"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, June 27, 2009

Beauty on land and in water

Some of my favorite pictures I took from our aquarium visit are of Lilah laying down next to the Beluga whales. They would rub up against the glass as if they saw her and wanted to say hello.
The beauty and grace of the Belugas and the miracle of Lilah...
Our God is so magnificent!






Friday, June 26, 2009

GREAT news, new diagnosis,new questions

WOW!
Where do I begin?

Yesterday was a very long day. We woke the kids and put them in the van at 4am. We drove to Atlanta for Lilah's appointment, took them to the aquarium, and made it back home at 10:30pm.



Normally Aaron and I take Lilah alone. Normally we are so full of emotion and do not really know what to think, say, or feel. This time we added the kids to the mix, so we are still recovering from the trip; not to mention Aaron had a surgery today.

Okay, so I have tons to tell about Lilah's visit with Dr. Lee.


  • Both of Lilah's corneas are clearer! PRAISE GOD!
  • Lilah's pressures were great. (18,19) AND she was fighting so they were probably even lower than that.
  • Dr. Lee does not see any Nystagmus (yet) in Lilah's eyes. (Another Praise!)
  • No Glaucoma is present right now.(Another praise!)
  • I asked what Lilah's visual acuity is right now and he said "20/100 in both eyes"
  • Lilah's diagnosis has been changed:

Dr. Lee said that patients who have Peters Anomaly do not normally have corneas that clear without transplant surgery. He has changed Lilah's diagnosis to Anterior Segment Dysgenesis.

Dr. Lee said that if Lilah does have Peters, it is an extremely mild case. He said that certain parts of Lilah's eyes did not form properly. I asked him a million and one questions. I told him that I had heard that Glaucoma can be present, even if pressures are good, and still cause damage. He said that Glaucoma is not a perfect science and that the only information they really know for sure is that one way to stop the symptoms is to control the pressures. I told him that I wanted to know if Lilah's retinas and other parts of her eyes were okay. I told him that Lilah had an ultrasound of her retinas at 12 weeks at Dr.D's office, (and they were good)but I wanted to know if there was any unseen, unknown damage. I also asked if she would need glasses, and when.

I asked and asked and asked.

When he was finished examining her, and as we asked questions, I sat Lilah up facing him on my lap. The entire time we talked, Dr. Lee stared at her and at one point said, "See she's looking right at me. She can see me!"

This is what our next steps are:

  • Keep Lilah's pressures under control by giving her the Trusopt drops 2x a day(Glaucoma is still the largest side effect and could take what sight she does have)
  • Keep strengthening the muscles of the eyes by stimulating her with lighted toys
  • We go back to see him on 7/30/09
  • Soon Dr. Lee will want to do a procedure on Lilah where he will put her to sleep and do a much more thorough exam of the eyes. He said this would tell us her prescription and if and where there is any damage
  • CONTINUE to pray daily for complete healing

Dr. Lee said, "I know I say it each time you are here, but it is unbelievable how well she is doing." He said he is still amazed at her progress. THANK YOU LORD!!!

The best part of the visit was when he told us that Lilah's left eye is near perfect and will not need transplant surgery. He is still not sure whether he will need to do the transplant on the right. But she can see something out of both. He said she will definitely have vision in her left eye and at worst be legally blind in her right. That is incredible news!!!

Aaron and I are beyond grateful for the prayers. They are working and the Lord is hearing and answering them all. Thank you for your continued support, love, and prayers. We serve an amazing God!!


I told Dr. Lee that Lilah is our miracle baby. He said, "She sure is. Take care of your miracle!"

