366 Books Day 36 - Don't Let the Pigeon Drive the Bus! - For Tensy

Meet Tennyson.

Tennyson, who is better known as Tens or Tensy, faces a life time of challenges. But despite all of his challenges he is a fighter and out to prove everyone wrong. 

Tensy was born with a form of primordial dwarfism, which is a rare conditions that result in a small body size and other growth abnormalities. Signs of the condition first appear in the fetal stage and continue throughout the lifetime of the individual.

He also has 1p36 deletion syndrome, that is a congenital genetic disorder characterized by moderate to severe intellectual disability, delayed growth, hypotonia, seizures, limited speech ability, malformations, hearing and vision impairment, and distinct facial features. 

Tensy was also born with spina bifida, which is a type of birth defect of the brain, spine, or spinal cord. This is a defect in which there is incomplete closing of the spine and membranes around the spinal cord during early development in pregnancy. 

Tensy also has a rare progressive lung disorder, non reactive hypoglycemia and a severe seizure disorder.

Yesterday, Tensy celebrated a milestone that doctors believed he would never reach! Tensy turned 5 years old! Tensy may now be 5 years old, but his size and comprehension is similar to that of a 2 year old. He is one super special child, who does not let his complex medical diagnoses slow him down! 

If you would like to follow Tensy's story, you can follow along on Instagram.com/hipsterbaby_pdx    

Thank you to Tennyson's mom for sharing his story with me and allowing me to share about him and the challenges he faces.

Don't Let the Pigeon Drive the Bus! by Mo Willems
¡No Dejes Que la Paloma Conduzca el Autobus! by Mo Willems

All of Mo Williams Pigeon books are especially loved in Tensy's home. Specifically, “Don’t Let the Pigeon Drive the Bus." Tensy is nonverbal, so it’s hard to know what he loves. But believes he loves the somewhat repetitive nature and he grasps that these are unusual behaviors for a pigeon. The truth is this book is fun for preschool aged children. It does offer a great repetition to the story. it also works through emotions with the pigeons different reactions to being told know. There is always some silly part to these books, that keeps children giggling along to pigeons adventures. 

"Hi! I am the bus driver. Listen I've go to leave for a little while, so can you watch things for me until I get back? Thanks! Oh, and remember : Don't let the pigeon drive the bus!" 

YouTube reading of Don't Let the Pigeon Drive the Bus! 

Ages : 0-6
Grades : P-1

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

If you would like to donate toward the purchase of books for donations please send to : Paypal.me/pumafamily and notate "Book Drive"

366 Books Day 35 - Ten Shiny Snails - For Chevy

 Meet Chevy 


Chevy was diagnosed with Atrial Septal Defect (ASD) and Pulmonary Stenosis at 2 months old. At 3 years old Chevy's heart required the ASD to be addressed, and a closure procedure was done to repair her heart. All but a small piece on each end of her upper wall was missing, so the blood was flowing incorrectly. The defect was also causing her heart rate to drop any time she was face down. So if she slept on her stomach her heart rate would drop. Learning to crawl took Chevy a while because her heart rate would drop and she would tire out very quickly.

Luckily within the few months before surgery, the wall grew slightly at each end, making it so she would not need open heart surgery. Instead they were able to do it by going through a vein in her groin and placing a closure device that connects to each side of the wall and it the wall kinda grew over it.

At first she had to play gently, no running or jumping, things that could knock the device loose. Now she plays as much like other 5 year olds as she can. She has to have an echocardiogram done yearly, to continue to monitor her progress. Chevy has no restrictions. She does still have the defective valve that controls blood flow to the lungs, which thankfully isn't causing her any issues at the moment. But they are watching that because it could become an issue at some point. 

In addition to her heart conditions, Chevy also has been diagnosed with hemihypertrophy, which is a growth disorder, where there is excess growth on only one side of the body. This is an extremely rare condition. This condition makes a lot of things more difficult for Chevy. She did not crawl until she was 11 months old. Chevy was 18 months when she started walking. She didn't run until she was 2. Chevy has balance difficulty and falls a lot. She falls multiple times every day. Chevy's head leans to one side, but with the help of massage therapy it has improved significantly. She wears a lift in one of her shoes to help minimize the difference. Because of her condition, she has struggles with things we may not even think about. For example, Chevy has a specific way she has to go up and down stairs. Her organs also are over sized on the impacted of her body. Her doctors are monitoring this closely. The truth is Chevy is a bit of a mystery to all of her doctors. She has a whole team trying to understand her condition and why she has all these issues. Genetic testing has sadly indicated nothing to this point.

Chevy also faces hearing and vision impairments, developmental delays, hypoglycemia, and a high risk of cancer. Chevy has regular check-ups to monitor her health. She endures constant testing and evaluations.

