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

Crazy, Rainy Day

A glimpse of what our day has been like ~

*They get their moves from their father. :)

Crazy day!  But good crazy.  

All 3 of the kids (and even the dog) had lots of energy and I must mention it rained pretty much all day. 

Lydia woke up and started cleaning out/organizing a corner of her closet.  She's been weeding out stuff for over a week now.  She's sticking with the idea of if it's not beautiful or useful it's GONE!  She's also been busy today with pedicures, eating, art projects, eating, folding laundry, eating, reading, completing grammar and math, eating, playing games, eating, reading to Sam, dancing, eating, etc.  She's had 3 meals and, at the minimum, 8 snacks today.  :)  

Nothing like getting a pedicure in your Star Wars boxer briefs! :)

So thankful for another good day.

The LORD your God is with you, 

he is mighty to save. 

He will take great delight in you, 

he will quiet you with his love, 

he will rejoice over you with singing.

Zephaniah 3:17

*Lydia's favorite verse at present

Walking Down Memory Lane...

Spent most of the day around the apartment.

Watched video footage from our American Girl Atlanta trip where we stayed at the Schafer B&B.  Our sweet friends Julie and Robert were such gracious hosts and their home was such a haven during a difficult time.  Hospitality is definitely an arm of their ministry and I thank God for their servants' hearts.   The staff at the American Girl store went above and beyond to make Lydia's day super special.

Snapshots at the American Girl Store ~ Oct. 2009

 We also watched Lydia's Make-A-Wish Disney vacation video.  Wow!  I was tired just watching it!  My precious little sister, Shelly, worked with the Make-A-Wish team to create a unique one-of-a-kind Disney experience for Lydia.  Shelly thought of everything, right down to the perfect stroller to rent!

 Snapshots from Lydia's Make-A-Wish Trip ~ Dec. 2009

Lydia and her Aunt Shelly

Luke proposed to Anastasia!

Spent some time walking down memory lane.
                   Also made some new memories today.

Lydia and Luke had a biscotti date at Starbuck's.  I was their chaperone who enjoyed watching the L&L combo sit in big comfy chairs and crunch on their treat of choice.  I thought for sure they'd choose the cake lolly pop delicacy, but no they unanimously choose biscotti.  Sure wish I had my camera to capture that sweet image of brother and sister.  Glad it's etched in my momma memory.

Willie and Lydia love to play games and sometimes create masterpieces while I whip up some vittles in our compact kitchen.  Usually Luke and Sam are playing super heros and making all kinds of scary sound effects.

I've been very reflective today... 

thinking about the past, wondering about the future, 

mostly seeking to find the joy in this day.  

Remembering His faithfulness in the past helps calm my anxiety concerning our unknown future, 

therefore freeing me to relish the gifts He gives me in the present.

Lydia continues to be able to walk on her own , though she tires quickly and stumbles often.  Her mood is joyful.  I can tell she's thinking up things to get busy doing, sometimes her sweet little frame just can't keep up with her plans.  She's still got the appetite of a lion.  After breakfast she's asking what's for lunch, after lunch she's inquiring about supper.... and plenty of snacking in-between!  Thankful the Decadron is helping to alleviate some of her balance and walking issues, thankful the side effects of the drug are minimal.  

Because of the LORD's great love we are not consumed, 
for his compassions never fail. They are new every morning; great is your faithfulness. 
I say to myself, "The LORD is my portion;

therefore I will wait for him."

Lamentations 3:22-24
(emphasis mine)

Heartfelt Gratitude

Thankful.....

Thankful we were able to attend Grace Bible Church and worship our Lord and Savior.

Thankful for sweet brothers and sisters in Christ who hugged us, encouraged us and reminded us we are being lifted in prayer today at church.

Thankful we ate wholesome food at Whole Foods for lunch. 

Thankful for provision for us to be able to buy groceries.

Thankful Lydia found a pair of shoes today!

Thankful for a Sunday afternoon nap on the sofa with my girl.

Thankful for a husband who plays with our children and helps put away groceries.

Thankful for a sunny day so Willie could take Luke and Lydia to the rock to burn some energy (wearing her new kicks, of course).

Thankful for a steak dinner at home tonight.

Thankful for a restful Lord's day.

Thankful for Jesus Christ who died on a cross to pay the ransom for my sins to make a way for me to go to heaven.

Thankful I can take refuge under His feathers.

