Fear of the many unknowns

I want, first and foremost, to say that this blog is where I can express myself...tell it all, leave nothing hidden and be very transparent.

I feel led to tell it all, leave no room for questions, open my heart, and let you in.


Last week Lilah went back for her neurologist for a follow up. Dr. Moretz was concerned that Lilah was still not walking and only babbling some.

First Lilah will be having another MRI soon. Lilah's first MRI showed that there was an issue with her white matter and a "small corpus callosum." But, Moretz and another neurologist said that they didn't see anything wrong with her brain and they thought it was a radiologist mistake. Now, because of Lilah's delays she wants to repeat the MRI and see if the issues have increased, gone away, changed, etc. She is pleased that Lilah is improving, but doesn't understand why she is SO "globally delayed."

Next, Lilah will be seeing a geneticist in Augusta, Friday Sept. 3rd. Dr. Moretz said it would be a good idea to see if there is a rare genetic problem that is causing the delays.

A few days later Lilah had a function vision assessment. The teacher was very pleased with Lilah and said she is "so impressed with her functional vision." But she also said that she doesn't believe that Lilah's VI is the cause of her motor delays. She said, "I think there is another issue that is causing that."

I told Lilah's PT, on Tuesday, everything that has occurred and she said, "I believe that the geneticist will find something." My heart sank. WHAT? She said, "there has GOT to be a reason that Lilah does this?"( as she points to Lilah when Lilah lays her head down) Tears began to well in my eyes. I thought wait, she's improving, learning to cruise, getting stronger then I got really frustrated n my mind. I said, "you think something is wrong with her? Why hasn't anyone said anything before? We had a blood test that proved she was a normal karyotype. Why now?" I thought to myself..."she's worked with her for 15 months, we've done all these tests and NOW...just NOW she tells me that she thinks there is an issue with my baby?" To make matters worse, Lilah's OT walked up, saw me crying and Laura filled her in. Then Sarah said she agreed. She thought that there must be an additional problem. I just really don't understand why she didn't tell me before. I don't understand why no one in the medical community hasn't mentioned anything to me until now. I have been fighting, pushing, begging for tests...to see if there was anything Lilah needed...or if there were any underlying issues. I am just heartbroken...NOT because of Lilah...because I don't understand why no one will talk to me. I don't understand why it has taken them 21 months to tell me that they think Lilah has a "problem" other than her eyes. Now I feel like I have been lied to. I feel like no one is telling me the truth. Is there something, other than Lilah's eyes, that she has? I NEED to know. I need for someone to fill me in. I need to not feel like the therapists and Doctors know something I don't. THIS is MY baby. TELL ME....please, please, please....tell me if there is anything going on with her. I need to be able to help her. I need to be able to have a plan of attack and guide Lilah on her path. I need the knowledge and information. I need to know EVERYTHING there is to know about Lilah! I am her Mother. If there is an issue, diagnosis, anything....TELL ME!!

Why hasn't my pediatrician said anything?


I just don't know what to think.

What if there is another issue? Will it change who Lilah is? NEVER. Will I love her less? NO WAY!

Nothing could EVER alter my love for her.

I am just having SO many mixed emotions. Why now? what do we do? how will this play out?

If she has a genetic problem will she be able to have children? will it be one more limiting factor for her? is it one more thing for people to "make fun of her?" I just don't know. ONLY God does.



I am so weak right now. I am trying so hard to trust God in HIS plans for her. IS there a possibility that she could have no genetic problems? Could her brain be normal? Could she be ok?


I know, there is probably someone reading this who will want to say something like, "it could be worse" or " calm down , Katie, its just a diagnosis" or "stop complaining" or any other choice phrase. And you know what? I know those things. I understand them...very well. I also know that I want the BEST for my child. I know we all do. We all want our kids to succeed, live happy, problem-free, no pain, fear, issues. We all look at our kids and think, "how can I help them? and What more can I do?" Lilah is MY child and I will do all I can for her.


The bible says we can ask. We can ask for what's on our hearts. We can lay it all at the feet of Jesus. So I am... I am asking for normal MRI and normal genetics. I am also asking for strength and endurance. I am asking for TRUST. I am asking the Lord to help me trust Him in all His plans for Lilah.


I know that the Lord has the best plans for her. I know that Lilah is perfect the way she is. I pray for peace and trust.

I thank the Lord for Lilah. I thank the Lord for entrusting me with this precious gift. I pray that everything I do honors Him.

Thank you for not responding with harsh words of criticism. To be honest, I just can't handle meanness and judgement right now. I need support, understanding, and encouragement. I am human. I am having a moment of weakness.

Such a little woman

Talking and eating

I love her SO much!

In Atlanta

at Dr. Greenberg's visit, we learned new things about Lilah.

He dilated her eyes and saw more red reflex in her right eye than ever before. He asked me if she was still on Lotemax and I said, "you told me to wean her off" and he said, "um, yeah, slowly" with that look like I misunderstood him. I said, "I haven't given her a drop in over a month" He said, "well, they are clearer!" He told me to increase her patching to 5 hours a day. He assured Aaron, who HATES to hear Lilah fuss with patch on, that no matter how long we patch her left eye, her brain will always go back to it as the dominant eye.