Chevy is currently a spunky 5 year old that melts the hearts of all who meet her. Chevy has 2 older sisters who love her very much and her step father and I who she lives with. Chevy loves reading, doing homework, and playing games like memory match. She has difficulty keeping up with kids her age but she does her best and keeps pushing every day to gain strength and stability. She lights up the darkest days with her amazing personality.

Thank you to Chevy's mom for sharing her story with us, and allowing us to share about Chevy and her complex medical conditions.

Ten Shiny Snails by Ruth Galloway

Ten Shiny Snails is a special book to Chevy, one her family wanted for us to share. This book is a fun pop-out counting book that is full of surprises. Follow these little snails on their journey through the garden, as one by one they disappear. This book is a wonderful way to talk about counting, numbers and subtracting.

"Five tiny snails play in the morning breeze. One joins a hedgehog in the rustling leaves."

YouTube reading of Ten Shiny Snails

Age : 0 - 5
Grades : P - K

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

If you would like to donate toward the purchase of books for donations please send to : Paypal.me/pumafamily and notate "Book Drive"

366 Books Day 34 - The Tiger Who Came to Tea - For Megan

Meet Megan.

Megan was born at 36 weeks via c section on the July 20th, 2015. She was taken to special care baby unit as she required some oxygen. Over the next few days she was struggling to feed and still needing a lot of oxygen. On day 6, the doctors shared the devastating news that Megan had a very serious congenital heart defect (CHD). Megan's doctors sent images over to a heart specialist at Glenfield in England, which is hospital that specializes in pediatric heart conditions. It was quickly determined by the heart specialist that Megan needed to be transferred to them straight away. So Megan was prepared for a transfer by ambulance. During the transfer, Megan had difficulty getting and remaining stable. Eventually she was stabilized, and they arrived at Glenfield. Megan's parents and family followed behind. 

Upon arrival, her family was taken into a little room where the cardiologist explained Megan's heart defect. It was explained that Megan had infracardiac total anomalous pulmonary venous drainage (TAPVD) and she required surgery very soon in order to survive. This was certainly a lot to handle. Especially with being told this about their a 6 day old baby, who was extremely sick. 

Megan had her life saving surgery at 7 days old to repair her heart. Seeing their baby girl with all the wires and tubes, and beeping machines was very hard. But they knew she was now on the road to recovery. And she really was, as Megan had a smooth recovery and was home 8 days after surgery!! Amazing right? 

Once home Megan still struggled to feed and had a feeding tube at home called a nasogastric, or more commonly called an NG tube. This tube goes in the nose, past the throat and into the stomach. This tube can be used to administer medications, to give formula or blended food, and/or fluids. This tube allowed Megan to meet all her nutrition needs. 

At 5 months old Megan was making a lot of grunting noises and had poor head control. She had a routine heart check up, and unfortunately Megan's pulmonary veins had started to narrow her heart was poorly again!!

Megan had developed pulmonary vein stenosis (PVS). This is a rare and life threatening condition in which there is a an abnormal thickening of the walls in the blood vessels that bring blood from the lungs back to the heart.  Megan had a cardiac catheterization (CATH)  procedure to try and put a stent in, but this prodedure was unsuccessful. Megan needed a second open heart surgery to open up her pulmonary vein.

At 6 months old, Megan had her second open heart surgery. Seeing her again with all the wires tubes and machines was so difficult for Megan's family. They continuously prayed for a smooth and easy recovery for their baby girl, who had already been through so much. Recovery was a little tough, and Megan's stay this time was a little longer before being transferred to our local hospital.

Since then Megan's heart has been stable, but she still has regular cardiac check-ups with her cardiologist. There is a chance Megan's pulmonary veins will narrow again as she grows, but they will deal with that if and when it happens. As for now her heart is GOOD.

Megan is currently a happy 4 year old girl who is living her best life. She still has a feeding tube to help her meet the proper nutrition goals. She is currently on G-CSF (a type of growth factor drug) injections to help her bone marrow produce more cells because she is neutropenic. Neutropenia is a condition where the body does not produce enough neutrophils, which are a type of white blood cells.

Megan fights with everything she has got. She is her mom's "little miracle"  

If you would like to learn more and support Megan and her family, you can join her updates group on facebook at Megan's Journey

Tiger Who Came To Tea by Judith Kerr

The doorbell chimes just a Sophie and her mumm are about to sit down for tea. Who could it possibly be? They certainly never expected to open the door to a large, furry, stripy tiger. This book takes you on the adventure of afternoon tea with a tiger. Would the tiger eat just one sandwich? No, of course not, he ate them all. This book is fun and silly. A wonderful book to add to your book collection. 

"Sophie opened the door, and there was a big, furry, stripy tiger. The tiger said, 'Excuse me, but I'm very hungry. Do you think I could have tea with you? Sophie's mumm said, "Of course come in.'"

