Sunday, November 30, 2008

Making up for last year, and paying it forward.....

This is how our house has looked for two weeks. Yes, we got the Christmas spirit early, but we had to make up for the lack of it last year.

I am also starting a new tradition this year, and you can help. I will be taking ornaments for the families in the NICU where Alex spent the first 6 weeks of his life, with a little note of hope tied to each one. There are 60 beds, so I need at least 60 ornaments, representing each family who will be spending their Christmas in the NICU this year. If you would like to donate an ornament you can contact me at If I receive an ornament late I will tag it for Christmas 2009, and take it with next years batch. If you live near me, please feel free to drop off an ornament anytime, with a note (NICU ornament). I'm not sure of the date I will be delivering the ornaments, it will be a week day, and it will be before Christmas. I cant wait to post about it, and thank you for supporting these families who's normal has been taken this Christmas.

Friday, November 28, 2008

Thanksgiving at the farm.

Let me start this post out with a little story. July 2007 was the last time I was at my parents house, I was pregnant with Alex. After Alex was born things went crazy (clearly), and once we were home it was too much to drive the 30 minute drive, just to have a crazy time there. It was just easier to stay home, and after therapy and doctor appointments, its really all I wanted to do........So as things have gotten easier, we decided that Alex's first trip to the farm (yes I grew up on a farm) would be his first good Thanksgiving. So here he is on his way to the farm.

Here is his first taste of pumpkin pie with crumbled pie crust.

A look at the farm. My home.

Castle Rock, (named after a place in Colorado) this is where we hang the Christmas star every Thanksgiving. At night you can see the star from all around in bright white lights, my camera batteries died or I would have taken a picture of it in the dark.

Hanging the star

The star

on top of castle rock.

Alex has started sticking his tongue out.

my boys.
We had a great Thanksgiving!

Monday, November 24, 2008

Eating update

Today Alex has feeding therapy with his Cheri. He is being exposed to many new textures, and is handling them like a pro. Our only problem, hes not hungry, so he doesn't care about eating, the good news is that he has the skills. He chews, he gets food off his bottom lip with his top lip, he swallows, and he doesn't gag on the textures we have introduced him to, like bites of Graham cracker, vanilla wafer, and crumbled nutrigrain bar.
So skills wise, we are good. Motivation we are no where.

Baby "D"

I had the wonderful opportunity to meet with a new RTS mommy and see her adorable little boy in the NICU yesterday. Oh my goodness was he precious!!!!

I need your help....If you are an RTS family and you speek spanish, I need you to help me. The father is looking for information in spanish so he can share it with his family. So, if you could contact me my email is Even if you have to write me in Spanish I can translate it.

This would be a great help to this new family just starting out on this journey. RTS is so rare that reaching out to others that get it, and live it, is life saving.

Tuve la maravillosa oportunidad de reunirse con un nuevo RTS mamá y ver su adorable niño en la NICU el día de ayer. Dios mío era precioso!! Necesito tu ayuda .... Si usted es un RTS familia y usted speek español, te necesito para que me ayude. El padre está buscando información en español para que pueda compartir con su familia. Por lo tanto, si usted puede ponerse en contacto conmigo mi correo electrónico es Incluso si usted tiene que escribir en español me puedo traducirlo. Esto sería una gran ayuda para esta nueva familia acaba de empezar en este viaje. RTS es tan raro que llegar a conseguir que los demás, y vivir, es salvar la vida.

Sunday, November 23, 2008

You should "sit" down for this!!!!!!

Attention all physical therapists....Close your eyes.

It may not be the "proper" way to get up and sit, but my boy has figured out how to sit up and play at his own leisure.
He has been able to sit for a long time, but only when I would sit him up, now he has free will!!!!!!
He has done it 4 times tonight, Id say we can cross this milestone off our list!!!

are you watchin mommy?

You are gonna be impressed

Im tryin so hard.

are you ready mommy?

here it comes, are you watchin?


The last time tonight was much quicker and a little more graceful!!!! Oh Alex I'm so proud of you!!!

Thursday, November 20, 2008

No more excuses, Be there

A year ago today, I hit rock bottom.

