Happy 10th Birthday Travis!

Dear Travis,

Ten years ago today, at exactly 13:13 on June 13th...you made me a mother when your 8lb 9oz, 22" long little body made its appearance into this world screaming like crazy. You changed my life in a way I never expected, and I have loved every minute of being your mom. At 10 years old, you are 4'8" tall and weigh about 71 pounds. I firmly believe there is not an ounce of fat on your body. You are one lean kid! You are so athletic, and baseball and running are your current favorite sports. You also enjoy basketball and golf and cub scouts. One year left of both elementary school and cub scouts! Fishing is your other love, and I think you'd fish in a mud puddle if you had the opportunity, because you love it just that much. You know more stuff about boats and fishing than I will probably ever know in my entire life, and you are only 10! You love being outdoors and being active.

You work very hard in school, and get great grades, and we are so proud of you for all that you do. You are kind and compassionate to others, and have no tolerance for those that try to bully others. Your teachers love you and constantly tell us what a great example you set for others, and that just makes my heart swell with pride. You still struggle from time to time with backaches and headaches from your spinal syrinx, and we deal with those when they occur, but very very rarely does that ever slow you down. At 10, you have already completed two 5K races with great times. Currently, you and I go running together and you chatter my ears off about anything and everything as we run along.  And we laugh together about how we pour water all over ourselves, because we don't want to stop to take a sip, so we do it while we are running and it goes everywhere.

Your first 5 years, you enjoyed as an only child. Then, along came Riley. And while I knew you would be a good big brother, and love him, I had no idea just how GREAT a big brother you would be! Riley worships the ground you walk on, and for good reason. You are so good to him. Sure, sometimes, the two of you bicker with each other, but that is rare. You take such good care of him, and play with him and tolerate his busting up your lego creations and all the other little things that he does that could easily upset you. You are teaching him all about how to play baseball, and when he starts t-ball this fall, your efforts will be noticed, I am sure.

Today, for your 10th birthday, we have a big surprise for you...yesterday, we whisked you and your good buddy Miller away to Charlotte, and you two had no idea it was going to happen. You were both basically told to get in the car and ride. Last night, we went to see Madagascar 3 and stayed in a hotel. This morning, for the day of your 10th birthday, we are going to Carowinds, which is a theme park that is full of ROLLER COASTERS and other rides and a water park also. Saturday, we will have your party where everyone else will celebrate you with us.

It's been a great 10 years buddy. I am so proud of the boy you have become, and you make me more and more proud every day.

I love you the mostest,
Mom

Here is a video look at 10 years of Travis, in 4.5 minutes. Enjoy!

Travis is 10! from Lindsey Souza on Vimeo.

Dec 15: Bisty May need food

Oh Riley...you are a sweet little thing. You do love your Misty, or as you call her, Bisty May (Misty May). The last couple days, you have taken an interest in taking care of her, and I am all for encouraging that! You bring her empty, or near empty water bowl to me and say "Bisty need watah Mommy", and I fill it up and take it back to her spot, and you SCREAM at the top of your lungs "BIIIIISTY MAAAAAY, watah!!! BIIIISSSSTYYY MAY!!!". Finally, she saunters up, and you point to her water. In the process, one of you (I vote you), dumps the water out. Then, you come to me and say "Pape Towl Mommy. Riley clean it". I see the flood of water in the laundry room, hand you a few paper towels, you go wipe at it a time or two, show me the now sopping wet and dripping into the kitchen and all over you paper towel and say "Dis nassy (this is nasty)" and throw it away.

But now...we have graduated to feeding little Misty. Who eats like a bird. But you seem to think, she needs to eat more, and have developed a plan to help her eat more.

Exhibit A:


And when caught...you just ignore our questioning and continue about your business.

Exhibit B:

Riley feeds Bisty may from Lindsey Souza on Vimeo.

Truly, this is so you right now. You are loud, and rowdy and rambunctious and mischievous.You are like Hurricane Riley...you blow through an area and leave destruction in your wake! Last night, you were ripping into Christmas presents under the tree. Tonight, filling our laundry room with dog food. What will tomorrow bring?

Happy 18 Month day Riley Bear!