YouTube reading of The Tiger Who Came to Tea

Age : 2 - 6

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List 

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

If you would like to donate toward the purchase of books for donations please send to : Paypal.me/pumafamily and notate "Book Drive"

366 Books Day 33 - Zip-Line - For Allyson

Meet Allyson. Allyson was born with radial dysplasia and no thumbs. Children, like Allyson, born with radial dysplasia, or more commonly also called radial club hand, are born missing or with a short radial bone (one of the two forearm bones). This condition causes the hand and wrist to turn inward toward the thumb side of the forearm, and ultimately makes the child's forearms shorter as well.

At age 3 months old Allyson started traveling to the children's hospital in Boston to meet with her team of doctors. At a year old, Allyson endured her first surgery and had her left hand operated on to help straighten it out. When she was 2 years old, she had another surgery this time for her right hand. Unfortunately, during this second hand surgery the doctors discovered that Allyson had a congenital heart defect (CHD). They found a very large whole in her heart.

This defect was life threatening for Allyson. It was explained by the doctors at that time, if Allyson did not have a repair done to the defect in her heart, then she would be dead by the age of 5. So on December 28, 2014, Allyson had open heart surgery to repair the hole in her heart. Despite only being only a preschooler, Allyson was a rock-star and did awesome through everything. Truth is Allyson is still a rock-star!

 

Allyson is currently a healthy and happy 8 year old child. Allyson goes in for regular check-ups to continue to monitor her heart. She has spent a lot of time in Physical Therapy (PT), but now only receives Occupational Therapy (OT) in school. Everything in life will always be a little more challenging for Allyson, due to her arms being shorter than her peers, having no thumbs and because of the way her hands grow. But Allyson does not let her diagnosis hold her down. Allyson is always so happy, as her smile just beams. She is an independent young lady, who loves to be active and just as involved as her peers. Allyson especially loves dance, and has been a dancer since the age of 3. This past year she began cheer!

Thank you to Allyson's family for allowing us to share her story. 

Zip-Line by David Humpherys

Zip-Line is the perfect story for a child who have endured open heart surgery. This book whimsically answers the question of "how she got that scar on her chest?"  Zip-Line is written in a social story type format. It helps for a child to see that she is just like any other child. Able to the same activities and enjoy just being a child. It gives confidence to a child who has experienced open heart surgery. This book would be a wonderful addition to any library to help teach diversity and acceptance. As well as a wonderful way to help a child understand how to share about their own scar. 

"If you peek at my middle, in the center of my chest
you'll notice something different, it's not like all the rest."

Get the inside look at the story Zip-Line   

Age : 2 - 6
Grade : P - 2

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Books Day 32 - In My Heart - For Killian

Meet Killian

Today, I am kicking off celebrating Congenital Heart Defect (CHD) awareness month, by sharing the family that first made me truly aware about the truths of CHD.

Killian "little warrior" was born on August 28, 2016. At 5 days old Killian was diagnosed with CHD. More specifically was diagnosed with branched pulmonary artery stenosis, hypoplastic aortic arch, and aortic stenosis near the sinotubular junction area. On December 15, 2016, at 3.5 months old, Killian endured his first open heart surgery. It was complicated and ultimately he was put on extracorporeal membrane oxygenation (ECMO). ECMO uses a pump to circulate blood through an artificial lung back into the bloodstream. Basically, is a heart-lung bypass support outside of the body. Within 24 hours Killian required a cardiac catheterization (CATH) due to an unexpected complication from his heart surgery. The CATH was done to balloon his pulmonary valve and branched pulmonary arteries to get a better view of a blocked coronary artery. Following the CATH, Killian immediately required a second open heart surgery to modify the original repair. Killian spent 5 days on ECMO and 20 days in the cardiovascular intensive care unit (CVICU) at Phoenix Children's Hospital. Celebrating his first Christmas recovering from 2 open heart surgeries.

Sadly, in the months that followed it was learned that Killian's heart did not adjust as well to the surgery as was hoped and needed his care to be transferred to Stanford for further treatment and additional surgery. The truth is that Killian had a unique combination of issues that are not easy to treat. After the first set of review from Stanford, Killian was scheduled for surgery at Stanford in August. But after another follow-up appointment at the end of April 2017, it was learned that Killian's need for a 3rd open heart surgery was needed sooner than later.

On May 8th Killian had a second CATH procedure to help prepare for his open heart surgery. Then on May 10th he endured his 3rd open heart surgery. A surgery that lasted 15 hours. Killian needed 22 patches. 10 in the left lung branches, 1 on main artery and 11 in the right lung branches. Prior to surgery Killian's right ventricle pressures was 140s. His doctor was hoping that with this repair to get his pressure to half that, so 70s. Normal pressure is considered 25. After surgery Killian's pressure in his right ventricle was 25. Killian had normal pressure! Ultimately, his surgery could not have gone better.

