Miss Lydia Rose

Thursday, February 4, 2021

Indoor Camping

We set up camp for days...

made the backdrop, collected the supplies, found every pillow and blanket in the house.

Lydia made lanterns and we used the grease splatter screen over a flashlight for stars.

S'MORES!!!

Goodnight.

Lydia got shelter from the tent.

Dad and I were left out under the stars!

Tuesday, January 19, 2021

Growth Hormone Therapy: January 2021

We began growth hormone therapy on Thursday, October 15, 2020.

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

We had our first official follow up with Dr. Feldt and Endocrinology this afternoon. Lydia was excited to show off how strong she is and how much she's grown. She even told Dr. Feldt all about the snacks she ate on the way to the appointment and how many Pringles she eats. He was very happy with her growth and please to hear things are going well.

Lydia asked everyone we encountered if they were going to poke her and then she shook her finger at them and said no pokes. That part makes me sad that she anticipates it, but she talked them out of the blood pressure cuff...again. She's the ultimate hospital negotiator. She asked if she was going to get a toy today and the answer was no but she did walk away with 5 Incredibles 2 stickers. Winning.

Lydia is just on the cusp of being on the weight growth chart and trending upward toward the height growth chart. This is big news! She hasn't been on either for years. Her growth velocity for height is predicting 3 plus inches of growth this year and she's almost halfway in under 4 months. We are playing catch up right now and trying to make up for lost time when she wasn't producing growth hormone. Now that her body is responding we are going to keep giving it what it needs for a year or more and then hope to level her off to a steady growth pattern through puberty.

A child with no medical things going on would be predicted to hit the 50 to 75 percentile of their growth chart based on their parents' heights. Lydia would be predicted to be 5'6". Since Lydia has 22q11 that prediction drops to the 10 to 25 percentile of their growth chart, so her height prediction is more like 5'2" or 5'3". That is where we are trying to get. We can't change Lydia's DNA, she has a predetermined height built into her genes, our goal is to get her there!

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

November 19, 2020 :: 5 years 5 months :: Home Measurements :: 38.5" :: 32 lbs

December 14, 2020 :: 5 years 6 months :: Home Measurements :: 39" :: 33.3 lbs

January 19, 2021 :: 5 years 7 months :: Clinic Measurements :: 39.25" :: 34.2 lbs

Overall Growth in roughly 95 days. 1.25 inches :: 4.2 pounds :: TONS of MUSCLE

Saturday, January 9, 2021

Want to see what"growing markers" look like?

You may think growth hormone therapy looks like this:

Really, it looks like this:

We get a device filled with medicine that we administer over the course of a week. Lydia calls this her growing marker. It has to be stored in the refrigerator until opened, and we get four at a time. We have a supply of needles which are very tiny, alcohol wipes, and biohazard container for the sharps.

When administering the injection, we dial up the dose, and it's just a button that you push until the clicking stops, we then wait 5 seconds and remove it. For a short while Lydia got really good at taking her shots, but then it started to cross her a lot of distress and anxiety. One night I decided to wait until after she was asleep and I administered it without her even flinching. We want her to be fully aware of what's going on and so I talked to her about doing these after she was asleep she was very surprised that I had done it and said she didn't feel anything. So that is our new course of action.

Friday, January 1, 2021

May 2021 Be Kind To You

We rang in the new year at 8pm in the streets of Symphony Hills!

Our neighbors joined us for celebration, cheer and Auld Lang Syne. These are the people we've spent the last 9 months with, waving, smiling, helping each other out, gathering around fire pits in drive ways. It takes a village, especially in 2020, and we are so glad we have them all.

Happy New Year to YOU and YOURS and OURS...Amy, Heather, Bill, Pat, Rhonda, Amanda, Kevin, Aimee, Chad, Gaby, Silbu, Alex, Hilori, Amanda, Kenny, Kelly and Brian and all the kids!