"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

Friday, March 27, 2009

The BEST news!!!!!!!!!!!

Dr. Lee said....
We are "golden" on her left eye and he will NOT do surgery on the left eye. He is still 50/50 on whether or not to do surgery on the right. We don't know what degree of sight she will have, but

"She will NOT be blind!"
Aaron told Dr. Lee that we were told (when Lilah was 18 hrs old) that Lilah would probably never see (because of Glaucoma and other side effects from the Peters) and he asked if that was still the case and Dr. Lee said "No." I had to make sure that I understood what he was saying so I asked him, "So, she will NOT be blind?" and he said, "No, she will not be blind. I don't know what type of sight she'll have, but what you and I would think of blind, no she will not be blind."
Lilah fought so hard during testing. There were three of us holding her while Dr. Lee did the tests. Lilah kept kicking, crying, shaking her head side to side and raising her arms to her eyes to stop the tests. Dr. Lee said, "Man has she gotten strong." He didn't want to frustrate her even more, so he didn't push too hard for the tests. But he did get that her pressures are in normal range. He checked for thickness of her corneas. Her left didn't register well, because she was fighting so hard, but her right eye registered at 760. (6 weeks ago it was 815(normal500-600)) Her corneas have definitely thinned out and her pressures are still good.
I told Dr. Lee that he is an answer to prayer and that I thank God for him and his knowledge!
(Not sure if he believed me, but I pray that he takes the compliment. God has blessed that man with an amazing gift!)
We will continue the FML steroid drops in just her right eye. We will continue the Truspot (pressure) drops in both eyes. We are asking for continued prayers for clarity in Lilah's right eye. We go back to see Dr. Lee on April 30th at 8:50am.(Another early appointment, but at least we get back in time to see Alex, Sammie, and Eli before bed!)
I cannot begin to tell you how awesome it was to hear those words from Dr. Lee. We have been hoping and praying for sight. Our prayers, and your prayers, have been answered!!! I wept with joy in the car riding home. I asked God to forgive me for my sadness and lack of total trust. I apologized to Aaron for being so frazzled some days. Aaron said, "Do not apologize. You have every right to be that way."
I am so grateful, so blessed, and so AMAZED!!! Our GOD is SO GREAT!!!!!
Thank you for your prayers. Thank you for your patience. Thank you for your hope. Thank you for NOT giving up on Lilah. Thank you for continuing to pray.
From the bottom of my humbled, grateful, blessed, amazed heart....THANK YOU!
"Go tell of what you have seen and heard....THE BLIND SEE" Luke 7:22

Thursday, March 26, 2009

Atlanta Bound Tomorrow 3/27/09

Taken 3/4/09

Taken 3/26/09

See the differences?

Her appointment is at 8:20 am. We are leaving at 3:30 am. I pray that Lilah will get great news. I pray for clearer, thinner corneas. I pray that Lilah's pressures are low/normal. I trust that God will provide for Lilah. I pray that Dr. Lee will, again, be inspired and encouraged by her and her progress.

Thank you for all of the many prayers!

Tuesday, March 24, 2009

FEAR and Understanding

Today, I must admit where I am. I must say how fearful I am at this moment. Not all days are like today. Not all weeks are like my last week. I am afraid, today, of the unknown.
I am afraid that Friday, when we go to Atlanta, we will be told Lilah has hit a plateau. I am afraid that Lilah will need the surgery. I am afraid that if she needs the surgery that it will not take. I am afraid that she will reject the transplant. I am afraid that she will not be able to see. I am afraid that Lilah will need multiple surgeries. I am afraid that I will not be able to handle all of this. I am afraid that I am not strong enough to handle all of what has been given to me.

I am mad at myself for feeling this way.