On May 12, 2017 Killian's mom posted this on Killian's facebook page. "12 years ago today I lost Colin my precious baby boy to Open heart Surgery. Its still SO hard to understand the why. I am blessed he taught me more then I would realize. Today Killian fights to recover from a 15 hour open heart surgery. I realize now how I have become stronger & how to be the best advocate for Killian.
Colin is greatly missed but not forgotten. We talk of him often & much more this week then ever before. Mommy love you little one. Killian had a good night overall, his lungs are junky but that is to be expected for the trauma they endured with the 22 repairs her had. We are happy with where he is at for the time being. His bp is getting better & a few meds have been changed. This boy is a fighter! He will kick CHD's ass! I will not lose another child to this. His brother Colin gives him strength from above."

Today Killian is 3.5 years old and absolutely fits his given name which mean "Little Warrior." He has endured the impossible and is thriving. He is still being tracked and monitored often with routine follow-up appointments. But for now, he needs no further surgeries or procedures.

To read more about Killian's story visit https://www.facebook.com/KillianLittleWarrior.

The truth is this family has 3 children with CHD. Colin died during open heart surgery at 6 weeks old. Callie who is 7 years old and is living with CHD, and monitored yearly. And Killian. CHD is not rare.

In My Heart : A Book of Feeling by Joe Witek

This is the perfect book to share to kick of CHD awareness month. A book about the heart, just not the anatomical one. But all the things our hearts can feel. This is a book that Killian has been read over and over again, and that his family wanted to share with his story. Our family also loves this book. This book shares lots of new and old feelings. And how they may feel to you. These feelings, words, give a child the power to express what their heart may be trying to say, but are not quite sure how yet to express it. This book is wonderful in helping a child explore their expressions and be able to better identify how they are feeling or how something makes them feels. This book is full of powerful illustrations and highlights a heart-shaped cut-out on every page, that gets smaller with each turn of the page. The overlapping cut-outs create a beautiful rainbow, which is very much like our wide range of expressions and emotions. No two are the same, just as no two colors are the same. Each just a little bit different.

"Sometimes my heart feels like a big yellow star, shiny and bright. I smile from ear to ear, and twirl around so fast, I feel as if I could take off into the sky. This is when my heart is happy."

YouTube reading of In My Heart

Age : 2 - 4
Grade : P - 2

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

Little Hearts of February

Welcome to February. Not the heart you were expecting I am sure. But the hearts I will be sharing this month.

I know you were expecting little red hearts to greet February. As little hearts are everywhere. Little red hearts. Those little red hearts are reminders for me of what February truly represents.

February is for Congenial Heart Defects (CHD) awareness. It is month to honor and celebrate the families and children who are impacted by CHD. It is a month to educate those in our community about the true nature of CHD and the reality of CHD. Because CHD is not rare. It effects 1 in every 100 children born. That number is massive, and real.

This February, I hope to highlight numerous CHD children and their families. To share their stories about the reality of CHD and how it impacted their lives. I hope to help advocate and educate others about the truths of CHD. I hope to learn more myself, as I share their stories and facts throughout this month. I hope you will join me as we talk about the all the tiny hearts this month and share their favorite books too.

I apologize for kicking off one day late. I have been sick, and finally able to focus on a computer screen without headaches. I will also be catching up on book days missed in January over the coming weeks over on Go Gold Book Drive.

Thank you Blanket Hugs Foundation for this beautiful heart illustration to share.

I am not strong, strength finds me

For several years now, I feel I have been living a lie of who I am. Of how you see me. So often, I have heard the words, “You are so strong. I could never have the strength to live through what you have lived and still be standing. To have my child battle cancer. To have my child die. It is unimaginable, unfathomable. You are so strong. I could never have your strength. I could never.”

Truth is I am so weak. I am so very weak. I am far from the "strong mom" that I have been declared. That you believe you see. I had zero choice in my reality. Have zero choice. If I did, this would certainly not be the version of life I would ever choose. I would never have chosen to watch my young child suffer a horrible disease, one that ultimately took his life. I would never choose to walk this earth everyday forward without my child. I would never choose grief, pain and suffering. I would never choose this version of my life. I would never choose this reality.

I had zero choice. This is my reality. It was forced upon me. What choice did I have in any of it? What choice do I have now? What is the alternative? To give up? What would giving up even look like to you? Because the truth is I have given up. I gave up control. I gave up my idea of our family. I gave up my idea of our future. I gave up my dreams. I gave up my idea of hope. I gave up my idea of a miracle. Of a cure. I gave up on my child living. I gave up everything I desired in my life. I gave up my life. I GAVE UP. I am weak, and I gave it all up. UP. I gave it UP.

I gave it all up to God. I gave him the control. I gave him my family. My child. My future. My hope. My trust. My faith. I gave it all up. I gave Him my life. I said, “It is Yours.” I can not, but You can. You, God, take it from me. I give up. I gave up.

