Thursday, March 31, 2011

The glass is half full........

Actually it is empty......... Can you spot it? Here, a closer look.

This glass is infact empty.

This is SEVEN ounces Alex drank by MOUTH today.

This is the most he has EVER, yes, ever, like in 3.5 years taken in by mouth.

He hasnt accopmplished more than 68cc since he was a few months old, and he aspirated that so it doesnt count.

Facts: He never asks for a drink, but will willingly take a drink from this cup or a "nose" cup when prompted. 7 ounces doesnt even touch the fluid requirements for his weight. I kind of had to follow him around today to make this happen. Fact is, Im so proud of him:)

Tuesday, March 29, 2011

That is how he rolls......



He has the most adorable way of saying shoes and waffle. He seems to have a southern accent..... He does however, sometimes seem to speak a form of Japanese, with his southern accent........ He loves, loves, loves to go outside........ He goes to bed at 8.......... He loves to take a bath......... He can knock you down with his smile......... His favorite food is Italian......... He loves his dog........ He wants to be read to......... He loves to play with anything non toy, unless it is on wheels, then that is his fave....... He goes from 100 miles an hour to sleeping in his crib in a matter of minutes...... He has not said mom, momma, mommy.......... He is the baby........ And that is how he rolls.........

Sunday, March 27, 2011

How Jessica got her groove back........

I didn't go to the beach. I didn't find myself on the dance floor, or travel to Italy. It wasn't learning a new language, and trying new food. It was a simple Saturday with this guy...... To buy new curtains, you remember because of this guy........

To go see a movie.......
It was 6 hours alone with my man. A very rare treat in this time and place. It was therapy. Now I can get my groove on again. Making breakfast, cleaning up, doing laundry, vacuuming, picking up toys, finding the happiest way to get boys to do homework, reading, brushing their teeth, and aiming a more direct aim for the toilet. Yes, this is my groove, and it is back. At least for 6 more days........

Thursday, March 24, 2011

In

He wanted to go in that tunnel so bad. From the day he was born I have stood at his side filled with the need to help him. There wasn't much I could do to help him breath, so I red books on tape so he could hear my voice constantly. I sang to him. When he came home the first sound of unhappiness I jumped to his rescue. Whether or not he needed me to is another question, but the post traumatic stress of him almost dying stood in the way of me not being his constant crutch.

As I sat on the deck taking in the 75 degree breeze, I could see that he wanted to go in that tunnel. He studied it. He peered in a few times, then back out not sure if he could do it. IT took all I had not to run to his side, push and pull him, give him what he wanted, and fast. I had to sit on my hands. Half of his body made it in. I held my breath, then he came back out, frustrated. Biting my lip I tried to take in the blue sky and not notice that he wanted in that tunnel, he wanted to explore, he wanted in. I wanted to help.

Again, he managed to get in half way, and it seemed as though he must have been thinking about how he could get all of himself in without going out the other side. Turning himself in the tight space, maneuvering his big feet with those shoes, he struggled, I thought about helping get his shoes unstuck, but something made me just sit there and watch.





His hand reached out to touch the grass, maybe he was confirming that he had made it in.




Glancing out to see his success, not caring or aware of the enormous smile on my face.







He was in, and he was proud. Not because I helped him, not because I was proud. This was all his. He made it in and out on his own.
















Success, his and only his to hold.









Do you see what I see?


Friday, March 18, 2011

Memories

Some of my favorite memories are of sleepovers. As a child I never noticed this side of them though.......
but I wouldnt have it any other way......

Tuesday, March 15, 2011

Slice of cake......

In a perfect world I would own a cute whimsical bakery. I don't say this because I am a awesome baker, but in a perfect world I would be. I would have all the time I needed, while my boys played quietly in the perfectly green yard surrounded by picket fence, and I played with recipes all day long, in my cute little apron, kissing the boys as they chased butterflies with just a bit of flour on my cheek..........Can you see it?
Truth is, I make box cakes. I make them 4 times a year, and that is it.




















