In less than 3 weeks..

We will be heading back to Atlanta to see Dr. Greenberg.

Normally, I get very nervous before Lilah's visits. I wonder, "What will her pressures be?" and "Will he be able to get accurate readings?" and "Will she scream her head off?" and "Will he see the difference that I see?"

After realizing that these thoughts and questions are "normal", "warranted", and "OK".....I don't like that the "what ifs" creep in sometimes. I know in my heart that Lilah's eyes are clearer, straighter, focusing more, giving her the ability to "see" more than we had hoped for. I also know that no matter what happens and what is said....Lilah will always be perfect in God's eyes. I think back to the comment that Dr. D gave us when she was born, "God didn't make these eyes right."

Really? God didn't make them right?

I don't agree with that statement. I don't agree with Dr.D. I believe that the Lord knew EXACTLY what HE was doing when HE made Lilah...and her eyes.

Are her eyes "perfect" by the world's standards? no. Are her eyes cloudy? yep. Do her eyes move? yep. Do her eyes turn in sometimes? yep. Does she work hard to see what others take for granted? MOST DEFINITELY!

I am at such peace with Lilah. I am at such peace about who and what and how she is. Psalm 139:13 "For you created my inmost being; you knit me together in my mother's womb"

Do I know when or how this peace came about? no. Do I know that I still have more questions? sure. Do I know that it is OK to ask, question, and wonder? yep.

At this next appointment we will see if Lilah really needs her Trusopt. (pressure control drops) Dr. Greenberg wants us to stop the Trusopt about 3-4 days before the visit so he can get an accurate reading of her pressures without the drops. Am I a tad nervous about this part? Not really. I know that the worst that can happen is that he says she needs to stay on the Trusopt. 4 days will not make her pressures go crazy.

I believe that Dr. Greenberg will see great things this visit. Will he get all excited, like Dr. Lee does? no. That's not his personality. Now, if he does, then I will get excited!

The only way I can describe this peace is to tell you that the Lord lives in me. I feel HIS presence. I see the wonders HE has created.

Have I been scared out of my gourd before? yes. But that is OK. I am human.

Will I be scared again someday? sure. Will I stop believing that the Lord God Almighty doesn't know and see and hear it all? never.

Jeremiah 29:11

New Adventures

As Lilah is growing and changing, her fears are lessening.

Lilah was VERY tactile defensive. She wouldn't put her feet on different surfaces. She wouldn't touch certain objects. But, at the same time she LOVED to put everything in her mouth. After making some changes, working hard to help her learn to adapt, and more...Lilah has done something GREAT!

Sammie had a "fun day" at school. Lilah decided, with MUCH encouragement from this Mama, to try something new...

She CRAWLED in the GRASS!

Now, for most of you who are reading this you are probably thinking, "big deal" but for Lilah THIS is a HUGE accomplishment.

She was SO proud that she decided to sit back and give herself a round of applause!

GO LILAH GO!


Here is a very short video of her awesomeness!

Thank you God for the little things in life!

*after discovering that my pictures were being "stolen" from the Internet, I have had to "tag" the pictures. I hate to do this on THIS blog, but it is necessary. Sorry if it may take away from the picture quality*

A little less conversation

Lilah's new PT, OT, OT, VT schedule can wear us all out sometimes, but...

The new schedule is really working.

Lilah is crawling all over the house, getting into all sorts of things she shouldn't...

and I am LOVING it.

To watch her blossom, go, get it, touch, feel, explore, learn...

delights me to no end.

I am so proud of her for her determination, will, strength, and grace.

Lilah is working SO hard, and man oh man it is paying off.

Lilah has impressed her PT so much that when we went Monday Laura said, "She's crawling beautifully." When we got Lilah into standing position she lifted and lowered her legs as if to begin to cruise. Laura said, "I am TERRIBLY impressed."

I am too.

Lilah is teaching me SO many things. Watching her work makes me want to be a better person. Lilah amazes me everyday. Thank you God for her!

Lilah"s new Orthotics

When Lilah's Pt, Laura, discussed orthotics for Lilah....I must admit... I was skeptical. I have followed other special needs blogs where there are descriptions of HATE toward them.

I told Laura that I was willing to do ANYTHING to help Lilah.

About 3 weeks ago Lilah was fitted for AFO orthotics. When I walked into Savannah Orthotics I thought, "I know that name."

Lilah's Orthotist is a friend of ours and member of our church. (THAT was a God thing, I believe!)

While Lee casted Lilah's legs she sat perfectly still and actually giggled at him a few times.

Lilah's orthotics came in Friday and I will tell the truth...

I LOVE them!

What I love about them is not the hearts, the cute pattern, the bright colors or the way it makes her tiny feet look bigger.

I LOVE what they DO for her!

Check out the confidence in standing!

I am so impressed by how well she has done.

She doesn't fight me to put them on. Its almost as if she KNOWS that they help her and she likes them. I put them on her Saturday morning and she pushed my hand away and stood, hands free, against the wall.
I am, once again, in AWE of how amazing Lilah is.

Cousins

When my sister visited we decided to let Lilah and her cousin, CJ, have a joined sink "tubby."

Water is such great sensory play!

TRUE crawling!

I am working on a TON of posts. We have had many AMAZING experiences. I will share soon.

THIS was too good not to share right away!

There is something about Lilah

Lilah is so gentle. She is so patient. Loving. Appreciative. A snuggler. Beautiful. My vocabulary for Lilah could go on for days.








I got a wonderful email from Merry. Merry watches Lilah at church on Saturday nights while Aaron and I volunteer and then worship.








Merry told me how much she loves reading this blog, but more importantly how much she loves Lilah.








Merry's words were so sweet...so heartfelt...so compassionate. Something she wrote about Lilah really touched my heart. I was so emotional over what she wrote that I needed to share her "truth" with everyone.





Here are some of the words she wrote:





"Lilah seems so happy and healthy and she is so beautiful. Anyone who is around her for any length of time, even if it is in he nursery on Saturday night, can tell that she is a very special little girl. "





Then she writes something so...PERFECT!





"I love Lilah's eyes..........I think they are the most beautiful color blue. I love to see how she tries to focus on you when you talk to her. Most normal sighted people won't even look at you like that."








Merry, you are absolutely right!








Lilah does take the time to look, understand, try, focus....see you. I am amazed at how a gorgeous 16 month old (16 months today!) will spend more time with you than most people.





I am so amazed by God each day. He knows EXACTLY what to give us.





Lilah is my gift! My love language is Quality Time....and boy oh boy does Lilah give you QUALITY when she spends time with you. She will ponder you, focus intently on you, touch you, giggle with you, but most importantly Lilah really loves genuinely and completely without condition.





To me...Lilah IS unconditional love!