Hope. It's in our genes!

Today is February 28th - RARE DISEASE DAY ...

We don't need to just wait and share our stories that "one day a year" ... we should all be sharing our stories all the time, and that's what I really try to do with the boys and their stories. (If you are going to read this - PLEASE PLEASE read all the way to the end.)

When a mom (and dad) find out they're pregnant, never in a million years do you think that you are going to be one of "those" people who have a child with medical issues. You don't expect to have complication, or premature births, genetic tests, life changing news .... words that no parent should ever have to hear and that just changes your whole world. All of it.

I fought a long heartbreaking battle to have the four boys I gave birth to. I was a teenage parent - I got pregnant with Calahan, but I immediately suffered a miscarriage, only finding out several weeks later I was still pregnant and it had been twins. After Calahan was born I had four more miscarriages, and I didn't have a pregnancy that stuck until he was five years old. This was Noah, but it was very clear that the pregnancy was not going as it should be very early on. Through an amnio we discovered that Noah has a very very rare genetic disorder called Mosaic Trisomy 16. If it had been full trisomy, he wouldn't be here, however; I was told repeatedly that he would not live regardless. He was born weighing only 1lb 12.2 oz and was 13 3/4 inches long. He proved them wrong and he thrived. After Noah I had seven more miscarriages before getting pregnant with Nathan. I had gotten a divorce from Noah's biological donor and met Dennis. Surely odds wouldn't be that I'd end up with another medically rare child. But that's exactly what happened. Nathan's pregnancy mimicked Noah's in so many ways, but was also pretty different. The amnio came back "clean" and unable to detect any sort of genetic issues. Though we found out he had a 2-vessel cord and something called "Dandy Walker" ... Nathan was born weighing 3lbs 4oz and was 15 3/4 inches long. He was born with a cleft palate and various other things. Regardless... what are the odds of having two significantly rare medically challenged children with two different dads? (I had one miscarriage after Nathan before I got pregnant wtih Kaedyn, and then three more after. 16 miscarriages, four biological boys, and the boy we adopted <3 - and DB's daughter whom we hope will come into our lives-)
Both boys have a long list of medical issues.....

NOAH'S MEDICAL ISSUES: 
Medical Issues we have dealt with that may not be a big concern at the moment: severe asymmetrical IUGR, low fluid, small poorly functioning placenta, heart deceleration, bilirubin in amniotic fluid, Low Micro-Preemie Birth Weight, On Vent for 40 hours, Brachycephaly craniosynostosis, enlarged right kidney, ASD & VSD (3 holes in his heart all together), eye pupils shaped like footballs, Hypospadious (fixed surgically at 1 year), Natural Circumcision, Hyperbilirubinemia, he had both Apnea and Bradycardia (Brady’s he had, Apnea he didn’t start until a few weeks before his due date)... Brain scan at one point showed some fluid on his brain that was later declared a "variation of normal", umbilical & double groin hernias (fixed surgically at 6 months), C-DIFF bacterial infection from antibiotics and started to go into Kidney Failure, Broken Nose, Gastro issues (vomiting same time every day for years) .... He has had surgeries to repair his hypospadious, hernias, and to put in ear tubes, also dental surgery... and he has been put in the hospital/put under for countless tests.
Medical Issues we are currently dealing with: Mosaic Trisomy 16, Glomerulonephritis & Hematuria (both kidney issues), Hearing Loss (in his left ear, he has a hearing aid). Ocular Hypertension (high pressure in his eyes). Fine Motor Delay, Mixed Receptive-Expressive Language Disorder, Anxiety, ADD, Dyslexia & Dysgraphia. He is on the spectrum (ASD) in the "Aspergers" range.... oral sensitivity issues (taste & texture)... sound sensitively issues... speech delays....low muscle tone, tone issues from his hips to his toes & Supinated feet, Sensory Processing Disorder, environmental allergies, braces (for both his teeth and his feet!), skin growths/moles that are being "watched," he has ongoing Speech, Occupational, and Physical Therapies .... he homeschools due to having a poor immune system and catching everything he's around, missing more school than being there. Pre-Hypertension. Glaucoma.

