Thursday, March 5, 2015

Trisomy Awareness: UNCONDITIONAL (Day 5)

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 UNCONDITIONAL ......


When I found out I was pregnant ..... I was so excited.  Trilled.   I couldn't have wanted that baby more!  Several miscarriages, years of TRYING ...... and I was finally pregnant....  and it was FINALLY sticking ........ I had such ....


Then it became obvious that something was wrong.   Every ultrasound showed - based on size - a due date pushed further back.  I was due March 17th, and by the end of it all ....  it was almost into June.  Testing was done.  Amnio.  Results came in ......   Mosaic Trisomy 16.
 Labels didn't matter.

This was MY baby.

He moved inside me.

He waved for ultrasounds....

He was proud of being a boy (as he waved his junk around during ultrasounds) .....  

He was MY baby!


I didn't care how long I would have with him - and I was told it would be none at all or very short.  They wanted me to terminate, I said there was NO WAY I would.....  because.....


13 years later .......... and I am still loving him unconditionally .....  


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! 

Wednesday, March 4, 2015

Trisomy Awareness: EXTRAORDINARY (Day 4)

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 EXTRAORDINARY ......


Noah is an amazing kid.  It has been an utter joy watching him grow from itty bitty .... to this big ol' teenager.  (sigh)  I can't believe he's a teenager - seriously - where has the time gone?

 Noah has been through so much in his 13 years, more than most people go through in a lifetime.  He's been through countless surgeries and tests and doctors visits, he's had ambulance rides, hospital stays, "I don't know why he's so sick" moments, broken bones, and he almost died.  He has hearing loss, learning disabilities (ADD, Dyslexia), he has Aspergers and some major anxiety ....  his kidneys have to be watched now, due to them going into failure .. but they healed for the most part.  Now every time he gets really sick he pees the color of apricot preserves.


But this does not DEFINE Noah.  This is just what this young man has been through. It had molded him, and shaped him - but it does not DEFINE him.   Noah is very passionate.  He loves animals (he's named right, huh?) ...  if he could have a Zoo, he would.  He loves movies, and dragons.  He loves Pokemon and Club Penguin.  He loves Minecraft and has an amazing obsession for Doctor Who.  His favorite Superhero is Batman and he called Spiderman "Peter Parker" instead of Spiderman.  He has this huge want to know, and although he struggles with learning, he tries so hard.  He likes his big thick hair, and he hates haircuts.  His favorite food is Chicken Nuggets and French Fries, and he loves my cooking.  He's gone from unwilling to try new foods, to being willing to give anything a chance.  He loves his brothers because his heart is sooooooooo big.  He is amazing.



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! 


Tuesday, March 3, 2015

Trisomy Awareness: MIRACLE (Day 3)

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 MIRACLE ......






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! 


Monday, March 2, 2015

Trisomy Awareness: Trust (Day 2)

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 TRUST ......



One of the toughest things - I think - being the parent of child with medical issues ... is to ask them to trust you when you know that during appointments, there will be needles, or taking them to the hospital for surgery .... or watching over them in the hospital as they go through countless tests to try to figure out WHAT IS WRONG so they can fix it.  

You don't want to cause your child pain, you are built to protect them from pain.  So having to willingly - basically - hand them to others that will cause them pain - and asking your child to TRUST you for it ..... 

It's hard.  It's one of the hardest parts of being a parent of a child with medical issues.  

And yet they always look up at you with those loving eyes....  and those beautiful smiles keep you going when the guilt wants to suck you down.  They teach us so much more .....  



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! 


Sunday, March 1, 2015

Trisomy Awareness: Love (Day 1)

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 LOVE ......


Love knows no boundaries ....  
Love doesn't see chromosomes! 



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! 


Come Join the FUN! Capture YOUR Trisomy Journey.


March is Trisomy Awareness Month
During the month of March, we are raising awareness for the Trisomy community, and we welcome you to take part as well!

We not only want to spread the word that persons born with a trisomy syndrome should be treated as individuals, and not disregarded because of their diagnosis, We also want to help our community capture their journey.
We hope to help you through your journey with mindful healing. 

We encourage you to explore your grief and joys, and discover more about your thoughts and feelings to aid in your healing during your trisomy journey. The journey has many ups and downs, whether your loved one has passed, or is living. We hope this project helps you, no matter where you are at, in the Trisomy journey. Some may be grieving the loss of their child, and others grieving the typical life they originally imagined for their loved one. The dreams may change, and the challenges be great. We hope to aid you in exploring the untouched thoughts and feelings, so that you find comfort in your growth and adaptions in life, in your Trisomy journey. Each day of March, you are invited to explore the word of the day, and elaborate with words or a picture(s). We encourage you to journey your innermost feelings, and discover the journey to it's depths.
WHEN/WHERE

On our fb page, TrisomyFamilies, and our blog, support4trisomyfamilies.blogspot, there are 31 subjects, one for each day in the month of March. You are invited to share a photo or written words, which capture your journey with each daily subject that inspires your heart. You are welcome to take new photos or use ones from the past.

