning sickness, a scheduled c-section that went perfect and another beautiful, healthy baby.   And then, just when I thought I had this whole baby making thing mastered, I got pregnant on the very first try for baby number three.  Like clockwork.   I later miscarried that child and was devastated by the loss.   As soon as I got the OK to try again I did, and again, it happened very quickly.   I was nervous but ecstatic at the same time.   And then the morning sickness began.  EVERY. SINGLE. DAY for the ENTIRE pregnancy. And then the soft markers for Down's Syndrome came. A specialist in Boston assured me my chances of a baby with Downs was 1 in 375 but I still had a nagging feeling something was wrong.   And then the pre pre-eclampsia came and got me tossed on bed rest for 4 weeks.  Finally, the day she was born I held her and cried that she was finally here, that she was perfect.   For hours that night I looked her over to see if there were any signs of Down's Syndrome.   I remember her breathing seemed off to me, but thought I was once again overreacting.       It took over 5 months to get a definitive diagnosis and 27 months, countless tests, 10 anesthesia procedures and a lot of anxiety to get a treatment, but the moral of the story is, MOTHERS INTUITION prevails over all.    So, back to don't forget where you come from.  I was the mother who had everything perfect.  The perfect clothes for my kids, the perfect shoes, the perfect play dates.  Yet when you have something challenged as monumental as your child's LIFE that new pair of Nikes really doesn't mean a thing.  I have been humbled.  I have learned what is important in my children's lives and its not having the best material things.   

Olivia's team of doctors at Children's Hospital Boston are truly heroes in my book.   Dr. Reza Rahbar is the most gifted surgeon I've ever had the pleasure of knowing.  He mastered the technique to fix the laryngeal cleft without a scar through the throat.  Only a few doctors in the world know how to do this. And guess who they learned it from?     I cannot ever express my gratitude and love for this man for saving my baby.

They say everything happens for a reason.   Olivia happened to ME for a reason.  Yes, it was stressful, and there was pain and heartache and confusion but at the end of it all, I have this beautiful, caring, STRONG daughter that I know will reach any goal she puts in front of her.   

You did Olivia, YOU WON!!!!

And now we wait....

Last Tuesday Olivia had her second meeting with the feeding team at Children's.    I told Dr. Rahbar that the first meeting was useless so he suggested I take her to the Boston location because they may be more effective.  So even though in the back of my mind I disagreed, I went.   

After waiting for a speech pathologist (feeding team member) longer than I've ever waited for a well known surgeon, in walks a woman and her student.  Both are all smiles as if this is some sort of fun.  Gwen I think was her name.  So she has a stupid name and a stupid smile and now she wants to ask me a million questions that I've not  only answered 700 times before but are clearly in HER CHART if Gwen just thought to read it.    

Gwen wanted to know why I didn't think it was a good idea to continue to try to thin out Olivia's liquids even though she FAILED her swallow study.  Well, Gwen, I may have went to school for Criminal Justice, but I do think that aspiration of liquids into the lungs may be a serious concern.  

 

So Gwen (the genius) asked Olivia to sing her a song.  Olivia (the mini-Alexis) must have sensed Gwen's stupidity and refused.  On the inside I was laughing.   So for about 25 minutes all we did was watch Olivia tear through an exam room, and take a few random sips of her milk.   Gwen seemed to think that she did well with her swallowing.  Yes, she did, perhaps because it was THICKENED???   

I had thinned out liquids for several weeks prior to this appointment and noticed that Olivia was VERY congested and her lungs sounded raspy to me.  Seeing Gwen wanted me to thin them even further I asked that a doctor please listen to her lungs just to make sure they were clear.   After initially telling me yes

the genius then told me that because Olivia was not there for a "medical" appointment, no doctor NOR nurse could listen to her.    Long story short, everyone knows I don't take NO for an answer.  And Dr. Rahbar DID listen to her lungs, and they were clear.     I was pretty shocked with the lack of help this "feeding team" was.    A trip to Boston really is no big deal these days for me, but Olivia hates going.  Do I blame her?  Not at all.  I try to limit her appointments to cut back on upsetting her.  This appointment not only wasted my time, it stressed out Olivia and I, and will be billing my insurance $596 for Gwen to sit and smile at me.  Maybe I should have been a speech pathologist.

So after all of this...what was the outcome?  The doctor feels that I am intelligent enough (YAY!) to make my own decision regarding Olivia. I can wait it out, or I can try to "force" her into swallowing thin liquids.  He seems to think practice will make perfect.  Although he did warn, "although it could lead to pneumonia".  So, I'm faced with a dilemma.  For the mean time, I honestly rather thicken Olivia's drinks than have her aspirate them.  Maybe I'm being conservative, but at the end of the day, Olivia is MY baby, not just another case file.      So for the next six months it's up to me what I want to do as far as Olivia's progress.  I'm just going to take each day at a time, but I'm not going to force her to do anything.    In six months we will revise the plan.  Frustrating, stressful and it makes me sad all at once.  Life sure is a challenge for some. No one said it would be easy, just that it would be worth the ride. 

