Sunday, January 20, 2013

There are so many organizations we could support.  Really, I think, split between just my kids we could support as many as 25 organizations.  How do you choose between them?  How do I pick one condition over another?  Each diagnosis for each child is such a life/game changer.


I remember when we went to one of our first "Cancer" walks.  Nettie was very interested in it and wanted to know if they had one for AIDS.  I told her they do. . . "Well, then why don't we do that walk?"  That was a breath stealer.  I guess I was worried that people would connect the dots and then Nettie's little secret would be out.  However, no one told her it was a secret.  No one thought she'd ever understand enough to know what her diagnosis meant, let alone garner support for it!  A year later, Nettie began sharing her diagnosis with random people in her life.  Yes, it created chaos for a bit while people were educated and those who really cared about her learned how it really meant absolutely nothing to them and only affected Nettie. . . and at this time, only in the fact she has to take her meds.  She is a beautiful and determined and extremely healthy young woman.  Her major issues are related to the damage the virus did to her brain when they didn't have any treatment for children back in the early 90's.  Her hips, knees and shoulders are all a mess due to the CP and severe stiffness the brain damage inflicted.  But, health wise. . . she beats the rest of us hands down!!  She has done the AIDS walk now for the past 5 years.  This year, we're joining her.  This year, the kids will hear about why we are there, to support Annette. 


Joshua has no memory of life before cancer.  He was only 30 months old when the massive tumor taking over his brain was finally found.  He never questioned the process or the tubes or the meds, as he had witnessed Annette with all of the above many times. He assumed it was the same.  The fact that her hair didn't fall out and his did. . . never crossed his mind.  We lived inpatient for 7 months.  We went home exactly 4 times in 7 months and each trip home resulted in a readmission less than 24 hours later due to high fevers.  At the end of 7 months we went home for 3 glorious weeks as he grew stronger to prepare for his stem cell transplant and subsequent radiation.  I find myself drawn to organizations that support Pediatric Cancer, as I see it so much more due to the need to go to the hem/onc clinic.  Plus, the fact that his current medical issues are all a direct result of his cancer treatment, is constant reminder.  The fact that I follow many children on Caringbridge and in real life who are battling cancer.  But we support from the periphery.  I am so busy, that at this time, to do more would be too much.  Add to that, the fact that Joshua never sees himself as a cancer survivor.  So we cheer from the sidelines for those brave enough to shave their heads in the honor of amazing children and those that walk to raise money to find a cure the government clearly has no interest in providing funding too.   

Pediatric Mental Health, this probably affects our life more than any other, yet it is sadly the one diagnosis you rarely see any cute little ribbons or posters or facebook tokens supporting this cause.  There are no walks to raise money to help families who's kids are struggling with very real medical issues but are sequestered to the sidelines like it's a type of leprosy.  There is a walk to remember those who died as a result of suicide. . . what if we had a walk to support those BEFORE they see no other alternative in life other than to die.  60% of children with bipolar will attempt to commit suicide.  Their precious brains can't see through the fog of depression and of that 60%,  almost 50% will succeed.  Really????  This is what my baby girl is facing.  This is an area that I would love to garner more support for.  Wave my banner and say let’s get this going.  But, then my little girl will be the poster child for a profoundly broken system that few have any interest in fixing.  Few if any even understand what the mental health (as if it's any different than any other type of health.. . it's all physical/chemical/organic/REAL) system is like. Imagine you have a broken foot, it hurts, and it’s causing you to be highly agitated, irritable, and can't think straight due to the pain.  You go to the hospital, but they're busy and don't have time for broken feet right now.  They put you in a room with a 1:1 aide should you try "attacking" someone to help you or to find meds to help the pain.  You finally get to see a doctor who has never seen you before and without any tests and only a few questions, the diagnosis of "broken toe" is made.  But wait. . . it's a broken FOOT.  It's bigger than a simple toe.  You need a cast but instead they just put a Band-Aid on it, a few pain pills and send you one your way while your parents watch you suffer and it just eats them up inside.  You are sent to school in this pain and are expected to function yet the issue has never been addressed.  That's an example of how our system works.  It's terrible. 

 My son, Trayvon, is coming up on his one year heart transplant anniversary!  It also falls during Congenital Heart Defect week, wonderfully coincidental!  I am blessed to have a good friend who has established a wonderful local support group for families diagnosed with heart defects.  As such, I am able to support the cause by sharing facebook pages and token posters to show both support and spread awareness.  I have never been to an event.  We could easily support the GIFT of LIFE organ donation program.  I just don't have the energy.  I would like to think in my future I will be able to do more for these programs, as they really are invaluable to those families who find themselves facing these new giants in life. 


Our youngest's life has been profoundly affected by an undiagnosed mitochondrial defect.  There are some amazing organizations out there helping families facing these complicated and frustrating and life shortening illnesses.  We could support the many organizations that support families with g-tubes or are TPN dependent.  So many possibilities, in just one child.    