I am mad that I am weak right now. I am mad that I do not know how to ask for help. I am sad that I can't do it all. I am sad that I am overwhelmed. I am frustrated that I feel like I cannot ask for help.....emotional or physical. (My friends have always been there for me. My friends listen and understand me. My friends don't expect me to be perfect. My friends accept my weaknesses. My friends accept my sad days. My friends understand the drama of being a Mama. My friends understand if I haven't gotten the thank you notes out. My friends don't expect a phone call. My friends don't get mad at every little thing I do or don't do. My friends allow me to be human. For my friends (and RARE family members) who allow my imperfections....I AM SO GRATEFUL!)
****No, I do not expect people to take care of my children and/or my home for me. No, I do not expect someone/anyone to do my job as a Mother, but...as you Mommies know we need a moment for ourselves. I have asked for help and I have been told "NO" many times from the same people who frequently offer, "just call me, I will be glad to help." I am not a person who likes to ask for help. If I do ask for help, it takes me so much courage and humility to ask. I don't ask for help often. I usually decline help for the fear of not being able to -and need to- be "Super Mommy." But, there are times that I do need and ask, but I am learning that I cannot ask even the people who offer because they don't mean it, they just say it.****

So, my fear is wrapped up in huge bag. Am I good enough of a mother to be the kind of mother Lilah needs? Am I wise enough? Am I strong enough? Am I prepared for ALL of this? What about the other 3? Am I failing them because I am so, very, very emotionally (and sometimes physically) overwhelmed? I did not ask for the cards I have been dealt. I know that ONLY God knows how hard all of this is. Boy do I wish someone could wrap their arms around me and REALLY listen...not fix it, not interrupt, not solve it, not tell me "how it hurts them", not always change the topic to how bad they have it, BUT just listen to me. Unless you are inside my head, in my body, in my life...you do NOT get it. Even as hard as you may try...no one will EVER get it. THIS is why I pray. This is why I have my faith. The Lord listens. God hears and understands. God doesn't judge me.

No one could possibly begin to imagine what I am going through. No one could possibly be in my exact position. We are all made so different. But...let me try to fill you in on how my life goes...today. Let me fill you in on the craziness, stress, and unknowns of my world.....

4 kids...(5 pregnancies...in 7 yrs)4 planned....1 lost....1 gift- Confused? I have been pregnant 5 times in 7 years. 4 of those were planned. We lost 1 baby in between our oldest 2. Lilah, was our surprise, unexplained....GIFT from the Lord.

So, I have 4 kids...6, 4, almost 2, and 4months.
  • About 3 loads of laundry...each day. Yep, most times we live out of laundry baskets.
  • I run the dishwasher at least once a day....sometimes twice.
  • I nurse Lilah almost every 2 hours....She might not see well, but my girl LOVES to eat(like her Mama) No, she doesn't sleep through the night, most of the night, or even a 4 hour stretch. Yes, I am beyond tired!
  • (I have a good 25-30lbs more to get off of me...right now, not the top of the priority list, but adds to the stress and sad/madness)
  • I rush around all day doing errands,taking kids to and from places, and attempting to fill it all in.
  • My home is not as clean as I would LOVE it to be. My home is not as organized as I would LOVE it to be. My home doesn't stay as organized and clean as I would really, really LOVE it to stay.
  • I am surrounded by friends and family who have "perfect" babies. Their babies are alert, bright eyed, always smiling, beaming....and Lilah is not.
  • I serve at church in the infant room with "perfect" babies who aren't as "delayed" as Lilah. I am constantly reminded of how different my baby is.
  • Only a handful of people call, email, or talk to me. Most avoid me. Guess they don't know what to say. I guess they are afraid of me and Lilah. But for a talker...OK, lets get real....an over-communicator....ignoring me is more torture than you know!!

Please know: I am so, very, very grateful for ALL of my children. (Even the 11.5 weeks of being pregnant with our angel in Heaven) I would not trade ANY of them for the world. I just get sad sometimes at watching everyone else in "Italy" while Lilah is stuck in "Holland." And yes, I am VERY aware that I have been blessed with 3 other "perfect" children, BUT that doesn't change, negate, or take away from Lilah and her obstacles she will face for the rest of HER life. I cry for her!

I pray and pray and pray and PRAY! Poor God is probably tired of hearing from me!

But above all of this.....is my fear for LILAH:

  • Will Lilah see?
  • Will Lilah see me?
  • Will Lilah walk and talk?
  • Will Lilah dance?
  • Will Lilah fall in love?
  • Will someone love Lilah...EXACTLY like she is?
  • Will Lilah love herself?
  • Will Lilah know she is different and be disappointed that she can't do what "they" do?
  • Will Lilah read, write, sing, do it all?
  • Will Lilah love as God made her to love?