Heartbroken

On Tuesday, Olivia had her 4th swallow study. A lot of people ask what exactly that is.  The short version is, a test that involves Olivia drinking liquids with barium and being xrayed while doing so to see how the fluid passes through her espohogus.  The long version is: Swallow Study.  Now, I had every thought in my mind that Olivia was not going to pass this test.  She still coughs and chokes when she drinks liquids that she steals from her brother and sister.  I convinced myself she wouldn't pass but wouldn't really admit it to anyone because my grandmother always says "thoughts have wings, so keep your thoughts positive".  So off we went to Children's for the day....and what a day it was.

As soon as Olivia's name was called for the test she started to get tense.  Once inside the room she began to freak out.  The look of fear in her eyes was like nothing I've ever seen with her.  The last time she had one of these tests was January 2010  so I don't know how she remembers it.  Olivia decided she was not going to cooperate and sit for the exam, so they repositioned the whole machine so I could get in and hold her through it.   That's what Children's does.  Anything and everything to take care of the kids.    Olivia took 3 sips of a drink and the speech pathologist called it off saying the ominous "She aspirated". the scary part was, she didn't cough or choke.     Now like I said, I prepared myself for this.  I knew this was going to happen.  Yet, tears started to roll down my face, and I couldn't even wipe them because I had Olivia in my arms.  They attempted to see if she could swallow a slightly thicker liquid but Olivia decided she was all done.  And so was I.    They all told me how sorry they were that she failed yet another study, but all I really heard was a bunch of rambling.  

We had an appointment with Dr. Rahbar across the street from the hospital immediately after.  While walking over I attempted to call my husband to tell him what happened and I couldnt get the words out.  I had to text him because I just literally could not speak about it.    Once we got into the office to see the doctor I successfully checked us in, wrote a check for the copay, situated Olivia, and once I sat down I just started crying again.  I must have looked crazy, but I couldn't help it.  An elderly man who volunteers for the hospital came over to check on me.  Now I was definitely the crazy lady in the corner.  All the while, Olivia was dancing all around the waiting room.  Having no idea why I'm upset, because to her, nothing is wrong.  

Once we met with Dr. Rahbar and his team, he explained that sometimes the anatomy can be perfect but the coordination is not.  He says that he has only had to do a second repair a handful of times in his career.   he also said he trusts my judgement on Olivia.  Of course he had to scope her nose as he always does, and of course it couldn't just be a quick thing because two other residents had to see as well, and here I am holding her YET AGAIN while she gets tortured by these people in the white coats.  

Essentially, we are at yet another bump in the road.  Dr. Rahbar asked (as other doctors have) if we thought about a neurological consult because besides outgrowing this, a brain issue would be the only other cause for her aspiration.    Yet, because Olivia acts very much like a "normal" two year old, has an extensive vocabulary and can walk and run with ease, the chances of a brain issue are VERY slim.  With that being said, I'm going to hold off on the neuro consult and spare my baby of more strangers examining her.   

So, the new plan is for Olivia to see a speech language pathologist who specializes in feeding issues monthly at Children's.  Dr. Rahbar will also be there for any issues that may arise.   Dr. Rahbar and the feeding team seem confident that they can "train" Olivia to swallow properly and that it's just a matter of learning.  

I guess I had high hopes for the cleft repair to be the end all to Olivia's LONG journey.  After all the research I had done I was confident that it just had to work.  Dr. Rahbar,  and her four other specialists all emphasized that it may not be the cure all. That it may work, but where it may not. I guess I didn't really listen to the "it might not" because all I wanted to hear was the "it will."    My heart is broken that it didn't work.  May sound ridiculous because there are so many kids far sicker than Olivia in the world.  I do realize that, and I feel for them, I really do.   But there is something about watching your own child suffer, and be fearful, and be put through test after test after test only to not have the results you wanted or needed.    

I have to trust that everything will eventually be OK.  There is an undying passion to make Olivia better.   The same as if anyone of my children were sick.   I will go to the ends of the Earth to make her better....and if anyone is up for the challenge, it's her. 

"But she looks healthy....."

Greetings!!  Catching back up after a delightful holiday season with the kids.  Olivia did very well, each day becoming a little bit more devilish, destructive, and mischevious.  And with each thing she does to drive me crazy a part of me thanks God she is able to do such things.

