A page turner!

You never know where God will take you on your journey.

When Lilah was placed in my arms 13 months ago I would have NEVER thought I would be as strong, as trusting, and as confident in the Lord and HIS plan as I am today.

Recently, the Lord has revealed so much to me.

• I was able to help another Mom whose daughter has Peters Anomaly.
• We started some great new Christmas traditions putting God first(reading the Bible to the kids Christmas Eve about Christ's birth, the kids woke up Christmas morning to the kitchen decorated for a surprise party for Jesus....gorilla bread for the cake, and we sang Happy Birthday to Jesus)
• and I was asked if Lilah's story could be in a book.

My answer....

"Lilah is here for God's glory. Please share her story."

My friend, Deena, is writing a book about miracles.

Lilah has a part in the book...I read the rough draft already.

Got chill bumps???

I do!

Merry Christmas...EVERYONE!

We have So much to be thankful for this year!

Merry Christmas!

Love

The Sharp Family

Aaron, Katie, Alex, Sammie, Eli, and Lilah

MRI results...

On Friday, 12/18/09, Alex's 7th Birthday...

Many prayers were answered!

First...God answered my prayer and I was able to help another Mom...read post below!

THEN... Dr. Moretz called as we were all leaving Alex's Christmas Party at school.

She said, "Hi this is Dr. Moretz calling with the MRI results."

I looked at Aaron and gave him the "please keep the kids quiet so I can hear look."

She told me that first she wanted me to know that she thought things looked good, but the results came back with two notes.

First was a "problem with her ventricles" but Dr. Moretz said that she and the 2 other neurologists reviewed the scan and find it to be "technician error."

She said that the other finding was "an abnormally thin Corpus Callosum." She said I have seen these before and I want you to know that I don't think you have anything to worry about...

"Everything looks NORMAL to me!"

I LOST it!

I cried...and cried...and cried!

I told Dr. Moretz that this had been a VERY long year and that today was my oldest daughter's 7th birthday, and that having a child with special needs, especially a Visual Impairment so rare as Peters Anomaly and Sclerocornea, was a very lonely existence. I told her that I NEEDED this good news. I needed a Christmas miracle and THIS was the BEST gift I could have EVER asked for!

She said, "Have a VERY Merry Christmas!"

I hung up the phone and heard Alex ask, "Mommy ,why are you crying?"

I couldn't speak.

Again Alex asked, "Mommy, are they sad tears or happy tears?"

I said, "Alex...these are very, very, very Happy tears. Do you remember how Lilah had a test to see if her brain was okay?"

Alex said, "yes."

"The doctor just called and said that Lilah's brain is just fine." I said

Then Alex asked, "So God said she's okay and her brain is fine?'

I started to cry more and said, "yes, baby. God said her brain is fine."

I have told you all before, but I need you to really understand how VERY much Alex, Sammie, and Eli LOVE their baby sister. They pray for Lilah at EACH and EVERY meal and before bed EVERY night.

God has given us all a great gift...

Christmas came early for the Sharp Six!

THANK YOU GOD!

GOD works in AMAZING ways....

She found my blog....She found me on Facebook.....I am CRYING right now!!!!! TEARS of JOY for you Kristin. I am SO glad I could help you. God put me here to serve. Lilah has helped more people than we know. I cannot see through my TEARS right now...


Kristin's Status UPDATE from Facebook after seeing Dr. Lee for the FIRST time:



"YES!!! I have found a doctor that knows as much or more than me about Peters Anomaly!! He wants to keep her on the drops for a few more weeks because she has only been on her new drop Lotemax for a month. Because Coraline has vision in her left eye we don't want to rush surgery.

Now I didn't learn that much that I didn't know, but I trust this doctor and that's something I didn't have before with her last Corneal Specialist. So I'm happy and we will be back in Atlanta on Jan. 22 and on that appointment he will be able to tell us if he feels surgery is best. I'm trusting God and am thankful for my friend Katie and her blog that has helped me learn so much about Peters and Dr. Lee!!!"

Kristin,

God did this. NOT ME! HE knew what He was doing by placing Lilah with me. HE made me. HE knows that I am loud, a fighter, and NOT scared to tell it like it is. He knew That I would go to the ends of the earth for Lilah and that I LOVE helping and serving others. My goal in this life is to serve Christ. If helping you and Coraline find Dr. Lee is serving God, than I have done my job. I am HONORED and VERY emotional right now. I have such tears of joy for you! I cannot tell you how lonely and overly emotional I have been this past year with Lilah's condition. I am GRATEFUL that God has used Lilah, and me, in such a way. I am BEYOND blessed to be able to help you. KNOW. PLEASE know that I am SO touched that I could help. God works in the most AMAZING ways. I am ALWAYS here Kristin. ALWAYS! YOU will NEVER feel alone in this. NEVER. I may not be able to hug you physically, but I will hold your hand emotionally and walk with you as we battle this together! Thank God for the Internet and for allowing me to help you!