With each correlating day, you can post your entry on paper, Twitter, Snapchat, Facebook, blog, Instagram, etc, with either words, or photographs that explore your journey with Trisomy. Please keep in mind that if you share in social media, your journal may be exposed publicly. 

You can join us at any point of time during the month. You can choose which days you wish to participate, and can skip days, accordingly. You are welcome to join the Capture your Trisomy Journey project whenever you feel comfortable in doing so, and are not required to do so. Please keep in mind, this is a healing and growth project, so there will likely be moments of deep rooted feelings. We ask that you seek professional help if you are struggling beyond what this project is able help you with. We do not claim to be professionals in grief and healing.
RULES

If you chose to use public social media, we ask that you keep in mind there are insensitive persons out there, who will not appreciate your journey. We ask that you protect your heart. Do not allow them to upset you. You have rights to ignore, report, and block them. If you respond to them, you will be giving them the attention they desire, and this pulls the focus from your healing and growth. This is a project for you, and not everyone will respect your personal Trisomy journey. If your post has brought you to a tough day, it is ok to step back and rejoin the project when you are comfortable to do so.
We ask that you use your own photos and words, whether past or present. It is a personal journey, and we ask that you explore it as your own. We ask that you respect others doing this project, as their journey will not be yours. We encourage you to support your fellow Trisomy community members, by responding with words of encouragement on their entries.
We ask that to share in the Trisomy Awareness month, you hashtag your posts with ‪#‎trisomyfamilies‬ ‪#‎trisomyawareness‬

Oh Nuts!!!!

.

Last night was really scary.  Like - BEYOND - scary.

Before I get into it - Kaedyn has been through allergy testing.  Back in October of 2011 (when Kaedyn was just 3 years old) ...  he was eating candy corn and had a major allergic reaction where he had monster sized hives all over his body.  He went through Allergy testing and I talked about it in this update (UPDATES: KAEDYN) in April of 2012 ....

So this is Kaedyn yesterday afternoon - before .... it .... all.... happened.
Yesterday was - of course - Rare Disease Day - their thing is jeans for genes and wearing jeans and having jean ribbons .... so of course it's important with us because both Noah and Nathan have rare disorders.

So we had a bag of Caramel Popcorn with Almonds and Cashews.


So I'm going through stuff and trying to organize my bedroom and Kaedyn comes rushing in and his lips are like CRAZY swollen ....  and I put down what I'm doing and he's about to burst into tears.  He's like "Mom my mouth feels weird" ... I said "I can see that, what happened?"  I'm asking him if he got hurt - if he fell - if someone kicked him in the mouth, if he teeth fell out... cuz in my mind, this is OBVIOUSLY some sort of traumatic event that happened to his mouth.

He's like "Mom, NO!  I ate that banana looking thing."

Now I'm thinking he went outside - because he had been in and out all day - and he picked something off a plant that was poisonous to humans, and I need to get him to the ER.

He's like "No MOM! That bag of popcorn."  So I tell him to show me and follow him out, meanwhile I am yelling for DB.  "HONEY WE HAVE A PROBLEM!!"

He hands me the bag of popcorn and I start dumping it out into a bowl.  He described it as ... the white/yellow curved things that looked like a banana."

I'm not kidding, the thought of "What did you think you were eating Runts?" crossed my mind.

So I pick up an almond and he's like "No not that one"

So then I pick up a cashew and he's like "Yeah that's it...."

So DB is like, we're going to the ER now.  He asked me to keep an eye on dinner because he was in the middle of cooking.  He literally grabbed Kaedyn and ran out the door.  Didn't grab a jacket for him or anything, barely got his shoes.  So I walked to the bedroom, and I looked down at my shoes, and I thought - WHY am I staying here?

So I yell for the older kids to finish dinner - as I'm slipping into my shoes.  I run out the door hoping they haven't left yet.  So I see he's still buckling Kaedyn in his carseat and he sees me, says "Are you coming with?"  I said "Yeah."  My phone is dying, I didn't even grab my sweatshirt so all my psoriasis is exposed (well not all of it, but my arms and my chest and my face because I'm wearing a short sleeved shirt.)

.... and I'm cold.

