Growth Hormone Therapy: November 2020

We began growth hormone therapy on Thursday, October 15.  I was trained in our home by Nurse Christy and I later trained Dan.  The first few nights I had to wrestle Lydia down and hold her to give the injection.  She became more curious as the days went on and still has some anxiety but it's waning. 

She is tired. She is hungry. She is growing. We are now at 5 weeks or 30 days of shots.

Lydia likes to "call the shot" and tell me where she is getting it each evening.  Back of arms, top of thighs or in her rear end.  She likes to call "butt!"  Lydia now wipes the skin with the alcohol wipe before I give the shot.  She makes fake crying noises the second I start but once I poke her she stops.

Poke. Push. Wait for the click. Count to six. Done. Repeat 6 days a week.

Lydia is so proud of herself and excited to be growing. She's my hero.  Her face is maturing, a mother can tell.  Her confidence is growing, as well as her stamina and endurance.  She used to ask me to carry her by the time we reached the stop sign headed towards school.  She now walks all the way to school with her backpack on.  She runs home from school with boundless energy.

We made the right decision. 30 days. 1/2 inch. 3 pounds.

October 15, 2020 :: 5 years 4 months :: 38" :: 30 lbs

November 19, 2020 :: 5 years 5 months :: 38.5" :: 33 lbs

Introducing...Our Daisy!

Lydia joined Girl Scouts and is in a Daisy Troop with girls from the three kindergarten classes at school.  We have 15 girls in the troop, 2 awesome troop leaders and gobs of moms that signed up to be volunteers.  Our first meeting was November 9th.  We are supposed to go on a hay ride November 22nd, but COVID, so who knows.  I am so excited for this opportunity for Lydia to make new friends and form lasting friendships with girls in her troop.  I never crossed over from Brownies into Girl Scouts but I have a hunch this one might.  And here is our Amazing, Brave and Courageous Daisy!

Haunted Happenings

Lydia was Violet Parr from The Incredibles.

We made jack-o-lantern quesadillas and mummy hotdogs!

Dan and Lydia carved our pumpkin with power tools.

Every kid remembers October snow!

Just needed a little pick me up.

Making Halloween sugar cookies with Grandma!

Pajama day at school during spirit week.

A cold October walk to school.

Posing with the yard decorations.

Posing like Jo Jo Siwa!

Chiefs Cheese!

Collecting an early bowl of leaves.

Finding the perfect pumpkin for carving.

Flu Shots... remember that it's not all about you!

Flu shots protect you from the flu. They also protect the elderly, the immunocompromised, tiny babies, kids that are at risk for serious complications if they contract the flu, pregnant women, healthcare workers that need to stay healthy to help other people, people fighting really hard battles.  Get your flu shot like we did!

What you may need or want to know about growth hormone therapy.

Did you ever think I'd say these words?  "We started Lydia's Growth Hormone Therapy."  

It took many more tears, conversations, research and test results to get us there but we are.  We have learned a lot, spoken to many people and have been convinced daily of the benefits this will bring to Lydia. I've consulted with each of Lydia's specialists for their expertise on how this may impact the part of Lydia that they care about. I've consulted with Boston Children's Hospital and Children's Hospital of Philadelphia websites to absorb as much information and knowledge as I could. I've joined Facebook groups for parents. I've connected with the Magic Foundation and had long conversations with one of their members. I've talked to our insurance company, our prescription insurance company, many endocrine nurses, and more.

But most of all, we learned, we listened and we watched Lydia.  

Without growth hormone therapy:

• How long will she need to remain in a car seat?
• How long will she stumble to school because her book bag is too heavy for her?
• How long will parents on the playground ask if she's 3 years old?
• How long will she not have the muscle strength to balance and hop on one leg in PE?
• How long will she struggle to pedal her bike?
• How long will she not have the stamina for long walks?
• And when she's an adolescent...
• And when she's an adult...
• And...

