Our life with an extra chromosome....

July 29, 2009

Tonight is the night...

for SYTYCD, which stands for So You Think You Can Dance. It comes on Fox at 8/7c, so you could try to catch it but if not don't worry I will post the best performances on here for people to enjoy.

Last week there were two dances that I thought were incredible and worth sharing.

Here is the first one... I couldn't find a video with good clarity that also included the beginning synopsis of the dance. The choreographer's name is Gloria Gibson. Here is some of what she said during rehearsal.... "There is no story, the story is you." "So the movement is epic, but it is secondary." "Don't dance it, feel it." "There is no thinking allowed in this room." "Don't be afraid of me embrace it." "Heavy is the crown Jeanine, I don't want to feel sorry for you I want to help you."




And here is the second...enjoy!



Don't they make you just want to jump out of your seat and dance all around?!?!?

July 27, 2009

Some little bits...

of what's going on with us.

I tried giving Griffin some goat's milk yogurt today ( he usually does soy) and he was sick for about 4 hours :( I think I started him off with way too much and maybe even still he will not be able to tolerate it.

When things like this happen man do my thoughts surprise me. I often times start feeling and thinking things that I don't believe to be true. Example, I get so angry and want someone to blame for this pain that Griffin and me are having to go through. All over food sickness?! These incidences leave me with a lot of things to figure out with myself.

Anyways, thankfully, the night started to move upwards and things got better.

In other news, Griffin has an emerging skill...he is really starting to isolate and use just his pointer finger to touch something, or do something, or close something. He also gets around now by ( and this might be hard to picture, I will try to get a video on here of it soon) from sitting laying on his tummy, like in the splits, to swing his legs behind him so he is now all the way on his tummy, to rolling, to doing the reverse, swing his legs back in front of him to be in the splits and then sitting up. Can you picture it? And once he is sitting he can scoot in a circle:) Big things are rolling in!

And I want to say Happy Birthday to a very special Aunt and sister, Jaimie we love you sweet girl.

Here are some pictures from the past few days...




July 22, 2009

SYTYCD = AMAZING

Ok I was a dancer and I have to start posting these just because I love them and they just do stuff to me. So you think you can dance is an incredible dance show that is out of this WORLD! Don't worry I will just post my favorite dances!

EEKS! I am soo excited to share this with you, the ones who maybe have never gotten a chance to watch the show!





Ok that link above was the only video I could find with good camera quality but it cuts out the first part that explains the dance and who choreographed it. The choreographer was Travis Wall who was a contestant on the show in its 2nd season ( he was my favorite) He is young and this is his first time choreographing for the show, so he was very nervous :) The piece was about two childhood friends that go way back, hooking up for the first time, so there is a lot going on, wondering if they should cross that step and go there, are they ready for this... What do you think? Let me know!



The beginning of this video introduces the dance. Here are some of my thoughts... Gosh Kupono just played this part so well...brilliant. And Kayla is beautiful. And the choreographer Mia, has been nominated 3 times for an Emmy award. She will be a legend. I love her, her work, her words!

July 19, 2009

Meal Time Is Now A Very Special Time






I am asking for grace to be given to me from you all before hand, OK? And I do not know who has the time in a day to read this lengthy post or to write one this long! Geez:)

SInce day one I have always been freaked out about Griffin's weight, weight gain, physical growth, all of it! For these reasons....

