"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, January 28, 2010

On all fours

Lilah works VERY hard at Physical Therapy.
Something that would take a "normal" sighted child mere days or weeks to do, takes Lilah much, much, MUCH longer. We worked for weeks on end to get Lilah to sit up alone. We have worked hard at getting Lilah comfortable weight bearing in her feet and hands.
Because of Lilah's visual impairment, she doesn't have the type of motivation to move that other babies do. She doesn't see the toy to go get it. She doesn't want a toy because she really doesn't know, without work, that it is even there. Everything takes more time. More energy. More determination. More strength. More bravery. More will. More Patience.
I feel very connected to Lilah. Yes, she is my child, but she and I share a bond that I could not ever express in words, on paper, blog, type, write, etc. I can tell when Lilah has had too much, been pushed too hard, she's over stimulated, its too loud, too cold, too wet, too hot, or she's just plain finished. I can also tell when Lilah really gets it. I mean I can see and feel it when she knows, she just knows she has mastered a new skill and she is just so proud of herself.
The other day, in the hour she felt well enough to play, Lilah began to do something...on her own...that She have worked so, very hard at. She was playing and I was, as always, trying to motivate and help her. I decided to let her think I wasn't there anymore. I still had my camera on and ready...and I got it....AND....She did it all by herself.
She pushed herself up and moved her foot out of the way and held this position without complaining.

She did it!
She got up on all fours.
I was SO glad I kept the camera in my hand.
GO LILAH GO!
She is SO close to crawling. She moves backwards...but cannot quite figure the front out yet. Today at PT we worked on more moves to try to get her going forward.
There will be some major happy tears when she finally crawls; for we know how hard and how LONG she has worked to make that milestone. But while we wait, we will praise her for what she has already accomplished so far. Man o man...she has come so, very far!


Wednesday, January 27, 2010

Absence

I apologize for my absence in updating. I have TONS of pictures to upload and edit and stories to share...but...there has been lots going on in our home.

SICKNESS!


Lilah has been sick for 12 days straight. Fevers. Diarrhea. Breathing Treatments. MEDS upon MEDS upon MEDS.

In the midst of that the older three got the stomach bug this weekend. One started..and the rest kept on and on and on. I have been crazy disinfecting, cleaning, etc. The older three are better, but Lilah...she has progressively gotten worse.

Friday to Sunday I gave round the clock Motrin and Tylenol to keep her 102.8 temp away.Monday I took her back to the pediatrician. She was given a breathing treatment in the office. Her o2 stats were 93-96 before the treatment. After...99. Her WBC was 21. 3 times the normal.
Lilah had a shot of Rocephin. Then more meds were given.

Yesterday she was better for about 2 hours. THEN...the moaning started again. Miserable. She was just miserable. Last night at 11:47- diarrhea again and the fever came back. I gave her motrin. I rocked her back to sleep and prayed for her to get well. At 5:43am...another diarrhea diaper. Wheezing. I gave her a treatment, tylenol and began to get VERY concerned.

I consider myself a patient person(Thank you God for giving me Lilah to teach me that quality even more so), but after 12 days. I had HAD enough of this.

I took Lilah back to the pediatrician today and she was given another shot of Rocephin. Her diarrhea is so bad that....well, let's just say that the diapers aren't working and her hiney is very red and swollen. So, meds to stop the diarrhea. Meds for her hiney.
Here is a list of Lilah's daily meds:
  • Oral Antibiotic
  • Lotemax-eye drops
  • Truspot-eye drops
  • Singulair
  • Albuterol
  • Pulmicort
  • Axid
  • Mix for her sore throat
  • Immodium
  • Nystatin..for the bum

I am praying that WHATEVER this is will leave her body once and for all!!

I promise to update the stories and pictures soon...but Lilah needs me.
Thank you for keeping her in your prayers!

Sunday, January 24, 2010

Sorry!

I am so sorry I haven't updated!