Recently, I have been watching Private Practice on a streaming app. And one episode, one moment in the episode, caused me pause. A statement in the episode so perfectly explained strength. One character said to another, “Where did you find the strength?” The other replied, “We’re women, honey. The strength finds us.” The strength finds us.

Strength found me. I am not strong. The strength found me. God’s strength found me. There is no other explanation. Period. I am so weak. But the strength of God fills my soul. This “strong mom” I am so often labeled as is a lie. The truth, I am strong because of God. His strength finds me. The truth, I am strong in my faith in God. I am strong in God. I gave up. And he picked me up. He filled me up. He became my strength.

It is not my strength you see. It is all God. He promised me on October 21st, 2016 in the PICU room on the 6th floor of Phoenix Children’s Hospital, that He would never leave me. Two days into my son’s diagnosis, as my child was recovering from brain surgery, He promised me. He promised me that this was His fight, is His fight. That he would carry me if I let him. And I said to Him to carry me. That I can not do this on my own. That I am too weak. Carry me. Carry me. Carry me.

This “strong mom” you see is no different from you. I am no stronger than you. I have just been held to the fire in my faith. Put in the lion’s den. I have been forced to step out of the boat in faith. I am trusting God. Trusting He will hold me up, carry me, and give me the strength to live through today, tomorrow and the next day. Faith that God’s strength finds me every minute of every day.

I lean into His strength, His promises. Trusting and knowing His promises. The promise of an eternity in heaven. The promise He will never leave me. The promise my battle is His battle. The promise He will carry me, and never let me fall. No matter my pain, my suffering. I can lean into His truth. Rely on His strength. I am strong because my God gives me His strength. The strength to live today and to see tomorrow. I am weak. I am not strong on my own. I am strong because my God is strong. I am filled with His strength. My God is strong. I am weak.

Written by Kristen Puma

Psalm 59:16 NIV : "But I will sing of your strength, in the morning I will sing of your love; for you are my fortress, my refuge in times of trouble."

366 Books Day 20 - I am Martin Luther King Jr

I am Martin Luther King Jr by Brad Meltzer

Today, we celebrate Martin Luther King Jr. I want to honor his life in the book for today. Because his life changed our world. It changed the way we see the world. His vision is one that we need to remember even now, decades later. This book depicts the life of Martin Luther King Jr. This is a wonderful simple and concise book to share his voice.

"Then my mother taught me one of the most important lessons of all.
You are as good as anyone.
You must never feel that you are less than anyone else."

YouTube reading of I am Martin Luther King Jr

Age : 5 - 8 
Grade : K - 3

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Books Day 19 - The Name Jar

The Name Jar by Yangsook Choi

This story is about a little girl who is starting at a new school. Whose name is very different and hard to pronounce. She decided she wanted to change her name to something different, but did not know what name to pick. This book encourages acceptance and friendship. Also talks about some of the cultural diversity that we have within our world. Another wonderful book about inclusion.

YouTube reading of The Name Jar

Age : 3 - 8 
Grade : P - 3
Guided Reading Level : N

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Books Day 18 - The Invisible Boy

The Invisible Boy by Trudy Ludwig

I think we can all feel invisible at different times in our lives. Brian feels just that way. Like he is never seen. Always skipped over when picking teams at recess or hardly noticed at lunch time. He is left out of the conversations, and no one seems to notice. The illustrations of this book are magical and brilliant. As things change, Brian changes in the drawings. This book should be added to any elementary classroom, as a way to discuss bullying, inclusion of others, and kindness. It is a simple story that is easy to follow, but is certainly contains a big conversation starter about including others.

YouTube reading of The Invisible Boy

Age : 6 - 9 
Grade : 1 - 4
Guided Reading Level : N

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Books Day 17 - Last Stop on Market Street

Last Stop on Market Street by Matt de la Peña
Última parada de la calle Market  by Matt de la Peña

The Last Stop on Market Street is a New York Bestseller. It was the winner of the 2016 Newbery Medal, a 2016 Caldecott Honor Book and a 2016 Coretta Scott King Illustrator Honor Book. This book opens the world of a different view. It is a beautifully told inclusive story. The story travels through CJ and his grandmother's Sunday afternoon. CJ asks why they have to take the bus, and why they do not have a car? Why they always have to go somewhere after church? As the story unfolds, the grandmother has a way of sharing the beauty of the world around them. Making the dull routine exciting again. This is also a great book to introduce the idea of volunteering with your child as well. 

YouTube reading of Last Stop on Market Street

Age : 3 - 5
Grade : P - K
Guided Reading Level : M

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

On the night you were born - Sammy's Birth Story

On the night of January 15, 2012, I convinced Charles to spend the evening out with a friend of mine celebrating her husband's birthday. My friend and I had joked early in the evening that the Mexican might put the fire under little man to get him moving. I still thought he would be late, and even joked I would be at bible study on Thursday. As I was still having no signs of him making his debut.