We were honored and incredibly humbled by the support from so many other organizations that I wish I had time to do more for.

We been on trips from Make A Wish and Starlight Foundation.  We were supported through various charities that help families make ends meet.  We were blessed by incredible friends who put together a benefit for Joshua 15 years ago and another for Tray 2 years ago.  We wish we could do more to promote adoption and disability awareness. We wish there was more awareness and support for Pediatric Epilepsy and the toll it exacts on the child and family.  We commend the many disability related organizations that bring attention to those with Cerebral Palsy and Developmental Disabilities and Autism (all of which we have here and contend with daily).   Elmcrest Children’s Center and Casey’s Place are amazing organizations.  So many.  Please, if YOU have the time, energy, or even the ability to donate money, please do so.  Facebook me, call me, e-mail me, text me.  I’ll point you the way to a wonderful organization that could use your help.  Some are small and still amazing.  Some are huge and though they work great works, the little guys need more. 

 To all those that have supported us and to those who are passionate about an organization, I commend you and support you!!  I’m so happy there are those that do have the time and energy to educate the world. 

Saturday, January 12, 2013

Sometimes it hurts to be a parent. . .

Sometimes we don't have the answers.  No wait, it seems lately, more times than not, we don't have the answer.  We know our children pose challenges, all children do, some more so than others, but all children stretch the imagination and parenting skills to the limit.  However, it seems that just when we have a grasp, a firm hold on how we want to proceed in a given direction with a given child. . . they turn direction, or just go into a full reversal and completely jump course all together. 

Marriela is our current course jumper.  She was on a nice roll.  She had many fantastic days in a row.  Now, let me clarify what a great day for Marriela is at school:  She does not hurt herself. She does some work. She spends some time in her classroom with her peers.  She smiles, she laughs and says many funny things.  School work. . . that's optional most days.  Keeping her within a fine system of contentment mixed with productivity, in a very broad sense of the word, is the daily goal. 

For those who haven't read her post on who and what makes Marriela the unique and amazing person she is, I'll paraphrase.  She was the 5th child of a crack addicted mother who had been raped repeatedly by an uncle at 9 years old.  Her mom was addicted to alcohol by 9 when she came into the foster care system herself.  She was crack addicted at 13.  Her first baby came and was taken before she could even see her at the age of 17.  She is HIV+, bipolar and schizophrenic.  She was kicked in the stomach while pregnant with Marriela and fell down a flight of stairs.  While inpatient, they told her she was only 19 weeks pregnant and was in the midst of a miscarriage.  She was monitored closely due to her other injuries as well and was checked often to see if she had completed the miscarriage.  She was asleep on pain meds when a nurse checked and discovered a tiny girl breathing, wrapped in her cord lying motionless on the sheets.  Immediately it was apparent that Marriela wasn't just 19 weeks, a code was called and my little girl was whisked away where she spent the next 3 months fighting for her life, addicted to several drugs, in a pain killer coma (as they had treated mom heavily due to her injuries and assumption of a non-viable pregnancy). 

Fast forward, we met Marriela, in person, on her first birthday.  She was tiny.  Only 11 pounds still at a year old.  She couldn't sit or stand, but had an amazing smile she shared it readily.  We knew we were taking her home.  I picked her up from Boston when she was 16 months old.  She had gained some weight, 16 pounds at 16 months but was clearly not "well".  We had shared our concerns that her medical needs in Boston may have been being understated and that the 70 year old foster mom may have not known her true needs.  When she arrived we knew immediately we were right.  Her asthma and breathing were terrible.  I spent weeks on end up all night giving treatment after treatment and keeping her O2 on.  We added an apnea monitor because she started "forgetting" to breath.  She was eating rice and eggs and whole milk at her foster home.  She could not grow or gain weight and the doctors were highly concerned that she was failure to thrive due to a severe underlying issue.  We started her back on a bottle with a prescription formula.  It was slow and her poor belly swelled to 3 times its size with every bottle.  No one knew what was wrong. 

Fast forward again, Marriela has grown and at 3 she begins to take her first steps with her AFO's (foot orthotics).  She finally outgrew her infant car seat and broke the 20 pound mark at 3 years 1 month.  I turned her around and put her in a "big girl" car seat for the first time.  She LOVED it.  At 3 1/2 we knew her mothers genetic contribution was going to be a mental health disorder among other things.  We began the quest for help early.  She had a brother that was admitted to the hospital at 9 years of age for severe mental health issues and was not released for a year.  I would not and will not allow such a fate for my sweet baby girl.  We started with the typical ADHD meds and over time moved up doses, tried different medications and eventually started on actual mood stabilizing medications at the age of 5.  She was/is one of the most distractible children you will ever meet.  With the exception of watching her current obsession of the moment on youtube, you can't keep her focused on anything for more than a moment at a time.  As the developmental pediatrician realized she was more than his area of expertise was equipped to handle, he referred her out to a psychiatrist. 