Dan and I have chosen this for Lydia and we believe it will give her a better life now, in 5 years, when she's 15, 25 and into adulthood. Her deficiency is not going to change unless we help it. We want to explain our decision to those who want to listen. It's based in science. We don't want to defend our decision to those who don't want to listen.  We are living in the polarizing, trying, challenging, hybrid, masked Covid times with each of you.  I have a heavy weight knowing that some people may judge this decision and I'm asking for grace and understanding. I'm not sure I've asked for that so directly before. 

A couple weeks ago I went to pick Lydia up from school one day.  Here my darling girl came with a huge smile and a wave when she saw me.  She had on her backpack filled with not much but an ipad, still, too much for her to balance easily.  She was carrying her Johnny Appleseed hat she had made at school, so proud to show me.  A little boy and girl walked past us and made comments that I know were not intended to hurt.  They mentioned how small she is, that she looked like a 2 year old, like a baby and that they couldn't believe she is in kindergarten.  I answered them simply by saying she is 5 years old and in kindergarten.  I'm not sure Lydia was even paying attention to any of this.  As we walked home and I fought back tears I prayed it only hurt my heart and not hers.  This won't be the last time people comment on her size, but now we're doing something about it.

Be brave sweet girl.

Day One: October 15, 2020, 5 years & 4 months old, 38" tall

 

MAGIC's Motto:

Children have a short time to grow and a lifetime to live with those results ®

MAGIC Foundation is the global leader in endocrine health, advocacy, education, and support. Children fail to grow for a variety of reasons. Hormones, genetics, sleep, nutrition, general health and exercise are all factors for normal growth. If you suspect that your child is not growing normally, you are in the right place!  https://www.magicfoundation.org/

How GH Affects the Body Other Than Growth

In addition to growth, growth hormone regulates the metabolism.  As calories are consumed, growth hormone controls whether those calories are used to build bone, muscle and cartilage or stored as fat.  Between meals, growth hormone regulates mobilization of fat for use as energy.  Growth hormone deficiency is a condition that involves impaired linear growth and significant metabolic differences including changes in body composition (decreased bone mass, decreased lean mass and increased visceral adiposity) and lipid profile (elevated LDL cholesterol and triglycerides).  In children with growth hormone deficiency, growth hormone replacement therapy is important to normalize the metabolism and maximize these metabolic benefits.  If a child stops growth hormone prematurely, he/she will not be able to gain the benefits of maximal bone mineral accrual and lean body mass during his pubertal growth spurt and will have increased visceral adiposity and abnormal lipid profile; this can have a negative long-term impact on his/her bone and cardiovascular health.

Boston's Children Hospital Resources:

Overview

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency

Symptoms and Causes

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency/symptoms-and-causes

Testing and Diagnosis

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency/testing-and-diagnosis

Treatments 

http://www.childrenshospital.org/conditions-and-treatments/conditions/g/growth-hormone-deficiency/treatments

Welcome to Kindergarten, Lydia Rose!

Kindergarten has been great so far!  Lydia marched right in and ran right out, full of so many things to tell me.  She loves her teacher and tells me every at home learning day that it is better at school. 

At home learning with mom on Monday and Tuesday consists of letter, number and math worksheets, digital boom cards, online story time, sight words and reading, a zoom call and a specials class.  Lydia works at her desk and does PE in the living room.  Recess is spent walking the neighborhood, playing in the clubhouse parking lot or kicking the ball around in the driveway.  

Lydia and Dad do virtual school on Wednesdays which has a lot more online activity including 3 zoom calls with the whole class, one live specials class, and many online activities to complete. We are all pretty worn out by Wednesday night!

All in person learning starts October 5.  

16 days from the time of writing this.  

Who is counting?  I am!

 

Congratulations, Lydia!

A little painful to take out the button because she was upset and it always tugs a bit, but it is out.  

It is out for good! DONE.  

July 1, 2019 we started our feeding tube weaning journey.  October 1, 2020 we stopped using the feeding tube for food all together.  Lydia lost 5 pounds and regained 6 between October 1 and April 1.  

Way to go Lydia!  

It wasn't just eating orally, it was a mental switch and real education to learn how to eat, what foods and textures tasted and felt like, and new brain synapses to know she was hungry.  

Once again, Lydia is amazing.