I don't get it...

The place that will be doing the "study" on Lilah's blood is only looking for one thing. Wait a minute here...I don't want them to look for JUST one thing. I want them to test for ...everything. I feel like I am talking and talking and no one is listening. I thought that Aaron and I made ourselves PERFECTLY clear when we said, "we want to know...whatever it is. Please test for everything."

When Lilah was 9 weeks old I begged for a blood test for Lilah to see if there was anything else other than her eyes. Cossio didn't see any reason to test for it, but he did it for my peace of mind. Little did I know that those 9ccs only tested for broad spectrum karyotype. Her karyotype came back..."normal." Normal is something that needs to be removed from the medical dictionaries all together. Really! What is normal anyway? Perfect legs, perfect head, perfect arms, perfect eyes? perfect? Our society has pushed into us all that we must "be" a certain way or "do" a certain thing in order to "fit in." A friend of mine once said, "in Jesus' eyes we are all the "in crowd."


I found out Friday that Lilah will have to have her blood drawn multiple times and sent to multiple places. Are you kidding me? There isn't one place that can test...for everything? So we must send her blood to Wisconsin for one test and then draw more and send it to more places. I hate this for her. I hate that I have tried everything I can and I still feel like its not enough.

Why haven't more Doctors suggested that she have these tests done? Out of all the docs we see...where is the continuity of care?

Have you ever watched that show on the discovery channel where they know there is an issue, but they don't have a "name" for it? So they keep looking and searching and coming to road block after road block and the Mother says, "I just want to know what it is so I can help her".......THAT is me.

I remember the nurse handing Lilah to me and I instantly knew that there was something wrong with her eyes. They kept telling me "no, she's fine"....18 hrs later I learned the truth. I feel like I can't rest until I know it all. What is "it?" How will this affect the rest of her life? Will it just be a "name" and we will finally know....someday...and can take a breath?

Today after Lilah's multiple therapies...blood will be drawn.


Why can't there be one place that tests for it all? Why do we have to put her through it so many times? Is there a way that our "system" could be better and more efficient? Sure seems like there should be a better way....

Hmmm...

My kids have a "thing" about being naked.

What is it about clothes that children hate?

Whatever it is...Lilah is pretty "normal" in really liking to be naked.

Something about this is SO cute to me.

Maybe this Mama just LOVES her baby...all of her!

Watch her WALK!

Prayer

Our family believes that prayer is a very powerful thing.

We know that prayers have been answered and the Lord has cleared Lilah's eyes without surgery.

We know that all prayers are answered...but the answers might not be the one we want.

We know that this is where trust, faith, and obedience must come.

We are praying for Lilah to have "normal" results from the geneticist and from the MRI of her brain and spine.



But, we must also understand that HE holds a purpose greater than we could ever imagine.

My friend, Dana, came to me at church last week and said, "I heard this song and all I could do is think of you."


PLEASE click and listen to this song:
Johnny Diaz "Waiting Room"


Dana was right. It is perfect for us.


We are asking for everything in our hearts for Lilah...but we must also trust HIM and know that we may receive a NO....

and we must find peace knowing that there will be a reason why.


I listen to this song and cry because I know that the lyrics are so true.

No matter what....HE holds a bigger perspective.


When I was pregnant with Lilah I prayed for my baby to be "healthy, 2 arms, 2 legs, 1 heart, 2 kidneys, 1 liver, 1 brain" and HE answered, "YES"


I didn't get "perfection" by this world's standards...I got MUCH better...perfection through HIS eyes!

I love Lilah. Thank God for her...all of her!

Staying focused

After we went to the geneticist, my mind began to RACE with questions, thoughts, emotions, etc.

Aaron and I are just overwhelmed with "what if" right now.

IF she does, in fact, have Peters Plus Syndrome

IF she has a genetic problem

IF there is something else

IF I have missed something in all the BEGGING for tests

IF I have failed Lilah in some way

IF I can do MORE to help her

Will a "diagnosis" ever change our LOVE for Lilah? NO. NEVER.

I want to know what, if, how, when, how much, what to do, when to do, etc. so Lilah will get what she needs. I NEED to know how to help her.

After all the emotions I began to realize that I am NOT trusting with my whole heart.

I want and NEED to know "what and if" so I can steer Lilah on the right path...

But.. I also NEED to stay focused on what is REALLY important.

THAT...

is

continuing to LOVE Lilah for who she is...

and

Do the best I can.

I look at Lilah and see LOVE, peace, strength, beauty, and I see God.

Little glimpses of heaven rolled into my beautiful baby girl.

We went to the park the other day and I watched Lilah as she was swinging...

She is happy.

She is LOVED.

She is beautiful.

She is patient.

She is AMAZING.

We are SO blessed.

Thank you God for Lilah!

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!