Lilah's Hope: July 2009

Friday, July 31, 2009

Patching Day One

Lilah's First Day!

Thank you, Brandi, for the patches!

We only got up to about 20 minutes....

But that is GREAT for day 1.

Slowly we will work our way to the entire hour!

I am proud of you Lilah!

Thursday, July 30, 2009

Lilah woke up at 3, so I nursed her back to sleep. When I left her room, my mind was racing. I knew what I needed to do. I grabbed my Bible and started to read scripture. I read verse after verse on Trust.

Exodus.

Psalms.

Proverbs.

At 4 I laid back down to try to get more sleep. The alarm went off at 5:30. I got up, started the coffee, and began to pray again.

I felt PEACE. I was nervous, but knew it was in God's hands.

The picture above shows Lilah closing her right eye to get more sight from her left.

I want to begin by saying thank you to Neena for watching Alex, Sammie, and Eli while we went to Atlanta. I also want to thank my cousin, Mandy, for picking us up at the airport, taking us to the appointment, and taking us back to the airport.

Ladies, we are so grateful!

Mandy, Me, Aaron, and Lilah

We arrived at the airport at 7:15. My father-in-law, who is a pilot for the hospital helicopter, was talking to the pilot, Welles Murphey. What a sweet man! When we met him he stuck his hand out to shake mine and I said, "Thank you SO much for doing this for us" as I gave him a BIG hug!

Welles said we should go so we headed to the plane.

Welles, Aaron, Lilah and I before take-off

The weather was great. The flight was so nice...and quick.
45 minutes airtime.

Welles note to us before we landed.

As we flew, I prayed and prayed. I asked God to give me wisdom to ask the right questions, tell Dr. Lee all that was happening with Lilah, and peace to know it would all be OK.

My bracelet.

HOPE, courage, FAITH

This is what I saw out of my window.

Heaven on Earth. I felt God at this moment!

Daddy and Lilah

Mommy and Lilah

When we got to the airport Mandy was waiting with a big smile on her face. We got in her car and rode to Dr. Lee's office. When we got inside Susan, Dr. Lee's receptionist, asked me if we flew today. I said , "Yes." (Thanks Susan for rescheduling our appointment to make this work.)

I got Lilah to sleep right as we were called in. Dr. Lee came into the room and I spoke about a mile a minute. I told him everything that I had on my mind and I asked a million questions.

I told Dr. Lee that Lilah's eyes were focusing so well together. I told him that her right eye seems to be very, very slowly clearing. I told him that Lilah's right eye seems to drift upward and inward slightly when not being stimulated.

He decided to try the corneal thickness test first. This looks like a pen with a clear point on the end. He places the point on her eye to determine her corneal thickness. He got the readings from both eyes and said, "WOW." He said , "That's amazing."

*When Lilah was 4 weeks old her corneas were 1083*

Today her corneas are 520left eye and 579 right eye. (Normal is 500!)

THANK GOD!

Let me tell you how HARD Lilah fought us to get these readings. Scott, Dr. Lee's assistant, held her head with two hands. I held one arm down and Aaron held the other. Lilah was screaming mad!!

He tried to get her pressures and got 13R and 22L BUT she was squeezing her eyes shut. he said the left measurement is probably lower. He said that the Trusopt(Glaucoma prevention drops) must be working!

I reminded Dr. Lee that he took Lilah off of the FML drops(helped clear left cornea) 8 weeks ago. I asked him if we could try again on the right to see if it would help clear it more and he said, "Why not, its worth a shot! Put one drop in her right eye every morning."

Another try with the FML to clear her right cornea....THIS makes me VERY excited!

We decided it was time to start patching.

I will put a patch over Lilah's Left eye(the better eye) in hopes to strengthen her Right(weaker eye) for 1 hour everyday.

I pray, and am asking for TONS of prayers, that the combination of the FML and patching will clear and strengthen that right eye.

I asked Dr. Lee what he thought about the transplant as of today. He said, "The rule of thumb in the Academy is that is you get one eye to clear without surgery than you don't want to do a transplant on the other." He said he will probably not do a transplant on her right eye...EVER!

(Children who have transplants usually get glaucoma and have multiple surgeries and can have many complications.) Lilah is VERY blessed to not have had to have the transplants. Thank you for the many prayers.....PRAYERS ANSWERED!!!

We go back to Dr. Lee on 8/27/09

He will recheck her pressures and thickness again. If he cannot get an accurate reading he will schedule Lilah for the exam where she is put under anesthesia for the first week of September.

(Aaron and I will celebrate 10 years married. 17 years together in September. What a great Anniversary present it would be to know our baby's eyes are doing so much better.)

A GREAT visit!!

Good news.

Another chance.

Lilah and AMAZING Dr. Lee!

Congrats on your new baby girl Addison!

We love you, Dr. Lee!!!