NATHAN'S MEDICAL ISSUES: 
Medical Issues that we have dealt with and that we are currently dealing with: He is 7 years old (2014) and 28-30 lbs (depending on the scale) and 3 foot 4 inches (103 cm/40.6 in)…..In Nathan’s short little life, he had been diagnosed with the following: 2 Vessel Umbilical Cord, Low Birth Weight, Hypospadious, Natural Circumcision, Hyperbilirubinemia, Soft Cleft Palate/High Palate, Aortic Septal Defect (healed itself), Feeding Issues, Torticollis, Webbing of the fingers, Hydrocephalus, Bifid Uvula, Dandy Walker Variant (Missing Vermis in his cerebellum), Polymicrogyria (another brain malformation, meaning many folds, DR says the front of his brain looks like a bunch of grapes on MRI), Flat Feet, Tone Issues, Undescended Testicles, Russell-Silver Syndrome (a type of Primordial Dwarfism/growth disorder), Human Growth Hormone Deficiency, Scoliosis, Failure to Thrive, Apraxia of Speech, Non-Verbal, Seizures (when sick), Mild Hearing Loss, Velopharyngeal Insufficiency (VPI), Migraines, Asthma, Allergies and Autism. Broken Nose (2013)

In 2016 Nathan's diagnosis of Russell Silver Syndrome was taken away. He is currently and ongoingly going through extensive chromosome and genetic testing in hopes to give us a solid diagnosis. We have no "umbrella" diagnosis now but his Genetics doc is certain there is some sort of chromosome abnormality.

Age 9: weight is 45-47 lbs & 3 ft. 9 inches.
Things get added to the list, sometimes they change...... but this is a fact... something you only understand if you become one of these parents who are in this special community of other parents who "get it" because they've been through it themselves...

These children who have to live their lives knowing absolutely nothing more than the hand they were dealt, this isn't a "normal" but it is THEIR normal because it is all they know........ THESE KIDS teach us more than we could ever teach them, they bring MORE JOY into our lives then all the heart ache and worry ... It is a blessing to know these kids, to be their parents, to watch them grow, to have the honor of living their lives with them. It is an ABSOLUTE amazing thing to witness the MIRACLES that my children are and have been. The amount of PRIDE I couldn't even begin to express because I have watched these boys tackle things that adults can't handle and to step forward with fright hidden behind bravery ....

I wouldn't change them for anything - I wouldn't change one hair on their head - BUT not wanting to change who they are doesn't mean that as a parent of a special needs child you can't wish that things were different for them too. I don't like seeing my kids in pain - all the time, I want to scream every time I have to talk my child into allowing someone to do something to them that they are terrified of or that I know will hurt them, I would rather choke on begging them to be brave and watching the pleading in their eyes as waves of pain envelopes them. If I could *fix* those things that cause them pain and threaten their lives without changing anything about who they are as a person - I WOULD IN A HEARTBEAT.

I don't think people realize just how hard it is on a family to have to watch your children (sibling, grandchild, nephew/niece, etc) go through things like this - to live with the constant fear and worry that we go through. Sometimes it's hard to sit there and think "must be nice" to have such a "normal" life and not have to plan out every "what if" scenario that might happen when you leave the house just so you can be prepared.. just in case.

I have been accused of doing things like abusing my kids - making them sick on purpose (munchausen by proxy) - having people call CPS on us because they feel as if - not living in our house/living our lives - they know that our children need to be taken away because we are somehow causing their medical issues. I've had friends turn on me, family ignore me, and people just stop "caring" ... People start to complain about my being "too negative" because they don't like HEARING or READING about the boys medical issues. They feel I should focus on the positive things in our lives, and trust me - when I say - WE DO. Here is the difference. Because of our kids medical issues, our lives literally REVOLVE around the medical issues going on with our boys (and our family in general.) We don't CHOOSE to be negative - we are just expressing our everyday lives. You don't like it ....... imagine LIVING IT. This is OUR LIFE! So don't shame us, have little compassion and have some understanding. Sometimes - though - we need to vent about our day, our fears, all these things that worry us and the trials and hard things we go through on a daily basis.

