Thursday, October 30, 2008

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

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.


Tuesday, October 28, 2008

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.


Monday, October 27, 2008

Picture Parade




















Tuesday, October 21, 2008

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.




Friday, October 17, 2008

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.



Thursday, October 16, 2008

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.






Wednesday, October 15, 2008

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.


Sunday, October 12, 2008

Such Cuteness Needs to be Acknowledged

This is what happens.....
when you take a nap
My boys, hamming it up
She's gorgeous even when she wakes up
GET READY, for some Faith cuteness




I wanted to Thank everyone for there thoughts and prayers. No longer in a funk. 
Love to you all.



Thursday, October 9, 2008

"Life is not about waiting for the storm to pass. It's about learning to dance in the rain.".

I wish I could dance in the rain, except all I'm doing is treading water , trying to stay afloat. Everything is moving so fast. The storm is here and I can't see the end in sight. I just want to gather the rain in a bucket and through it up in the air, but the wind keeps on blowing me over.

The lord has blessed me with so many amazing, wonderful things, but I can't seem to get a grasp of it. I have so many different feelings about Faith. I love her so very, very much and want to give her the best life possible. She has come so far since she has been home, but I can't seem to focus on those great feats. I'm stuck focusing on all the things she can't do.

Paris, Roc, and Rex have been a handful. I can't seem to find time to go to the gym and instead have been eating junk all day. It's hotter than hell outside and I can't seem to stay cool. Then theres soccer, practices three days a week and Saturday games. I'm tired and have so much to do for Paris birthday, but don't have the energy to do them.

All Right, so I'm in a total FUNK.

Here are some pics to make this post a bit more positive in nature.




Future Bikini Model
Enjoying the lake
Paris and Roc showing Faith and Rex how to use the computer


The picture says it all.

Playing her drum


Making a Fort
Yo Bro, we can sleep in the kitchen!
Paris showing Faith how to send an email




Sunday, October 5, 2008

Something fun

Do you know the #1 song the day you were born?
Go here:

Mine's "Midnight Train to Georgia" by Gladys Knight and the Pips

Damn that makes me feel old

Clickety HERE

Wednesday, October 1, 2008

All I Wanna Do Is......

Take a nap


Hang with a friend


Play with a worm


But I can't, because I'm watching my kids do it, and I'm loving every moment of it. Believe it or not, things are starting to settle down here at the Riggio house. Now that school has been in session for a few weeks, we have fallen into a nice routine. Well routine for us, chaotic and tiring, yes, but routine.

Faith is doing well with therapy. It's slow going, but going. She can now sit for 30 minutes +/-. She had her eyes check and the Dr. said her vision was perfect. However, she may have problems with her eyes crossing as she gets older, something with the brain and connection, not the vision it self. I am becoming more and more afraid that her issues are more life changing than i had anticipated. She is so, so delayed that I am realizing that such delays have to be caused by some kinda brain damage or genetic disorder, and that's scary. We go in for genetic testing in about two weeks, I'll keep you updated.

The other kiddos are doing well. Soccer is in full throttle, we spend alot of time at soccer practices and soccer games. Rex loves school and playing in the sandbox with "The Guys". Jayme is doing well. He's back at the gym and taking really good care of himself. I'm really proud of him.

As for me, i just wanna take a nap, read a book or find time to go to the gym. And although I can't seem to accomplish any of those things, I'm doing pretty well.