I will NEVER give up HOPE!

I will NEVER quit believing that Lilah WILL be fully healed!

Lilah hanging on to the HOPE necklace around my neck!

****We came home to a fully cooked meal from my friend, Laura. Thank you for the chicken, mashed potatoes, green beans, fun drink, and my FAVORITE... Tiramisu. AWESOME***

Enjoy a video of us on the plane!

Miracles DO happen!

Thank you for the prayers...God is answering them!!

THANK YOU ANGEL FLIGHT!!!

THANK YOU WELLES!!!

Wednesday, July 29, 2009

Tonight, I am scared!

Honesty

Truth

Transparency

I am very nervous about Lilah's appointment tomorrow.

Lilah's right eye sometimes goes up a little.

Sometimes.

Lilah's right eye is getting clearer...BUT slowly.

The picture below was taken while she was rolling over yesterday.

I was taking several shots. She is upside down.

This is what she looks like.

Do you see what I am fearful of?

Will he patch her left eye to make the right stronger?

Can she see anything out of the right?

Is her left eye clear enough, strong enough to handle patching?

Will Dr. Lee wait longer?

Will he give her more time and me more options to help her?

Can he, will he start her on the FML again to help clear her right eye more?

Oh dear God, I am so scared for Lilah.

Will this be the appointment where we are told she has to have the transplant?

Have we reached the limit?

WHY am I so scared?

I pray the Lord will help me trust HIM and HIS plans for her.

As I write this I MUST tell you all the good things Lilah IS doing!!

Both eyes are focusing on objects, lights, toys, and my face more
Lilah is rolling over more
Lilah is more comfortable in her surroundings

I PRAY, humbly pray, that Lilah will NOT need transplant surgery.EVER!! That there is some other method and her eyes will clear more and more without invasive means.That Lilah's eyes will remain straight.

*I needed to get this out of my head...as much as I can*

Pre-visit prayer for tomorrow

Heavenly Father,
We thank you for Lilah and all you have done in her eyes. We thank you for clearing some of her corneas. We thank you for giving her the ability to see us with what vision she does have. We thank you for placing her in our family. We are so grateful for her. We thank you for Angel Flight. We thank you for the pilot, Wells Murphy. We thank you for his generosity and kind heart.

We come to you today asking for a safe flight to and from Atlanta. We ask that you give Mr. Murphy your strength and guide him as he flies us. We ask that you please bless him and his family for his generosity. We ask that you please be with us on our journey and keep us safe.

Lord, we are coming to you in continued prayer for Lilah. We ask that you please heal her fully. We ask that you please continue to clear both of her corneas. We ask that you keep glaucoma and blindness from her eyes. We ask that you please use the most non-invasive methods to heal her eyes. Please keep her eyes from wandering. Please help improve her sight daily. We ask that you please help Lilah to remain still during testing. Please allow Dr. Lee to get accurate readings of her pressures and her corneal thickness. Lord, we ask you to please help us trust in YOUR plan. We ask you to give us your peace, your strength, and your wisdom.

We thank you, oh merciful Father, for the people reading and praying this prayer. We thank you for our amazing family and group of friends you have placed in our life. We thank you for their help .We are so grateful for the meals, the babysitting, the funds, the support, the love, and above all the prayers. We are forever appreciative for their love and generosity.

Thank you Lord, in advance, for the miracle you will perform in Lilah. We thank you for trusting us with her precious life.

In YOUR name we humbly pray.
AMEN!

Tuesday, July 28, 2009

Priceless

Thanks to my friend Brandi calling and requesting....

ANGEL FLIGHT will be flying Aaron, Lilah, and I this Thursday for her appointment.

All I know so far is that the pilot is a volunteer. This is his plane.He will wait at the airport for us while we go to her appointment. My cousin, Mandy, will pick us up at the airport and take us to and from the visit.

Let me tell you how excited we are!!!!

Do you remember my post about the Burden?

I have been SO, VERY, VERY BOLD with my prayers. The Lord already knows what is in my heart. He knows what I need. He wants me to humbly come to HIM with all my fears, doubts, questions, and requests. I have been BOLDER than I have ever been since Lilah's birth. I have given everything to HIM. And do you know what I am finding more and MORE....God REALLY answers prayers!!! HE DOES!!

What a HUGE blessing this is.

Round trip air time...2 hours MAX.

Appointment time...average 1 hour

Total time away from our children, including drop off, drive to airport,etc....4 hours.

Not having to drive to Atlanta, be away from our kids for 11 hours, and spend tons of money...

PRICELESS!

Little Gifts

I spent the ENTIRE afternoon (12-5:30) at the Health Department and the Social Security office.

Now, I was not looking forward to this adventure.

