We become what our children need us to be.

“You’re now in a secret world. You’ll see things you never imagined: ignorance, rudeness and discrimination. But you’ll also witness so many everyday miracles, and you’ll know it. You won’t think a milestone is just a milestone, you’ll know it’s a miracle and be present in that moment. You’ll treasure things most wouldn’t think twice about. You’ll become an advocate, an educator, a specialist and a therapist, but most of all, you’ll be a mom to the most wonderful child.” — Geraldine Renton

This was shared by the wife of a very good friend of mine from college. They have a beautiful daughter that they advocate for, educate on and specialize in.  We become what our children need us to be.

Doctors Galore: Plastic Surgery

Thursday, June 15
Surgery Clinic

Dr. Goldstein, Plastics

Done.  Like nothing ever happened.  Dr. Goldstein let me hold the light and look in her mouth to get a good luck.  It's amazing how different it is in there.  I didn't realize just how split and open her soft palate was until seeing what he reconstructed.  I'm really surprised there was enough of Lydia to stretch out and do what he did.  We won't need to go back until November.  

Lydia has been tasting all soft foods.  As you can see below, we have yogurt, icecream, pudding and applesauce.  There is now no medical reason she can't eat, it's in her mind and it's up to her.  We're going to start introducing all of her snacks again and get this show on the road!  Last night she painted her face in blue birthday cake icecream and chocolate pudding.

Scrumptious Snacks Deliverd

Look what you did?  

You donated all these snacks to the 

Ronald McDonald Family Room at CMH. 

 Over 2,000 individually wrapped snacks for families to enjoy while their children are in the hospital. 

Thank you so very much for your generosity! 

We took the snacks to the RM Family Room yesterday, on Lydia's birthday.  It took 3 of us to get all the snacks, loaded into wagons, up to the Family Room.  Then we piled them high and took photos of Lydia smack in the middle.  She loved every second of it and even pushed the wagons around.  Lydia had never been in the Family Room which is hard to imagine since I've been so many times.  It was nice to make our first trip to the hospital as a family to do something other than see a doctor.

Now, what will our project be for her 3rd birthday?

Doctors Galore: 22q11 clinic visit

Wednesday, June 7
22q11 Clinic Visit

Audiology - Lydia wouldn't sit still long enough to get her hearing checked very well.  We'll try again in 6 months and don't anticipate any problems.  And, she's not as waxy as she used to be.  :-)

Dr. Arganbright, ENT - Lydia's ears, nose and throat are super duper.  So super duper that we need to get that trach out already.  Jill, how I will refer to Dr. Arganbright because her name is long and because she's so cool I can just call her Jill.  Jill is still hopeful to decannulate late this summer or very early fall.

Dr. Felt, Endocrine - All good.  She's small, we knew that.  We'll keep waiting to see if she stays proportional and on the growth chart.  I once again reminded them that I am the tallest female on either side of Lydia's blood related families.  I'm not a giant, I'm 5'3".  They somehow have it in their minds that she will be 5'5".  Whatever.

Dr. Cocjin, GI - He's so funny, Lydia thinks so too.  He is happy with her diet and her pooping. ;-)  He upsized our Mic-Key button since Lydia's belly is growing, but gave the new one to me to put in so that he and Lydia could remain friends.  Doctors let moms tick their kids off instead of them, if at all possible.

Dr. Raje, Immunology - Ugh.  Still no live vaccines, so varicella, MMR and rotavirus.  We are waiting on one T Cell count to rise.  It's been rising, just not enough.  They want her to be at 300 and she's at 192.  At 200 they will begin to consider vaccines for kids who aren't sick often, so Lydia can be considered at 200.  Cross our fingers for November or December.

Dr. Shah, Cardiology - Lydia's ticker checks out nice!  She was great during her echo and fell asleep at the very end.  Dr. Shah is still pleased with all the repairs and we are still watching a few spots...a few spots that we will forever be watching because Lydia's heart is repaired, it's never normal.  She is cleared for annual cardiology visits...annual!  Wuhoo!

And here is documentation of what happens when they lock you in an exam room for 8 hours! :-)

 

Doctors Galore: Pulmonology

Tuesday, June 6
Sleep Clinic

Dr. Escobar, Pulmonologist

All is good in the world according to Lydia's Lungs.  Sleep study is scheduled for September 27th and we are on a same day cancellation wait list so that we can hopefully have it done sooner.

 

This is how we travel, syringes loaded, don't mess with us.  We're gonna eat!

A Roasterie drive thru on SW Blvd. on the way to CMH.  Amen!

Lydia tried to steal some kids crayons so she got her own coloring book when he had a meltdown.

Cabinets under the exam table are the best.

See, enough room for all of me!

That's a wrap!  Let's go to the library, Mom!

Antioch, your current kit was a hit!

Had to test out the magna tiles since Grandma and Grandpa bought her some for her birthday.

Happy Birthday, Darling Girl.

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 and and so far she has spent $3,073,051.79 on medical expenses alone...thank goodness for insurance.  That doesn't even include diapers, her adorable outfits or her excessive hair bow habits.  She's priceless to me and her birthday is the happiest day of my life. 

Party People!

The birthday girl anxiously awaiting her party!

It was a family affair!

  

Smash Cake Take Two, still no interest.

  

 

Candid Party Shots!  

Abby Cadabby's Coloring Pages, Bert & Ernie's Sidewalk Chalk, 

Cookie Monster Toss, Pin the Nose on the Elmo, Big Bird's Bubbles 

   

 

 

Look at this Two Year Old!