Wednesday, June 24, 2009

The Armor of God


And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying... Ephesians 6:18
Early tomorrow morning we are driving to Atlanta for Lilah's appointment with Dr. Lee. This time, we are bringing the kids with us. We will make this a family event, and take them to the Georgia Aquarium after.
I come in need of prayer. As the verse states above, I will pray for all of my requests. This request may be bold, but the Lord can perform miracles if we believe in HIM.
Lord,
Thank you for my gift. Thank you for Lilah. I look at her and am overwhelmed with emotion. I am so grateful, so amazed, and at the same time I am so full of worry. I know you know the fear in my heart. I know that you know the questions I have. I know that you know I am in need of you. I am asking you, oh merciful Father, for complete restored vision for Lilah. I know that you are the ultimate healer. I know that you perform miracles. Please continue to clear Lilah's corneas. Please keep glaucoma from her eyes. Please keep her eyes straight. Please thin her corneas. Lord, I am asking for you to erase all the cloudiness from her eyes. I am asking for Lilah to continue to work for you by showing the medical community her miracle. Please Lord, please do not allow Lilah to be in darkness. Please do not let her go blind. I am asking for each part of Lilah's eyes to be working and in tact. I am asking that Lilah be able to see not only light and shadows. I am asking that Lilah be able to see colors, shapes, textures. I pray Father, for Lilah to be able to see all the wonders you created in this world so she can tell people of the world yet to come. I ask that you keep our family safe as we travel to and from Atlanta tomorrow. I am asking for you to bless us with a smooth, enjoyable experience. I love you Lord and I am so grateful for the many blessings you have bestowed upon me and my family.
In your name I pray.
Amen.
Thank you for praying for Lilah!
The update from this visit may be a little delayed. I will post the results of her visit as soon as possible.

Yes, I did....

Paint her toes!












She just had to get all dolled up for Dr. Lee tomorrow!



Tuesday, June 23, 2009

Live action Lilah

We found Lilah a new toy to help her "fix and follow" more.

ENJOY!

video

*If you want to hear the sound, scroll down and push pause on the play list*

Monday, June 22, 2009

Best Big Brother

Recently Eli has been very interested in praying for Lilah.

Here is a video of what he says.

In order to hear him, please scroll down and push pause on my play list.

Then press play and

ENJOY!

I promise it is worth the hassle!!

video

Sunday, June 21, 2009

Part of the gift

For Aaron's Father's Day present
I took the kids to a square downtown
Here are some shots of Lilah I took



If you want to see more just click HERE!

Friday, June 19, 2009

Getting Stronger Everyday

I was sitting at the kitchen table
and
looked over
and
Lilah had...
ROLLED OVER!!!







She didn't cry
She didn't fuss
She just rolled over and began to pull her legs under her belly
Mommy, Alex, Sammie, and Eli ...
CLAPPED!

Wednesday, June 17, 2009

As I was walking...

in Wal-mart yesterday trying to maneuver a double stroller, a grocery cart, and four kids...
all the while my kids were being VERY good....
Alex and Sammie were taking turns pushing the cart....
we were about to turn the corner....
and I thought to myself...
"Wow, this has been a pleasant experience"
and then.....
a lady zoomed around the corner in her powered chair and said....
"Look, its Baby HUEY"

and I said "WHAT?"
and she said, "He's a HUGE one"
(Yes, you read that right)
and I said...
"SHE is beautiful"

Now....

there are parts of me that wished I could've said...

"Excuse me...how dare you?"

OR

"Does my child look like a cartoon duck?"

OR

something very not nice


BUT

I took the opportunity to tell Alex and Sammie(Eli would not have understood)

"People may judge and say mean things about your sister, but we never say those kinds of things, right?!"

And my girls said...

RIGHT!




Tuesday, June 16, 2009

The Lake

I found this today.

Am I strong enough to help Lilah be confident like this?
As I read, I imagined what Lilah's future would be like.
Will it be like this?
Will it?
If you have time, please read The Lake.

Praise Baby

Another idea came to mind...
A friend of mine is letting me borrow her Praise Baby videos for Lilah.
I am not sure what all she can see of them, but my idea was a two-fold therapy.
First:
Put on the video that has bright colors, shapes, and GREAT worship music
Next:
Instead of laying Lilah on the floor, I placed her in her Bumbo on the coffee table.(My hand was on her the entire time...except to get these two pictures.)
What happened next:
All four kids watched the entire 30 minutes

(Ignore Eli's hiney...potty training...he's a little messier...new one to me!)


Monday, June 15, 2009

You gotta smile so bright

When I feed Lilah her cereal, she smiles like this.


Either she really loves the cereal OR she really loves me
Either way...I love to see that smile!


Friday, June 12, 2009

Joy in the midst of pain

I love... I mean I really LOVE the song..Revelation...by Third Day. (#3 on my playlist)
I have been singing this song over and over.