I had already seen my child fighting to live.
I had already watched his entire body shake from the oscillator.
Fighting so hard for each breath you could see every rib on his side.
I had already seen the doctor tilt his head back, open his jaw, and insert the breathing tube for the third time.
I watched the monitor show his heart beating 200 times a minute,
O2 sats in the 80's, dropping, 100% O2 and wondered if this was it.
I had already sat through a spinal tap on my one month old.
I had already watched a 3 hour, 5 attempt, picc line placement, blood all over his sheets.
I had already watched the 50th x-ray on his little body, the 100th poke on his heel for a blood gas, I had already waited while the doctors cut open his tiny tummy to put his intestines in a better place, I had already become quite the expert on sticking a tube in his nose, down his throat, into his stomach just to feed him a meal.
I had already heard the words delayed, and syndrome.
I had already been away from my family for 6 weeks.

A year ago today Alex and I were back in the hospital because of aspiration pneumonia. I was done, I was so tired, I had no hope. This was it for me, we were going to be in and out of hospitals forever. I had no time for Noah and Joel, forget about a happy marriage. I was alone, while once again the nurses were waking him up for blood pressure checks, here come the questions, here come the procedures, here come those med students........I was so tired.

I sat at his window watching everyone getting ready for Thanksgiving, I saw a parade go by, I heard the nurses talking of their holiday plans.
I knew the choir at church was still practicing to sing,
everyone I knew continued to get ready for the holidays, shopping, planning parties..............
My phone never rang, NEVER RANG. No old friends walked through the door of that room. In fact in the 7 weeks that Alex and I were in the hospital I had one visitor, family not included here, and I had never felt more alone.

Thanksgiving day I had dry hospital turkey for lunch, it was just me and Alex, and I had hit rock bottom.

I have learned a lot about my self this year, found strength I didn't know I had, and have learned so much about people. I'm not writing this for any one to feel sorry for me.
I'm writing this for anyone who is too busy to make a phone call, too busy to stop by the hospital. For anyone who is so caught up in their own lives to reach out to someone who may be at rock bottom today.

Yes the holidays are coming up, yes we all have our traditions. Yes we are all busy.
While we are driving to choir practice, Christmas shopping, being annoyed at our healthy kids, someone is watching their child fight to live today, a mom is so tired she simply cant focus on the enormous task in caring for her child. Families are separated for endless days. Do you understand what I'm saying here? A mom is watching her baby die right now, a mom is watching her baby fight to take a breath. Where are you? Do you know someone in the hospital? Go to them. People can sit in church and talk about love, then go home and wrap themselves up in their own lives.
God didn't mean go to church, fake smile, and talk about love, He meant go out and love. Be burdened by those who are suffering, not by your to do list. Be burdened for the sick, not by your Christmas solo, be burdened for the weak, not by your next shopping trip or Christmas party.

Start a new tradition this year, and reach out to someone who is hurting. Who is dying. Who is helplessly watching their child suffer, and there is nothing they can do but watch.

Meet somebody at their rock bottom today. Take the sting out of this.

If you know someone who has a sick or special needs child don't tip toe around them. Reach out, make yourself available, even just to talk.
If you know someone who is in the hospital with their child don't avoid them, I guarantee you they would like a visit.
If you know someone who has a special needs child make it a point to love on their child (with clean hands of course).
If you know someone with a sick or special needs child don't just say I'm praying for you and never call, write or visit.
If you know someone with a special needs or sick child don't slip out of their lives because you weren't sure what to do or say.
If you know someone who has seen too much, watched one too many procedures, waited for one too many surgery's, waited on one too many results, heard one too many bad diagnosis, reach out, be there. Yes it will take sacrifice of your time, you will probably be uncomfortable, it will take work, but you will bring someone out of their rock bottom when they don't have the strength to do it themselves.
Im so tired of people turning a blind eye because they dont know what to do, they are uncomfortable, and they are too busy, the truth is there isnt anything for you to do, but to just be there. BE THERE.

Happy one year healthy and out of the hospital Alex.......I'm so proud of you.

Tuesday, November 18, 2008

We are the same, I cant do this either.

Since I began this new normal, this incredible journey, this up hill climb, I have heard many people say "God never gives you more than you can handle", or "He chose you because He knew you could do a good job", and even "I know I couldn't raise a special needs child".

I hate to take the beauty out of those nice thoughts, but I cant handle this, I cant do this either. This is too big for me, but I have to do it.
Alex is my boy, of course I will do this, of course I will choose to handle this. I'm not some special creature that was created to do super things that others cant do.
It seems people find relief in saying they couldn't do it, so that's why God hasn't given them a special needs child. Like they get a free pass on raising a special child because they just know they couldn't handle it.
I'm no different than those people who think they cant. Well, the difference is I have to, and I choose to do the best I can.

