"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

Thursday, April 30, 2009

"I can't believe this..."

"This is UNBELIEVABLE!!
Every time I see you, she has gotten better and better."
Lilah has continued to improve and her eyes are getting stronger each day. Dr. Lee said that her left eye has continued to clear even more and is "near perfect." He said her sight may not be normal, but she will get vision from the left eye. Lilah's right eye still has some peripheral cloudiness, but is definitely clearer. He is not sure whether he will do surgery on her right eye. He said that sometimes surgery is not the right answer.
Her pressures were great!!(11,14)
He wants me to stop the FML drops, and only continue with the Trusopt(pressure)drops. Scott, Dr. Lee's assistant, walked us out and said, "He wants to see you in 6-8 weeks. That means she's getting better because he's giving you more time in between visits."
Dr. Lee said, "You don't know how lucky you are" to have not had the transplant surgery. He told us that we bypassed many times of anesthesia and many transplants.
"I am SO happy for you guys!"
Dr. W. Barry Lee

Today the Lord answered more of our prayers. More of YOUR prayers!!! What an AMAZING, Great GOD we serve.

Thank you! Thank YOU! Thank you!!! YOUR prayers and faith in our Lord are the reason this miracle is occurring.

FOREVER.....I will be eternally grateful to the Lord above ....and all of you!


Tuesday, April 28, 2009

You've come a LONG way baby!!!

I am AMAZED!!!!
I am with Lilah ALL the time. I do not notice the change in her eyes like other people.
I have been getting comments about how great her eyes are looking. I wanted to show you
HOW FAR SHE HAS COME
The 2 pictures below were taken 3 months apart.

Taken 1/18/09


Taken 4/17/09
I cannot begin to tell you how this feels. I cannot begin to tell of how GRATEFUL I am that God has heard my prayers. My Faith has been tested, been shaken, but has really grown so much. I am in awe of how great our God is. I KNOW that he is not done with Lilah. I have the strongest FAITH that she will be healed.




THURSDAY April 30th We take Lilah back to see Dr. Lee. This visit will be the FIRST visit where I have NOT been scared. I TRUST that she will get a "WOW" from him. I am at so much peace! I serve a GREAT GOD!!!!
I know that if I ask and if I TRUST in HIM to do all things, HE WILL, because HE CAN!
I pray that Lilah will not only have vision. I pray that Lilah will see colors, shapes, depth, height....THE WORLD.
Lilah was given to me to help me grow and to help me lead others. I have been through the valley, but my Savior was with me the entire time. My baby WILL see. I KNOW IT!
YOUR prayers and YOUR faith in our LORD have helped to create this miracle.
A REAL MIRACLE!

Saturday, April 25, 2009

Five Months Old Today!

Lilah is five months old today.
We had a photo shoot to celebrate the occasion.








My BEAUTIFUL little girl!!



Support

I am reaching out.


I am asking for help.

Not financial help. Not physical help.

I have tried to do this alone for 5 months. I need to find other people like me. I need a community.

The Bible says to be a part of a "community." Yes, we are called to surround ourselves with other believers to help us grow in our walk with the Lord. I have a great community of believers. I attend an amazing church. My small group is my family.

What I need help with is this:

I need a support group of women, Moms,etc. whose children are like Lilah. I know each child with a disability is different. Lilah's condition is rare. I know that her condition could be worse. What I need is to be able to ask questions, get feedback, and be able to vent to those who can relate. I need this type of community.

Sometimes I feel alone in this. My friends and family who have babies,or are about to, cannot understand some of my thoughts and emotions. I see the look in their eyes. I don't want or need pity. What I need is people who live in Holland.

Please help me. Please tell me I am not alone and I don't have to be. Please tell me that somewhere out there is someone that I can say exactly how I feel without being told, "Katie, be grateful."


I AM grateful. I am learning, each day, to love Holland more and more. I try, each day, not to envy Italy.

To Lisa.....THANK YOU!

Friday, April 24, 2009

Just a little tired

Lilah really likes the Jumparoo we are borrowing from a friend.
THANK YOU!
She likes it so much that she jumps herself to sleep quite frequently.
This is what she looked like this morning before I took Alex to school.

I think she had a little too much fun!!

Wednesday, April 22, 2009

Our Bond

Me and Lilah
I share a very unique bond with each of one my children. This bond can never be broken. This bond an never be duplicated. My bond with Lilah is unlike the bond I have with the other three.
Our Bond consists of:
  • Long periods of nursing
  • Holding hands...more like Lilah's hand wrapped around my finger
  • We laugh and giggle together
  • Lilah will cry and can't see me coming, but when I touch her...she immediately calms down
  • Lilah can spot my voice over a room full of people
  • Whether or not she can see my face completely...Lilah SEES me more than most people
  • Lilah is more relaxed, comfortable, and at ease with me
  • Unlike most babies who smile when Mommy enters a room, Lilah does not....but if I breathe loud, cough, or make a sound... she is at peace.