He was born weighing 5 pounds 2 ounces. He had to have major stomach surgery the very next day. He couldn't eat after this surgery for over a week. Once he did start eating it was from a feeding tube going in his nostril down to his tummy starting at 1 cc of breastmilk every hour. As he tolerated his feedings, meaning at the end of every hour when they checked his residual( the amount of milk in his tummy) by using a syringe and pulling everything out of his tummy into it ( and then they pushed it all back in) if this was half or less than half of the amount given at the previous feeding then he was considered "tolerating" his feedings and with enough toleration the doctors would slowly increase the amount of breatmilk given through his feeding tube every hour. So it went 1 cc to 2 cc all the way up to 60 cc given every 3 hours. I remeber when we took him home from the hospital after being there for 6 weeks, I sat in the back with Griffin and I was a wreck, he was soo small I was for sure sitting in the car seat would make him stop breathing! He came home on a feeding tube, I had to learn how to insert it because you had to change it every few days or sometimes Griffin would pull it out:) And then, sigh, after about 2 weeks of being home, Me and Matt decided to take out the feeding tube because now every 3 hours he was eating WAY over 60 cc, it was more like 120 to 150 cc! WOO, you go boy. But all of the docters were still very concerned about his weight gain and growth because he had a heart defect that should inhibit his growth . His heart was not very efficiient and had to work very hard to oxyengate him, so must babies with his heart defect were blue in coloring, frail, limp, and had a very hard time growing and gaining weight. Soo oOoo to this Mamma to hear all that paired in the same sentence as my boy, I was FREAKED out. Man did I push the food. I always got him to eat a ton. And everytime we went to visit his doctors they always told us that what his medical sheet described was never the boy they saw. He never was blue in coloring, never frail or limp, and did really well with weight gain and growth considering his heart. At 6 months he wieghed 15.5 pounds and in November right before his heart surgery he weighed 17.5 pounds. I was proud. At around one years old we started to try and get him to eat baby food 3 times a day. He did not like eating baby food, at all. He had and still has a huge love affair with his bottle. So this freaked out Momma who was determined to get him to eat, figured out that if I turned on Baby Signing Time, another one of his huge love affairs, then he would eat almost anything I gave him and tons of it!

So that is what we have been doing for about 6 months. 3 to 5 times a day I put his high chair in front of our TV with his show on and feed him. I know it sounds horrible. I really do not like TV and when I do, I like it in small doses. So I started to dread feeding time. And I musn't forget to mention that getting him to eat at a restuarant or on the go was impossible. SOOOooo

ooo.....This past couple of weeks I had a premonition that I needed to change things. I was tired of tricking him to eat. I wanted to let him come to terms with food and eating on his own. I wanted him to want his baby food like he wants his bottle. I wanted to feed him with him wanting it like I give him a bottle when he wants it.

I also realized (and this sounds very simple and I can not believe I did not think of this to begin with) that he never really saw me or matt eat. There was never any "meal-time lingo" to be heard either. He never saw me sit down at the table with food. He ate separately and then I ate separately. C'mon Melanie what person would enjoy eating that way all of the time, all alone. I started to think about it from his perspective. He had no idea what eating really meant or was. All he knew was that several times a day I strapped him into a chair and started putting things in his mouth. I always focused so much since day one on feeding him that I never even thought that if I feed me he might like it more. Soooo oooo...

Here we are turning a new leaf. I am no longer freaked out about his growth. He has normal check ups and if something is wrong the doctor will help me figure out what to do, but until then, I am no longer freaked. I feed him when I feed me. We sit down together at the kitchen table with no TV on ( occasionally a record might be playing and a candle may be lit). We talk about our meal. What kind of food we are having. Why we eat. What eating does for us. How goood it tastes. And we laugh and play games. And just interact the whole time, while we eat. AND....dah dah dah...HE EATS! All on his own, on his own accord, for his own reasons, because he WANTS to, and I no longer push him. When he is finished he is finished. And he has as many bottles as he wants.

Meal time is now a very special time.

July 16, 2009

10 feet tall....


On Monday we took Griffin to his appointment at The Down Syndrome Clinic at Texas Children's Hospital. He has an appointment with them every 6 months. Well this Mama was very anxious because sometimes I don't handle evaluations of him well. They tend to discourage me. SO knowing that we had to wake at 530 AM naturally I couldn't sleep.