Here are the Lyrics:

My life has led me down the road that’s so uncertain
Now I am left alone and I am broken
Trying to find my way
Trying to find the faith that’s gone
This time I know that you are holding all the answers
I’m tired of losing hope and taking chances
On roads that never seem
To be the ones that bring me home

Give me a revelation
Show me what to do
‘Cause I’ve been trying to find my way
I haven’t got a clue
Tell me should I stay here
Or do I need to move
Give me a revelation
I’ve got nothing without you
I’ve got nothing without you

My life has led me down this path that’s ever winding
Through every twist and turn, I’m always finding
That I am lost again
Tell me when this road will ever end

I don’t know where I can turn
Tell me, when will I learn
Won’t you show me where I need to go
Let me follow your lead
I know that it’s the only way that I can get back home



Our small group is doing a study on Philippians. Last night I had a revelation.
I read these verses throughout the week and the Lord revealed many painful things to me...
Philippians 1:12 Now I want you to know, brothers, that what has happened to me has really served to advance the gospel
and
Philippians 1:14 Because of my chains, most of the brothers in the Lord have been encouraged to speak the word of God more courageously and fearlessly
and
Philippians 1:27 Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ
OK...I got it. As painful as these revelations have been that is what a revelation from the Lord is about...revealing something and learning from it.
First, verse 12...WOW!
If Lilah would not have been born with her vision impairment, I would have never had the courage to start this blog about my faith, the word of God, and what it has done to help Lilah, me, and change me. (A girl I have known since high school asked me the other day when God grabbed my heart. I have always believed in God...as long as I can recall. I am ashamed of myself for not sharing my faith more openly before. I cannot imagine my life without my faith!)
Second, verse 14
Again....I am speaking, through this blog and to all those I encounter, about my faith much more courageously and fearlessly. Who cares if people think I am a Jesus freak. I am!! I can prove to you that HE exists and does miraculous things...Aaron's salvation, my sister Laurie's life, Lilah's left eye!
and lastly and MOST painfully, verse 27
I have NOT been conducting myself worthy of the gospel. I have kicked, screamed, bawled, yelled, hysterically sobbed, and other not so attractive things about what I have been given. I have not seen the good in my predicament. I have not seen, really understood and accepted the Lord's plan in all of this. I have asked, "Why Lilah?" more times than I should really admit. I have heard so many complain about their lives and thought "You did that to yourself...Lilah did not...she is pure and innocent." What I have failed to grasp, really fully understand in Lilah's short six months of life is that God really doesn't make mistakes. Who cares that Dr. D told us her eyes weren't made right. Not to God. HE made her eyes...perfect. Lilah will see what the Lord wants her to see..NOT what I want her to see.... and THAT is the painful part. I want Lilah to have it all. I do not want her to be different, made fun of, hurt, ridiculed,etc. What I have failed my precious baby, and the other three, on is having JOY during this trial. I have failed to KNOW without a shadow of a doubt that this will all be OK. I have said those things. I have prayed for those things...but I have wept...uncontrollably for my baby who is different. I do not understand the Lord's plan for her and I won't...not until I finally make it home.
Why am I living for this life? Why am I struggling so hard and not finding true peace, God's true peace in all of this?
I am begging the Lord to give me HIS joy. HIS peace. HIS strength.
I am NOTHING without HIM.
I will have days when I will fail. I will make mistakes. I will have days when I will question. I will have days when I will not get it. I will have moments of sorrow.
BUT
I am determined to give God the glory and live for HIM. I am determined to try harder each day to be the wife, mother, friend, and daughter of Christ that HE has planned. I am determined to allow HIM to mold me.
I am a sloppy piece of clay and HE is molding me into a work of art.I have been placed in the kiln many times. I have been through the fire and have come out much more like pottery each time. I am by no means done yet, because the Lord is not finished with me. HE just took me out of the kiln and I am still cooling off. I know I will go back in, even though I will hate it when I do...maybe, just maybe I will learn to appreciate the kiln because I know I will be a shinier piece of art when I come out again.

Wednesday, June 10, 2009

Thank GOD for the internet!!!!