Katie

Did I mention she drove from Louisiana to see Dr. Lee in Georgia?

SEVEN!

Seven years ago today I became a Mother. So much changed that day. My world, my life, me...it all!

After 18 hours of labor, 3 and a half hours pushing, 3 and a half weeks early...

Alexandria Grace Sharp was born at 12:18pm on 12/18/02.

(not planned. After 3.5hrs pushing and a vacuum assist I didn't care about time)

Alex is my mini-me!

I could NOT ask for a better daughter.

• kind
• loving
• helpful
• teachable
• obedient
• thoughtful
• compassionate
• prayerful
• organized
• specific
• a tad picky, but a GREAT thing!
• honor roll student
• accelerated reader(school award)
• hysterical
• exciting
• loves
• needs
• gives
• serves

Happy 7th Birthday to the woman who has made me a better person.

I LOVE YOU ALEX!!!!

So....

I don't want to leave Lilah out...this IS her blog and all...

MRI results soon....

waiting on Dr. Moretz to call!

Gorgeous Gal with her touch light!

Overwhelming FEAR

Today will not be a cute post. Today I have minimal time and am still recovering, but I must put my pain away and face a bigger fear for Lilah today.

Today is the day. I have, quite honestly, DREADED more than I have let on.

Lilah is having her MRI this morning. Brain only with contrast.

Why do I dread it so?

• IV sedation
• TEST
• TRUTH

Did you catch that last one???? Today will reveal the truth about Lilah's brain.

Will is change how I feel for her? NO. NO. NO. Not a chance!!

I will love Lilah no matter the result. It is the truth that we will know if something besides her eyes is "wrong."

Maybe this is it.....

I have been on SUCH a long road with Lilah in a year. UPs, DOWNs, MIRACLES...

I have unwillingly let Satan creep in and control my fear...again.

Today I will pray louder than I have before. Not for God to change Lilah. No way. But, for my peace about whatever the outcome.

Lord,

I am here. I am humbly here. I have a broken body. My mind is all wrapped up in something you beg us not to take hold of. I am fearful today. Will the results of the MRI show that Lilah will be "developmentally delayed?" Lord, I love Lilah. YOU knew exactly what you were doing when you placed her with me. I love you Lord. Thank you for Lilah. She has taught me so much. Lord, I ask for your strength and your peace today. Only you can give me the peace I need to endure the outcome of the MRI. Only you can give me strength to carry Lilah with a broken belly. Lord, I am putting my trust and faith in you and your will for Lilah. You have the plan. I know that Lilah will be alright. If it is your will that something is not "normal" with her brain. I will trust you. I may not understand why, but I will trust you. If it is your will that Lilah has a "normal" functioning brain, than I will praise you even more. I will not stop thanking you for the miracles and gifts you have given me and this family. I am here to serve you with an obedient heart. I will serve you while I'm waiting. Thank you for holding Lilah in your arms and protecting her today. Thank you for holding me while I am weak today. I am grateful. I am trusting. I love you. Thank you!

OUCH!

I am VERY sorry for not blogging in over 19 days.

Life has taken some VERY strange turns in the past 19 days.

I will go back and fill you in on ALL the craziness REALLY soon.

BUT first....

I had an emergency this weekend. With four kids, illnesses are never welcome, timely or easy to take. Wednesday I was diagnosed with two large ovarian cysts. My pain increased, got worse, and intensified on my back.

Well....Friday I was in the ER....they sent me home to sleep in my own bed, with orders to return the next morning for more tests.

To my shock and amazement, I walked into the ER Saturday morning to find out I was having an emergency appendectomy. The nurse was taking my clothes off to put the IV in.(He blew 2 veins next to each other) I had to remind him that I was plenty capable to remove my own clothing!

WOW....it ALL happened SO fast!!!!

Aaron left the kids with our dear friend, Neena, and sped to the hospital to meet me. He got there in just enough time. The CAT scan the night before revealed simple appendicitis, but since my pain was still there and dull, the surgeon didn't want it to rupture.