My home has been invaded by the NASTY stomach bug for the last week. I will update soon!

MUCH LOVE and God bless!


Thank you for the prayers!!

Tuesday, January 19, 2010

No fun at all

Saturday Morning Lilah began having difficulty breathing. I got her nebulizer out and started treatments. She was running a 102.7 temp. I gave Tylenol and then three hours later...I gave her Motrin. The more I did the less worked. I did treatments all day and into the night. Every two hours I was filling the vile with Albuterol and giving her a treatment. Her fever wasn't breaking and she was still wheezing...and miserable.


Nothing worked!


Sunday Morning I took Lilah to the Urgent Care center. They listened to her, watched her o2 saturation, and said she needed to go to the hospital right away.


I immediately rushed Lilah to Memorial Hospital.

They took her quickly to triage and started treatments. Albuterol, then fifteen minutes later...Duoneb, then albuterol again. In the minutes between the treatments they ran tests. A chest X-ray, an IV started and blood work to see what her WBC was. The ER doctor, residents(MMC is a teaching hospital), and my pediatrician decided Lilah needed to be admitted.


The Respiratory Therapists did breathing treatments with chest compressions every two hours.

Sunday night was one of the longest nights. Lilah moaned, cried, screamed, and fought all night long. Her fever would not break. It was pure agony watching Lilah go through all of that pain and torture. I asked the PM Respiratory Therapist if they were going to do an RSV test on Lilah, and he was shocked that they hadn't done it sooner. So, at 4 am Monday morning the Respiratory Therapist put a long tube down Lilah's nose to her throat and suctioned all this junk out of her lungs. Lilah screamed and cried and tried so hard to fight them. But, we held her down and they took the junk from her lungs and tested it.

RSV negative.

So...

Chest x-ray was clear
RSV negative
Blood work normal
Stool normal

BUT...

Lilah still had a fever
Lilah was still wheezing
Lilah still had diahrrea

It was quite the conundrum.

After a VERY long night of no sleep...

The next morning, the nurse gave me all the fixings to give Lilah a bath...a sponge bath.

I don't know about you, but a shower/bath always makes me feel so great.

Lilah is like her Mama...

We were so tired, but really happy when Aaron came to the hospital with the kids.

Lilah LOVES her siblings. She smiled. Laughed. Watched and Listened.
Lilah was so glad to "feel at home."
But then..they had to go back home.

And it was just me and sweet Lilah again.
Lilah's pink eye really hurt her. She would rub and rub and RUB her eyes.

Lilah had such a hard time trying to rest.
My heart just ached for her. I hated watching her struggle so hard to breathe. Everything just took so much from her.
Thank God we are home.
Praying for REST.
Tomorrow...
We are going to Atlanta for her Ophthalmology appointment.
Praying that Lilah cooperates and feels better. She is so on edge right now that each movement makes her cry.





Hospitalization

Lilah has been in the hospital since Sunday afternoon. She had difficulty breathing, diarrhea, fever, pink eye, cough, moaning, and restless. I will update with more specifics soon.

Thursday, January 14, 2010

A drawing from Alex

Aaron and I have always been honest with Alex, Sammie, and Eli about Lilah's eyes.
They ask questions, they pray for her, they support her, and they love her unconditionally.
Alex is the artist. She loves to draw. She will draw pictures that amaze me.
The other night Alex was drawing and she brought me this:

Alex is wise beyond her 7 years.

Wednesday, January 13, 2010

I stand amazed!

My God is an awesome God!

Tuesday, January 12, 2010

At the right time!

