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."