Before Dr. Flanders did the surgery I asked him if the cysts were obvious would he take care of them. Because he was doing the surgery laproscopically he said no problem.

I gave Aaron a kiss, and was taken back to the OR, where I quickly fell asleep.

Only to be woken with severe abdominal pain and Aaron telling me that Dr. Flanders said the cysts were "HUGE."

Dr. Flanders drained the cysts and he said blood filled my abdomen. So he had to fill my belly with gas and clean my abdomen all out.

I was expecting to go home Saturday night, but my hemoglobin was so low from the blood I lost, that I had to stay over night. I was so worried about Lilah. She still nurses at night to go to sleep.

But gratefully Lilah, and all the kids, did great!

Me.....not so hot

my blown veins from the ER nurse

and I will spare you the photos of the suture that have come out!

So...no rest for this Mama.

Lilah has her MRI in 2 days!

I owe you several posts.....I'm working on it!!!

Cardiologist Visit

Today Lilah was seen by the Pediatric Cardiologist. Lilah, as normal, was amazing. She was patient, calm, understanding, and great during all the testing. She actually smiled during the EKG. Just see for yourself....

After the ECHO, the EKG, and the chest X-Ray the Dr. reviewed everything. He came in the room and told me that Lilah has a Patent Ductus Arteriosus. Her specific case is so minimal, so small, so itty bitty that he said there is nothing to worry about. He said overall she has a normal heart and that the "defect" is very common and NOTHING to worry about. He will re-check her in about 2 years.

THANK GOD!

***Up next......MRI on 12/16/09***

My Miracle is ONE!

Taken 11/25/08

Taken 11/25/09

What a year it has been. Today my emotions are all over the board. Today as I look back at the past year, I am overwhelmed at each moment. The birth, the news, the shock, the grief, the pain, the endless tears, the countless times on my knees in fervent prayer, the anointings, the new friends I have made, the road I have walked, the joy, the happiness, the fight and determination of Lilah, her strength, her courage...HER!



If I had the chance to change it, would I? NO WAY. Not for ALL the money in the world. I wear the pain, the grief, the sadness, and each tear as a badge of honor. Would I change Lilah? No. Would I wish that she was born different? No. Do I wish she could see more, better, etc? In part, yes, but to be honest...I know that God isn't done with her yet. I will not stop believing that He has great plans for her and HE will heal her. He already is. He has given her more than we could have EVER hoped for. She sees my face and smiles. I never thought that would happen, nor did I expect it. I am grateful for everything she is and everything she does. I do not care how long it takes her to crawl, stand, walk, run, jump, climb,etc. She WILL do those things. On her own time. She WILL do MORE than we ever dreamed she would do. She will change the world. She already has. God is guiding her. God is strengthening her. God is, and HAS, changed me so I could help her. So I could help my all of my children.

Today....

I am VERY grateful!

Thank you, Lord, for the birth of Delilah Hope Sharp!

Happy First Birthday Lilah!

I Love you with every fiber of my being.

Authentic

My friend, Lisa, tagged me as a True Authentic Mom. I am suppose to tell 5 things that make me authentic. Thank you for the honor. Coming from Lisa this is a great compliment! But first...

Let me tell you about Lisa...she is....kind, compassionate, UNDERSTANDING, unconditional, TALENTED, a teacher, a wife, a friend, a musician, artist, Gardner, has teachable spirit, builds me up when I am down, and helps people understand kids like ours more. Lisa, I could NOT have made it this past year without you. THANK YOU. THANK YOU! You have allowed me to be something I am not often allowed to be....myself! Thank you for telling me it was OK to think, feel, act, cry, love, weep, wail, laugh, giggle, and more ALL at the same time. I thank GOD for YOU. Being understood is one thing I CRAVE! Thanks for really understanding.


On to authentic me:

1. My closest friends call me Krazy Katie. There isn't much I won't do to get someone to laugh. (Hence my favorite movie quote, "Laughter through tears is my favorite emotion!") I LOVE to laugh!

2. I can get in and out of super Wal-Mart with a cart full of groceries and four kids in tow ...all in under 30 minutes. Speed Demon!

3. I have a necklace on my neck that has my cross AND ring words, "Peace", "Hope", Faith", and "Grace"(My girls middle names. The peace was given by a dear friend and prayer warrior Patti) This necklace is tarnished and is heavy, but I will NOT take it off. Lilah plays and teethes on this necklace several times a day. I wear it for it holds several sentimental values to me!