I am beside myself with GLEE right now!!!!!
I have found a new friend who gets me...totally!!! She and I have emailed back and forth. I am so happy that I read my own feelings tonight...on her blog.
Click here to read and learn what NOT to say to a Mother with a visually impaired child!
How cool is this.......
Her name is Katie!

An idea came to mind

Today as I was working with Lilah...
doing the activities her PT suggested...
an idea popped in my head
What if I put the Boppy like the PT said, then put this toy around it, maybe I could get Lilah to
touch, feel, hear, and....
See!



She LOVED it!
So much....

BUT

It was a lot of work for her body and her senses.




Then I decided to use the Bumbo




Which she liked better because she didn't have to work her abs as much





So, I am no PT
I am just a Mommy
willing to try ANYTHING to help my baby learn
We will see if these ideas, along with those of the PT, will help Lilah improve






Monday, June 8, 2009

Love you

BOTH.....
VERY MUCH!

Better the second time

Lilah just finished her first PT appointment.

AND

I am quite happy to report that it went GREAT!

I told Lilah's PT, Dr. Jennifer Lander, as we were talking about Lilah and working with her, that I am very sensitive when it comes to Lilah. (Thank you Barbara for the suggestion.) I told her that I am always wondering if I am doing enough to help Lilah, if I am over stimulating her, or if I am doing it all wrong.

Jennifer said that in the three months since she has seen Lilah....she is doing great. She said that what I was doing and the toys I was using with her are perfect. She also had some suggestions on ways to improve her toys. She suggested I contact the companies of certain toys and ask if there are other attachments to help a visually impaired baby.

We are learning..... Me and Lilah.
We are learning to be more assertive and ask for what we need and want. (OK more me asking than her.) Lilah is teaching me daily. I am trying to help her in every way I can.
Each day is a new experience. Each day I understand more. Each day I am adjusting to life with Lilah. Each day the comments("Why does she hold her head like that?" or "What is that on her head?"or "Why are her eyes always shut?"...by the way..they aren't shut...she is trying to see and focus.) from people get easier. Each day the grieving gets better. Each day I am helping Lilah more and she is teaching me more.
At church on Saturday I walked into Home Pointe and picked up a pamphlet that called to me. For those of you with special needs children, or if you are interested in something really amazing, I encourage you to click here!

Sunday, June 7, 2009

Prize!

I played a game a couple of weeks ago...AND....I won! The prize I won was amazing! I shared my prize with Aaron, Alex, and Sammie. Thank you, David! We loved the See's Candy. Click Here to see the full story!

Early Intervention

I have just recently finished Lilah's enrollment for Babies Can't Wait. This program is an early intervention program where the therapists come to your home to work in the child's most natural environment. My coordinator has set Lilah up with PT once a month, unless more is needed, and a vision therapist is suppose to come once a week.



Lilah's initial evaluation with BCW was hard for me. VERY HARD. It was done on my birthday and the PT had the nerve to ask, "Are her toes like this because of her syndrome?" I went off..."Lilah doesn't have a syndrome. I had a blood test done to prove that she is of normal chromosomal make-up. Her eyes, her condition, it is an unexplained thing." Again....the questions. (I don't care who you are. If your question about my daughter offends me...watch out! So...just don't ask. I do not care how curious you are. Curiosity killed the cat! Lilah is my child. I am sensitive about her. I have a right to be. If you don't like my sensitivity about her...get over it!!)



So Lilah's PT is the same person who made the comment. She comes tomorrow morning. I pray she is more thoughtful. If not....I will request another PT. I pray to hear from the vision therapist SOON!



My coordinator for BCW is GREAT! She gave me tons of material on vision impairments,etc. I told her exactly what I needed, how I needed it, and what was best for Lilah. I was SHOCKED to receive a pamphlet about the Savannah Association for the Blind that works with visually impaired preschool children. This got me thinking...frustrated and not understanding how something SO close by was NEVER offered to me by the MD who diagnosed her. (I know this guy has a great brain, but COME ON...DR. D....grow a heart!! This prompted me to write the post below.)

Saturday, June 6, 2009

Disabilities...

