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"