I'm not saying we don't enjoy our lives, because we do. Even though our lives revolve a lot around medical stuff, I will take every day with doctors over not having my kids. We couldn't love our kids anymore than we do. It doesn't make our fears any less real. But every day is a blessing with these kids - because unlike most parents, they don't live by the motto ......

ENJOY EVERY SINGLE DAY BECAUSE YOU NEVER KNOW WHEN IT WILL BE THE LAST .....

We do....and actually have it be a reality. #theBoyWhoLIved and #SuperNathan

(Thanks for reading.)

My Son Almost Died ....

It's like grasping onto a rope, hopelessly and helplessly - trying to surface for air but all you are doing is drowning ... you can't seem to gain control, and then finally, the rope is in your hand and your being pulled through the water ...  until suddenly - unexpectedly - you breech the surface of the water and finally manage to gasp for air - taking in each breath as it burns your lungs but it doesn't matter, because you are breathing.  You are breathing.   The shock is overwhelming, the numbness is a protective measure, and your mind tries to make sense of something that.... you may never, ever make sense of.

 I am not only the parent of children with medical issues, but I am the parent of a child who almost died.  Not just one child, either, but two.

I am still haunted - each week that leads up to Nathan's birthday I'm haunted by the memories that that seep in no matter my trying to block them off and just concentrate on the happiness and the moment...

Noah was so sick ... the local ER had brushed it off as a virus and never really cared to hear what we were saying, he looked like a normal little boy, he was demanding I read books to him to try to escape how bad he felt - but really he was a little boy trying to act not sick because he carries major white coat anxiety.  A child with so many medical issues, who's been through surgeries and countless tests, and he's not always truthful about what is going on or his pain because he fears needles and surgeries, and big human that make him pee in cups.

I can never forget the utter terror running through my veins that morning in April of 2007, when he was lethargic and unresponsive, vomiting and running a 104 temp.  I had to go two hours away to the hospital he was born at, the hospital that his brother would be born at sometime that week...  it was my last doctors appointment - and we were going to find out that day which day that week he (Nathan) would be born.  But here, at home, I had this super sick little boy.  I couldn't choose, I couldn't pick one child over the other.  So I did the ONLY thing I could do, and I picked both.

I had my husband scoop up Noah and put him in the van.  I pumped him full of ibuprofen and tylonel to work his fever down.  We brought a puke bowl, just in case.  We packed up like we were going to have a baby, and threw in some stuff for Noah - just incase.  All I could think was, if he was going to be admitted, I wanted us at the same hospital.

We got there, we went through my ultrasound, my appointment, baby was going to be born that Thursday  Then we focused on Noah, we got him in to see the Urgent Care.   I remember being back in that room for an hour before a doctor got in to see us.  By the time she did, the ibuprofen had worn off, the tylonel was long gone out of his system ... and he was burning up, asleep in my arms, and not waking up ....  I was terrified.

Mostly I was terrified that no one would believe me on how sick he was.  How sick I knew he was.  I felt like I was going to get blown off again and I was going to cry.  This was not my child.  I felt like he was slipping away from me and I couldn't do anything about it.

Then she came in, the doctor, and she sat by me....  and she took one look at him, and it was like she knew.  She knew.

She reassured me, she could tell something was wrong.  She was already talking about admitting him, what tests she was going to do ....  and I just felt ...  free.  Finally someone believed me.  Finally someone took notice to how sick he was.

She later told me, after it was discovered that he had C-Diff, and was in kidney failure, that he was close to dying.  If we hadn't gotten him in when we did - he would have been dead with in a few days.  There would have been no fixing him.  It would have been too far damaging to his tiny little body.

