"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Saturday, October 31, 2009

This is...

Lilah has RED EYE!
Normally people HATE red eye in pictures...
The RED EYE means that her eye is reflecting light and she has vision...

Lilah's Vision Therapist performed another test on her Friday and ...
Lilah tracked a 10 in. by 10 in. lighted toy from 9 feet away.
(I got the tape measure out and had proof!!)

Friday, October 30, 2009

Just me and MY gal..

Wednesday night we went to Patchville at our church.
Aaron captured what melts my heart...
Lilah's smile!

Thank God for Lilah....what an amazing gift she is!

So...I know I am biased, but isn't that the BEST smile?

Wednesday, October 28, 2009

Trying to stand

The following two pictures are not the best pictures I have ever taken...
I put her up...and she stayed there for about a minute!
So....not the best "quality"
What she is doing is FANTASTIC!!!!!

Weight bearing on her FEET!


Tuesday, October 27, 2009

Surgery Soon...

Instead of paranoia...I have peace.
Instead of worrying like a crazy person...I have TRUST!
The Lord will watch over Lilah...as HE always does!
Lilah will be having surgery to have tubes placed in her ears...

Lilah is finishing another antibiotic for her 5th double ear infection.
Lilah is very hesitant to move on all fours. She gets scared when we stand her.
Lilah has problems with her vestibular system. Click HERE to read about the problems with balance and how the ears, vision, and such can affect this system.
THIS could be one of the main reasons Lilah doesn't want to go anywhere. She has 2 strikes against her...1, she's visually impaired, and 2, she has frequent, recurring double ear infections.
I will do ANYTHING for Lilah...for ALL of my children. If this will help her...LET'S DO IT!
I have faith in Dr. Oliver.(He is awesome!) But most importantly...I TRUST God!

PSALM 31:14 But I trust in you, O LORD; I say, "You are my God!"

Monday, October 26, 2009

No Comparison

Sometimes I just have to say...WHO CARES!
  • Who cares that Lilah doesn't crawl yet?
  • Who cares that Lilah isn't talking up a storm?
  • Who cares that Lilah isn't standing?
  • Who cares that the child that was born on the same day as Lilah is walking?
  • Who cares that Lilah is different?
  • Who cares that sometimes this world can be REALLY mean?
  • Who cares that Lilah looks a little different?
  • Who cares?

You know why I say "who cares?" Because I don't care and Christ doesn't care. All I see is a perfect child.

I love Lilah. Aaron loves Lilah. Alex, Sammie, and Eli love Lilah. God Loves Lilah.

THAT is ALL that matters!!

Sunday, October 25, 2009

11 Months Old!


Lilah is 11 months old!
Look at those eyes!

Do you see it?

For all of you that have followed from the very beginning...
You HAVE to see it!

The clarity, the pupils, the vibrant color, she's looking, that smile, that face, the LOVE, the joy!



What a celebration we have each day, but we will have a HUGE celebration when she turns 1!

Friday, October 23, 2009

For the LOVE of Lilah

Only the love of a special child could make me feel this way.
Each day I ask the Lord to bless you and keep you safe.
Every day I thank HIM from the bottom of my heart for trusting me to be your Mama.
Each day I look at you and am more amazed with how AWESOME God is.
I cannot believe you are my child.
YOU have taught me how to really love...unconditionally!
It doesn't matter if you cry, if you're up all night, if you never crawl, if you are legally blind, if you are so different, if you don't look like a "normal" child, if you are NOT what the world wants you to be, if you are not "perfect", if life isn't fair, if ....
I LOVE you....EXACTLY how you are.
I do not want you to be like anyone else. I want you, Lilah, to be YOU and ONLY YOU.
God has placed the most incredible gift in my hands...you.
I love every fiber of your being and NOTHING will ever change that. My love for you grows each second of each day. I sometimes wonder how much bigger can my heart get without exploding from all the love I feel for you.
Delilah Hope Sharp...you have changed me into a better woman, mother, wife, and child of God!

