Watch

I've been sitting at my computer trying to think about how I should right this post. I have all these great thoughts and analogies that I want to express, but I just can't seem to get it out.

As I was driving today thinking back to how my life has turned out, I wonder, was it all in GODS plan. Did I ever have control over it. I have four amazing children and I would love to have more. People who know my situation often say "Four kids and you want more. Your husband wanted two, for his sanity, STOP". So I wonder, my heart tells me one thing and his another. Do we have a choice. I mean doesn't GOD already have a plan for our lives. Whether it's four kids or ten!

I do know one thing, GOD just doesn't hand things out and says "live happily ever after". What am I to learn from my life, from my husband, children, etc...

Which leads me to Faith. GOD gave me a special needs child. I didn't want a special needs child nor asked for one. But that's not my choice. So as I'm driving in the car today, lost in my thoughts, I kept on asking myself, why me? Just about everyone I know who adopted a child, got a "normal" child, so why not us. I new the answer was in front of me, but I couldn't figure it out. What did GOD want me to learn from all this. I kept on hearing that little voice saying WATCH. Watch very carefully. WAS GOD TALKING TO ME!

Through Faith I've learned many things, things I never wanted to learn about. Like PT, OT, ST, SID, Hyptonia, Myopathy, Metabolic disorder, etc... I've learned that we spend a great deal of time looking at the big picture and sweating the small stuff.

I've watch my three older children grow, hit there milestones when they were suppose too, walk, talk, jump, hop, skip. Faith has yet to accomplish these milestones. I always thought that the down side of adoption was that I'd miss her first year, miss her first steps or fist words. Be carefully of what you ask for. So I sit and watch Faith, I watch her shake her head back and forth freaking out because she is on Sensory overloaded, I watch her roll all over the floor wondering why she isn't crawling or walking. Meanwhile, I hear a voice yelling at me WATCH, WATCH, WATCH.

So I came home from my sons soccer practice yesterday and in the mist of chaos, my Nanny wants to show me a video of Faith, so I stop and WATCHED. Check it out

Make an on-line slideshow at www.OneTrueMedia.com

Did you see what she did. She pick up that bib, what 7/8 times. Intentionally, purposely grab it, picked it up, played with it. Believe it or not that is a huge milestone for Faith. For 17 months, that child has never grabbed a thing, she's never held anything in her hand, she's never wrapped her hand around my finger or pulled my hair or throw a toy. Until yesterday.

So now, now I watch all the little stuff, all the stuff that means something. I no longer worry when she is going to do something, because she is doing something. She is growing and thriving each and everyday. I know that GOD doesn't just want me to watch Faith, I know that he wants me to watch and learn from all my child.

So right now, this very moment, I raise the LORD up and praise him for giving me the gift to WATCH and LEARN.

Excuse me if this was all a bunch of rabbling and really doesn't make much sense, but it is all very clear to me.

Genetic Testing

Quick update:

I heard from Cedar Sinai today and they got the results of one of the tests that were taken. The test was called a Microarray, it tested around a 1000 chromosomes to see if any had multiplied, split, etc.. The results came back negative.

Not sure how I feel about it yet. I mean it's good to know that all her chromosomes are in check, however, it also means that I don't yet know what is causing Faith's delays.

As soon as the remainder of the test results come in I will let everyone know the findings.

Picture Parade

Happy 8th Birthday Paris.

My first baby is 8 years old today. Boy does time fly. Paris is growing to be a strong, independent, outgoing, sassy girl, and so beautiful.

We love you so very much, Princess and hope you have a wonderful Birthday.

Geneticist

I don't even know where to begin. Jayme, Faith and I left the house this morning at about 11:30am, headed down to Cedar Sinai Medical Center. Luckily we hit very little traffic and made it to our 1:00 appointment in perfect timing. They wasted no time getting us into a room, measuring and weighing Faith. Faith lost a few ounces, which I thought was a little odd, but the doctors didn't seem concerned. We were then moved to a different room where another Dr. spent about a half hour asking questions about Faiths history, what little we knew, and our assumptions about her foster care and birth mother, her physical and cognitive delays, her hyptonia and Sensory Processing Disorder.

She left the room and came back moments later with Dr. G. He proceeded to examine her, which she hated and screamed bloody murder when he even looked at her. After about 20 minutes of blood hurdling screams, Faith fell asleep on my shoulder.

The next hour was spent discussing what may or may not be wrong with her.

Words like:

Myopathy

Metabolic Disorder

Chromosomes

Array test

Fragile X

Autism

Prader Willis

MRI

Rhett Syndrome

etc, etc...

Dr. G. is a world renowned Dr. who specializes in Genetic cranial disorders amongst other genetic issues. He's seen many kids with Hyptonia, Sensory Processing Disorder and Developmental Delays, however, he stated that he has never seen a child like Faith that will not grasp anything with her hands. He, like us was totally perplexed.

She finally woke up and he got to see the happy side of Faith. Examined her a little further, which she didn't mind, and then arranged for some blood work. The lab took 6/7 vials of blood, once again our precious daughter screamed as we held her down, but calmed as soon as I picked her up. Glad that parts over.

Dr. G is testing her for some very specific disorders at first. He is testing her for 3/4 disorders that would cause hyptonia, although he feels she has no other systems that pertain to those disorders. He is also testing about a 1000 different chromosomes to see if there is any discrepancies. He believes that there is a 10/15% chance that any of those tests will be positive and a 50% chance that we may not ever get a diagnosis. Should the test come back negative then we will see him again in 6 months and do some further testing.

We finally left Cedar Sinai at about 4:00 and spent 2 hours in traffic trying to get home. It was a long day. 

I am so very proud of Faith. She was a trooper.

This may very well be a process with no end in sight, but i know doing it will give me the peace of mind that I never gave up on my children.

Clippees

So I'm obsessed. Those of you that know me know that I'm always obsessed with something.

Do to Faith's very full head of hair, I get the joy of clipping it back. So I'm obsessed with buying these clips that cost anywhere from $1 to $2.50, so I thought I'd make my own.

Well they aren't very hard to make, but not as easy as I thought. Getting that ribbon glued to the alligator clip just so, takes lots of practice and some patience.

Here's a few pics of my first clippee. Yeahhh Me.

Testing

Testing, testing, 1, 2, testing, testing.

This is a test from the LORD. I think the Lord is testing me, I do hope I pass.

In the last week, especially in the last 24 hrs, we've experienced colds, eye infections, ants, ants, ants and lice, once again. On top of the fact that the week isn't over yet. Friday, Faith sees the Geneticist and Poppy goes in for an Angiogram. Then there's Grandparents day at school, I'm PMSing and have a headache. Did I mention that three out of the four kiddies have lice and are all home from school today because of it.

We went to church on Sunday and although the sermon is fairly vague in my memory I do believe the message was about "Drawing Near" to the lord, not just with words but with actions. Draw Near, Draw Near, Draw Near, keeps radiating through my mind. How one accomplishes such a feat, I am trying to figure out. With that said, I think the Lord is testing my PATIENCE. None-the-less, I think I'm doing really well. Ok, the headache is getting worse, but not intolerable.

This is by no means a pity post. This is simply my LIFE and I'm enjoying every minute of it.

Here's a TOAST to you all.