We asked him if she would be able to be in a normal classroom setting and he said, "Most definitely. The kids I see who need braille are completely blind with maybe light perception and she is not that." He said that most kids who have visual impairments, like Lilah, don't even need large print like elderly adults. He said she would probably just bring the paper very close to her eyes to read it more clearly. He said she would "DEFINITELY" be reading print.

NOW...for the BEST part...........................

We asked him what he thought her acuity might be and he said, "I wouldn't be surprised at all if she was 20/80."

I said, "But, we were told that she may only be 20/100 to 20/200"

He said, "It could be that, BUT...I wouldn't even be surprised if she even measured 20/60."

I said, "without glasses?"

And He said, "We aren't talking glasses yet."

TEARS filled my eyes.

At what point do I drop to my knees and thank GOD for ALL he has done in my baby girl's life? Daily? yes. Hourly? yes? each minute? yes. EVERY second of my life? YES!!!


How do you explain a child going from TOTAL blindness to 20/80 in under 21 months? ...

GOD

I am typing this as fast as I can before I walk out the door to serve and worship at SCC. I have MUCH to be grateful for, much that humbles me...and I want to say...

THANK YOU!!!

I cannot say thank you enough to ALL who have prayed, ceaselessly...and will continue to pray for complete healing of Lilah's eyes. I cannot begin to thank those who have stood by me...through it ALL...who listen who let me cry..who hug me...who love me..and LILAH...without question.

I will be the one with my arms HIGH in the air at SCC tonight praising HIM most high...if you see me with tears in my eyes, hear me off key singing know that I really don't care... I am praising the LORD MOST HIGH...because HE is SO good!!!!!

Can I get a WOOP WOOP?!!!

O&M= AMAZING! LOVE Yinka!!! Can't wait to learn more and help Lilah grow!


Functional vision assessment went GREAT! Libby was VERY impressed with Lilah and said many times how good she thought her functional vision is.

In 3 days, from 3 different professionals I have been told that Lilah WILL be in a NORMAL classroom.


After the functional vision assessment Libby said that Lilah's "functional vision is GREAT... She WILL read PRINT....I am SO proud of her!"

PLEASE:

Stop what you are doing RIGHT NOW....get on your knees...thank HIM for ALL HE has done for Lilah and know that we are BEYOND grateful for the MANY continued prayers.

The LORD IS GOOD...ALL THE TIME!!

quick update..

This will not be the prettiest looking post, nor will it be the most descriptive. But, here goes with as much as I can fill in, in the next few minutes.

Much has happened. Many things are taking place. My fighting for Lilah is paying off!!

This morning she will FINALLY be meeting an O&M specialist. wooohooo!!! Then this afternoon she will be getting a functional vision assessment with from a VT from a different county(politics of the counties makes me SO frustrated!) with my Ga PINES rep who has pushed and fought and helped me so much. I cannot wait to see what they say about Lilah!

Lilah is now getting PT(physical therapy) 1/wk, OT (occupational therapy) 1/wk with Backus and 2/month with BCW(babies can't wait), O&M 2/month and Ga PINES 2/month.

Here is an example of her Tuesday this week:

• Speech 9-9:30 here at the house
• 9:30-10 drive to Backus across town
• PT 10-11 Backus
• OT 11-12 Backus
• Grab a quick lunch and drive back home. Lilah passes out in the car.
• OT 1:30-2:30 here at the house BCW

(in about 2 weeks I will add school drop offs, pickups to this)

We just got back from ATL 2 nights ago at 12:45am. I will post the details of that visit after today.

oh, and my baby girl is sick...again...

My thoughts...EXACTLY!

Click HERE!

I'm SO excited!

I just signed the papers....

Lilah will finally be getting O&M!

I can hardly contain myself!

Place in Space

****HONESTY ALERT****

Most people with "normal" vision don't understand why it takes Lilah SO long to learn a new skill.

I have heard enough people say, "I thought is was just her eyes" so many times that I can feel myself cringe. I have learned to take that feeling and channel it into a teachable moment.

So, this morning as I got Lilah dressed and ready to go for a full day of OT, PT, OT, and finally adding O&M through BCW...

I decided I would video about 2 minutes of how I help Lilah practice to stand, turn, pull her feet in and more.

Some of you may think I am being "tough" on her in this video...come spend 2 hours at PT and OT and then another hour later on in the afternoon of OT and see how hard we push her, work her, encourage her, etc. and then question me.

Lilah has a TON of fear. She doesn't know where she is in space. She doesn't "see" things like you and I do. She understands this world much differently.

Here is a small video of what we try to do at home to help.

(push pause on the music on the sidebar to hear)

Watching her cry like this....I must remain composed and her coach, but inside I want to scream out of sadness for her. Some days I want to take the disability away from her so she doesn't have to be afraid, so she can see and move and grow without such work, so people won't make fun of her eyes. Some days I think, "she'll get there on her own time" somedays I wonder, "will she?" and then some days I ask God, "why her?"

But...I don't stay in those places long. I am BEYOND grateful for Lilah. JUST as she is. I LOVE her...with every ounce of my being.

God gave me Lilah for a reason. Am I perfect with her? No way. Do I have a LOT to learn? OH YES! I strive each and everyday to help her, mold her, shape her, encourage her, and be an example to her.