Thank you God for this perfect gift!
James 1:17Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows.

Thursday, October 22, 2009

A night in the ER

Poor Lilah wasn't getting better.
Poor Lilah couldn't breathe.
Poor Lilah had to have an x-ray.
Poor Lilah is STILL very sick.
This is so much for an almost 11 month old!

After several breathing treatments, an x-ray, and too long in the ER...
Lilah is now on MORE medication...Here is her daily medication list:
  • Lotemax
  • Trusopt
  • Pulmicort
  • Albuterol
  • Xoeponex
  • Singulair
  • Orapred
  • Ammoxicillin
  • Zithromax


After her ENT appointment today...

Lilah will be having tubes placed in two weeks.(This is the same ENT who did Sammie's surgery. I trust him and adore him!)

She is still very wheezy, she needs treatments round the clock, but there is HOPE in sight.

Lilah HATES to fall down, change positions, and be moved too quickly. Lilah has had so many ear infections that her vestibular system is having problems.

Balance is affected by your brain, your eyes, and your vestibular system. Lilah... being visually impaired and having many ear infections had two strikes against her. The tubes will drain the fluid behind her ear drums, help her sleep more soundly, and they will help her improve with her PT. Dr. Oliver said that there is a very good chance that Lilah will need repeat tubes and her adenoids out when she is about 18 months old. I am not quite prepared for that yet, and I know it does NOTHING for me to worry about something that hasn't happened yet, so....

I will focus on TODAY and getting Lilah 100% better before surgery in 2 weeks!

This Mama is focused...get her well, bleach the house, keep the kids healthy, and try to maintain sanity!

I look at my life as a journey...new adventures...in MOTHERHOOD...everyday!

Thanks for the constant prayers....

Lilah NEEDS them and we are so grateful for them!

Monday, October 19, 2009

VERY sick Lilah!!!

Poor Lilah.
After many days and nights of breathing treatments, a low grade fever, and extreme irritability...
The verdict is in...
Upper Respiratory Infection, Bronciolitis, and another double ear infection!
5th double ear infection in the last few months...
1 Rocefin shot, $50 co-pay(Eli is sick too), and $162 of meds (after co-pays) later
My gut was right...AGAIN
Lilah will be seeing Dr. Oliver on Thursday.(Same Dr who did Sammie's adenectomy and tonsillectomy)
Lilah will probably need tubes...ASAP!
We MUST protect her ears...they are her BEST sense.
I asked Dr. Cossio today about anesthesia, Lilah's cough, wheezing, etc....
Lilah must be 100% well before she is put under at all. The risk for her would be extreme respiratory distress. So...on to making her as healthy as possible!!

Because I WILL remain positive about ALL of this I MUST end this blog posting on a HIGH note!!
Check out these two photos I took of Lilah.
Do you see what I see???
Lilah is looking at her own reflection. I wondered why she liked Allison and Christian's floor SO much. NOW I know!!
All of our kids have Reactive Airway Disease and... Aaron and I have wanted laminate flooring(even though Allison and Christian's is real hardwood..we can't we have dogs and they DESTROY the real stuff) for SO long....if we happen to run into some money...I will be ripping ALL the carpet from my home...for the allergies and asthma kids....BUT also to watch Lilah STARE at herself.
It would be priceless on EVERY level!!!

Tuesday, October 13, 2009

In AWE of her!

Each day she gets stronger.

Each day she is better than the day before.

Each day I love her more and more.

God gave me the BEST gift when HE placed her with me.

Yesterday at PT Lilah was on all fours...for more than a minute!

She held a standing position (with weight bearing in her feet and her hands propped.)

Lilah looked me in the eyes and pushed with ALL of her might as this Mama praised her and encouraged her as she held each position longer and longer.
She didn't cry...not once.
She listened to me as I told her how awesome she is...how proud of her I am..and she looked me in the eye..and kept on.
Laura, her PT, said..."THAT was really hard work for her."
THIS Mama...is praising the Lord for Lilah and all she CAN do! I love her SO much!