Oh Riley. How has it been 18 months already? A year and a half since I first saw your sweet face. Oh what joy you have brought to my life these past 18 months, even through the heartache and worry. Seeing numbers on a monitor improve, just from the sound of my voice, hours spent rocking you, because that was the only thing I could do, hours spent staring at you, holding your little hand. And now, you repay me by offering up that little hand and saying Mom-mee when you want to either go somewhere that you aren't sure of on your own, or you need help accomplishing where you want to go (steps,etc).
You say so many words now, I can hardly keep track. You love to say "bi bo" at the Big Boat across the street. And you have a certain sound you make for Big Trucks too, although no one else would know that is what you are talking about but me :o) . You LOVE airplanes and helicopters when they fly by, and squeal and point them out and want to be lifted up high to see them. That 4 day old trip through the Carolina blue skies must have left a lasting impression on you huh? You also eagerly point out the moon, whether night or day and say "moo". You recently rode the carousel at the mall, and at first wasn't so sure about it, but then you loved it, and fussed when the ride was over.
You walk around with this little determined walk, and just entertain us all with the things you get into (or onto).
You love to lift your shirt and touch your belly and grin, just to hear me say "look at that good looking belly" and tickle it.
You are still calling Travis "buh buh",and he loves it. He doesn't care that you call him bubba instead of Travis, as long as you are calling for him.
You call Misty "doggy" or "pup-pee" and you just love her. You also love to tip over her water bowl and dump her food bowl. Stinker.
You call cats "kitty kitty".
You now say Mom-mee instead of Ma-ma for the most part, and dad-dee instead of da-da. You also have begun to say Mee-ma for Mema which she just eats up.
You can ask for milk (mi!) and say thank you quite clearly, although I have YET to get you to say please. Asking for you to say please just gets a stare, sort of like this one:


You still give dirty looks when told "NO" and say "no-no" back at us, sometimes before you are even told no, or will tell Misty "no no" when she does something wrong. You also squeal out with indignation when told NO or when removed from a situation you shouldn't be in. You have begun to hit in frustration sometimes, sometimes it is at a person, and sometimes furniture. That is ALWAYS followed by a dirty look. That gets another NO from us.

You recently threw a fit in the public library, including yelling, squealing in a "leave me alone and let me do it" way, flung books all over the floor, while mommy picked those up, you threw a chair across the area, while I picked that up, you climbed up on the table and was stomping on it. Needless to say, it was time to go after that.

You have a cute little dance.

You give BIG hugs, and wet kisses and love to point out noses, eyes (gotta be careful with that one!) and mouths. You love to take your shoes off, and I was afraid we had lost one not too long ago, but thankfully, it had fallen in the bottom of the stroller.

You love your little bear, and are still quite attached to your paci's. Usually preferring to suck on a blue paci and put a green one over your finger. That's how you roll I guess.

If I try and get you dressed on the floor, this happens:


You scramble up and try to run away, just because you love when I tackle you back down. We have had lots and lots of fun these past weeks while I have been home with you, as you recovered from your ostomy reconnection surgery. 18 months is such a fun age, and I just want to remember every moment about you right now.

Things like your long fingers

How your still very fine hair is finally long enough to cover your ears at times

Those cheeks!

How long and lean you are

And that personality and smile!




I LOVE you, you handsome and sweet sweet SWEET boy!! Thank you for being you.
Love, Mommy

14 Months

Dear Riley,

Today you are 14 months old! You are so busy and active, you keep us all on our toes, trying to keep up with you. You have discovered that you can let go, and stand by yourself in place,and you are quite proud of yourself for doing so. Sometimes, you just let go of the couch, or whatever you have pulled up on, and play with a toy while standing there. Other times, you let go, squeal loudly to get someone's attention, and then THROW your arms up in the arm and just cackle with laughter. That always makes my heart feel like it's going to just explode out of my chest with pride over you.

You have always been quite fond of Travis, but this past month, you have become almost inseparable from him. Wherever Travis is at, and whatever he is doing, is where you want to be. You will sit up on the couch with him, and play with toys while he watches TV or reads, for an hour sometimes. If he goes to take a shower, you take off down the hallway after him. If we aren't where we can be back there to watch you, we have to close the bathroom door, to keep you out, as you will try your hardest to climb over in the tub with him, and your pretty close to succeeding! So you crawl down the hall, and bang and yell at the door.

In other news, you are really starting to look noticeably chubbier lately. I'm sure it has to do with all the food you have been eating. You are an eating MACHINE, and frequently eat more than Travis at any given meal. And you're a beggar. If there is food being consumed in your presence, you totally expect it to be shared!

You have 9 teeth...4 in the middle up top, 2 upper molars, a lower molar (right side) and the two middle teeth on the bottom. You have discovered how well all those teeth make for taking "little bites" of other people's food. See the beggar comment above.

You have added to your vocabulary quite a bit, although all words and gestures are totally done on YOUR time frame. So that means, that after leaving somewhere/someone, you may not say bye-bye until your in the car. And then, you will wave like crazy and say bye bye for a few minutes. Othertimes, as soon as I get to Pauline's to pick you up in the afternoon, as soon as you see me you start waving and saying bye bye. I'm not shocked at your lack of predictability. It comes honest and you've always been unpredictable. You now can say "bye-bye, Ma-ma, Da-da, buh buh(brother), boat, book, ball, more (said frequently during meal times - more, more MORE!), kitty kitty and Pauline says you have said thank you, but have yet to hear that one! All we get is MORE MORE MORE!