If that wasn't enough....  if the fact that before he was even born I was told he wouldn't survive, period wasn't enough....

I have to go through it again?  Now with Nathan?

Last fall when Nathan was running that mysterious 106 temperature ....  we were taken by ambulance to Seattle ...  but it was just a form of transportation ...  We were scared.  We were watching him and we were scared.  But we never got to that point where we were worried.  We were close, but we weren't there.....

This all started 2 weeks ago.  Just ...  two weeks.

I guess the first clue that things were serious, was when they decided to transport us by ambulance... and we got in the ambulance, and the EMT says "We're going to go lights and sirens, just to get there quicker."

He made it sound like it was no big deal.  Something told me it was.  I brushed off my fears, let myself believe that it was no big deal. But I was messaging his Dad, my Mom, one of my best friends.... freak-king-out....

I remember, the ambulance had shown up super quick.  DB didn't even have the time to get home and get back because he went home - five minutes away - and pack up some stuff.  It sounded like he was definitely going to be admitted.  The ambulance showed up - whisked us away .... and now we were headed to Seattle with the lights and sirens going.  And I remember messaging DB going ... "do you hear the sirens?  Do you hear them?  That's us!"

I remember looking out the back windows of the ambulance, watching cars pull over and watching cars not pull over and thinking what kind of idiots are they ....

Nathan slept.  He doesn't even remember the ambulance ride.  That's what he says now, anyway.

When we were about to get to Seattle Children's .... the EMT in back with us called ahead, and was giving Nathan's stats and he said a few things that caught my attention ..... "Severe Sepsis" and "Kidney Failure" ....

.... I thought, have they gotten Nathan's records mixed up with Noah's?

I messaged my Mom, I messaged Dennis.... I messaged one of my best friends....

I looked at the EMT ... I said "Did I hear you right?"  and he said "That's what we were told, that's what's on his paper work" .... and he handed it to me.  The stack of paper work that was accompanying Nathan.  It showed the blood test results... and various other things....  including the six diagnoses....  including Severe Sepsis and Kidney Failure.  It was right there ... in black and white......

I looked at his blood tests but without google, I really couldn't make heads or tails of it.... but there was definitely some stuff going on ....  levels were high, levels were low....

It was clear my baby was sick.

We got to the ER in Children's and we ended up spending the rest of the day in the ER.  There was a debate - if he should be placed in ICU or on the floor.  It ended up being decided that they would place him in a regular room but the ICU staff, specifically the Risk Nurse, would follow up a few times a day.  We got to the ER at home around 8 AM ....  we got to the Hospital in Seattle right around Noon.  WE DID NOT GET A ROOM UNTIL after Midnight!!!

With in a few day, Nathan got better.  On Mother's Day I was excited.  He was better, he was eating and I got him up to walk - and he wanted to walk more. He was looking AMAZING ...

But then the unthinkable happened.  He went from maybe going home in the next couple days, to being rushed off to the ICU.....

Nathan was in Sepsis Shock.

Lets have a little lesson on Sepsis .....

Many doctors view sepsis as a three-stage syndrome, starting with sepsis and progressing through severe sepsis to septic shock. The goal is to treat sepsis during its mild stage, before it becomes more dangerous.

Sepsis

To be diagnosed with sepsis, you must exhibit at least two of the following symptoms:

• Body temperature above 101 F (38.3 C) or below 96.8 F (36 C)
• Heart rate higher than 90 beats a minute
• Respiratory rate higher than 20 breaths a minute
• Probable or confirmed infection

Severe sepsis

Your diagnosis will be upgraded to severe sepsis if you also exhibit at least one of the following signs and symptoms, which indicate an organ may be failing:

• Significantly decreased urine output
• Abrupt change in mental status
• Decrease in platelet count
• Difficulty breathing
• Abnormal heart pumping function
• Abdominal pain

Septic shock

To be diagnosed with septic shock, you must have the signs and symptoms of severe sepsis — plus extremely low blood pressure that doesn't adequately respond to simple fluid replacement.