Sunday, October 11, 2009

So much to say

First I want to apologize that I have not posted in a week. To say that I was busy sounds cold, but the truth is...I am always busy. There has been a lot going on in the Sharp Home. A snip it...

  • Lilah and I flew to MA Friday to see my sister,Allison, and her new baby, CJ. A surprise gift, for our Anniversary last month, from Aaron.(pics to come)
  • Our trip was great. Fast (50 hours), fun, and full of new adventures.(ex. Lilah ate a Cheeto..not healthy, but who cares for a child who is tactile defensive...yeehaw)
  • Lilah is rolling over both ways, sitting fully unsupported, reaching for toys on both sides, weight bearing through her feet, she doesn't scream the entire session anymore...Her PT said, "She has come a LONG way in a short month!" GO LILAH!!!
  • The Lortemax is working! Her eyes are clearing MORE! As Aaron says,"Lordemax is working!"
  • My friend, Rebekah, made Lilah a FABULOUS new patch.(I am in LOVE with it!)
  • My Best Friend, Tammie, had her baby. They did not know the sex until delivery...a healthy, baby girl...Natalie Renee' (Tammie and I shared a long cry about how perfect, healthy, and wonderful Natalie looked. I said, "Tam..she looks great. Her eyes...look great." To which Tammie broke down...and I cried too!)
  • I have been editing photos like crazy.(Trying my hand at my passion....got a shoot today)
  • We have an appointment to see Dr. Pearlman, neurologist, in November(Praying for no neurological problems)
  • Lilah has made some MAJOR improvements. THANK YOU GOD!

Isn't the patch AMAZING!!! It is the colors of Lilah's room...pink and brown. My FAVORITE part is the hot pink "L"
So MUCH to share...so little time...just enough to share the BEST!
Lilah CAN see.
On 2 separate occasions with her VT Lilah has done some AWESOME things
  • She is shifting gaze
  • Lilah reached for a toy about 3 feet away..HUGE for Lilah
  • She recognizes the VT's face and smiles

(as my friend, Neena, said "She can totally see. I'm not listening to those liars anymore!")

Yesterday Lilah kept her patch on for the entire 3 hours. WOOHOO!

Yesterday Lilah was nursing...she stopped, pulled away, looked me straight in the eyes and smiled the BIGGEST smile EVER!

This Mommy has cried MANY happy tears.

I am grateful for the pain, tears, grief, beauty, blessings, and miracles of the last 10 1/2 months.

Yes..I am.

I am GLAD for each tear I have shed...

The little things...to me.... are MASSIVE...

I love you, Lord, for all of my gifts.

Thank you for Lilah.

Thank you for the struggles.

Thank you for the brokenness.

I am a humbled, grateful, amazed servant who will SHOUT your name forever.

"Take my life and let it be, all for you...Glory to God, Glory to God, Glory to God....FOREVER!"

Friday, October 2, 2009

Leavin' on a jet plane

But I do know when I'll be back again!
About a month ago, Aaron surprised me with a great Anniversary present.
Lilah and I are flying this morning to MA to see my sister, her husband, and their 10 week old baby. I am the only one who has not seen CJ... and Allison and Christian's new home.
Aaron said that I needed a chance to get away from the house, the stress, the Doctor visits, PT, VT...all of it... for a few days. How awesome is that?!?!!!
So...Lilah and I will be spending the weekend with my sister in MA.
I am very excited for my trip, but it is bittersweet because I will miss Aaron, Alex, Sammie, and Eli VERY much.
This is a first for me...leaving my children...but I know that they are in GREAT hands with their Daddy. Aaron is SO happy to have the quality alone time with them. He is a fantastic father and loves them VERY much.
Thanks Aaron for the surprise! I love you...I will miss you and the kids dearly!
Look out MA....the miracle's a comin' !