Starfish Swimming

Lydia takes swimming lessons at the Blue Valley Rec with Miss Courtney.  It's a parent and child swim class since Lydia has had limited experience in the water because of her trach.  

Now that the trach is gone we're going to jump on it!  

She is currently a Starfish but after next week she will be a Goldfish and going to swim lessons all on her own while Mom watches from the sidelines.  

Lydia prepping for lessons on Gma's phone.

Lydia after lessons in the car wash.  No crying, she just can't watch!

Riding my boat to the dentist!

Lydia had a dental visit in early July.  She loves the dentist, Dr. Parks.  

He has a really cool waiting room with a boat and a playhouse, complete with a slide.  

He also has video game stations set up.  

Nancy is Lydia's dental hygienist and she has just the right amount of sweetness and firmness to relate to Lydia and keep her in line.  Lydia always sits by herself in the chair knowing that she'll get more prize tokens that way.  When Nancy presented her with Disney princess toothbrush options I had to ask for some more "masculine/boy" toothbrushes.  Lydia picked Woody but not after carefully considering Buzz and Spiderman.  

Lydia's teeth are happy and healthy!  She even had her first x-rays taken.  Lydia walked away with a Woody toothbrush, toothpaste, flossers, a Spiderman sticker, a Royals sticker, two little monsters out of the prize machine and a big high five from Dr. Parks.

The Hunger Games of Tube Weaning!

On July 1, 2019 we started a tube wean. Lydia is still 100% dependent on her g-tube for feedings and medicine. A tube wean means withholding 1, 2, 3 or all 4 of her tube feedings and letting her eat orally. The first week we withheld a snack, the second week a snack and lunch, and now breakfast, snack and lunch. We are only tube feeding her dinner after she's eaten dinner orally.

Lydia's oral consumption of food has gone from less than 1/8 of a teaspoon a day to at least one meal's worth of food every single day. She's learning what it means to be hungry and that eating food makes the hunger go away. She's exploring more food than ever before and is not picky.

Over the course of three weeks Lydia did lose 5% of her body weight and we will need to stop the Hunger Games if she goes beyond 10%. When she does hit 10% we will hold steady and see if she can maintain that weight for about a week before adding tube feedings back. Then she'll have to gain by eating orally and take her meds orally. She also has to go several months with absolutely zero things through the g-tube before it can be removed. She's by no means there but she has taken great strides in just three weeks.

We are so proud of her and continue to be amazed! Everything revolves around food right now so here's a bunch pictures of Lydia eating!

#chdwarrior #tubie #22q11 #digeorge #hungergames #love4lydia

4th of July Week Recap in Pictures!

Dan and I returned from our camping and float trip and 

Lydia was ready to help with the laundry so she wore mom's bandannas.

On the 4th of July Lydia and I went to Heritage Park for a walk, 

to look at the blue herons and to play on the playground and swings. 

The rains came and we went to Mom and Dad's for lunch.  The second it stopped raining Lydia was outside in the pool and needed a water refill so she could squirt us all with her unicorn squirter.

That evening Dan and I had some neighbors over to light some "legal" fireworks. 

Lydia did not want anything to do with it and the headphones helped.  

She eventually became interested in snappers, smoke bombs and sparklers.  

Friday night the three of us went to the neighborhood school playground for some after dinner fun.

Saturday morning Lydia decided she would be a princess.  She wore her tiara until bedtime. 

We met Grandma at Stoll Park for some coffee and play time.  Lydia tackled some new adventures on the playground like the inside out climbing obstacle and the twisting ladder.  

Sunday we had some pool time with the puddle jumper, inter-tube and noodles.

Later that day we visited our friends, The Summers Family, and walked to a park for a picnic dinner and play time.  Lydia was a bit overwhelmed by the enormity of that playground but had some fun running about!  Unfortunately, we failed to get a group shot of the kids this year. 

Happy Birthday, month by month, year by year.

4 years old:
My sweet girl will wake up a 4 year old today. Over the past year she started preschool, graduated from speech therapy, and began gymnastics, karate and swimming lessons. Thankfully Lydia only had one surgery as a three year old, that's an improvement! She loves to be outside, help with the laundry, and fix food. Some of her favorite things are HyVee, The Beatles, her playhouse, dryer sheets, Anna-Elsa, and the orchestra. She has come so far in these short 4 years and I can't even begin to imagine what mountains she will climb in the future. She's my curious little sponge, always asking questions, asking me to spell words, memorizing the lyrics and sharing smiles all along the way. Happy Birthday Lydia Rose! Cheers!

3 years old:

Lydia Rose is turning 3 today! She is precious in every way, the sunshine in my day. She is the joy in my soul and the love of my life.  What a year my sweet girl has had. Lydia healed from her submucous cleft palate repair surgery. She started tiny tots gymnastics, passed her sleep study, and had her trach removed. Lydia graduated from the Home Vent Clinic, started speech therapy and Parents as Teachers, and visited a typical pediatrician for the very first time. We went to Sesame Street Live, took a Winter Solstice Luminary Walk, enrolled in Preschool, and then hid out for a couple months because of the measles. We took a trip to Colorado! She just aged out of Infant Toddler Services and now we prepare for Lydia to get her live vaccines and have her tonsil removed.  To use the words of Lydia Rose, “Happy Day!”

