Update on Friday's (9-16-11) Appointment with Dr. Gold

  

Starbucks!

Last Friday Lydia had an appointment with Dr. Gold.
We made our way to Chapel Hill the evening before.
Had to make a stop by one of our favorite places before we headed out of town.

This truck was parked right beside us. :)

  ✔ snacks
✔ water
  ✔ movies
  ✔ blanket

Getting ready to order her biscotti

Lydia resting the night before at the Ronald McDonald House

Lydia getting her vital signs done by Cindy.
Cindy makes going to the doctor ⓕʊℕ!

Dr. Gold's ɕɼɐʐʏ socks!

No new news, just reassurance.  Playing doctor, nurse and momma had me second guessing myself at times ~ wondering if I was making too much out of nothing or at the other extreme of overlooking something that needed urgent attention.

There is a fine line between being alert and being anxious.

I am striving to be an effective care taker of His child.

Dr. Gold examined her as well as Dr. Gershon, a pediatric neurologist.  Both agreed to continue steroid (decadron) tapering.  The decadron has been given to help with the swelling brought on by the inflammation of these unknown spots in her cerebellum.  Her next MRI is Oct. 11th.  This will be a more specialized MRI to perhaps better identify the new developing, unknown spots in her cerebellum.  It is thought that the spots are a result from radiation damage....either scar tissue or new tumors.  

Preparing to enter
the
spa pod!

Video of Lydia in the pod

The Spa Pod
Complete with massage, thermal, light, aroma and music therapy

Enjoying her treat!

Momma taking a turn

After her appointment we made our way to Greenville to my sweet little sister's home.  We enjoyed an afternoon and evening visiting with friends and family.  Wish I would have taken the time to snap pics of all the sweet faces we got to see.  I guess I was too consumed with simply enjoying their company ~ not a bad thing.  Sometimes I prefer to simply sit back and capture the moment in my heart, instead of capturing it on film ~ I'm not so good at multitasking these two.  Here's a few pics...

Lydia and Claire

Karen and Luke Congleton

The girls making bracelets

Sherry and Stacey

Lydia and Farrah

Thankful for knowledgeable and caring health professionals. 

Thankful for sweet fellowship and a great cloud of encouragers throughout this trial.

Thankful Lydia has continued to have a spirit of joy in the midst of challenges.

Do not be anxious about anything, but in everything by prayer and  supplication with thanksgiving let your requests be made known to God.  

Philippians 4:6

The Nomads are Packing Up Again

Spent the day inside.  The boys entertained themselves with imaginary play while Lydia and I did some packing and organizing.

We will be moving soon to another apartment just a few buildings over that better suits our family.  The new place has an open layout and is more private with no one above or below us.  It is also closer to the big rock that the kids love!  We've got a little over 3 weeks before it will be ready, so we started the packing process today.  Lydia looks forward to having a new room and decorating it.

With all of our moves lately (3 moves in less than 3 years with 3 kids) it reminds me how this earth is just a temporary dwelling and that our forever home is being prepared for us.  

In my Father's house are many rooms. If it were not so, would I have told you that I go to prepare a place for you?  And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also.

John 14:2-3

Something very comforting 

             in knowing that if she departs to our forever home before I do

                          He promised that He has prepared a special place for His child.  

Another comforting thought for me is this...

You have made my days a few handbreadths, and my lifetime is as nothing before you. Surely all mankind stands as a mere breath!

Psalm 39:5

This is all so temporary and this life is nothing compared to eternity!   I so wish I could pan out from our circumstances at this time to see His story.  His perspective.    Knowing He has written every day before time even began and that NOTHING takes Him by surprise brings indescribable peace to my soul.  Knowing He has purpose in all of this hard stuff gives me strength.  When I take my eyes off of Jesus I get anxious and fearful.   When I mediate on His promises I am quieted by His love.  

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Romans 8:18

After a busy couple of days, sleep trumps blogging.

Great Wolf Lodge wore us all out.
Worth it though.

So rejuvenating to get away.

So thankful for sweet fellowship with friends.


*Lydia and I will be traveling to Chapel Hill friday to see Dr. Gold.


"Worry does not empty tomorrow of its sorrow; it empties today of its strength." 
— Corrie Ten Boom

Favorite Spots

Went to a couple of our favorite spots today.