But DB drives to the hospital which is 5 minutes away - shorter time frame to sit there and call 911 and wait for an ambulance.  So he's driving with his hazards on because he's speeding and I realize I'm not even buckled in.  I'm too busy sitting sideways in my seat watching Kaedyn's face swell up.

This is Kaedyn right before we left the house.  You can see his lips are swollen and he has the red lower face, like a beard.  It was hard getting a pic of that, but he had a very distinct line from the bottom of his nose to his neck - it was all red.

DB drops us (Kaedyn and I) off at the door and I grab him and run in.  They get him checked in, and then he gets taken back almost right away.  They do vitals on him, they are getting a room clean at that moment and he's going in that room.   So when it's clean (or almost clean - they were making the bed when we walked in) ... we got taken back.  Kaedyn is just scared .... terrified.  We already warned him they would have to give him a shot (epipen) ...

We had an epipen in the house, because of DB's allergy to Lobster.  However, didn't think it would be a good idea to use it on Kaedyn.  Adult dose.

They get him in the room and all sorts of things start happening.  They wanted him to talk to hear if his throat was swelling and he just wouldn't do it.

One of the first questions we were asked, was ...  "are his lips normally that big?" ....... um NO.

They wanted to get an IV in and give him a shot of epinephrine ....


Here he is getting the epinephrine shot in his leg.

His lower lip was BEYOND swollen.  He was starting to get tiny little hives all over his face, his left eye was turning pink/red.

You can see in this picture that he's starting to improve.  His face is starting to clear up...

 They gave him the epinephrine, some steroids, some benedryl, and with all the meds on bored, he got super tired.

This is a comparison pic.... the top one is when we first got there, the bottom left while he was sleeping, and the bottom right awhile after ... you can see it slowly got a little better and then noticeably got better.

Here is a collage for the scary night :(

After he woke up he asked to watch YouTube....


And I thought his upper lip had completely gone down and it was just his lower lip, until.... he... opened .... his .... mouth....


We were there 4 hours under observation.  But since he was getting better and NOT having a rebound reaction ...  they sent us home.

The nurse gave him a pack of G.I.Joe guys when we left.  She's like "I should have asked you first but he did so good and he really was my bravest patient today."

First we had to go down to the ER Pharmacy - because we were not going home without an epi pen.  They called down prior to our being discharge, and the nurse walked us down.  She told us it should already be ready.  So get down there, hand them the slip, they go - "oh yeah, we got a call about this" ... "It'll be about 20 minutes."   Seriously????

We have to wait, we don't have a choice.

Kaedyn:  "This is going to take forever."
Kaedyn: "I'm bored!"
Kaedyn:  "I just want to go home Mom, I'm so hungry."

The green ones are Kaedyn's - the yellow one is DB's...



We stopped at the store to get him a lunchable and a few other things, because that's what he wanted to eat.  Since he did such a good job, I figured he deserved it.  And he wanted some apple juice.   (you can see both in the picture below on the arm of the couch.) ...

(Added March 1st) So began the fight.  We got home at 11pm and the fight to get ALL the kids to bed started.  So begun the Kaedyn vs. Mom - what was going to fall asleep first, fight.  Well, Mom lost.  I woke up every 2 hours having nightmares and at 4am - this is what I finally found.


So I took the Frankenstein Laptop, put it away, and tucked him in.

So let's talk about this new allergy of his.

He was tested in 2012 - and NOT ONE FOOD ALLERGY came up.  Not one.

So I started researching ....  even though I have the same allergy.  I can eat peanuts and almonds but I am allergic to all other nuts.






List of Tree Nuts



And now we have to really look into getting him one of these.  Also need to get him into his Ped on Monday and get allergy testing done again - ASAP.  





So out of curiosity .... I looked up the ingredients of Candy Corn ... because that's what he was eating when he got his horrible hive reaction in October 2011.


So ........


Do you see what I see?????


"This product was manufactured in a facility where .... TREE NUTS .... are used in the production of other products."

Yep.

SO WHY OH WHY OH WHY .... OH WHY ... didn't they pick up on the TREE NUT allergy when he got tested in 2012????   WHY???

It's scary biznitz ....  Allergies are a SERIOUS issue in our house.  I'm allergic to a lot of things.  The majority of fruits - probably because they are tree dwelling.  I am not allergic to grapes, maybe because they are grown on vines instead?   I am allergic to Tree Nuts also.  Again, I can eat peanuts and almonds but not the rest of the tree nuts.  I am allergic to so much pollen. I am allergic to grass, animals, soaps and other products.  DB is allergic to shellfish and lobster.  He has to carry an epipen as you saw above.  So yeah.  Allergies are no joke in our family.