And to my surprise and with much delight, I can say that the appointment was soooo encouraging. The doctor who evaluated him was so positive. Instead of pulling out these developmental charts and graphs that put Griffin in all these levels of development she focused on pointing out what he WAS doing and what skills she saw emerging very soon. Saying that she thinks he is doing great. So it seems like to her that if the child is developing, meaning he is developing more skills than he had 6 months ago, that the rate at which he develops is of lesser importance to her and I am telling you NOT many people I have encountered on this journey have presented it in this way. She also said, which I think all the time, that she sees in him through his eyes that everything is all there in his head, he just has a harder time figuring out how to get his body to do what his brain wants it to. So YAY to The Down Syndrome Clinic for being so positive and encouraging and loving, YAY to this Momma for having a different frame of mind going into it, and YAY to little Griffin and his fabulous development!

So for the rest of the day I just felt like 10 feet tall or something! Even though I was exhausted, I just didn't feel it. But in the afternoon all 3 of us took I think a 3 hour nap together in our bed:) The picture is of mine and Griffin's sleepy eyes at the end of our beautifully long day.

July 15, 2009

Say Cheese!







On Sunday Me, Matt, and Grammie (Terri) took Griffin to the Butterfly Center at The Houston Museum of Natural History. We stopped for lunch before hand at Katz Deli and snapped these cute photos :) Griffin loved all the butterflies and I don't think bubbles are near as fun anymore since we have discovered butterflies!

July 10, 2009

The start....


Ahh..I have wanted to start a blog for some time now.  For many reasons I suppose.  One to have a way to look back on things that will make fond memories more clear, two to hopefully gain support and encouragement through out mothering, and third because I think writing is helpful and insightful.  But for all the reasons to blog I have reasons to not.  It is a miracle if I get to shower and eat all in the same day :)  So to add blogging to my life seems like I am just setting myself up for un-done to do's.  But tonight I felt inspired to write and share so here it goes, who knows this may be the first and the last, but I will just have to see where life takes me.  


Griffin is now 17 months old.  He does not crawl yet, or walk, or talk, or eat on his own.  So many days I am all tangled up in concern for these things to happen.  But also soo many days I let it all go and hope and believe that it is all ok, he will be fine.  I really think he will do all of those things on his own time.  He still has a lot of life ahead of him with plenty of time to achieve those things.  Secretly a lot of my worry is rooted in selfishness.  I think, "Oh my life would be easier if he could walk, or if he could feed himself".  So where my heart has been changing lately is in the area where I give myself away.  I am trying to revel in the beauty that I often miss.  


Tonight was going so rough.  He didn't want to eat, he was getting bored easily, he was screaming a lot, the house is a wreck.  I didn't know if I was going to lose it also.  I decided to set up his baby pool for him to play in because I knew most likely he would enjoy that, and he did.  I then just sat and breathed for 45 minutes.   The night continued on.  But it did take a wonderful turn.  He was so very sleepy and it was about 9 30.  He couldn't get comfortable on me at all so I decided to just lay him down in his crib and see if he could get comfortable with out my help.  Well instead he rolled all over the bed babbling making all sorts of noises, happy as could be.  I left him to his hearts content and turned on the baby monitor to go use the restroom and do a few things around the house.  When I came back to check on him 10 minutes later, he was sitting up!  That is a really big deal!  He has never sat him self up on his own before.  He is a really great sitter but I always sit him down or up or however you want to look at it.  


So this is for you Griffin.  The advocate that I should be for you all the time.  Griffin at 17 months, you sat up on your own from lying down, you roll all over the place, you push up with your hands while you are on your tummy, you pull up your knees underneath you when you are on your tummy, you babble and make all kinds of beautiful sounds, you can drink through a straw, you can eat baby food off of a spoon, you can drink your bottle, you sit up so straight and strong and sooo well, you scoot in circles to get to certain things or look at certain things, you can wave bye bye and hi, you are getting two teeth in, you bang two objects together, you dump toys out of a bucket and put them back in, you press buttons to make a toy light up or sing, you roll a ball back and forth, reach to be picked up, you can pull up to stand (with mommy's help), you can pour water out of a cup, you make the best "duh" sound, you give mommy and daddy and your stuffed animals the best kisses and hugs, you open and shut things, and so much more that I know I am overlooking.  But you do and will do way more than you don't or won't.  I love you.