Sepsis ranges from less to more severe. As sepsis worsens, blood flow to vital organs, such as your brain, heart and kidneys, becomes impaired. Sepsis can also cause blood clots to form in your organs and in your arms, legs, fingers and toes — leading to varying degrees of organ failure and tissue death (gangrene).

Most people recover from mild sepsis, but the mortality rate for septic shock is nearly 50 percent. Also, an episode of severe sepsis may place you at higher risk of future infections.

Early, aggressive treatment boosts your chances of surviving sepsis. People with severe sepsis require close monitoring and treatment in a hospital intensive care unit. If you have severe sepsis or septic shock, lifesaving measures may be needed to stabilize breathing and heart function.

Medications

A number of medications are used in treating sepsis. They include:

• Antibiotics. Treatment with antibiotics begins immediately — even before the infectious agent is identified. Initially you'll receive broad-spectrum antibiotics, which are effective against a variety of bacteria. The antibiotics are administered intravenously (IV).
  After learning the results of blood tests, your doctor may switch to a different antibiotic that's more appropriate against the particular bacteria causing the infection.
• Vasopressors. If your blood pressure remains too low even after receiving intravenous fluids, you may be given a vasopressor medication, which constricts blood vessels and helps to increase blood pressure.

Other medications you may receive include low doses of corticosteroids, insulin to help maintain stable blood sugar levels, drugs that modify the immune system responses, and painkillers or sedatives.

Supportive care

People with severe sepsis usually receive supportive care including oxygen and large amounts of intravenous fluids. Depending on your condition, you may need to have a machine help you breathe or another to provide dialysis for kidney failure.

Surgery

Surgery may be needed to remove sources of infection, such as collections of pus (abscesses).

This picture (above) is the impact picture on how sick he was.  He was hooked up to SO MUCH stuff.  They were pumping him full of fluids.   He was so swollen ....  

Here is an example of his swelling - this was the day he went to the DR (day prior to hospital) and the first day at the hospital.

Nathan went through all of that - right up to possibly needing the surgery.  He had a UTI, he had an infection in his scrotum which included a small abscess and they determined he had Ecoli also.

We are lucky.  We are, and I know it.  We are grateful to be home.  We are grateful he's on the mend. He's working on healing ....  it's going to be a long road for him.

We are grateful to have HIM home with us and on the mend.

It was all processing with DB while Nathan was in the hospital and I couldn't even begin to process it until after we got home.  It's been five days since we got home.  I'm still processing it.  I still feel as if I'm drowning a little.  I can't make sense of it.  The writer in me has to make sense of things.  This lead to that which caused this reaction and .....

You can't make sense of your child almost dying.

You can't.

I even spent some time looking for support groups today.  There are none ....  none that I could find anyway ...

I realize I need help processing and I can't seem to find any.

I need to express but I can't and don't want to dwell on it ....

I don't know how to get out of this sinking feeling, this feeling like I'm drowning in the what could have been or the what if's ....  I don't live in that space, and I don't like that space, I like to live in the now.

When you have a child that you are basically told is going to die before he is even born, you have to live in the now.  You have to live day to day and not dwell on yesterday or tomorrow.... worry about what is ... right... now.  Celebrate each day the best you can.  Love, Laugh, Learn, Live.  When you know that anything could happen, at any time....  it's hard not to take each moment and cherish it, because that's exactly what you should do.

So I don't understand why I am having such a hard time, after the fact .....  it's not the first time my child has almost died, or that I have been faced with some great odds against us - or even known that my children may have a time clock ticking down faster and hard than my own.

I choose not to live in that .....

....  so I just want to escape it right now..   but the grasp is tight, and it's choking me.

Trisomy Awareness: Fight (Day 11)

MARCH IS TRISOMY AWARENESS MONTH

Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is Fight ......

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

Trisomy Awareness: Blessings (Day 10)

MARCH IS TRISOMY AWARENESS MONTH

Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is Blessings ......