Don't treat me like I was chosen, or I am better, or stronger, because I'm not. This is hard, I cant, I kick and scream, but I have to, so I will, and I will do the best I can every minute of everyday, not because I'm stronger or better, or can handle more, because I cant, but because I have to, so I will, and I will do the best I can.
We are the same.

Monday, November 17, 2008

the appointment

Half way there realized I didn't have his tubing to hook up to his mic-key button. Call GI, leave a message. Get there, they say he has to be put into the system before we can order a tube. Wait 25 minutes to get him into the system. Wait 3o minutes for the tube. Try to get 8 ounces of water in him in the 30 minutes I have left before I need to start his milk. Only get 4 oz in. Start milk while waiting for appointment. Alex poops....YAY for poop no matter where I am. Get poop on stroller. ALex puts hands in poop. Alex puts hand in my mouth. Wait for appointment to start. Waiting, waiting, waiting.......45 minutes later appointment, still feeding milk. Appointment goes well, Alex is moving forward. Finish feed. Walk to car. Alex throws up.


Genetics appointment

Off to St.Louis today for a genetics appointment. This will be the first time I drive to St.Louis without Adam. It takes about an hour and a half, I'm hoping Alex sleeps on the way down, because it will be his nap time, and is happy on the way back. DVD player do your magic!!!!

our geneticist is very good, in fact he is the head of the program. A few months ago he decided to focus on some specific areas of genetics, not including Alex's syndrome, but kept Alex as a patient. We are so blessed by all of the amazing doctors at Cardinal Glennon. Just the other day I actually talked on the phone with his eye doctor, how many doctors talk to us on the phone???? Lovin me some Glennon today!

I will update on our day later tonight!
Also, thank you for all of your encouragement and suggestions on our sleepless nights. Alex's ears have always checked out clean, and infection free. I looked in his mouth last night and a tooth is about to break through, it also appears that he has some back teeth that have broken through. I will be asking the doctor about that today. So much to think about, I'm just going to smile!

Saturday, November 15, 2008

Enduring all of this.

So we have taken a tiny, micro step in a good direction as far as sleeping at night. Now Alex only cries 5 out of 7 nights. It has almost been 2 months since my little man who slept 10 long straight hours at night left me, and was replaced with a little man who cries, sometimes until he vomits, sometimes until he goes back to sleep, sometimes if we pat him, and sometimes he is up ever hour. This has become the normal, we are sadly used to it, but it really adds to the pressure of our regular routine. Without adequate sleep I endure my days, I endure my nights, which means I am enduring my life.
Its 9:53 at night and he has been crying for 20 minutes straight.............

Thursday, November 13, 2008

Still feelin the love

I am still on a high from all of your comments, knowing how many more of you are out there taking care of your special babies right now. Its hard, its too hard, but we get up and do it everyday, over and over, and it makes me smile to know we are all behind each other. I look for you when I'm out, I'm sure to smile at you when I see you, I notice your little angels, and I say hi to them.

Have a good day today, smile while you are cleaning up the vomit ( like I just did), smile while you are measuring out the meds, smile while you tube feed, smile while you wait in the waiting room, smile while you check the o2 levels, smile while you do another round of CPT, smile while you pretend to play, but really its therapy and your back hurts, smile while you remember how easy it used to be......SMILE, because we are in it together.

Tuesday, November 11, 2008

Teaching anonymous about real, unconditional love.......PRICELESS

Signing into my blog, and reading all of those comments while "I got my hands on a miracle played in the background" gave me goose bumps...........This post is for every last one of you and your miracles! For each of you who may not have children or have typical children, but have a special place in your heart for these special miracles. This post is for you. It is also for you anonymous, look at the comments on the last post, these little miracles are alive, blessing the world with their every breath, and some of them have moved on from this life, but are still touching us with the lives they were able to live even for a short while.

As I did my daily check on Monday morning on the blogs I love to read, and
I (got to Abby Grace's blog, and I saw what anonymous had said to Tamara,) I was speechless. This person had the nerve to tell Tamara that she should have had an abortion. This person thinks that because precious Abby doesn't talk, or run, or take gymnastics that she isn't a blessing, that she cant feel love? That her life doesn't count? I am hurt that there are people out there that don't see value in our children because they aren't typical, because they have medical issues. This person actually called Tamara selfish because she didn't have an abortion.