When Lilah was diagnosed with Peters, no one told us where to go or what to do with that news: other than go to this and that doctor. No one.... not a doctor, a nurse, a specialist, a pastor, a friend,etc.... said anything about where we could go to get support, understanding, knowledge,etc. for our child with a disability. The more I think about this the sadder I get. Not for me, but for future parents.

This is frustrating. Whether a disability is known, rare, seen in x number of births,etc,etc. Doctors, specialists,etc. should have a system, a booklet, ANYTHING to give parents when they tell them the news that their child will forever be different. Doctors should not just deliver awful, painful, shocking news and then walk out of the room. Someone in their staff should help you through the process. Someone should tell you where to go....without you having to ask. Someone should say something like "Here are four websites, two support groups, eight families,etc.etc." Why do they assume that you know what to do? They went to med school to help people. Then help...in every way!

Lilah is 6 months old and no one has told us where to go to get our answers, feel understood, feel....normal. My only REAL team that understands has come from the two women I have met through this blog. They are not in the same city, town, or state. They cannot come to my house wrap their arms around me, cry with me, BUT they cry with me via the Internet. AND they get it...without asking all the why questions! (Thank God for Lisa and Kristen)

I have had to research and research... and I am still getting information. I am appalled at this. Does anyone understand how lonely this is? When you don't know who to ask questions? Does anyone understand that I am not a mind reader? I am new to this! Having a child with a disability doesn't come with a handbook, BUT it should. It should be offered. It should be given without someone having to pour their soul out and not get answers.

The past six months has been a roller coaster of emotions. I have cried more in the past six months than I have EVER cried! I have felt more lonely, more isolated, more sad than I thought I ever would. I would have LOVED to have had someone here...in my own town or at least a drive away...that I could sit with, be with, learn from, help, encourage, share, grow,etc.

So...after months of not knowing where to go or what to do....I am finally getting more information. I am getting more help. I am going to find some answers. I am going to help Lilah....anyway I can.

Lilah has her first PT (physical therapy) appointment this Monday. "Why PT?" (Someone has already asked...I am SO tired of ALL of the questions...this is why I write the blog...so I do not have to repeat myself and reopen the same wound 15 times a day. (Please do not ask me why why why about Lilah....I will tell you if I want to. If I do not explain it...I don't want to talk about it!) Because Lilah cannot see like a "normal" baby, she isn't moving as much as a "normal" baby. So, PT will help her with her physical milestones. I am waiting on the vision therapist to call. She is suppose to come...once a week. THAT will be incredible...if it happens. (I pray that they are not as slow to get in touch and stay in touch as I have been told they are.)

I wrote this not just to vent. I wrote this because I hope to help someone else. I pray that some MD is reading this and realizes that the way in which news is delivered can greatly alter the course of treatment. There is a way to make this process easier!! I pray I can help. I pray that Lilah will be an inspiration.

My baby is different......and I love her just the way she is!

Wednesday, June 3, 2009

Asleep in the crib




I love to watch how peaceful she is....
How PERFECT she is...
I am GRATEFUL!


Six month stats



20.2 pounds
27.75 inches long
Happy, HEALTHY Lilah!

An AWESOME big sister....


ALEX!
As I was rushing around getting the kids dressed before taking Alex to school, Alex saw the clothes laid out as I was dressing Eli she asked if she could put Lilah's dress on.(Thank God she asked first.) I was sitting next to Lilah and I said, "Sure."
So.....Alex tried to put the dress over her head and got stuck.
"Mommy" she said, "How do you get this over her head?"
I showed her how to gently put it on her and Alex carefully pulled Lilah's arms through and snapped the bottom. Alex LOVES to help me. She is a Mommy's girl...ALL the WAY!
Quite frequently I will be nursing Lilah and Alex will have changed Eli's nasty diaper and I wouldn't even have known he went if she didn't come and tell me how bad it was.
I am blessed with a very smart, very helpful, very loving (and sometimes OCD) six year old!

After she dressed Lilah, Alex asked me to take a picture of them together!
What a sweetheart!


Monday, June 1, 2009

Video of Lilah Laughing and blowing bubbles

Here she is in ALL her glory!!!!

To hear her you need to scroll down and push pause(II) on my play list.

ENJOY!!!

(I always do!)

* THANK YOU Aaron for the updated camera so I can video our miracle!! I Love YOU!*

video