4. I haven't slept 8 hours in 7 years. I have been pregnant and/or nursing for 8 years. I am officially tired. BUT I would NOT change a single second of the last 8 years.

5. I grow more in love with my husband and children each and everyday.

So, now I am suppose to tag 5 more True Authentic Moms. I tag Katie, Jennifer, Mandy, Neena, and Carrie.

Birthday Party Fun!

Lilah's First Birthday Party...

Here are some of my favorite shots!

An old friend found me on Facebook and suggested that I use her friend to make Lilah's cake. Well, we came to an agreement. I took family pictures of her family and she made Lilah's cake(S), cupcakes, and cookies too. The cookies were specialized with Lilah's initials. Keylee Morgan did a GREAT job on Lilah's cake. THANK YOU!

Lilah's smash cake
Lilah's cake and cupcakes! HOPE!

"Mommy, this is yummy!"

"What part do I dig into first?"

That's right, Lilah, go all out baby!

SWEET!

Mommy and the messy birthday girl!

(I love this!)

The dress my friend, Brandi, made. She makes and sells dresses. Click HERE to view her website!

My friend, Laurie, gave Lilah this awesome frame. It matches her room perfectly!

Lilah's Loot!

Each guest really thought about Lilah when they gave her gifts. She received textured gifts, lighted toys, a great touch and feel bible, and more. My mother-in-law and brother-in-law gave Lilah the missing piece from her room. Her name on her wall. Isn't it GORGEOUS?!?!!

My friend, Carrie, gave Lilah a My pet violet. THIS is AWESOME! You hook the pet up to the Internet and choose your child's name. Lilah, correct spelling and all, just so happened to be in the list! The pet talks to Lilah. Teaches her to spell her name."Hi Lilah. L.I.L.A.H."Sings songs with her name in it and asks her to give it a hug and come here.

I am SO amazed that each person really thought about Lilah and her needs. Aaron and I didn't want anyone to bring gifts. We just wanted a celebration of Lilah, her life, and all that she has taught us. I am so touched by the time people spent in getting something that wasn't just a gift.

As Lilah's actual First Birthday approaches...I am filled with more emotions than I could ever express. I cannot begin to thank you ALL for your outpouring of LOVE, support, and prayers for Lilah...and for me. This journey has not been easy, BUT I would walk through this valley again and again to be exactly where I am right now.

God is so, very, very good!

Self-feeding

This questions was asked, "Can Lilah self-feed?"

She's not perfect(who is?) but yes, she is at the beginning stages of self-feeding.

Did you catch that?

What about the curls?

I am grateful for improvements!

• we don't care how little the improvements may be
• ALL we care about is that she IS improving

As we say in this house..."Go Lilah, Go Lilah, Go Lilah!"

A smile is not just a smile!

This morning I had a meeting with Lilah's Vision Therapist, Marsha; the parent coordinator for Babies Can't Wait, Dawn; and my Georgia Pines representative, Joey.

Dawn was here for Lilah's 6 month follow-up, to add OT, and to talk about goals for the next six months.

Dawn began by talking about what our goals were six months ago...

• Lilah to reach out and grab a toy for herself
• For Lilah to play with a toy alone
• To smile at me ..to see my face

Lilah....was sitting next to me doing ALL of those things!

I could NOT hold back the tears.

You just don't know where you are, unless you know where you've come from.

Lilah,

YOU have come a LONG way!

YOU melt my heart each time you smile at me.

I thank the LORD for you; my special gift from above!

I love you Lilah...all the way up to the moon...and BACK!

WATCH this smile. She's smiling at me. She sees me. She REALLY can...and for THAT...

I AM GRATEFUL!

Speechless

Yesterday I received a phone call that brought me to my knees.

In full on weeping, wailing, crying hysterics.

I am at a loss for words.

My church called yesterday.

For those who have followed this blog from the beginning, the middle, or even in the last few months know that Aaron and I have been STRUGGLING to get our van to work properly. Electrical problems, transmission leaks, power steering leaks, alternator changes, belt changes, tune-ups galore....oh the list goes on and on. We have...Aaron and his Dad have....tried everything they can think of (they have put many engines in many cars) and STILL the van has given us weekly troubles. We have not had a reliable vehicle to take the kids in, to drive Lilah to appointments, to take Lilah to her specialist in Atlanta. We have piled 6 people into a 5 person 90 Bronco. All along just happy to be together and glad for something...anything...that works and gets us from A to B.

Yesterday someone....

