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

~Romans 15:13

Saturday, January 31, 2009

The Bright Side

After processing and holding in so many emotions, I am writing this very early morning to say exactly how I feel. I love Lilah. Exactly how she is. I will always love her. Sight or no sight. I know that she is different. I know that she is not like other babies. I am tired of people pointing that out. I do not need people telling me how different she is. I know!

Lilah had her 2 month well check Thursday, 1/29/09. My pediatrician, Dr. Cossio, asked about the doctor in Atlanta. We talked about her eyes, her reflux, her nose (she's stuffy a lot), and I told him the comments people have been making. He almost seemed irritated that people were saying negative things. I told him I wanted to know all we are up against is just the eyes. I want to know if it is anything else. So, he agreed to a Chromosome test, to appease me and hush the comments. (Results in 3 weeks) Lilah had her immunizations and then had to have 7 cc drawn for the test. The tech who was suppose to help didn't come in, Lilah was screaming, and Sharon was having a very hard time finding a vein. So, I assisted her in an arterial stick.(No, I am not a nurse) I drew Lilah's blood into the two syringes. Sharon took the needle out and bandaged her up. Sharon kept telling me how great that was and how good a Mom I am. (Thanks Sharon, but I will do anything for my kids.......even draw their blood)

Now, I want you to know the positives about Lilah. I want you to know the great things about her. She weighed 11 lbs. 10 oz. She gained 3 pounds in 1 month! She is 24 inches long. She has such chunky arms that Sharon couldn't find her vein! I want to focus on these things. I am grateful for Lilah. I am blessed to have her. I pray that the Chromosome test comes back normal. But, if it doesn't, we will face it head on and still love Lilah. I want to share something with you that I read this morning. (Thank you Lisa!! www.donaldandlisasorensonfamily.blogspot.com) This does a great job of explaining exactly how I feel.

Welcome to Holland
by Emily Perl Kingsley
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.
"But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

Tuesday, January 27, 2009

Phone call from Dr. Lee 1/27/09

Pictures were taken at birth 11/25/08(top) and 9 weeks later on 1/27/09(bottom)

After being really worried about Lilah, and getting some good advice, I called Dr. Lee yesterday. Today he called and left a really nice message at the house for me to call his personal cell phone. Yes, he actually called the house himself. Not a nurse, not a receptionist. What doctor does that????
A dedicated, compassionate, caring, GREAT doctor!!!!!
When he got on the phone I asked him why Lilah hasn't smiled at me yet and he said not to worry. I asked if she wasn't smiling because she couldn't see me smile. I told him that my other three smiled at me by this time. He tried to reassure me. He said that it usually takes three months for visual eye functioning.I asked him if Peter's Anomaly could cause other problems and he said that she seems to just have the type that is associated with the eyes. Dr. Lee said that if Lilah had Peter's Plus she would have significant birth defects. What Lilah has is the Peter's Anomaly of the eye where a gene did not form the eye correctly.
Dr. Lee asked me if I noticed Lilah trying to look at me. I told him that she really tries to see me. I told him that Lilah turns her head when the girls talk to her. I asked Dr. Lee to tell me what she can see. He said, "light and darkness and maybe some red." I asked if that was true even for her condition; and he said yes. I told Dr. Lee that Lilah's eyes do not seem to cross that much, if ever. I told Dr. Lee how I profoundly appreciated him calling me personally. He said, "Let's keep each other posted."
Dr. Lee is an answered prayer. He is a fantastic, smart, caring, compassionate Dr. I am grateful that he is taking care of her. I am grateful that the Lord sent him to us. I know that God is using Dr. Lee to heal our precious baby Lilah! Thank you, Dr. Lee! Thank you God!!!!