Boy was I wrong.

At 5am on January 16, 2012, I woke to the strangest sensation and ran to the bathroom. I peeked out of the bathroom and told Charles, "Either I have lost all ability to control myself and peed myself, or my water just broke." I made a quick call to my OB office and was told by the nurse on-call to head to Labor and Delivery at the hospital. So we gather the belonging I had finally gotten ready only days before, and we were off to the hospital. I waddled into the hospital and got checked in. I was directed into a temporary room to get checked out before being admitted. Sure enough, my water had broke. However, I was only 1 cm dilated. It was going to be a long day.

Around 7am, we got settled into our labor and delivery room. The nurses hook me up and start me on pitocin to help the labor process. It was slow going. My contractions were moderate, but my back pain soon became very uncomfortable. I tried various positions to help relieve the pain, but had no luck.

By 2pm, I caved to the pain and asked for an epidural. I knew it was still early on. I was not sure how far along I had progressed since the morning, but knew I still had a ways to go. They set me up for the epidural, and finally has some relief. The doctor came to check me again to see the progress, but I was only at 3cm! I was just not progressing well.

I was checked again about 5pm and had progressed to 4-5cm. The nurse commented that things would progress quicker now, as I was now considered in active labor. Normally this is the point where they admit patients. As for me, I was feeling great. The epidural was working wonderfully. I was able to get some rest after a long morning.

At 8:30pm I was checked again, I was 8cm! I was getting closer and was finally making some good progress.

I was finally just about 10cm at 10:10pm. However, Sammy was still high up and had not worked his way down the birth canal. So the nurse decided to try and have me do some pushes during contractions (since i could feel them) to see if we could get him to come down. She was very pleased with the first round of pushing, so we continued for couple more contractions. About 5 rounds of contractions total, when she decided it was time to call for the doctor. Sammy was on his way to making his debut. While we waited, she was going to have me do one more round of pushing, but when I pushed she told me to stop and not to push anymore or he would come. Oh was that hard to hold off on my natural desire to push. He was ready, but they were not. Once the doctor arrived and all was prepped, the doctor had me push. One push and Sammy was halfway out. But the cord was wrapped around his neck, so the doctor cut the cord instead of Charles. Then one more push with the next contraction and Sammy was born. 

At 10:38pm, Samuel "Sammy" Puma arrived, my little man was born. 6lbs 13ozs, 20 inches long and absolutely perfect! My arms were now full with my son.

Sammy changed my life forever. Forever making me a mother. And him my child, always and forever. Though I had no idea on this day in 2012 where our life would take us. That his life would end at 6 years old. That one day I would hold him in my arms as he died. That I would live my life carrying his memory, holding him forever in my heart. This day changed me. For good. I would not change any of it. I would do it all again for the moments I had with my child. Sammy is deeply loved, and forever cherished. Sammy will and always be my child, my son. Forever and always.

366 Books Day 16 - The Invisible String - For Sammy

The Invisible String by Patrice Karst

When I began this 366 Day Book Drive, I shared I wanted to take the opportunity this year to share books that are special to some special families. Families of those who have a child with a complex medical diagnosis. Families who would most likely be impacted by book donations to a local children's hospital. While our book drive currently collects for books to be given to the book nook area of the cancer clinic at Phoenix Children's Hospital. I have very big dreams for our book drive. The importance of giving an adventure through opening a book is immeasurable. And all children deserve the simple gift of an adventure. Throughout this year, I will be sharing these special books, but also telling you that family's story. About their child. Creating a space for awareness for families, while sharing our love of books. I hope you will enjoy joining us in meeting these children & their families, and of course reading about all their favorite books.

Today is the perfect day to kick off our Share Our Story posts with our own son Sammy. Samuel "Sammy" Puma. Born today 8 years ago. January 16, 2012. Sammy was our first child we held in our arms. Sammy was always special. He had a way about him that drew people near to him, from his very beginnings. When Sammy was 3 years old, he was diagnosed with autism. This was after a couple years of speech therapy and realizing the concerns went beyond his communication skills. So just after his 3rd birthday, we started the therapy routine with ABA (an autism therapy). It was intense. It was a full time job. But he conquered every skill and task put in front of him. He continuously surprised us. We soon learned that no one could put limits or expectations on Sammy, because he would prove you were wrong. He would surpass whatever the goal. Our therapist could barely keep up with writing new goals and changing his care plan. Definitely not a bad thing. It meant that therapy was working. That he was thriving. And that is all we dreamed of for our child. For him to thrive. To be confident. To be independent (whatever that may look like for him). To know he was capable of almost anything.