The bond between Mother and Child is unlike any bond. The bond I share with Lilah is one remarkable, God-given miracle that I am eternally grateful for. I have been told many times, and by many people, that "God chooses parents for children before they are born."God chose me for Lilah.

God chose Lilah for me!

Saturday, April 18, 2009

Hope....in two little bottles

Lilah's eye drops


Awesome Anonymous Gift

THANK YOU!!!

Tonight at my amazing church I was given a gift. This is not a normal gift. For the over-stressed, over-tired, over-worried, over-giving Mommy of four.....This is a blessing!!!!

Someone passed this gift to one person who passed it to me. So secretive. (I love it)

Let me tell you what this gift entails......
  • massage
  • facial
  • manicure
  • pedicure
  • scrub
  • lunch....alone in quiet....without begging my kids to eat their food

5 HOURS AT A SPA!!!!!!!!!!!!

Who did this? Who knew that I needed someone to pamper me? Who knew that I give everything I have to my family? (I was given money for my birthday to buy a new outfit.... I bought groceries instead.) The person who thought this much of me just knew that I would spend money on my family. I would never do something for myself...unless I was made to.

I cannot wait to go to the spa!

THANK YOU

THANK YOU

THANK YOU!!!!

Thursday, April 16, 2009

Gifts from friends

From Amy A.
Amy made this beautiful quilt blanket for Lilah. There is so much detail to it. (I actually have so many pictures of it.) She knew we are Ga Bulldog fans. She used the red to help improve Lilah's vision. She put great thought and time into each piece. She used "paws" in the stitching. I LOVE this quilt. I will never part with it!



From Alyson Harris

My friend Alyson Harris, from my MOPS group, made me these awesome earrings. As you can see from the photo, I do not take them off. I have worn them so much that they are in need of polishing. (Alyson is actually a GREAT artist who does paintings and such too. Google her and see her work if you are interested!!)


****I have not gotten ANY thank you notes out since Lilah's birth.(VERY unlike me!) People have been so amazing with all that they have done for us. I cannot begin to thank everyone enough. I sure hope that everyone knows that I am so grateful!*********

Monday, April 13, 2009

New "bling"

On Tuesday Lilah became one of the girls.
I have been waiting.... Waiting in case she had to have surgery. Waiting in case she had to have specific tests done. Waiting.....for what reason I don't know.
THE WAIT IS OVER.
Lilah had her ears pierced last week.
Yes, she cried. BUT, this was symbolic in many ways:
If Lilah hadn't been born with a disability I would've pierced them ASAP
My other girls have their ears pierced
I didn't want Lilah to feel left out or different
Lilah will not have transplant surgery on her left eye
Lilah deserves for me...and everyone else.... to treat her as normal as possible
Oh yeah, and her straps are decorated with Georgia Bulldog "G" flare.

Friday, April 10, 2009

Lilah "talking"

video

To hear her better....

Scroll down to the play list on your right and pause the song.

Lilah is telling a GREAT story. The best one minute pick me up!!!

ENJOY!

Sunday, April 5, 2009

What melts my heart...

is THIS smile!!!!


Saturday, April 4, 2009

A GREAT gift

Yesterday I was doing my normal: nursing Lilah while the girls played. (Eli was abnormally napping due to a long day in town) Lilah hadn't slept much and was really cranky all day. (After 4.5 months of no sleep, I know how she feels!)

So, I was talking to Lilah and she was kicking her legs and batting her arms. She wrapped her hand around my finger, and I proceeded to do a very normal thing. I raised her hand up to my mouth and kissed her fingers. But, this time something amazing happened.....

LILAH LAUGHED!!
These are the moments God gives us to feel His presence.
I immediately called Aaron at work, put the phone on speaker, and let him hear her beautiful, sweet, giggle. The other end of the line was very silent. All of a sudden, Aaron quietly, almost tearfully, said exactly what I was thinking...
"That is the best sound...EVER!"

Wednesday, April 1, 2009

4 month Well Check

Lilah had her 4 month well check yesterday. I knew she was getting big. I knew I noticed her "rolls" becoming bigger...and more of them. People have commented to me that she has gotten big.

My pediatrician asked if we were giving her "steroids." (No the FML drops don't affect weight)

Anyhow, she is doing great on her milestones. Meets hands together, rolls side to back,etc.

My breastfed (only) baby shot up from 11lbs.10oz. (1/29/09) to 17lbs.4 oz(3-31-09). Like I said, "My little girl might not see well, but she LOVES to eat."

Here she is.....

Isn't she a cutie pie?