I lost, yes, somehow I actually did, 5 out of 6 of our SS cards. I am not sure how. I SEARCHED my home, my van, my attic....EVERYTHING. Also missing were Alex and Eli's Birth certificates.(Thank God they were both born locally.)

So, I knew I had to bite the very large bullet and get them all replaced. Not to mention, I have been putting off applying for disability for Lilah...for many reasons. (Most of which, I have struggled with acceptance that my baby girl has a disability.) BUT, the time had come to take care of all of it.

The Lord made the path REALLY easy.

My friend watched the older three for me so I wouldn't have to take them all over town.

THANK YOU NEENA!

Thank you to the kind receptionist at Dr. Cossio's office...thanks for the "GIFT."

Thank you to the nice lady at the Health Department

Thank you to the FAST and efficient man at the SS office

Thank you to Penny at Dr. Lee's office for staying late and faxing over important info

Thank you to the VERY nice, VERY patient, VERY kind woman at the SS office who is trying to expedite Lilah's case. What a blessing!

Thank you to the retired veteran who placed his hands on Lilah and prayed for her...truly a GOD thing!

Thank you, Lord, in advance for all that you have planned for Lilah.

I was warned that Lilah will probably get denied. Even with 6 of us on one income. If we don't get it, oh well, I tried. But, if we do...what a blessing it would be to have that extra help to cover Lilah's meds, trips to Atlanta, and more. So, I will leave it to the Lord.

Just had to share all the little gifts God gave me yesterday. They were little BUT to me they were HUGE!

Monday, July 27, 2009

Fear and Doubt

I know what happens to me each time we head to Atlanta...

Worry.

I know what happens to me the days leading up...

Stress.

I know what I can do about it...

Pray.

I know I am human...

SCARED!

I know I have immense fear of the unknown...

GIVE IT TO GOD!

Today I ask for help. I need the Lord's comfort. A million and 1 things to do....and I am overwhelmed by emotions.

I have already cried twice today and it isn't 9 am yet. I am fearful. I am scared. I worry.

Do Alex, Sammie, and Eli feel as if we love Lilah more because we have to do more for her each day? Each month?

I am drowning. I am in NEED. I need the Lord to comfort me. I cannot do this without HIM.

Please pray for strength for me. Please pray for the Lord to give me peace. As much as I try...I cannot do this without HIS help.

Hebrews 4:16Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need

Saturday, July 25, 2009

Burden

As we approach Lilah's next appointment this Thursday 7/30/09, I am, again, filled with many emotions, thoughts, and fears. I have prayed, given it to God, and prayed again. I feel the need to share what I am experiencing right now. Even as I write this, I realize it could be so much worse.

Each time we head to Atlanta we have many things we must organize before going:

What time to leave..the trip takes 4.5 hours one way, 9 hours round trip, 11 including the appointment
Will Lilah be any better
Who will watch Alex, Sammie, and Eli
Will Lilah be able to see
Who's vehicle can we borrow...our 97 Caravan won't make it(thank God Aaron and his Dad just fixed the A/C)...Aaron's 90 Bronco...gas prices...No way!
Will Lilah be better
Food to pack for Aaron, Lilah and myself
Cost...

Like I said, I realize that things could be worse...BUT every four weeks this is another burden I must ask others to help me carry. I have to find someone to watch the older three. The pressure test, holding her down, the corneal thickness test...all of those are hard enough for me and Aaron to watch. I know it would scare the ...you know what...out of my older three to watch their baby sister go through that.

I have an amazing group of friends and family who have helped me take care of the kids on the appointments. BUT I am interrupting their lives by asking for their help for 11 hours. Most of them work, most of them do not have small children, and those that do...that is three more kids I am asking them to watch. I know that they love me and my kids and want to help. I just feel like a HUGE burden to them. I pray that we will not have to go to ATL as much. I pray for normalcy.

I pray for the mundane!

I pray that Lilah is doing SO much better. That Lilah's eyes are clearing so much more. That her pressures are amazing. That her corneas are SO much thinner. I pray for the miracle of sight! I pray that blindness NEVER touches Lilah's eyes!!!

I pray that Dr. Lee will tell us we do not need to come back for a long time. I pray that if he wants to do the exam where Lilah will be sedated that he will do it soon before Alex goes back to school..before Sammie starts school.

I pray that the Lord will continue to bless us. We have struggled, financially, so much. I don't want to be rich. I just want to be able to not worry about how we can do this each month with the added expense of going to ATL. I would like to have the resources to fly....to fly to go see my new nephew, Christian, in Rhode Island(born 7/23/09...6lbs 5 oz). Some of this probably sounds ridiculous. Some of this sounds...I don't know. I am human. I am worried. I am overwhelmed. I pray for peace, for strength, for continued miracles for Lilah.

So, I will continue to praise and give it all to the Lord.

Psalm 68:19Praise be to the Lord, to God our Savior, who daily bears our burdens