Then in October 2016, at 4 years old, Sammy walked into the ER and was diagnosed with a brain tumor. Everything changed. Our lives changed forever. Forever impacted by cancer. Sammy endured horrors for months. He went through a brain surgery, that left him a fraction of who he was days prior. He lost almost all of his abilities. Days after the surgery he was unable to talk, to sit up, to move his eyes, to turn his head, control any of his limbs, eat, swallow. Nothing. After weeks and months of therapy, he eventually regained some of his abilities. But never was the child that walked into the ER again. Sammy endured high dose chemotherapy and a stem cell transplant. He endured months of being inpatient. Never leaving the four walls of his room. It was 6 months before he felt fresh air again on a walk to get a hearing test done, which was not successful. But he got to go outside. It was nearly 9 months later that Sammy was finally released from the hospital, and he got to come home. 246 days. That is how long he lived in a hospital room.

Sammy came home in a wheelchair, with a feeding tube, and needing hearing aides. His life was forever impacted by brain cancer. We slowly adjusted back into normal home life. Making the changes needed to our home, our vehicles, our lives to adjust to caring for a child who could no longer walk. A child who need round the clock care.

September 1, 2017. Ten weeks after we returned home with Sammy, we found ourselves back at the ER. 11 months from his initial diagnosis. Sammy was diagnosed as terminal. No treatment plan available to give us a cure. Just time. The next several months were a fog. A fog of palliative treatment to help give us time and Sammy quality to what life he had left to live.  A fog of making the most of the time we had left. Making all the memories we could as a family. Knowing our time was limited. We were on borrowed time. Our son at 5 years old was diagnosed as terminal. We celebrated our last holidays with Sammy. We celebrated his 6th birthday. His last birthday on this earth. We celebrated Easter. And then we took him to hospice to die. On April 12, 2018, at 6 years old, Sammy died in my arms (mom's arms).

Our son deserved a chance at the future we had fought so hard to prepare for him. The future he was striving towards. The life we hoped for him. One where he was confident, independent and thriving, despite. One where he proved the world wrong about labels. All that was stolen from him. From us. Childhood cancer is not a priority in our world. Our son was treated with 40 year old drugs, and hoping the odds would be in our favor. Our child deserved more. He deserved better. Today my child should be turning 8 years old. But instead he is forever 6.

This is Sammy. This is just a part of his story, our story. You can learn more about his story, right here at adventuresofsupersammy.com, on our facebook page Adventures of Super Sammy or on instagram @adventures_of_super_sammy.

The book The Invisible String was chosen to be shared for Sammy. To honor Sammy on his birthday. The first time this book entered our home was in May of 2016. I was looking for books to help Sammy through the time that daddy would be away for basic training with the military. A book to bring comfort and understanding about how even being far, daddy still loved him and he could still love daddy. And they both could know. We read this book a lot from May until when Sammy entered the hospital. Then we read it some more. Because Sammy was isolated from family, friends, his brother. We read it to Logan (Sammy's little brother) to let him know that Sammy still was there, despite not being present. Then we read it even more in the final months of Sammy's life. We had a stack of books that we read often, and this book would float to the top often. And then this was the book we chose to have read at Sammy's celebration of life service. A way to open the conversation for all the children to know that Sammy is not far. That there is an invisible string that can reach Sammy, all the way in heaven. Now we continue to read this book with Logan, as a reminder that we are never far. That Sammy feels us, and we feel him. Our book is well worn and well loved. This is the book chosen to share Sammy's story. This book is for Sammy. 

This book is a wonderful tool for a child that is dealing with separation. Whether going to school for the first time, or parent has to travel for a bit, or a loved one has died. It helps to open the conversation that love keeps us forever and always connected to one another. The invisible strings that keep us connected no matter how far. This book is easy to read and understand. 

"Mom held something right in front of them and said, 'This is how.' Rubbing their sleepy eyes, the twins came closer to see what Mom was holding, 'I was about your age when my Mommy first told me about the INVISIBLE STRING.'" 

Reading of The Invisible String at Sammy's Celebration of Life

Age : 4 - 8
Grade : P - 2

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive



  

the day before your 8th birthday

Sammy,

Tomorrow you would be 8 years old. A birthday on earth would be so much easier and simple. But instead you are celebrating your second birthday in heaven, with 6 on earth. Grief math. You do not age beyond 6 years 2 months and 28 days. Every day further is a day you are in heaven. No wishes to blow out. No party to prepare. No friends to invite. No presents to unwrap. Just memories. Memories is all we have. The best birthdays behind us. Every birthday is behind us. We can not document as you grow. As you add another year to your life. I have no idea if your best friend would have changed with entering school? No idea what clothing you would prefer to wear? How you would want your hair styled? What tv show would be your automatic watch? Or what music would be you jam? No idea if you would be walking yet? Or back in martial arts? No idea if you'd be writing your name or using a keyboard? Would you still beg for your 3 books at night? Or would you be reading them to me? Everything about 8 is a mystery. Just as year 7 was all a mystery. I can dream of who you would have been. But dreaming is nothing compared to having you here. And that is impossible. You are forever 6 years 2 months and 28 days old. Your last birthday in our arms was January 16, 2018. So how do we celebrate you? A child who never ages? Who is not here? But our child in heaven?