Some angel, self-less, giving, considerate, AMAZING family...

has donated a van to the church...

AND...

our church has chosen our family to be the recipient.

I could NOT believe it!

This could NOT have come at a better time.

• More Doctors visits
• More therapy
• More driving
• More stress
• More go, go, go

NOW....

No worries on HOW to get there.

To the family who is giving such a GREAT gift...

YOU are changing my life! YOU are giving me PEACE about the safety of my children in my vehicle. YOU are helping me beyond words. PEACE is something I pray for daily. PEACE is something I have attained in the last two months for I KNOW that the Lord is ALWAYS with me. The ONLY thing I can say, even though it is NOT enough is...

THANK YOU!

THIS gift. This....is God giving to us through YOU!

GRATEFUL for my brothers and sisters in Christ who selflessly give to others!

Neurology Consultation

Today Lilah had her consultation with Savannah Neurology. Dr. Katherine Moretz was wonderful. She checked Lilah over. We discussed Lilah's medical history. She asked me why we were there. I told her that Lilah's PT, Laura, noticed that she would get quiet and "go away." Laura wanted to make sure that Lilah doesn't have any neurological problems that would prevent her from progressing.

Dr. Moretz talked to us about Peters patients.(Lilah has Peters Anomaly in her right eye) She handed us an emedicine study about Peters patients that is 9 pages long. Peters patients can have "developmental delays, congenital heart disease, structural defects of the neurologic system, spinal defects, genitourinary abnormalities, external ear abnormalities, hearing loss, cleft lip and palate, and short stature."

So....

Dr. Moretz has ordered an MRI(Diagnosis: Transient Alteration of Awareness, Lack of coordination, delayed milestones, ophthalmology abnormality), an EEG(to test her brain function), a Cardiologist referral(diagnosis: transient alteration of awareness, lack of coordination, and delayed milestones), and OT-occupational therapy (diagnosis: lack of coordination and delayed milestones.)

I will not lie and say that I was not taken aback by the long list of referrals. Honestly....I came home and cried while Eli and Lilah napped.

On the one hand I am So, utterly grateful to be having all of these tests done to see what is really going on with Lilah.

On the other hand I am so, very sad that she is almost a year, and we are JUST now doing these tests.

I am overwhelmed with emotions right now because of SO many things in my life.

PLEASE NOTE: This blog is MY way of coping, dealing, expressing, getting it out and praying! The POSITIVE comments from those that follow the blog warm my soul so much. (If you don't like the content don't read. Please refrain from leaving mean, negative, nasty, hurtful comments. I will delete them anyway. No matter how many times you type them!) There are times...MORE times than NOT...that I do NOT want to talk about it. I want to blog about it. CRY. WEEP. WAIL. Talking on the phone and in person is sometimes WAY too painful. I am sorry to all of my family who feels that I don't tell you personally. I just can't sometimes. Repeating the story over, and over, and over again is emotionally draining and I am already so drained. I am sorry that you do not understand why I can't or don't call. I am surviving. I don't JUST have Lilah, and her condition, and her therapy. I have 3 other children, a house to run, and a family to keep healthy and happy. Please understand...or at LEAST respect my wishes... to allow me to not call. You are still getting the information. I just can't tell each person every detail. I am spent. Besides...I DO have four kids to take care of and I do not want to ignore them to tell the 45 minute story individually. My first ministry is my family... The family in MY four walls. I LOVE YOU ALL. I am grateful for you all. But...I process and deal with things the best way I know how. The best way I can so I don't shrivel and die. I must fight, I must survive, I must press on. I pray that through this you will understand me more. Thank you!

The scary part of the information she gave us, and why Dr. Moretz wanted the cardiologist referral, was reading "Mortality may be increased because of other systemic involvement, especially cardiac anomalies."

I am going to TRUST that the Lord has a plan for ALL of this. I LOVE Lilah. No matter what.

I will ALWAYS love her. I know that the Lord has her safely in HIS grip!

Please pray with us for good results from all of the tests Lilah will have done soon. Thank you!

JEREMIAH 29:11 "For I know the plans I have for you," declares the LORD, "plans to prosper you and not harm you, plans to give you hope and a future."

CHANGE

After much prayer... AND some NASTY comments left...I have made the family blog private. I am sorry to those who read both of the blogs daily. I am sorry for those who want to stay in the know about our family. Please know that I use my blogs as a means to inspire, tell the truth, and vent my own emotions. If you have been a loyal reader, and positive commenter, then please send me an email and I will invite you to the Sharp Family blog. I knew that Christians were persecuted in other countries, but to have it happen here in the USA has made me even more determined to tell the truth about Christ on Lilah's blog. I am grateful for the MIRACLE of Lilah and the awesome power, love, grace, mercy, and peace of our Heavenly Father.