I received an email this morning:




I have sat down to write you a couple of times but couldn't find words big enough or strong enough to convey what I feel. My daughter who is four was born with bilateral Peter's Anomaly. She has been totally blind pretty much since birth. We did the surgeries, but they failed. I've been reading your blog for a few months and want to say thank you for pouring your heart out for all the world to read. You have been able to put words to the heartache, struggles, and loneliness that come along with having a child with special needs. It's almost as if you've got a personal window to my heart. I didn't have a relationship with God until I had my daughter. It's amazing how something so small and helpless as a newborn baby has so much to teach. I think He brought me to your blog. So, THANK YOU. I truly hate that we are going through this, but there is comfort knowing we're not alone. You have done so much for me. If I can help you in any way, I'd be honored to do so.

Sincerely,
K B (to protect her privacy I kept her name confidential)
Florida

***Thank you for your email, K.B. I believe that the Lord knew I needed to see these words today. For me to know that I am not alone. ***
God sure works in AMAZING ways.

Want to know why I LOVE Lilah's PT...

Because she pushes her with LOVE!
She treats Lilah like a person...an individual..not a thing.
Laura loves Lilah and wants to see her succeed.
Laura has taught Lilah and I both.
Laura on the left and Catherine, her trainee, on the right

Laura,
I cannot thank you enough!
You are fabulous!
You help the Mamas and the babies.
We just LOVE you!
Thank you for encouraging Lilah (and me) every step of the way.
YOU ROCK!

Saturday, January 9, 2010

Praising HIM!

LOOK at her eyes?
Just look!
I just took this picture and I almost fainted!
Look at how clear.
How happy and FULL of life she is.
No surgery.
How can we explain this?
It is ALL God!
God is so AWESOME!

Thursday, January 7, 2010

She likes to move it, move it!

WATCH THIS:

video

GO LILAH GO!

A happy day :)


This morning at PT Lilah was on all fours and smacked the mat and moved forward to a toy. No, not crawling yet, but oh so close.
She is sitting up on her own. She moves from her belly, rolls to her side, pushes her arms up and moves herself to a sitting position. What took weeks...weeks to master...she is doing so effortlessly.
This morning she did so many beautiful things at PT. I am so proud of her for her accomplishments. She works so hard to meet each milestone.
So...we have to practice. We have some work to do, but I welcome it. The work is hard for her. It is hard to watch her cry and want to stop, but I lay down on my belly and cheer her on as she pushes herself to hold the position longer. The moments that she looks up and smiles at me ...it just takes my breath away. Lilah works so hard, and she still makes room to love as she works.
Good news today, and everyday!
God is and always will be...GREAT!

Wednesday, January 6, 2010

HONORING GOD

Let me begin by saying this: I love Lilah. I do NOT want to change her. NEVER! I want her and no one else. Read that again please. I will never ask God to change the GIFT He has given us. I am MORE Grateful for Lilah than I could ever express. JUST the way she is!

I began this blog as a way to keep people updated on Lilah's condition and progress. I began this blog at a time when I did not understand what was going on and why.

Each time I type, I pray and ask God to lead me with HIS words. I ask God to show me HIS truth. I pray that this blog is honoring the Lord. I pray that my words are a source of HOPE, encouragement, and help. All at the same time I will tell the truth. Never lying about the day to day feats, struggles, and JOYS!

This blog is about Lilah. It is also about me...for I am the one writing. It is about our journey together. On this journey we will have amazingly great days. We will also have days that are not so great. If I wrote each day about how perfect things are...I would not be honoring God. I would be lying.

Remember Job. He loved the Lord SO much that Satan was angry. Satan asked the Lord if he could tempt Job. He told God that Job wouldn't love HIM anymore if things were tough. God knew Job's heart and strength and HE knew Job would never falter. The Lord agreed to let Satan tempt Job. Satan took away Job's money, home, stuff, family, power...everything...and Job never stopped loving the Lord with all of his heart. Job asked, questioned, and didn't understand....but he never stopped trusting and believing in the Lord and HIS promises.

I pray that I will continue to honor the Lord with everything I think, do, feel, act, say, AND type!

For those of you who read, follow, and love this blog for what is meant for...thank you.