Your climbing skills continue to improve. Not so sure that is a good thing. I actually feared your climbing out of the crib a few nights ago, but thankfully you are a little too short for that yet. Once you are a little taller, we are in trouble though. You are quite the houdini though.

Your 14th month will be spent enjoying the holiday season. I hope you are as amazed by it's wonder as I am amazed by you!

Love you always,
Mommy

Riley at One

Dear Riley,

Today is your very first birthday! I am in such shock that you are a year old. But I am oh so proud of you big boy. You have endured so much in your first year of life, and yet, here you are today, so full of life and happiness. The first thing mommy did when she opened her eyes this morning was thank God that I have the opportunity to celebrate your birthday with you today.

At one year old, you:

• Tip the scales at somewhere between 17 and 18 pounds. We'll have that number firmed up soon, but for right now, that will have to do.
• You are about 30 inches long.
• You still wear size 3-6 month clothes!! But for fall, we are making the move to 6-9 month, because you are getting too long for one piece 3-6 month sized stuff.
• You say Mama, Dada, Bye Bye, NoNo and maybe buh buh for brother.
• You use your hand to point out everything and say oooooh real excitedly when you do it.
• You now HATE your sippy cup and I think you'd let yourself starve before you would accept any sort of anything from a sippy cup.
• You have become a table food eating machine. You start saying NoNoNo when you see jars of baby food.
• You have FINALLY, at the age of one, learned how to crawl. As in literally, just the past couple of days.
• You have started cruising the furniture again.
• Since coming home from the hospital, you HATE baths. No matter what way I try to give you one...in the tub, with or without sitting in water, in the sink, in the baby tub.....no matter, you SCREAM bloody murder through it. You used to love baths. Kind of stumped as to what is gong on there.
• You are STILL a mommy's boy. Boy, oh boy, are you ever a mommy's boy.
• You hate sleeping in your crib. That's not new. You have resorted to pulling up to your knees, so that you look like your in jail, and crying while peeking through the crib bars. You also will say NoNoNo Mama when I put you in there. Heartbreaker.
• You have 3 teeth. 2 on the bottom, and 1 up top finally. There are 3 others up top that are on their way in, and 2 on the bottom. It's a wonder you aren't dehydrated from all the drooling you do.
• You have started napping in the middle of the floor. You will just stop what your doing, flop over and out you go. I kind of just let you do it. See the comment about hating to sleep in your crib. And you seem to sleep more soundly that way, and aren't as sensitive to sounds when you do. Weird.
• You still poke, prod, tug and yank on your ears when you are tired, bothered or upset.
• You are still a paci fanatic.

You are loved more than you will ever ever ever ever EVER realize.

Love,
Mommy

___________________________________________________________

We will be celebrating Riley's first year of life next weekend, and I'm sure there will be more to be said then. However, here are just a few pictures from his actual birthday today!

Trust

Well little one, you have managed to do it yet again...just when everyone thinks we know what the game plan is, and gets cautiously optimistic about it, you change it!

Your TPN and lipids arrived last night about 10pm and were hung. They were connected to your central line. We got you all changed and ready for bed, you ate one last bottle (3oz) and to sleep you went. Then you began passing a lot of gas, and it spooked us that maybe it was coming out your incision and not your stoma. We managed to verify that it was coming from the stoma, which is right where it should be coming from. Finally, we decided to try and get some sleep.

About 2:30am, your nurse came in and we made a note to ourselves to never let the nurse empty your ostomy bag. ESPEciALLY not at 2:30am. One diaper change, one bandage change, one outfit change, one bed linen change later, back to sleep we all go. Only to wake up around 5am to you fussing. One diaper change, one bandage change and one 3oz bottle later, you get settled back in for sleep, and then we notice that your armpit of your outfit by your central line is soaking wet. It was leaking.

We begin checking the connections in your line to see if maybe one was just loose, but they all felt ok. Then we could see that the dressing over your line and underneath the dressing itself was wet. We call for the nurse. This means a dressing change at the very least. That is kind of brutal on you because the tape that is over the dressing is so tough on your skin when it comes off. You scream through that. She then connects a syringe of saline to one of the lumens of your line to flush it. It pours out of your skin where the line inserts. Ugh. We know this means that your line is no longer usable. What we don't know is the "what now".

Surgery comes by 3 times pondering what to do with you. One of your surgeons is so frustrated with this latest development that he kind of storms out for a moment. We feel his pain. He comes back and is just exasperated and said that we are too nice. That is why all the bad keeps happening, because we are a nice family. So, they all debate amongst themselves. Both attending surgeons are brought into the discussion.

