Miss Lydia Rose: June 2019

Friday, June 21, 2019

Valley View ELC made Lydia feel super special on her 4th birthday. She got a party hat, had her picture taken with a cake and banner, and the class sang to her. Lydia took a bag of gummy worms to share with her friends at lunch time. Her choice. :-)

Thursday, June 13, 2019

Lydia's 1st Haircut...well, 1st not done by mom.

Lydia's first haircut that wasn't done by me! I thought it was time for professional layers instead of my wannabe skills. I've given her many haircuts over the last 4 years and I even trimmed a little more when we got home that night. Curly hair is so forgiving, at least for now.

BEFORE

DURING

WHO KNOWS

TA DA!

Monday, June 10, 2019

22q11 Clinic Visit Update

Height: 35.5 inches
Weight: 28 lbs 7 oz

Ear, Nose, Throat: Dr. Arganbright was on downtown on call instead of at clinic. Disappointing. She's our favorite. We saw Bridget instead. She was not overly concerned with the number of colds and ear infections Lydia had January through April this year. Lydia's right ear tube was out of place and the left was still in place. They cleaned out wax, removed the right tube and will see us in 6 months. We'll do a hearing test then, talk about how Lydia has done with one tube out to see if we need a new on or can just go without. They may need to scope and check for regrowth of her adenoids. Lydia is a mouth breather and can't breathe easily through her nose, even after the T&A procedure last year. She's going to continue to take Zyrtec, restart the Singulair and begin using Flonase.

Endocrine: We saw Terri Luetjen, APRN. She was not happy with Lydia's growth or lack of growth. Her height isn't on the chart and is pretty linear right now. Lydia's BMI is good. We're hoping for a growth spurt over the summer to get us back where we need to be. That coupled with hopefully easier breathing will allow Lydia to gain and grow. Lydia will continue to have her calcium, thyroid and IGF-1 checked annually. All are in the normal range but we will continue to monitor growth due to the increase chance that Lydia will be small in stature due to the 22q11 deletion. Lydia's labs came back with a low iron reading so she is anemic and we'll start her on a new multi-vitamin with iron. I so hope this doesn't constipate her!

Immunology: We saw Brenda Snyder, APRN. She was not overly concerned with Lydia's illnesses over the winter and deemed the amount pretty ordinary for a typical kid. Lydia's labs show that her T-cells have doubled! Wuhoo!

Gastroenterology: Dr. Cocjin wasn't there. Sad. We're continuing on with the normal med routine to keep her gut relaxed and moving. GI=all about the poop.

Speech: The 22q11 speech therapist, Brenda, was happy with Lydia's progress and thought she was doing well. Over the next year or two we will continue to listen for hyponasality in her speech. That can be related to her palate, adenoids, etc. If it continues and doesn't improve, there is a procedure but I want a procedure free 2019.

Please, could this be the year of no surgeries for Lydia?

This is how Lydia is entertained from 10am to 4pm at CMH. Poor girl. We ended the day with labs and she was a tough poke. Had to try 3 times to get all they needed. She peed on me. That is all.

Cardiology Check Up

In short:

Lydia has a congenital heart disease: IAA type B, VSD, s/p repair; h/o hypo-plastic LVOT s/p Konno; follow up in 12 months, no restrictions.

A few more words:

Lydia clinically has done well from a cardiac standpoint. Today and echo-cardiogram was completed. The results are very similar compared to the study in 2018. Normal left ventricular chamber size. VSD patch bulges in the right ventricle. No evidence of significant obstruction. Mild accelerated flow across the aortic valve (peak 10-15 mmHg) without significant outflow tract or valve stenosis. Gradient decreased from 18 mmHg in 2018. Trivial aortic valve insufficiency. Lydia has strong upper and lower peripheral pulses. At this time I do not believe she requires any activity restrictions. I recommend a return cardiology clinic appointment in 1 year. Please allow patient to carry a water bottle and take necessary restroom breaks.

My interpretation:

Lydia's heart checked out the same as last year with slightly lower gradients, which is good. No heart meds, no restrictions, check up in a year. There are two things that worry me. They don't keep me up at night with worry but I know we are watching them. Are we watching them until we need to intervene? Maybe. Maybe not. I can't predict that and a doctor won't answer that any more clearly. These words aren't perfect in heart speak but for now they are good, not bad for the short term. "VSD patch bulges in the right ventricle. No evidence of significant obstruction. Trivial aortic valve insufficiency."

Lydia's Experience:

Lydia did so well at her cardio check up. No tears. She helped put the stickers on and clip the sensors for her EKG. She also rocked her echo, lying on a bed in a dark room while someone rubbed jelly and a sonogram camera on her chest. She said the jelly was grape and there were crocodiles on the ceiling. We listened to the Beatles.

Tuesday, June 4, 2019

Rowdy Lydia Riggs

In an attempt to show me the butterfly in the Hungry Caterpillar book

Lydia took a spill and her head met the bedroom wall.

It's a pretty good size dent in the wall and an equally impressive knot on her head.

CHD Babies 2019 Run for LITTLE Hearts

What a beautiful morning for race day! Thank you for everyone who has supported us during this race each year, during hospital stays, during surgeries. We are blessed to have you! Our annual cardiology appointment is Wednesday. #love4lydia #heartmom #henrysheart #chdaware