Monday, January 26, 2009

The unknown

Can Lilah see anything? Can she see shapes, colors, blurry, hazy....anything? She hasn't smiled at me yet. Is it because she cannot see?She hasn't cooed yet. If she hears me, then why doesn't she smile at me? Is it because she doesn't see me smiling at her? Is there something we are missing? Is there something that we have not been told?
Not knowing whether Lilah will ever see. Not knowing if Lilah can see me now at all. Not knowing whether she will develop normally. Not knowing if there are more problems than just her eyes. Not knowing if she will live a normal life. Not knowing if she will be made fun of for her abnormalities.
As a mother, I want so much to protect her, and the other three. I want to protect her from pain. I want her to have a fantastically normal life. I want her to be happy. I want her to see. Oh God, I want her to see. I want her to run! I want her to dance. I want her to see the floor as her feet move across it. I want her to be all she wants to be. I want this for all of my children. I want this for Lilah because she started her life with more challenges than the others.
I want to be a good mother. I want to be a great mother. I want to be a great mother for ALL of my children. I don't want Alex, Sammie, and Eli to feel that I love Lilah more because she needs more. I don't want my children to look back at their life and feel that their Mommy didn't support them fully. Having four kids is challenging and trying enough. Having a newborn is challenging, especially having older children. Having a newborn with special needs is much more demanding. I feel like I am not giving my kids the best of me. I feel like I am giving them pieces. Are they getting the best pieces? Are they getting what they need from me? Do they feel pushed aside? Are they happy? Do they know that they are loved beyond their knowledge? Do they know that I would give anything and everything for them? Do they ALL know that they are loved equally no matter the time I spend with one or the other?
The stress has become gigantic. The stress of having to be so strong. I have had to be strong for my kids, for Lilah, for Aaron, for my Mom. I feel like I am not allowed to be scared out of my mind. But, I am. I am scared. I am human. I am doing the best I can and I still don't feel like it is enough. I am tired. I am tired of the stress of the uncertainty. I feel like I am so alone in all of this. I have to be strong for everyone else, and I am crying and screaming on the inside. Who is there for me? Who is being strong for me? Who is being strong for the Mommy who tries so hard to do it all, but I can't.
Oh dear merciful Lord, please let my daughter see!!!!!!!!!!

Monday, January 19, 2009

1/15/09 Continued Hope

We got so much information Thursday, 1/15/09. First, Lilah's pressures were great (15,18). Dr. Lee is having us stop the Trusopt (pressure/glaucoma) drops for 3 weeks. Answered Prayer!
The FML steroid drops are only effective for a short time so, Dr. Lee has changed the dosage to 1 drop in each eye once a day.
Dr. Lee said that Lilah's left eye looks like it has reached a plateau from the drops. Her right eye is very,very slowly clearing on one side.This means one of several things. First, if only one of Lilah's eyes clears,probably the left, Dr. Lee may not do surgery because the right eye may never respond to surgery and she has an increased risk for glaucoma, trauma to the transplant, Strabismus (from Greek: στραβισμός strabismos "to squint," from στραβός strabos "squinting"[1]) is a condition in which the eyes are not properly aligned with each other, and if she will never see from her right eye he would rather her look cosmetically like she has two working eyes. Secondly, if both of Lilah's eyes remain cloudy then he would begin transplant working on one eye at a time.In order to prevent surgery on the eyes the pupil must be completely clear with no obstruction.
At this time we have not had to do surgery:answered prayer. Dr. Lee said that when he first met us he was 90% certain Lilah would need surgery. Now, he said, he is 50/50. We go back to see Dr. Lee on 2/6/09 to check her eyes again. He will check her pressures, the cloudiness and the thickness of her corneas.(Her corneas measured 1000 on 12/23/08.That is double the normal level) If her eyes have continued to improve on the 6th then we would continue our regimen until the beginning of March. At that time we will know whether or not surgery will be needed. We have a time frame of 6 weeks.
I know....TONS of info.
So, here goes:
Please pray for the FML drops to continue to clear the cloudiness of both of her corneas. Please pray that the pupils of both eyes are completely clear within the next 6 weeks.Please pray that her pressures will remain within the normal range. Please pray that Glaucoma does not set in. Please pray that Lilah will be healed completely without surgery. Please pray for sight. Please pray that Lilah will get vision from both eyes. Please pray that Lilah will continue to be an inspiration. Please pray that Aaron and I are able to remain strong, hopeful, trusting and patient. Please pray for wisdom, guidance, strength, and peace.
Aaron and I are so grateful that God has given us so many miracles and HOPE with Lilah. We are so, very grateful for all of your prayers. Thank you for praying, forwarding the info, asking for prayers from others, the support, love, food, help, babysitting, and so much more.
We must be patient. Miracles happen on God's time, not ours.BUT they DO happen!!!
I trust Lilah will see. I know that the Lord has answered so many prayers and is listening to each and every one of you. THANK YOU!!!!!!!!!!
"I will put my trust in HIM."
Hebrews 2:13

Friday, January 9, 2009

Doctors don't know everything

Last night, at small group, I was telling everyone how I really pray that Dr. DeVaro, here in Savannah, will have a change of heart by the miracle of Lilah. Aaron reminded me of one of the unkindest things Dr. DeVaro said to us on our initial consultation in the hospital when Lilah was 18 hours old. He actually said,

"God didn't make these eyes right."