Yummy!

For SO LONG Lilah would refuse foods with texture.

She was SO frightened to try puffs, cheerios,etc.

BUT....

as determined a woman that I am...I did NOT give up!

Take a look and see what she ate for lunch today!

Peaches, Green Beans, Puffs, Carrots, and Sweet peas!

Did you catch Eli's sweet voice?

How about Lilah's hair?!! Her hair has grown SO much that when it is unruly it stands up!

By the way...Lilah had a GREAT visit with Laura, her PT, today. Little Lilah Bird is pulling that hiney up and showing the VERY early signs of crawling.

UP NEXT....

Neurologist Appointment this coming Monday.

Praying that she doesn't have any neurological issues and that we rule out one more thing!

I HAD to share this!!!!

This morning Lilah is doing something without us moving her hands for her, placing her feet, or changing her position. When she finished she was so happy for herself that she clapped!

Go Lilah!

Lilah's PT, Laura, would be VERY pleased!

A new day

For the moment ...Lilah is breathing clear!

I am grateful for all the veterans today who have served and sacrificed so we can be free.

Thank you to the men and women serving today so we can continue to have rights!

And VERY close to home....thank you for the families here at home who sacrifice many months without their loved ones.

MSB...Happy Birthday...I LOVE YOU!!!!

Sick...AGAIN!

I haven't blogged in a while because Lilah has been SICK!

The tubes are letting all this nasty fluid out and it is draining in her lungs.

As you can tell from the videos...she is wheezing so, very much.

I have done breathing treatments on her every 15 minutes for DAYS!

Take a listen...(press pause on the music on your right to hear)but be sure to pay attention to how she is responding to items and more of her environment. She is moving out of sitting more and amazes me daily!

She's still happy.

Yesterday, I took Lilah back tot he ENT and he gave Lilah some more meds.

Her regime now is...

• Augmentin
• Atarax
• Motrin
• Pulmicort-breathing treatment
• Albuterol-breathing treatment
• Singulair
• Ciprodex-ear drops
• Lotemax
• Truspot
• Axid

Well....I never finished my nursing degree...guess I know why...I am one at home!

On a side note...the van died...again... but as Aaron and I were pushing the van off the road Lilah smiled at me through the tinted window. Now THAT is GREAT news! More vision...more sight...more miracles!

Like I say ALL the time....who cares about the car...Lilah's getting more sight each day!

I WILL remain ever trusting, hopeful, and JOYFUL for the miracles the Lord is giving!

Curls and Pearls

Almost One...over two weeks away.

I have been trying to capture just the right picture to show her lovely locks!

I think that this PERFECT!

Curls and Pearls....

ooh la la, Lilah!

Operation Tubes

Lilah is the best baby...ever.

I know ALL parents say that of their children, but she is so patient... it is crazy!

We put Lilah in the car at 6:45am to head to drop the kids off and go to Memorial Hospital.

Lilah didn't cry at all, and she hadn't been nursed or had anything to drink since 12:30... over six hours earlier.

She played happily in the car.
and she snuggled, giggled, and played in the pre-op room

Then she took a long nap after to get the anesthesia drugs out of her system.



THEN....



the REAL fun began.



Lilah was in such a GREAT mood that I decided to do a photo shoot for her First Birthday Party Invitations.



She was a TOTAL ham!!!!



This is a preview...and is going on my website!

Isn't she DARLING?

I have taken a VERY large leap of faith and taken my LOVE and passion of photographing to try to earn some money to help make our ends meet.

Gratefully...I am loving it, meeting some wonderful people, helping my family, and telling Lilah's story ALL along the way.

God gave Lilah to me for a reason. Lilah has strengthened my faith, my confidence, my ability to talk openly and honestly about the Lord and HIS amazing power, and she has helped me find myself again and do things I would've never had the courage to do before.

Surgery Tomorrrow

No specifics yet on time.

The hospital called and gave me some brief instructions.

Actually the call lasted 40 minutes and.... I am grateful I trust in the Lord because if I didn't I would drive myself nuts over ALL the questions they asked and why.

Lilah's medical history was given....her diagnosis in both eyes. Her meds. Her age.

AND...

I got a chance to tell the nurse on the phone ALL about Lilah's miracle and God's goodness!

