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!