The greatest gift is love,
Our children know what love is, they know what it is to be held, and comforted. Our children know love, they share love, we can see it in their eyes.

I knew something was wrong with Alex when he was inside me, I cant explain how I knew. The doctors told me everything was fine, I even had an amniocentesis to ease my need to know mind. I could have ended the pregnancy, and not risk having a child with special needs. I wouldn't have to tube feed, or go to all the therapy, and doctor appointments, I wouldn't have to wait on surgery after surgery to be over. I could have chosen to get an abortion, but it wasn't my life to take, and that was my very much alive child inside of me, and I would not be the one to stop his strong beating heart just so there wouldn't be tubes, and vents, and therapy, and special care. I didn't have an abortion, and now the world is blessed by Alex, warmed by Alex, made better by Alex.

Taking care of a special needs child is the absolute hardest thing on earth to do. It is continuous, minute by minute giving of your self. There isn't a drop of selfish in having a special needs child.

It is the greatest act of love, to smile and tell your child you love them so so much, and not get any response back,

It is the greatest act of love, to teach your child how to hold a crayon knowing good and well they will never write you a letter.

It is the greatest act of love to give your child tastes of food, just so they can experience it, knowing good and well they will never eat by mouth.

It is the greatest act of love to take your special needs child out to a party or the zoo knowing good and well they don't "enjoy" it like the other kids.

It is the greatest act of love to look your child in the eyes and talk to them, read them books, even though they cant be reached.

It is the greatest act of love to wrap your arms around your child, even though they don't hug back.

It is the greatest act of love to describe to them the color of the sky, the color of the leaves, because they cant see.

It is the greatest act of love to learn an entire new language because they cant talk, or hear.

It is the greatest act of love to wheel them to the park, because they cant walk.

It is the greatest act of love to choose life for them because they are living, precious, human beings.

It is the greatest act of love to get up everyday and do it all over again,
not because you are selfish anonymous,
but because you love that very special, precious, valuable, priceless, beautiful, uniquely perfect, gift that is your child, that gift is
Alex, Abby, Gavin, Maddox, Cohen, Poppy, Jacob, Addison, Will, Natalie, Max, Caden, Logan, Asher, Isaac, Annabel, Eva, Eliot, Madeline, Elijah, "peanut", Joshua, Addie, Sophie, Corey, Melissa, Frankie, Sawyer, Noah, Matthew, Emma, Austin, Hannah, AnnaKate, Mallorie, Magdalena, Mary Grace, Issac, Marissa, Zachary, Dakota Rose, Juliana, Kevin, Curtis, Lucy, Carpenter, Makily, Lillian, Philip, each and everyone of you who left a comment on the last post and so many more.

All of these children are changing the world, they are making people smile, they are a continuous reminders of what unconditional love is. That is what this world needs. It is what you need anonymous.
Don't tell me that these sweet babies names I just listed only deserved to have their lives ended because they are differently abled. Each one of these children represent love, sacrifice, and everything that is pure, innocent and good.

Monday, November 10, 2008

getting to know you, getting to know all about you.

I was just wondering how many of you out there that check in on Alex, are mommies or daddies to a special someone. I want to know you better.
The comments are open to anyone, so would you please leave a comment, and tell me a little about your child. Age, diagnosis, (if you have one), and what state or country you are in. Just say "hi I am the mommy or daddy to a boy who is 1, diagnosis RTS, future plans: to change the world, from Illinois, USA" .......something like that:)

And if you aren't the parent to a special child (not that your child isn't special) say hi too, I want to know all of you.

I see all those red dots on my map, I know you are there..........

RTS parents I want to hear from you ......ALL OF YOU!

Sunday, November 9, 2008

Comfort blanket, paci, mom's mouth?

So Alex has found a new way of soothing himself. At all times when I am carrying him, his two fingers go straight into my mouth. He doesn't have to look at my face to find my mouth, he just senses where it is I guess, and straight into my mouth his two fingers go. It doesn't matter where we are: the Y for swimming lessons, picking up brothers from school, the store, it doesn't matter who sees us, this is how we look all the time!!!!
And yes, that is how Alex's eye looks most of the time. It is constantly draining from the blocked tear duct, the doctor isn't interested in fixing it, until the next time Alex is under for another surgery.
And can I just say I love you all, all of you who emailed me, and left me comments. You mommas to special sweeties who know every detail of my life because you are living it too. I love you, you are my support, you are what makes me feel surrounded even though you are miles away. Thank you so much for your encouragement.......You are my paci!