The decision is this:

They came up just a few minutes ago and took out your central line. They chose NOT to take you to the OR to put in another central line. They are trusting you to eat well. Without a line, you have no way to get even basic IV fluids for hydration. They are also trusting your small intestines to begin working like they should and start absorbing the nutrients you need. Without a line, you can't receive TPN and lipids for additional nutrition. They are trusting you to take your antibiotics by mouth. You were recieving them through your line. They are giving you gut-specific antibiotics to fight against infection in your belly. They are trusting that belly of yours to rid itself of all the yuckiness inside it, and get better.

They are amazed at how well you look. They are amazed by how perky you act. You have begun smiling and laughing at them and flirting with the women, etc. Their words...."he's a very strong boy. We are so thankful that he's a very strong boy".

So am I Riley Bear. So am I. We are putting a lot of trust in you being so strong. Please keep up the fight!

Happy 11 Month Day Riley!

Hi Riley,

It's that time again. Another month has gone by. This past month has been a busy one for you, and full of lots of change.

At your last weigh in 2 weeks ago, you were 19lbs,2oz and 28.5 inches long. Getting to be a big boy, but yet you still look like such a peanut sometimes.

Your legs are looking so chubby, and you have developed a double chin. I never get enough of seeing all that chubbiness, because it looked like for so long, you were going to struggle with weight gain, but yet here you are, looking fat and happy.

You have been teething BAD this entire last month, and it looks like there may be some teeth in sight finally. Your top middle teeth are so close to popping through now. When they do, that will mean you have 4 teeth. You haven't slept well at ALL this past month, and we are all tired for it! But your darn cute so that more than makes up for all the lost sleep.

You have made tremendous leaps forward in your crawling and standing/pulling up ability. You move around so fast now, that while we are waiting on our baby gates to arrive, we are probably losing weight chasing you around the house. Sitting still is just NOT an option now!

You learned to say NO this past month, but say it as "nonono" which sounds like nuhnuhnuh. You say it appropriatly, and not just babble it for the most part. If you are put somewhere you don't want to be, you immediatly say nonono and try and get away. Stinker.

You still say bye bye quite a bit and wave to EVERYTHING. You are sometimes too slow to say bye bye at the appropriate timing, but you will say it immediatly after the person has left, or we are in the car leaving.

You also say buhbuh which we THINK is Brother. Travis loves it either way.

You have gotten VERY vocal this month and your favorite entertainment is Travis. You LOVE your Brother. Actually, that one word alone isn't nearly enough to describe how you two are with each other, but it's the best I have to work with. He LOVES you too, and is just heartbroken that he will not be allowed to visit you in the hospital, but I have some things planned just for him that will hopefully make it more bearable for him.

You are willing to try more solid food now, although your favorite STILL seems to be pizza. You dont' even bother testing it anymore, you just start popping it in your mouth. Other things, get the one finger test, followed by a hilarious face, and then you either will continue eating it, or push it all off your tray. You can really make a mess sometimes!

You had a really great 11th month!

Your 12th month, will be full of challenge and pain for you, and I wish I could change that, but we just have to push on through this obstacle as we have all others. But I will be right there beside you sweet one, and I plan to be the last face you see before falling asleep and the first face you see when you wake up. Always remember, you are loved.

Love,
Mommy

One year ago today....

Dear Riley,

Today marks 1 year since the event that would determine the rest of your life occured.

This time last year....TODAY, last year, I was 32 weeks pregnant with you. And my placenta....YOUR placenta, the lifeline between your body and mine, began to tear away from my insides, which caused bleeding that alerted me to something being wrong. They called it a placental abruption. And it was potentially life threatening to both you AND me.

35 weeks. They told me I needed to make it to 35 weeks. 35 weeks and you would likely go home when I went home. They gave me shots in my hips that hurt so bad I literally cried out in pain, to help your little lungs mature, in case the medicines they were pumping into me didn't stop the labor, OR in case the abruption that had begun worsened and they had to rush me to the OR to deliver you at any minute. I was literally a ticking time bomb.

Everyday was ultrasounds and non stress tests and endless fetal and contraction monitoring. I had to stay in bed, except for the amount of time it took me to take a quick shower or use the bathroom. I watched TV. I browsed the internet. I read books and magazines. I laid and just looked out the window. I cried. I prayed.

I prayed that you would make it to 35 weeks.

Because if you made it to 35 weeks, you would be fine. I managed to keep you in to 37 weeks.

And one year later, you are now 4 days away from having yet another major surgery as a result of that day one year ago. The abruption robbed your little body of oxygen, and it protected your core...your heart/brain/lungs...which robbed your developing intestines of oxygen and damaged them. You were a ticking time bomb when you were born. Once food coursed through your body and hit those damaged intestines, the bacteria just fed on it and your body was literally eating itself.

I managed to keep you in past 35 weeks. You were supposed to be ok.

I am so, so sorry Riley.