A few weeks back, Olivia had a cold.  Now to most parents, especially seasoned ones, a cold is no big deal.  To a mother who once counted her child's breaths per minute a cold sends a a mother into a full fledged panic attack.  So off we went to the pediatrician, who said if Olivia was any other child he would wait a week to investigate further, but given her history he wanted an immediate chest x-ray.  Let me express how heartbreaking and stressful a chest x-ray is on a toddler who doesn't want any part of such things.  You see, Olivia spent the first part of her life being poked, prodded and examined by well over 10 different doctors.  To this day, a doctors office inflicts a sense of anxiety over her.  As soon as a nurse calls her name she starts screaming.  And I can't say I blame her.  She has had more doctors appointments that her siblings combined in seven years.   At any rate, once the x-ray was over, and it was confirmed she did not have pneumonia I felt much better and so did her doctor.  Just a typical day being a parent to Olivia!

Now here is what I hear quite a bit.  "But she looks healthy".  Well yes, she does.  And she walks, and talks and will probably kick your kids ass if they try to take her toys but she is NOT 100% yet.  She cannot drink liquids.  Trying to tell a toddler they cannot drink a juice box like all of their playmates is heartbreaking.  To watch my baby literally try to drink bath water, but then know she can't and spit it out makes me incredibly sad.  And while yes, on the outside she is a beautiful little girl with a smile so bright she can light up an entire country, on the inside she is very delicate.    So what happens when Olivia steals a drink of something?  Well,  some days she will audibly aspirate, meaning we can hear her cough and choke.  Other days she will silently aspirate as she has done since birth and while the fluid is still going back into her lungs we can't hear it.   This isn't just some run of the mill issue.  This is a BIG DEAL.  I try to be patient when people ask me what is wrong with my daughter. IN my mind nothing is WRONG with her she just needs a little help.  Yet to try to explain is exhausting.  People don't get it.  So I just wish everyone would believe me when I say, I have spent more time researching her condition than I spent researching anything used to obtain my college degree.  I am confident I am the BEST caretaker for her and the ONLY one who knows 100% how to take care of her.  When I think something is wrong, I am almost ALWAYS right.    Looks can be deceiving.  I know because there was a time on the inside I was a total mess about her well being but no one would ever know it.  And to this day, I still get worried, I wonder what will happen in the future, I wonder if they will ever fix this, and stress out about all the things I surmise in my head.  But you probably wouldnt know that unless you are one of my close friends.

So here we are, almost a new year.  Olivia will be two at the end of February.  It seems like yesterday when I took the pregnancy test.   From that day forward, Olivia was a challenge.  She wouldn't show her gender on ultrasound, she had soft markers for Down's syndrome, she gave me extremely high blood pressure and forced me to be on bed rest for the last month of pregnancy but above all, she taught me how strong I am.  She gave me a sense of completeness. 

January 10th Olivia has her next swallow study and follow up with Dr. Rahbar.  I do not believe she will pass the swallow study.  While I try to remain optimistic, I can safely say I would be SHOCKED if she no longer aspirated.  And from there we need to examine more options, wheather it be waiting it out, a second laryngeal cleft repair or something else, I'm really not sure. At the end of the day, Olivia is one of three people I love more than anyone or anything in this entire world.  Nothing will ever stop me from getting her to where she needs to be.   Never ever take for granted a healthy child.  Let kids be kids, enjoy every moment, and above all, don't let the little things get in the way of the big picture.
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Giving Thanks

Any good parent is thankful for their children.   A parent of a sick child is thankful their child is still alive.   After several years of taking Christian and Julia's health for granted, the past two Thanksgivings, I have realized just how lucky I am.   I have mentioned Children's Hospital while saying Grace the past two years.    Its amazing what being the parent of a sick child will teach you.   

 I had identical, easy pregnancies with Christian and Julia.  They were born exactly 26 months apart, both on the 11th.  Their times of birth were very similar.  Their birth weights were 1 lb different.   They looked like twins.  Olivia was born on the 24th of February, weighed the least of the three, and I had a very difficult pregnancy with her.   She had a full head of dark brown hair (the other kids were redheads at birth).  Olivia was bound and determined from conception, to be DIFFERENT.

How much does it break my heart when Olivia brings me a bottle of water and cries for me to open it?  Words cannot even describe it.  Or when she steals a juice box from Christian or Julia and then goes into a full coughing attack from one sip.  And she knows its going to happen. Sometimes she will even spit it out because she's afraid to swallow.  BUT, and the point of this whole blog is the BUT....I'm actually quite lucky.  I really think all parents should just take a walk through the halls of Children's Hospital to have a appreciation of how lucky some of us are to have healthy children.   My daughter can walk, she can dance, she can talk, she can fight with her brother and sister and not miss a beat, she can light up an entire room with her smile.  She is going to LIVE a long life.  Maybe it will take a while before she works out some issues, but at the end of the day her prognosis is she will live a long, full, normal life.  I can't imagine the pain a parent of a terminally ill child must feel.  And I consider myself truly blessed beyond words that Olivia is who she is. 

So today, tomorrow and always, I will forever be grateful that I have three amazing children, who literally make my whole world complete.  Olivia is just my angel sent to make me stronger.  :)