Give thanks in ALL circumstances; for this is the will of God in Christ Jesus for you.

1 Thessalonians 5:18 (emphasis mine)

Saturday in the Nest

Thanks to Jesus!  Lydia slept until 7am!  Then she popped out of bed and immediately dressed for her breakfast date with her daddy.  Little lady on  a mission.  That's the way she's always been.  If she's got something on her mind she wastes no time dilly-dallying, she gets right to it!  And so this morning she was zeroed in on her daddy date.  The daddy/daughter duo was out the door in no time.

The boys and I hung out in our pajamas and it wasn't too long before all the byrds were back in the nest.  We spent most of the morning relaxing and just being together.

We went out for lunch and enjoyed a family favorite....Mexican food!  Next we went on a shoe hunt for Lydia.  Did a whole lotta searching, but never found any that would meet her specifications.  We gave up for today and headed back to our nest.  Spent the rest of the afternoon and evening resting.  And of course, eating.  The decadron makes her a little munchy.  On a side note...I think I have a sympathy decadron symptom ~ I find myself wanting to snack right along with her.

After dinner Lydia got dressed for  bed.
            
                            Her pajamas took me back to two years ago....

Sept. 2009

Sept. 2011

We had another good day, although different than 2 weeks ago (before she started showing signs of changes occurring).  She no longer walks when we go shopping, she rides in the stroller.  She's prone to tire quickly and speak a little slower than before.  I could easily let these signs pull me into a pit, but I am striving to keep my focus on Jesus and not on our circumstances.  Knowing He is with us every step of the way gives me strength.  Trusting Him gives rest to this momma-weary heart.

Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.

Matthew 11:29

Early to rise!

She was awake at 4am this morning.  Decadron tends to do that to her ~ conversations and movies in the wee hours of the day.  She's also been a little short with our pup, Zoe, which is totally not like her.  So needless to say, her 2 younger brothers were REALLY getting under her skin by 7:30.  So a sweet soul came by and whisked them away right before lunch, and Luke and Sam didn't reappear until late afternoon.

Lydia and I went out for lunch at Panera's today.  I relished having polite conversation over our meal and watching her enjoy her clam chowder and french baguette.  Afterwards we swung by the pottery studio to pick up the bowl she and her daddy painted last Sunday afternoon as her MRI treat.  (After every MRI we've made it a tradition for her to be able to choose a special outing or treat.)

Next, we did one of her favorite things in the whole, wide world....we went shopping.  We parused Barnes and Noble and TJ Maxx, two of our favorite places to scope.  We topped off our day with a mother/daughter nap on the sofa.

Thankful for another day and God's provision of just what we needed, the boys too.  They came home happy and dirty as could be.  I  could tell they'd had a great day.

She's letting her daddy sleep in her room with her tonight.  I've been camped out in there for 3 nights and he offered to take the air mattress for the team this night.  I overheard something about a daddy/daughter breakfast date over a sausage biscuit in the morning.

...I wonder if Hardee's is open at 4am?????

The LORD your God is in your midst, a mighty one who will save; 

he will rejoice over you with gladness; 

he will quiet you by his love; 

he will exult over you with loud singing.

Zephaniah 3:17

Oh, Happy Day!

What a gift this day has been!

Lydia had a fantastic night's sleep and awoke proclaiming how good she felt and how she really wanted to play today!  I helped her to the sofa and started about the day.  A few minutes later she yells, "Look Momma, I can walk today!!!!"  Overprotective momma that I am, I explained that I did not want her walking without my help.

So, she crawled.

So, I pulled out the vacuum to suck up the 1 inch thick layer of dog hair covering our floors.  Cleaning has not been priority lately.

I could not keep her down though.  A few minutes later I found her in her brothers' room walking back and forth from Sam's bed to Luke's bed as both brothers looked on and encouraged her.

What a sight to see the three of them so excited about her new strut!

Snip-it of her practicing her gait

Later in the day, we ventured over to see our sweet friends, the Voiles, a true blessing from the Lord. The children played the afternoon away while Kim and I filled the air with words for over 4 hours.  So thankful for the gift of friendship.

By the time we got back home Willie had prepared a delicious supper and we sat down and enjoyed a fine meal, good conversation and laughter.

Everyone's asleep now but me.
  
        I can't stop smiling ~ thinking about the gift of THIS DAY.

The Lord has done great things for us; we are glad.

Psalm 126:3