For those of you who do not agree with me, think horribly of me, persecute me, etc. I pray for you. I pray for your peace.

I will not second guess myself. I will pray, read, and trust in the LORD.

Lilah is my GIFT from the Lord. She has taught me SO much. About life. About LOVE. About my faith. About how AWESOME God is. 13 months ago I would've never had the courage to do what I do today.

Saturday morning I told a woman of Lilah's story. I told of her miracle. I told of the Lord's goodness. I told this woman about the struggles and triumphs of the past year and how God has changed me and my family through Lilah. I invited the woman to meet me at church that very night. I prayed the Lord would open the doors and path to allow this woman to hear the word of God that night. To my joy...she came to church. She sat next to me. As Cam, our pastor, spoke this woman grabbed my hand and looked and me and thanked me for the invitation. She told me it was JUST what she needed. She later sent me a text and said, "thank you. this is going to change my life."

I did not tell that story to boast. I told that story because I know I am honoring the Lord by what I write here.

If I can help lead others to Christ by this blog...then I am honoring God. That is my goal. That is my number one priority. Next comes honoring my family...meaning the 6 people in my home.

For those who persecute me for what I have written, said, done, etc. I will pray for you.

I will always write honestly here. I pray you will read it with an open mind and heart. If you do not agree with what I have written, you have the right to click away from this page.

Tuesday, January 5, 2010

OT Evaluation

This morning Lilah had her 2nd OT evaluation.
After the therapist played with her and watched her, she told me what level Lilah is on.
Lilah is at a 10-11 month level for Occupational Therapy.(pincer grasp, fine motor, etc)
Lilah is almost 14 months old.
Tara, the OT, said that this isn't "that far behind."
Which is reassuring...
BUT...
When your 13 month old is in the same room as another child younger than her, doing MORE than her...I will, as always, be honest...it stings. I get SO tired of the constant comparisons. OR people that say..."I thought it was JUST her eyes."
If ...IF you ONLY knew.
HOW hard.
HOW MUCH..
we work to meet each milestone.
It does NOT just "come."
But.
but.
BUT!
I LOVE Lilah. LILAH. I don't want another baby. I want Lilah. I don't want her to be anything more than what she is!
AND
THAT is good enough.
I don't want her to "see more, be more, think more, act more."
I want her to be all she can
BUT
I will NEVER change her.
Now...
I am going to go read the poem below
AGAIN
and cry
and KNOW that
no matter what anyone says or thinks...
She is my gift from the Lord and I love her!

Monday, January 4, 2010

Heaven's Special Child

Yesterday I received a be-lated Christmas present...

Heaven's Special Child
A meeting was held far from Earth,
It was time for another Birth.
Said the Angels to the Lord above-
"This Special Child will need much love.
"Her progress may be slow,
"Accomplishment she may not show.
"And she'll need extra care
"From folks she meets down there.
"So many times she will be labeled,
"Different, helpless, and disabled.
"So let's be careful where she's sent,
"We want her to be content.
"Please Lord, find the parents who
"Will do this special job for you.
"They will not realize right away,
"The leading role they are asked to play.
"But with this child sent from above,
"Comes stronger faith and richer love.
"And soon they will know the privilege given
"In caring for their gift from heaven.
"Their precious charge, so meek and mild
"Is Heaven's Special Child"
I cry each time I read it.
Lilah is my gift.
Scroll up and read it again.
Now...for those of you who have followed from the beginning...you know this journey has taken me through so many valleys.
You know that it has not been without bumps and bruises.
HOWEVER...
I am SO, very very very...
GRATEFUL for those bumps, pains, bruises, hurts, tears, loneliness....
I am walking closer with Christ today than I was a year ago.
Thank you God for MY Special Child...
Lilah is the BEST gift...EVER!
To Geri,
You hit the nail on the head. Thank you for finding this poem and knowing what my heart needed to feel, hear, and see. Many, many thanks!