Friday, December 18, 2020
Do you need a cookie supplier?
Wednesday, December 16, 2020
Growth Hormone Therapy: December
We began growth hormone therapy on Thursday, October 15.
She is tired and will sleep in past 7, sometimes even til 8 on the weekend.
She is hungry and will eat from 3:30pm to 7:30pm if you let her.
She is growing and is getting noticeably heavier. She's gone up a shoe size.
We are now at 5 weeks or 30 days of shots.
Poke. Push. Wait for the click. Count to six. Done. Repeat 6 days a week.
I know she's wearing masks to school, doing Daisies outside and attending virtual dance class, so the likelihood of getting a cold is less, but she is physically stronger and seems healthier. It's hard to put my finger on it but last school year she would have already been on her 2nd or 3rd cold. The cold that lingered from October to March or April. This year, only one, and one that she overcame in about a week rather than the typical two it used to take her. I'm not sure this has anything to do with growth hormone therapy but I'm counting it as a blessing.
We made the right decision. 60 days. 1 inch. ::3.3 pounds.
October 15, 2020 :: 5 years 4 months :: 38" :: 30 lbs
November 19, 2020 :: 5 years 5 months :: 38.5" :: 32 lbs (corrected)
December 14, 2020 :: 5 years 6 months :: 39" :: 33.3 lbs
Thursday, December 10, 2020
Would you like to swing on a star...
Lydia Rose.
She's been asking for a swing since her birthday, at least.
It's been delivered...in parts and pieces...that Papa and Daddy had to put together.
What fun is a gift if it's not a project too!?!
Wednesday, December 2, 2020
Happy Thanksgiving from our bubble to yours!
Parade - eh, at least they tried.
Weather - eh, I like cold holidays.
Dinner - eh, oh wait, delicious.
Thankful for my brave girl.
Thankful for my loving family.
Thankful for my village of friends.
Thankful for my awesome job and team.
Thankful for being able to connect with everyone on Thanksgiving.
Friday, November 20, 2020
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
Wednesday, November 18, 2020
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!
Sunday, November 8, 2020
Haunted Happenings
Thursday, November 5, 2020
Flu Shots... remember that it's not all about you!
Sunday, October 18, 2020
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
Sunday, September 27, 2020
Welcome to Kindergarten, Lydia Rose!
Inside Out: Lydia's Version
Anxiety - yep, about most things. Envy - uh huh, and wondering why she's different. (scars, treatments, growth hormone shots, CPAP, IE...
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I stayed home with Lydia for three straight days to potty train. We then sent her to preschool for two days and MaMa & PaPa's for ...
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Yay Lydia!!! Lydia is out of surgery and out of recovery. They repaired the subaortic stenosis and she did not need a valve replacement. Tha...
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For all of 9 years we've mostly been able to help Lydia, or allow her medical professionals to help her , with medical intervention. Su...