2 years old:

Two years ago, on a rainy Sunday morning, my sweet Lydia Rose was born at 3:49 am. She weighed 5 lbs 15 oz and was 20.25 inches long. She had a head full of brown hair that we thought might be kind of curly...little did we know!  Today, my darling girl is full of joy, happiness, life and smiles. She makes every single day better and brighter for me. She weighs 22 lbs 8 oz and is 31.5 inches long. And it goes without saying that what might be kind of curly hair is tightly twisted ringlets!  It's estimated that the cost of raising a child from birth to age 18 is $233,000. I added up all of Lydia's EOBs, not including home healthcare nursing, and so far she has spent $3,073,051.79 on medical expenses alone. Thank goodness for insurance and great employers. That doesn't even include diapers, her adorable outfits or her excessive hair bow collection.  She's priceless to me and her birthday is the happiest day of my life.

18 months old:

Lydia is 18 months old tomorrow, December 14th. She is amazing and we're the lucky ones because we get to be her parents. Lydia took her first three steps on Saturday evening and took four this evening. If we can string a few more along will be chasing her everywhere! Happy 18 months baby girl!

12 months old:

"She is delightfully chaotic; a beautiful mess. Loving her is a splendid adventure."  It's Lydia's first birthday! Lydia is 27.5 inches and 18 pounds.  Her strength and resilience amaze us every day. Some days were hard, some were harder, but most we found joy. You're the toughest kid we know and are excited for year 2. You got this girl!

11 months old:

"Always believe something wonderful is about to happen."  Lydia turned 11 months old a few days ago, but she'll never know we forgot to take pictures and post. Oops! We remembered a couple times but life was happening. We've been enjoying our little lady, listening to her make noises with her Passy valve, watching her wiggle and squirm, seeing how brave she is and how happy her smile makes us! Check out the blog for all the scoop, we've been busy!

10 months old:

"What I wanted most for my daughter was that she be able to soar confidently in her own sky, whatever that may be." — Helen Claes  Lydia is 10 months old...tomorrow...the 14th! How did that happen? 16 pounds 8 ounces, as of a week ago, and just over 26 inches! Our pictures are kind of a hot mess this month and nothing matches and we like it that way!

9 months old:

"Courage, sacrifice, determination, commitment, toughness, heart, talent, guts. That's what little girls are made of." ~Bethany Hamilton  9 months old today and almost 16 pounds and is 26 inches long!

8 months old:

Happy Valentine's Day!  Happy 8 months old Lydia!  Lydia is a happy camper...she's making all sorts of fun faces, trying to make noises around her trach, sitting up unsupported in short bursts, and rolling from belly to back and almost to belly again. Not sure we'll master that with the trach. She loves her exersaucer and her new floor pillow for naps.  Lydia has no clue we are approaching another surgery and I hope she forgets as soon as it's over on March 3rd. I'll be updating the blog in March if you want to follow her progress post-op.

7 months old:

"She leaves a little sparkle wherever she goes."  Tomorrow = 7 months old and growing! We are thrilled Lydia is over 14 pounds & 25 inches. The girl is all smiles!

6 months old:

"A baby is sunshine & moonbeams & more. Brightening your world as never before." Lydia turns 6 months old tomorrow - 6 months! I couldn't pick 1 or 2 or 3 photos, so you get the many faces of Lydia!

5 months old:

"I love you blue as the sky, tall as a tree, deep as the ocean, far as the moon, forever and ever!"  Lydia is 5 months old today! She is 23 inches long and 12 pounds. She's working on rolling over and sitting up, and our OT doesn't think she's too far behind. We're hearing lots of noises around her trach, which is a great sign. Come spring we can start talking about being decannulated!

4 months old:

"Daughters are another version of yourself, only better."  Lydia is 4 months old today! She's almost 23 inches long and weighs 10 lbs 14 oz. She is on the growth chart now! The hospital memories have faded a little, but almost weekly visits to CMH keep them fresh for now. She's so happy at home!

3 months old:

"Your daughter will hold your hand for a little while, but hold your heart for a lifetime."  Lydia is three months old today! She loves being home and is all smiles for us, though these pictures don't show it. A little grumpy for our photo shoot and gave a lot of stink eyes. It's been so fun to watch her personality blossom the last two weeks.

2 months old:

"I know a girl, she puts the color inside of my world." ~John Mayer  Our darling girl is two months old today! She has been through so much and fought so hard every step of the way. We didn't make our goal of being home by August, but we just may make it home by September.

1 month old:  

Our darling girl is one month old today! Such a big miracle in such a little girl! She has impressed us everyday and we hope to be home by the end of the month.