But this slice of cake was a good one.
The day was a little slice of life I hope Joel always remembers........
Now I have until August before I make another cake, lots of time to think about my next creation!

Seven years of Joel.......(turn music off at bottom of blog!)


Monday, March 14, 2011

7 years of Joel

Tomorrow Joel turns 7. This weekend we had a crazy pool party with 13 of his closest friends...
I remember 7 years ago today. It was a Sunday, real nice out. Adam and I watched Lord of the rings, and walked to the park with Noah. I had contractions most of the night while I watched the weather channel. Got in the car around 3:00 am and headed to the hospital. Adam and I walked the halls.....I got my epidural......my blood pressure dropped 70 over 20....They shut my epidural off......nothing was numb......7 years ago tomorrow my most painful delivery occurred, but our second son was born.....9 pounds 10 ounces......He cares about every ones feelings....He can make anyone laugh....He rolls with the punches.....and brightens the room with those eyes, and his smile!
We love you Joel, cant wait to feed you cake for breakfast in the morning!





Sunday, March 13, 2011

Meatballs, noodles, oatmeal, and other chunks of info!




I can not believe how quickly the change in Alex's eating is happening. Just the other day I was telling you about the meatloaf and mac n cheese Alex ate.


Last night Alex had meatballs, and spaghetti, again NOT PUREED!


This morning I thought if Alex can eat a meat ball the boy can have oatmeal instead of his usual cream of wheat. Yep, I was right. He ate an entire bowl of oatmeal, and a banana on the side.


I don't worry one bit about the boy and eating.


He eats, he eats a variety of food, he eats healthy food. Food from every food group including meat!


Next step getting him to drink, and I don't doubt one bit that it will happen.


This Tuesday we go see our nutritionist, and I am ready to make some changes that will get him drinking. I'm wondering if we can drop the 300 dollar a case that's 12 dollar per can peptamin jr from our world, and let the boy get his calories from his very balanced diet of real food!


I don't think I ever believed this day would not come, but I didn't know when, I didn't understand how, and here we are.


So unbelievably happy about these changes.


Thank you Alex for teaching me to take the good and the bad changes with grace and ease. You are a rainbow after the storm.


Tuesday, March 8, 2011

Diamond in the rough

So when you have a child that gets a diagnosis it leaves you with a number of new and trying responsibilities. To say it is rough really only scratches the surface when it comes down to it all.

When doctor genes sat down next to me in Alex's NICU room, and told me that my 8 pound 1 ounce baby had Rubinstein Taybi Syndrome, I was certain there was not anything good to be found. After swimming my way out of my self made murky waters, I have come to see the diamond in the rough.

While I was sitting on the couch with the doctor that day in September 2007, I did not know that I was suddenly "surrounded" by a new family. They were waiting for me, I was blessed with other children with RTS, other mommas of these children, fathers, and siblings, all who love someone with RTS, and who automatically loved my Alex, and my family.

All through my journey to where I am now, they understood, they had been there in the grief, and wonder. One by one we all reach that place where we no longer grieve, there isn't anything to grieve. We no longer wish, our wishes have already come true. We are a family, and these moments that we can get together are diamonds in the rough, or in my opinion- diamonds in the right.


This was just before we told the boys they wouldnt be going to school, but to the Wisconsin Dells!


The 6 hour car ride was surprisingly great! We have 4 awesome travelers.








The boys stayed wet, most of the time.........



















Addie, and Alex (sharing a secret laugh) Sheridon, and William (RTS brothers and sisters)




Alex and Max in the bath after Alex threw up (after a fall off the couch.)








Alex chillin in a little quiet corner of the crowded room...........

Oh my sweet Caden.........




My "Bird" and Pam, another warrior momma I get to know.




Just a few of the RTS family.........




I do believe this was the best birthday I have had in all my 32 years. Lots of time spent with my children, my man. and getting to know this side of my family.

Diamonds indeed..............................