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

Trisomy Awareness: Treasure (Day 9)

MARCH IS TRISOMY AWARENESS MONTH

Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is Treasure  ......

The graphic speaks for itself today!  It does every day but .....  yeah ...

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

Trisomy Awareness: Belief (Day 8)

MARCH IS TRISOMY AWARENESS MONTH

Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is Belief  ......

In my head, while I was pregnant with Noah - I didn't really realize how scared I was.  How fearful I was.  I didn't want a lot of stuff at the house because ... just in case.... I didn't want to come home to anything that would remind me that I lost a baby.  I would walk into the baby departments and I would pick things up, stroke them longingly and force myself to put it back, because how could I buy something for a baby I didn't even know I'd get to bring home.

Most of these thoughts were self conscious.  It wasn't the belief I was going over my head, the one that had become my new mantra .....

My mantra ....  I just want to spend any time with him that I can get.  Even a few minutes alive is better than nothing.

13 years later, I'm still loving every moment with him....

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

Trisomy Awareness: INSPIRATION (Day 7)

MARCH IS TRISOMY AWARENESS MONTH

Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is INSPIRATION  ......

Let me tell you a little bit about inspiration!  Nothing, and I mean NOTHING, is as inspiring to reflect on your life, your family, your everything, than watching your child fight for his or her life.

These little kids are sooooooo amazing with what they have to put up with.

It's not like they are really given a choice, and it really because what they see as "normal" because it's all they know.

Because it IS their "NORMAL" ...

Nothing is more heartbreaking, also, than having to basically force or talk your child into doing something that A: you know they don't want to do, B: will hurt them, C: will make them so unhappy.  It's hard to tell your child "It'll be alright" when you know they are do for a blood test, or surgery, or when you don't even know if it will be alright.

These kids keep going - they keep smiling and laughing - they keep waking up every day and enjoying their lives.....  AMAZING and INSPIRING doesn't begin to cover it.

As a parent of TWO of these amazing kids, four if you count the oldest and youngest with their less rare issues ....  I can tell you that I have learned we have to handle each kid a different way.

With Noah - you cannot tell him he has an appointment until the day of or his anxiety gets the best of him and he psych and stresses himself out.  When he does find out it's a repetitive bombarding of "Will they poke me? Will I get a shot?  Are they going to hurt me?"  And what do you say?  When I'm 99% certain nothing like that will be going on, I tell him so.  But I still haven't figured out how to handle when I don't know.  Because there have been times where we have gone in and they have wanted to do tests when I thought they wouldn't.  So now he doesn't necessarily trust me on that matter anymore, so he spews it at the doctor as soon as he sees them.  He carries around so much anxiety and it stems mostly from the countless tests, surgeries, hospitalizations, pokes, prodding, and the trust between him and the medical community is lost.

Nathan has his moments where he's like Noah.  He sees a particular clinic and he'll start yelling "Nooooooooo I don't want to go there!"

And it's heartbreaking because no child should be afraid of their doctors, of the clinics, etc.  It's hard to see them react the way they do because it's coming from a place of fear.

I feel, at least in my experience, that the most important thing to do is to....

1: Make sure that they don't FEEL like they are DIFFERENT in their own home, as much as possible.

2: To support them in whatever way you can without drawing a bunch of attention to their medical issues.

3: There is no shame in bribery ....

4: Talk to them, be open to their questions, make sure you help them understand their medical issues without making them feel different.

5: Celebrate their medical issues.

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

Trisomy Awareness: COMPASSION (Day 6)

MARCH IS TRISOMY AWARENESS MONTH

Share on the fb page, TrisomyFamilies, and their blog, support4trisomyfamilies.blogspot,  And HASHTAG ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Today's key word is COMPASSION ......

Before you read this - if you know me - please take into consideration this is NOT directed at anyone in particular but my general experience - over all.  I understand people have different situations, etc and so on - and I'm not trying to make anyone mad or feel guilty - it's just my feelings, and have been my feelings for a loooooooooong time ....