I am at SUCH peace about this surgery. I am at SUCH a GREAT place.

I have walked through the valley...but my Lord, my shepherd, HE has been with me ALL along. HE has never left me. HE has not walked away, ignored me, abandoned me(like most people), HE has been with me through ALL of this.

I am asking for your prayers for Lilah to come out of anesthesia, for the tubes to be placed correctly, and for there to be no damage to her ear drums. I pray that this surgery helps her feel confident, not be so afraid of loud noises, fast movements, and for the ear infections to stop.

(This Mama sure needs more than 4 hours sleep each night!)

Thanks so much!

This is...

A MIRACLE!!!

Lilah has RED EYE!

Normally people HATE red eye in pictures...

NOT ME!!

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!!)

GOD IS SO GOOD!!!!

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?

Trying to stand

The following two pictures are not the best pictures I have ever taken...

BUT....

I put her up...and she stayed there for about a minute!

So....not the best "quality"

But

What she is doing is FANTASTIC!!!!!

Weight bearing on her FEET!

GO LILAH!

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...

Nov.4th.

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!"

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!!

11 Months Old!

Today....

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!

MY GOD IS AN AWESOME GOD!

PRAISE THE LORD!

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

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.

Lilah,

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.

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

AND...

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!

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!!!

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!

GO LILAH GO!!

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!"

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' !

How 'bout that!

This morning Lilah's Vision Therapist came for Lilah's weekly session. Normally she comes to the house on Friday mornings, but this week is different because Lilah and I will be going on an adventure Friday morning.(More about that tomorrow!)

It was a normal morning with breakfast, getting kids dressed, making them do their chores, making beds, and we headed out the door on time. Well, my car decided to shut off on me 8 times while dropping the girls off at their schools.(yes, they go to two different schools) I managed to restart the car, drift into parking lots, restart the car again, drift into Alex's school, the van shut off twice while I was in the drop off lane. The best part was it cut off as the teacher was getting her out of the car. Oh well...I got it to start again! Only to have it shut off again as I drifted into the neighborhood. Oh the joys of having an old van with issues.

So, when Marsha, the VT, arrived today I was a little frustrated with my van, but we were safe and home...no worries. I opened the door with Lilah on my hip and Eli at my feet. Lilah looked Marsha in the face and smiled. THAT was a first!

As Marsha played with Lilah we noticed that Lilah really liked her flowery shirt she had on. (White with many red flowers) Marsha said, "Her left eye looks really clear today."

"Really?" I said ...playing dumb because I saw it, but...I wanted to see if SHE saw it, "Which one do you think is her left?" Stupid question to ask the VT, but I wanted to make SURE it wasn't JUST me!

"This one," she said pointing to her left eye. "I even think her right eye looks more blue today."

"ME TOO!" I exclaimed

"Its only been a few days, "she said.

"I know...Five days since we saw you...the new drops are REALLY working." I said as I thanked the Lord silently in my mind.

Marsha kept working with Lilah, still noticing more and more changes...she said she's following this toy from a farther distance. I nodded...because I knew she was right. Then Marsha decided to try something.

She took a toy in one hand and another in her other hand.(Neither one of these made noises) She had a Sunflower in her right hand and a yellow duck in her left hand. First she shook the flower, then she shook the duck. Marsha said with excitement, "LOOK...SHE'S SHIFTING GAZE!"

I said, "What's that mean?"

Marsha said, "She sees more than we think she does!"

So.... who cares if my van is on its last leg, if I am car-less, and crazy.......MY BABY CAN SEE!

My God is an AWESOME GOD!

A MIRACLE

Tonight we witnessed a MIRACLE!

Lilah was in the tub for her nightly bath...which she loves.

The kids usually bathe together. Lilah loves to play in the water with her brother and sisters.

Tonight, Alex and Sammie decided to take a shower. Eli and Lilah were in the tub.

When Eli decided he was done...Lilah was alone in the tub.(obviously I was right beside the tub)

She was sitting very strong, kicking her feet to make the water move...as usual.

THEN....it happened.

She began to pat the water..and stop and she watched the ripples!

She was SO excited. She has NEVER done this before!!

She was playing drums in the water...it was fantastic!!!!

I got so excited I called Aaron...asked him to go get my camera (hence the photos)

And she kept splashing.

THEN....

The best part happened.


We had just cleaned up the toys from Eli....then we decided to put some back in....and waited

Normally we hand Lilah the red "H" you see.