This was a new chapter.  A new experience.  A new set of rules, meds, trials and tribulations.  Over the years we've tried many things.  A lot have worked but when it doesn't, it's not a mild failure.  Typically it's a terrifying trip into the unknown and her reactions to medications have ranged from none to a state of mind I can only liken to the abyss of insanity.  Once, they started Depakote.  She became scared, beyond words, her mind was racing and her heart was thumping out of her chest.  She couldn't stay still and she lashed out at anyone and anything that came near her.  She didn't sleep for 6 days straight.  We wanted to call someone for help, but couldn't figure out how to safely get her into our car.  We couldn't safely get her even into an ambulance.  Where would they take her?  What would the fill my little girls body with?  So we stuck it out at home and weaned her off of that evil drug on our own.  She spent almost 4 days wrapped in the safety of our king size bed so she wouldn't herself or anyone else.  Once the drug was out of her system. . . Marriela was back.  Meds have a risk with everyone we try.  But not using meds has proven just as big a failure. She needs meds, just as a seizure patient needs meds to stop the seizures.  Marriela needs meds to regulate the chemicals in her brain. 

So we come to the present and assess it for what it is.  Marriela had a terrible time at school last week.  On Wednesday she really tried to hurt herself and in the process, hurt some teachers as they worked to protect her from harm.  We met with the team.  Lots of tears.  She is deeply loved and it hurts us all that we don't have answers on how to stop these events.  It's a torment for everyone, but most of all, Marriela. She is devastated afterwards, and once the air clears, she begins a round of apologies, voluntarily and with sincere remorse. 

The course has changed.  She's bigger, she's stronger, but she's developmentally, still a little girl.  She has a brain that works at the speed of light and when a negative thought invades, it darkens everything.  A good or better yet, a great, thought makes her shine like the sun.  We are now working with her team to keep her at her beloved school.  The future is fuzzy.  There is no place that meets Marriela's unique needs.  No program that will love her and treat her with the level of respect she receives at her school.  Yet, we will be forced for next year to make changes.  As parents we are facing the unknown for our little girl who has proven and demonstrated the indelible human spirit.  The desire to persevere despite incredible odds as a baby and now as my amazing daughter, has made me a better, albeit, clueless, parent. 


Friday, January 4, 2013

And like that. . . it's over.

2013.  Hard to believe it's 2013.

We saw a lot of amazing things in 2012, just as we see lots of amazing things every year.  I anticipate many amazing things happening in 2013.

Some Highlights:

Peter starts the year off with a bang and has an emergency gall bladder removal and is in the hospital for 5 days for a bad infection. 

Tray gets his long awaited heart transplant the day before Valentines Day!

Sergio defies the doctors and remains infection free with only one stay due to a medical error by a doctor.  He continues to remain hospital free. 

Marriela has become the most stable we've ever seen and is truly enjoying school this year!

Cody has grown in leaps and bounds and has made amazing progress in his school work.

Annette moved out in July and has found herself loving life as an independent young woman. 

Joshua has recovered fully from his huge surgery but continues to seize.  He is happy and that's all that matters to me.

I managed to put a knife through my hand just before Thanksgiving and needed to have my tendon reattached.  I'm still in therapy and though it's not going as well as we had hoped, I still have a thumb and will have use of my hand even if it's not perfect. 

Peter and I enrolled full time in school and found we both love it and the competition to see who was a better student resulted in us both getting 4.0's for the semester. 

I have applied for a large grant to help cover some of the costs of school so we don't get buried in loans, but if I don't get it, I'm ok with whatever it takes to get back to work!

And that brings us to 2013:

This year will bring yet another surgery for Joshua.  It will not be an open skull surgery, but rather a small catheter will be threaded through a burr hole in his skull to the areas causing the seizures (or so it is hoped).  Then they will heat it up and destroy that small spot and with it, the seizures it caused.  I am highly reluctant to go for yet another treatment and hospital stay, as they have all been for naught.  But, if we didn't do it, I'll always question myself with the "what if's".  So we move forward and await another PET scan and another meeting with the neurosurgeon.  In the mean time, we add more meds, increase more drugs and continue to give him rescue meds to stop the seizing once it starts.

Sergio has surprised us all with not only his health, but he is now tolerating feeds through his GI tract!  This is a truly amazing advancement by our little man.  He was so skinny before on just the TPN and had minimal growth, and now. . . he's 5 pounds heavier (and it shows!) and has grown 2 inches.  He has more energy and has successfully fought off several illnesses that would have landed him in the PICU previously.  His IVIG is definitely working for him.  He can play Twinkle Twinkle Little Star on the xylophone without any assistance.  He "sings" the part of Bohemian Rhapsody where they say Mammmma, ohhhhhh.  LOL  He understands so much and the ability to communicate is so close to coming as well we can't wait to see how far we get in 2013.