I want to share some of my experience with family and friends and people in general.   I feel a great need to spread Noah's story, and Nathan's (my non-trisomy medically challenged son).... I feel the need to share their journey and their lives.  I don't know how long they will be around, as things are so up in the air with Noah at all times because of what we know about MT16 and I feel so lucky he is doing so well in this moment, and I want nothing more but for that to continue. With Nathan, he just has so much going on, I'm not sure I can ever feel stable with him.  I am grateful for every day that I have with my children.  I over share sometimes.  And I won't apologize for it.   I just won't.  I feel the need to bring awareness to all of their medical issues.  Their main ones being the Trisomy and the Growth Disorder for Nathan.  I am their Mom, their Nurse, their Teacher, their Advocate and my world REVOLVES around my children right now.  So yes, my facebook feed is filled with my children, with their sicknesses, their daily rituals, their triumphs and their happiness... and I won't apologize for it.  And I understand that people get "annoyed" with me sharing so much of them.  Including the sharing of their GoFundMe page.

We aren't asking for hand outs, we are asking for help.  We *NEED* to get to the conference in the summer because we really *NEED* Nathan to see the doctor who specializes in his disorder.  We *NEED* help with some costs because every cent we have goes into supporting the family, the roof over their heads, the food in their bellies, etc and so on.  We travel to appointments ... here ... there.... and every where.....  We're not going to get to this conference without help.

And then, I see my good friends, my family, various people I thought would be more supportive of the kids - share other people's stories on their pages, and not share the boys.  And I guess I just don't understand.  They'll share stories of children they don't even know - but they know my kids story and it's like they just don't give a damn.

So yeah, that hurts.  I have a hard enough time posting their fundraising links ....  because I feel guilty almost ....  and so not to feel like I have much or any support at all is hard.

So I don't feel a lot of compassion or support.  Instead I feel suppressed and like people just roll their eyes when they see another post from me.  One of my kids is always sick.  Between Noah, Nathan and I - we all have bad immune systems.  If someone sneezes around us, we get sick.  It's crazy, but anyone who has a child with medical issues that involve the immune system not being as well functioning as it should can understand.

I really try to keep in mind that even when people I would HOPE would at least try to understand our lives, they don't have this type of life, with constant worry, constant appointments, constant reminders of their hurdles, and they don't understand.  So my day in and day out life is repetitive and mundane and when you have kids with medical stuff - with the daily reminders - it gets annoying because it seems as if all I ever talk about is what's WRONG with them, when that's not the case at all.  But I am also being realistic.  This is our life.  This is what we go through.  This is who we are.  And to sit and point out that - it gets annoying - makes me feel as if ..... my life has less meaning to them because they seem (at least from what they say) to think that I'm seeking attention when that's not even the case.  The attention I am seeking is the knowledge and the support for my kids.  NOT FOR ME.

I have been accused of having Munchausen By Proxy ... mostly by people who have actually NEVER EVEN MET ME.  I don't know how I can cause Trisomy!  I don't know how I can cause a cleft palate, or brain malformations..... or Autism.  I mean, I can see how I can cause my child to have failure to thrive, however - look at my other kids.  Look at Kaedyn who's 16 months younger than Nathan, who eats the SAME STUFF as Nathan....  he doesn't have failure to thrive.  And I am rarely ever alone with any of my children, I either have one of my adult kids around, or my husband, or various other people.  There have been therapists and nurses in and out of my house since Noah was born.  So if something was even THOUGHT to be a THOUGHT of any sort of anything on my end that would cause harm to my children, I think they would have picked up on it.  I think the doctor would have picked up on it.

And that hurts too.  I could never do that.  But a lot of families go through having CPS called on their families because of their children being failure to thrive, or there being some unknown medical thing going on - and the medical community not being able to find answers, so they blame the parents - think they are "causing" it ... so the only thing to do is to take that child out of the home, away from their parents - only to find out - no they really do have a medical issue.  It breaks my heart.