We find ways to create space to honor your memory. For this year we are asking big. And it is for a lifetime impact on ONE family who will also endure a lifetime of heaven birthdays for their child. A child you will one day meet and welcome into heaven. I'm asking HUGE for your birthday, Sammy. And it seems impossible. About as impossible as living through tomorrow, another birthday without you here. It feels like we are being forgotten. You are being forgotten. That sharing your memory, sharing you is too much these days. That we are old news. You are no longer important. But you are important. You are forever loved. Forever cherished. Forever ours. We love you as deep as the ocean and as high as the stars. 6 was not enough, but it will have to do. Happy birthday sweet boy.

Love your Mom
Always and Forever

It feels like we are asking too much. I've actually been told I'm asking too much. But is it too much? If you were in our shoes? If this check for $10,000 was going to your family because your child died? Would our ask be too big? Our family never received this type of financial help, but we could have absolutely used it. It would have helped our family in so many ways. And we hope to honor another forever FAMily through this gift for Sammy's 8th birthday.

Will you help us celebrate our son? Can you donate $8 for his 8th birthday? Or $20 for 2020. Or $6 for forever 6. Or give big if you are able? Can you share? Tag your friends and family? Can you help make $10,000 happen for his birthday?

Sammy's 8th Birthday Fundraiser for FAM - Fighting All Monsters

366 Books Day 15 - The Big Umbrella

The Big Umbrella by Amy June Bates & Juniper Bates

The Big Umbrella is a unique story about inclusion and kindness. It takes you on the adventure of a rainy day. And how the simple act of using an umbrella can be a way to welcome others. This is a great book for any classroom or home. A wonderful book to introduce the topic and discussion of both inclusion and kindness.

"It is a big, friendly umbrella.
It likes to help.
It likes to spread its arms wide."

YouTube reading of The Big Umbrella

Age : 4 - 8
Grade : P - 3

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Books Day 14 - Strictly No Elephants

Strictly No Elephants by Lisa Mantchev & Taeeun Yoo

A simple story of inclusion and friendship. How friends are to one another. And the most basic kindness, all are welcome. We love this book in our home, it has been well read and well loved. As it shows no matter our differences, we all just want to be included. It is more fun when we invite others to join us. And it is not kind to leave other out.

"He does't like the cracks in the sidewalk much. I always go back and help him over. That's what friends do: lift each other over the cracks."

YouTube reading of Strictly No Elephants

Age : 4 - 8
Grade : P - 3
Guided Reading Level : J

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Book Day 13 - Never Let A Unicorn Scribble

Never Let A Unicorn Scribble by Diane Alber

Why should we never let a unicorn scribble? Well, this little girl just had to find out why. This story takes you on an beautifully illustrated adventure about trying something and finding out what happens when you try. At first it may seem like a disaster, but just maybe the outcome will be something magical. Maybe even as magical as a unicorn?

"I thought if I gave her just ONE crayon, what could go wrong? Well...I'll tell ya...SHE ATE IT!"

YouTube reading of Never Let A Unicorn Scribble

Age : 3 - 7
Grade : P - 3

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Books Day 12 - The Book with No Pictures

The Book with No Pictures by BJ Novak

This picture-less book is a full of wordplay and imagination. It will get any child laughing and giggling with glee. It may seem like a poor choice at first, but quickly your child will become extremely engaged in this book. And will likely grab this book often from your self. Parents teachers, caregivers, be warned. You will read some utterly ridiculous things while reading this book.

"Here is how books works: Everything the words say, the person reading the book has to say. No matter what."

YouTube reading of The Book with No Pictures

Age : 3 - 8
Grade : P - 3
Guided Reading Level : MN

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive

366 Books Day 11 - I Am Enough

I Am Enough by Grace Byers

There is so much power and strength behind the lyrical poetry that makes up the pages of this book. It gives statements to stand upon, to draw strength and identity. It talks of accepting and respecting others. This book also features illustrations of children of all abilities, and children with many differences. It is wonderful to see a book that highlights the fact that we are all different. This book will be added to our collection. And shared often with our surviving son. Because he is enough, just as he is now. And so are you.

"I know that I may sometimes cry,
but even then, I am here to try.
I am not meant to be like you;
you're not meant to be like me."

YouTube reading of I Am Enough

Age : 4 - 8
Grade : PreK - 3

This book can be purchased for donation from our Wish List: 366 Days of Books Wish List

Please ship all books to :
Forever Got Your Six : Sammy
1300 S Watson Rd A114 PMB338
Buckeye, AZ 85326

Paypal link : Paypal.me/pumafamily - Please notate Book Drive