Who says that? To another human being, to a patient, to new parents cradling their precious baby daughter?
I know that the man is smart, educated, knows his stuff, and is the best in town, but WOW.He has a wife and kids of his own.How could he talk to us like that?How could I have forgotten that? How could I have let that slip out of my head?Does he really believe that God is to blame?
Because the God that I know, the God that really is.....well, He IS loving, kind, amazing, giving, all-powerful. God has given me the power to forgive and forget. God has given me the strength to focus on Lilah's needs, and those of my husband and three other children, and to leave the junk that people say out of my head. The God that I pray to, worship, adore, and love gave HIS only Son for me. God loved me that much. God still loves me. God loves Lilah. Lilah is HIS child first. I get the amazing opportunity to raise, love, hug, kiss, encourage, inspire, and teach my children.
I will readily admit how human I am. I have great days, good days, and some random not so good days. But, I trust, I F.R.O.G! (Fully Rely On God) I know that the Lord will heal Lilah. I am not God and I don't know how He plans to heal her, but I TRUST that HE will.
My prayer is for Dr. DeVaro. To have a changed heart, to be kinder, more patient, more understanding, more compassionate to his patients. I pray that DeVaro will come to know Christ. I pray that he will see Christ in our family: in Lilah. I pray that Lilah will be such a blessing to each person she meets.
In order for Lilah to be used the way that the Lord has intended, I am requesting that everyone please partner together in prayer and ask for Lilah to be completely healed! I know we WILL get this amazing miracle. Lilah will change the way people see the world. Lilah will be able to see and she will have a fantastic testimony to tell.
Thank you for praying! Thank you for continuing to trust in the Lord and HIS will. I cannot begin to tell you how priceless the prayers are!

Friday, January 2, 2009

God is SO amazing!

God is SO Awesome!

Aaron and I waited almost two hours to see Dr. Lee, but it was very well worth it. Dr. Lee came into the office and said, "So, have we noticed any change?"
I told him that we feel that her left eye is better and that our pediatrician, who saw her on Monday, agrees with us that her eyes are improving. Dr. Lee said, "Well, let's take a look."
He said, "I cannot believe it. You can see the bottom part of her iris very clearly." He also said he could see some pupil. Then he looked at her right eye. There was some change, but not as drastic as her left. He said he was very excited and could not believe that after only a week her eyes have had such a drastic improvement. He said, "I want to watch her eyes very closely. We may not need to do surgery." He also said,"If she continues to improve like this, she will be the third patient I have had that the drops have worked to clear the cornea." Dr. Lee was smiling and I started to cry and asked him if I could give him a hug. He said that yes, she is beginning to reflex to light and that is a good thing because we want her eyes and her brain to come together. He gave Aaron a high five and said "way to go guys.Keep doing what you are doing and I want to see you in two weeks." Dr. Lee said that if the FML drops work that she will be the third patient to succeed from them. He kept telling us how excited he was and as he left the room, he turned around and said, "You guys made my day!"Dr. Lee was so happy with her results, but wants to make sure she continues to improve.

THANK YOU for the prayers. PLEASE continue to pray for her. The prayers are working!!!!!
Aaron and I are speechless.We are cautiously optimistic! We are so grateful that God is using Lilah to bring so many people to Christ. We are so blessed to have you all in our lives. We ask that you please keep the prayers going. We know that she is a miracle and that your prayers are helping her. We go back to see Dr. Lee on 1-15-09 at 9:40 am. please pray that the drops continue to improve her eyes and that this is the non-invasive method the Lord has planned to heal her.
Thank you for the prayers. Thank you to God for answering them. Thank you for continuing to pray for her complete healing!