Will Lilah teach me more about this life and the next? SHE ALREADY HAS!!!

So, if you see me and you wonder what it might be like....wonder no more. If you cannot begin to understand why I might, on occasion, be a little frazzled, stressed, sad, not say the right thing, be short tempered, not laugh enough, cry too much,etc. PLEASE...place yourself in my world for one minute. Please know I am doing the very best I can, and do not need any judgement. I am surviving everyday. I am trying to be the best wife, mother, friend, daughter, sister,etc. that I can. And...if I don't want to talk about Lilah's eyes...please, please don't ask me to.

No, this was by no means a "b" session. This is a very small sample of what goes on in my head and world everyday. Please don't feel sorry for me. Please don't feel sorry for Lilah. Just please try to understand.... She and I...We are doing the very best we can.

But, there is one thing you CAN do.....Keep praying and NEVER give up HOPE!

Sunday, March 8, 2009

Answered Prayers

I serve an AMAZING GOD!!!!

" I am amazed at her progress",Dr. Lee said. "Every time I see you there is an improvement"

Lilah's pressures were "perfect" 18 (right eye) and 14(left eye). Her left eye is so clear that he said, "I still don't think I will have to touch that eye." (Meaning do surgery on) He said her right eye is still "touch and go"(on if he will have to do the transplant or not) but continuing to clear. He is giving us 3 more weeks on the FML drops. (Unless there is some drastic change when we return on 3/27/09)
He said that there is "no way to tell if she is delayed" because it is too early. When I asked him why she keeps her eyes closed so much he gave me this example: "When you go outside on a cloudy day the sun seems brighter" He told me that Lilah's left eye (the most clear of the two) is getting that "bright light" feel when she opens her eyes. I asked if there was anything I could do to help her and he said, "stimulate her eyes as much as possible."
I asked him if a "normal seeing" 14 week old was a 10 on a scale of 1-10 what is Lilah now? And he said, "When I first met you I would've said a 1, but now probably a 4 or 5." That is AMAZING in just 12 weeks!!!!
He said he is "very encouraged" by Lilah and her progress. He said, "The prayers are working!"
I thank God for Dr. Lee. He is a compassionate, caring, positive, encouraging and hopeful man. I am grateful to have a Godly man treating my baby girl.

I constantly remind myself that when Dr. DeVaro referred us to Atlanta, he referred us to a specific surgeon in Georgia. I was a nervous wreck when Dr.DeVaro said "she no longer practices here." Then DeVaro handed me the slip of paper with Dr. Lee's name on it. I remember praying harder than before that Dr. Lee was the man that God had planned to heal Lilah. I remember really giving it truly to the Lord. I HAD to have faith that this man was indeed the right person for Lilah.

Dr. Lee is an answered prayer!

If we were to have seen the other doctor, Lilah would have had the surgery by now. Lilah would not have been given the FML drops and the chance to heal without surgery. Thank God for Dr. Lee and his knowledge!!!!!

The Lord is good. All of my specific prayers for this visit were answered this morning. We get three more weeks on the FML, her pressures were great, and her corneas are still clearing.
Thank you for your prayers. You have been faithful and we have been rewarded. Please continue to pray for complete healing. Our "D-Day" is 3/27/09. MUCH LOVE!!!! God Bless!!
Many thanks!!!!
"I will put my trust in HIM."
Hebrews 2:13
Jesus said, "Go Tell of what you have seen and heard.....THE BLIND SEE" Luke 7:22

Wednesday, March 4, 2009

What a difference a month makes

In an effort to remain positive and strong, I decided to do my very own before and after photo shoot with Lilah. These pictures were taken 29 days apart. The proof is in the photos. THIS is the work of our
Taken 2/3/09

Taken 3/4/09

No matter what happens this Friday( 3/6/09) in Atlanta at Dr. Lee's office I MUST say that I am amazed at how AWESOME our Lord is!
Lilah is a miracle!