Normally she drops it and cannot "see" it to get it back.


We noticed her getting excited...so we waited...

What we saw next made us scream out of joy!!!


Lilah watched the toys and knew what she wanted.

She grabbed this green toy ALL by herself.

She watched it, waited, and leaned over and picked it up.

THIS is a miracle!

She saw it!

We know she did!

Miracles happen...Lilah is proof!

Many of us take for granted the small things in life...

NOT in this house....we celebrate them..each and every one!

Peace

Psalm 120:6Too long have I lived among those who hate peace

I have worried for so long about whether or not I was making the right choices for Lilah. I remember asking Dr. Devaro at one of our first few visits with him if I should take Lilah to other places in the country. New York, California, Florida...anywhere. I remember telling him that all we wanted was the best for Lilah and we would go to the end of the earth for her. Dr. Devaro said, "I want you in Atlanta because when she gets Glaucoma she needs to be seen by the best and Emory has the best Glaucoma facility in the country." Read that again. He didn't say "if she gets Glaucoma"...he said "when." Glaucoma is the biggest side effect of the Congenital Cornea Opacity diagnosis. I remember Devaro telling us that when a child is diagnosed with bilateral opacities they do the best with transplants. He said if one eye gets clear naturally and the other is opaque, the transplant isn't as successful. He said that the naturally more clear "good" eye would have to be patched for 8 hours a day so that the transplanted eye could get vision and eventually all the patching over the original good eye would cause vision loss in that eye. Then the transplanted eye would never be 100% free of rejection. (Success rate on corneal transplants is 10-20%) If the eye rejects the transplant then you'd try another, and another, and another....then maybe artificial implants until they either take, glaucoma sets in, retina fails, optic nerve fails, and total blindness occurs.

Dr. Lee and Dr. Greenberg confirmed all of that information.

Lilah has never had a severe case of Peters. (there are some very serious cases ...bulges out of the eyes...some I just cannot imagine) Now we know Lilah has Peters in the right eye and Sclerocornea in the left. We have been told that Sclerocornea patients do not transplant well. Lilah's left eye is clearing faster with the steroid drops. The right eye is slower, but still healing.

So many opinions are out there on corneal opacities. So many schools of thought. So much information is out there. We could drive ourselves crazy, torture Lilah with countless surgeries, procedures, Doctor visits, plane rides, car rides, more time away from the other three kids, more time away as a family. All to end up with the same result Vision Impaired...or "worse" Lilah could be Totally Blind from Glaucoma and/or surgery complications. Everything has risks. Surgery, Drops, No Drops, No Surgery. We are not uneducated parents. We have thought about this every moment of everyday for the past 10 months. We must, as her parents....the people who love her the most other than God...make the best decision we can for her. We must weigh our options carefully...yet always praying, hoping, and knowing if the Lord decides to heal her miraculously or by medical means then she will be healed. Lilah will see someday. I just do not know whether it will be here on this earth or the first time she meets Jesus face to face.

We will never give up trying and fighting for Lilah to see. We also want Lilah to have an amazing quality of life. We do not want Lilah to dislike herself because we are always trying to fix her. We want Lilah to be a confident woman with whatever sight she may or may not have.

This blog.... No, its not a blog. It is not a website. It is honesty. It is my space. My territory. It is my journal. It is where I am the most free, the most liberated, the most transparent...the most me. I have gotten so much healing from this. I am expressing my emotions, my fear, my worries, my stress, my good days, my great days, my prayers, my mind....my heart...my HOPE.

I am letting the world into my private place so that I may help, encourage, share, heal, give my testimony of faith and tell of the wonders of life believing in and trusting fully my Lord.

I will have some bad days. I am allowed those. But, I have hit the bottom and been so broken only to be restored in Christ knowing fully that I am at peace with my decisions for Lilah!


Job 22:21"Submit to God and be at peace with him; in this way prosperity will come to you.


Psalm 29:11The LORD gives strength to his people; the LORD blesses his people with peace.

Proverbs 3:17Her ways are pleasant ways, and all her paths are peace.

Proverbs 14:30A heart at peace gives life to the body, but envy rots the bones.

Ecclesiastes 3:8a time to love and a time to hate, a time for war and a time for peace.

I get my strength from the Lord and I am at peace.

10 Months Old

10 months ago today...

Lilah entered this world. She has been more of a blessing than I could have ever imagined. Everyday she teaches me more and more about life, family, HOPE, faith and LOVE.

I love you beyond measure.

THANK GOD for LILAH!