The world I want to live in would be so much more compassionate than it is right now.  It's like people have gotten de-sensitized to the stories of our children because there are so many stories out there.  Social media helps so much, but it also makes people think "oh geez, another sick kid..." and they just don't care - because it doesn't effect their life, their children are "normal" ... and it will never happen to them, until it does....   to them, to their family member, to a really good close friend, to a co-worker .... unless you get drop kicked into the world, it's hard to understand, and it's easy to ignore.

But the fact is......... every one of our children have a story that NEEDS to be heard.  And we all need to keep shouting it!  Shout it LOUD and shout it STRONG and keep shouting it!  If people don't like it, screw them!!  They can exit your life, and never have to hear it again - and then when they get drop kicked into that world and they come back saying "Oh my gosh I am so sorry I wasn't more supportive but can you be an ear....." ....  be that ear.  Show them what compassion and support is.  Even when you don't want to, because you know what it's like not to be supported and feeling alone.

Noah has Mosaic Trisomy 16.  Trisomy 16 is not compatible with life. There are zero known cases where a child with Trisomy 16 has survived, infact, most pregnancies resulting in a Trisomy 16 baby end before the first trimester and is said to be the leading cause of miscarriage (according to some literature.) There are less than 100 known cases world wide of surviving children with Mosaic Trisomy 16.  When Noah was born in 2002 it was around 35.  The advice given to parents who find out about this diagnosis during pregnancy is to terminate.  That was NOT our choice.  We were told he wouldn't live, we were told he wouldn't come home.  He wouldn't even survive the pregnancy.  We were told that IF by some MIRACLE he came home, he would be so mentally and physically delayed it "wouldn't be worth it" .... and yet, my son, who has Mosaic Trisomy 16, is 13 years old.  He is beating the odds because we didn't listen to what they medical community said and we trusted our journey.  I had to prepare myself for the chance he wouldn't make it, but I had such high HOPE that he would.  He shocked and amazed everyone, and he continues to!  He is The Boy Who Lived! There are a lot of Chromosome abnormalities.  They are not limited to Trisomies.  There are additions, deletions, and multiple changes in the Chromosome make-up.  Educate yourself!!  Ask me questions about our journey!  We love telling Noah's story! 

Nathan's Month of September ....

.So ...  shortly after Nathan got home on the 5th of September after his surgery .... and he had some addition time to heal, he started school about 8 days after everyone else....

September 10th

On SEPTEMBER 11th ... Nathan had his second day of school, and then his first Boy Scout Meeting... 

 Notice he has both hearing aids in!!  Woot!  He's been wearing them all day now!!

 Trying out his new hat!

We got all of Nathan's uniform items and here he is in his shirt WHICH IS WAY TOO BIG...  

 Pictures of how big it is on him

Here is a lovely example of his righteous silly!

HA HA HA .........

Now - everyone in the house uses the potty except Nathan.  Nathan still wears a diaper, for many reasons.  One is that his boy part still needs more surgery ... One day I walked into the bathroom and i saw the baby seat on it - now the only one who uses this is Nathan because he falls in.  So .... does this mean....  he went on his own????

Questions that will never be answered!

He had his Pack Meeting where they shared their boats (Raingutter Regatta)  ....  I am putting this in here for those who do not follow the other blogs.

And here he was drawing with his brother (Noah) ... they were drawing Pokemon...

Here is Nathan and his younger (16 months) brother Kaedyn.....   Kaedyn is way taller and definitely heavier than Nathan.  Nathan has started to express that he isn't LITTLE he's BIG ...  Kaedyn and Nathan have a "twin like" relationship.  Nathan was still extremely dependent when Kaedyn was born, still on the bottle, still in diapers, not walking, not talking...  they hit a lot of milestones - or were working on them together....  they had their own language which caused Kaedyn to have speech issues because he would only talk what we called Nathanese ...  they are the best of friends.  These were taken today ...