Marriela has made some very nice progress in her play skills and her ability to relate to her classmates in school.  She had a rough start to the year, but that was all 2012. 2013, however, has been great and I see it continuing.  She asked for, and received, a "reborn" doll for Christmas.  She has shown some nice "mommy" skills that she did not previously have.  She often talks about when she has a baby (Lord help me!) and even says I hope I don't through it down the cellar - which is what she does with her dolls when she can't do something.  LOL  Thank God she's only 10 so I have many, many years to worry about this.  Overall, she is doing well and we're pleased with her current treatment plan.

Cody is such a sweet baby boy.  He tries so hard in all he does.  He hates to be yelled at and has a very sensitive soul.  His teacher called today to say he did very poorly on his spelling test and she didn't want him to see it before she talked to him and assured him she'd call us so we would know, "he tried hard".  Everyone that works with Cody knows he wants to please and do well.  It's awesome to see that acknowledged.  I only wish things came easier for him.  His school demands will only get harder in 3rd grade and I don't want him to ever dislike school.  He is now in Jui Jitsu (Brazilian martial arts) and LOVES it. He is a natural.  Skinny, tall and moves like a monkey and never sits down.  He has all the right traits to excel in this arena and he loves it.  He is also finishing up basketball at the YMCA and I am afraid he has completed all he can get out of their programs.  He's ready for competition and skill building now.  Athletics will be his strongpoint even if academics aren't.  Again, it's all good with me if he's happy.

Tray is almost to his one year anniversary of his transplant.  One year!  It's unfathomable to me that we have put almost 12 months between us and that scary and exciting day.  The preparation, fear, and acceptance for that day to come and happen was beyond words.  Now, to see Tray, I can't say enough about his amazing journey.  Unfortunately, Tray now struggles with who he is.  He's not the "oxygen wearing, IV pump carrying, needs a heart transplant" kid.  He's now a regular 14 year old boy who has to redefine himself.  This is the hard part if you ask me.  He seems lost and can't seem to find his footing.  He's struggling in school, he can't seem to find any friends, and he's getting mouthy with adults.  Much of this is normal teenager crud, but a lot is not having a good sense of who he is anymore and we're at a loss on how to help him.  So we signed him up for Kung-Fu which he loves.  It gives him physical and mental challenges to work on.  Yesterday he called to say he was staying after school to try out for the 8th grade play.  How exciting is that!?  I pray he gets a part and he finds a new area to branch out in.  But my sweet boy is still here and we see him more at home than others do.  He is happy at home, where it's safe so we aim to make the year 2013 the year Tray learns who he is and finds joy in that amazing person. 

Annette, oh my.  We let her go.  She moved out.  It was hard and easy.  It was easy because she had prepared for that day since she was 16 despite reading only at a 3rd grade level, can't tell time and doing math at a 1st grade level (if that).  But she has no lack of determination, a powerful sense of independence and unlimited self-confidence.  It was hard because I knew there were cruel lessons life will have to teach her.  I don't want her self-confidence to ever waiver.  So far, she's weathered a few bumps and has taken them in stride.  She hurt her shoulder and was out of commission for a bit but, refused to let it keep her down.  She stayed here for all of 6 hours after a cortisone shot and then asked to go "home" so she could rest.  I was sad, I was looking forward to taking care of her.  She didn't need me.  But at Christmas, she came for 5 days and it was wonderful!!  I'm proud beyond words of the young woman Nettie has become.  She wasn't suppose to live another week when we went on our emergency Make-A-Wish trip in 1995.  She not only made it, but has thrived ever since.  Seems to be a running theme with my kids. . . tell them the end is near and they will flat out make sure it is not true. 

Peter and I talk about kids and if we're committed to closing the door on any more.  I had thought I was, but I can't say for sure.  I guess we'll see what God has in plan for us and where our new found skills and degrees take us in life. 

I find myself in therapy and frustrated by a potential "limitation" in regards to my hand.  A split second poor decision has resulted in a virtually unusable left thumb.  I didn't realize how valuable this appendage was until I was forced to do things without a thumb.  The surgery was less than successful at this point, but I've increased my treatments and we've added some (not so pleasant) treatment options to try and regain all that I can.  I will be a very successful hitchhiker though!!  LOL 

I hope this finds everyone else as excited to start the new year.  We are forgetting those things that are best forgotten and remembering those things worth remembering.  We will fight the good fight for things worth fighting for, but will lay down our arms when we find that continuing is counterproductive to a happy life.  We aim to stay healthy, but our motto is to Stay Happy!!