⤴⤵⤶⤷⤹⤾⤶

Whole Foods

and 

the Children's Museum

Spotted a couple of super heros outside the grocery store

Pumpkins and mums already?

Sam ordering his usual pepperoni pizza slice

This is our regular spot

Love this booster step in the bathroom at Whole Foods
(it's the little things)

Willie's got his hands full walking to the museum

⊗  ⊗  ⊗  ⊗  ⊗

The train ride...

Doing what she loves

As I was explaining to Luke that the faucet was sensor activated~
He says,"Yea! It's like the force on Star Wars." :)

little byrds perched outside our nest

She seemed a bit weaker today.  

Hoping a good night's rest will give her more energy for tomorrow.  

Thankful to be able to get out and do things together as a family.

You keep him in perfect peace

whose mind is stayed on You,

because he trusts in You.

Isaiah 26:3

Daddy Byrd's Birthday!

Today we celebrated Willie's birthday!

cupcakes from Petite Sweets

the party venue

some of his favorite things

our homemade birthday card

his favorite verse

Luke's contribution

♥ reading his  birthday love note ♥

sweeter than buttercream icing

Sam loves a cupcake!

pArTy FaCe!

Willie's Birthday Song

Lydia has had another fine day.  Every day is such a gift.  

So happy we could all be together for another birthday celebration.

She came to me this afternoon and shared with me her new favorite verse....

For where your treasure is, 

there your heart will be also.

 Matthew 6:21

So I inquired, "What is your treasure, what do you treasure most?"

She responded, "God".

So glad He has given her a heart for eternity.

Blip-it Blog

Quick post tonight.  My main squeeze has a birthday tomorrow and I'm gotta save my "what-little-I-have" brain power to write him a love note tonight.

Thankful for another good day.

The kids and I spent most of the day working on a craft for Willie's birthday present.  The girl loves a project.  Luke helped some too, but his piece de resistance was a Star Wars picture he colored especially for him.  Sam submitted a hand print and cut some of the edges of our mega-card we made for him.  (I was NOT happy when I found his cutting contribution ~ but I had to forgive him b/c the Lord has forgiven me for many things. mercy)

She and I did a little shopping tonight to find some soft cotton dresses to accommodate the decadron distention belly.  After trying on umpteen of them, we came home with 3.  Success finally.  It is hard finding cute age-appropriate clothes these days!

Now she's snuggled in her warm little bed as I'm reflecting on this day.

Be kind to one another, tenderhearted, forgiving one another, 

as God in Christ forgave you.

Ephesians 4:32


(verse that came to mind when I saw Sam's cutting-edge art)

Hump Day Update

Lydia's legs seemed a bit weaker when she first got up this morning.  After a little while though her walking improved.  I decided maybe it was because she slept until almost 8am and with her being flat that long, it could have increased her intracranial pressure a smidgen more.  That's the problem...with my nursing experience I know just enough to get me thinking too hard sometimes.

We did decrease her night time dose of Decadron to 1mg last night.  She initially was dosed 4mg twice a day for 48 hours, then was on 2mg twice a day.  So, now she's taking Decadron 2mg in the morning and 1mg at night.

Dr. Gold ordered  Prilosec right from the get-go and it really has helped prevent GI upset.  I remember 2 years ago when she was on Decadron she would cry all the time because her stomach was hurting.  Thankful for the stomach protection!

She continues to have a voracious appetite.  She wanted a pizza for snack today, and ate half of it!

She hasn't been as playful compared to yesterday, but still has an upbeat attitude.  We were able to homeschool a little today.  Lydia is a self motivated learner and completes her tasks quickly.  Her handwriting has changed.  Trying to be creative to keep her engaged in learning, instead of discouraged because of the changes her body is enduring.

When Willie got home I went out for a little while.  I swung by Sears to look for some cotton dresses for Lydia since her pants and skirts irritate her sweet expanding belly.  Didn't buy any, but found some cute comfy church shoes instead.  After shopping I drove out to Mechanicsville to pick up my grain for making bread.  It was nice to be alone in the truck and have a little praise and worship ~ just me and Him.

Came home and was attacked at the door by 2 sweet, smiling little boys!  Getting out for a couple of hours felt like a mini vacation.  I should do that at least once a week.  Felt like I had taken a deep breath and released a boatload of tension.

You are my hiding place; 

you will protect me from trouble 

and surround me with songs of deliverance. 

Psalm 32:7