Friday, March 16, 2012

A Moment

Finally found where Dalton hid my computer after he wrote that last post, so I do apologize for my lack of writing! These past few weeks have been full of learning opportunities, lots of tears, and even more smiles. Being a Mommy has been so rewarding and I finally feel like I am getting the hang of it. I am sure every Mom has those days where you feel like you are doing absolutely everything wrong. You question every decision you make for your child, questioning how it will affect them. Then of course after the decision is made you beat yourself up for not making the "right one".
Our days spent in Doctors offices and with therapists are actually the days I feel the most in control. Surprising, I know. I feel I have armed myself with the knowledge to be able to advocate for Dalton and his special needs. Along with my teaching degree I feel I have rightfully gone to medical school as well. I find myself rattling off medical terms like it is nobodies business and people stare at me in disbelief. I promised Dalton that no matter how confused or overwhelmed I got from day one, I would fight for him to get him what he needs. I am proud when a therapist looks at me and says "Wow. You're doing a great job working with him", or "I can't believe you have already applied for that federal funding- I'm impressed." I know that when Dalton can understand it all, he will appreciate all the work we have put in to being proactive rather than reactive (a lesson I learned from my parents).
Right now we are seeing physical and occupational therapists working on several different things. We are working on his neck and leg strength in his physical therapy. Also, we are trying to help his little feet turn out using several different exercises and infant massage to assist us. In occupational therapy we are working on his inconsistent suck. I have started nursing (somewhat) but he is not taking to it as easily as we would like. He is making great progress in his weight but is still behind where he should be, not for long though! The cardiologist thinks that we will be able to hold off on his next surgery for another year or two. The hole in his heart is pretty large and the left side is always going to be smaller than it should be. We are monitoring it closely to make sure he does not get too stressed out or is working too hard while trying to eat. He will see a developmental therapist as soon as he starts to show any sign of delay (prayers this never happens!), but we are 100% prepared for when that time does come.
So, I named this post "A Moment" for a reason. This moment I speak of was something so special to me that I even hesitated to share it with everyone. But I feel that all of you have been such a huge part of the journey and have seen such raw emotion from me already that I figured, why not?
Two days ago it was right after his 5 a.m. feeding and Jonathan had just left for work. I laid down in bed and put him in the bassinet right next to the bed, hoping for a few more minutes of sleep. I reached my hand in and started to stroke his hair to help soothe him back to sleep. The next thing I know he gently took my hand and brought my two fingers to his cheek and just held them there. We "held hands" for the next 15 minutes or so and for some reason I just wept. I cried out of joy for what we have overcome and out of fear for what is to come. I love him more than anything in this world and never thought a love this big could even exist. I know that Dalton is a true miracle and a gift from God, sent here to teach many people so many amazing things. He has already shown me how to be selfless, determined, and grateful for everything we are given. To see what he has done in other peoples lives brings me such pride that he is my son. That was a moment that I will treasure forever in my heart. There was just something so pure and innocent between the two of us in that moment. It is so hard to get caught up with all the appointments and running all over town to get him here and there. I often find myself so stressed out about all of the stuff we have to do that I sometimes forget to enjoy those moments. This is my reminder to myself and all the other parents out there- take those moments and breathe them in, embed them in your hearts, and never let them go.

**This is my special shout out Thank You to my amazing brother, Kyle, and my little sister from my sorority, Alison, for setting up a special non profit fund for Dalton's medical expenses- Click here to find out more!. All of the donations are going to help us provide Dalton with the appropriate medical care he needs. You are all so thoughtful and we are blown away by the generosity of everyone. We love you all!**

Also, check out the amazing photos that Christy Martin took of our little family, here. I'm kind of obsessed!

My fav!

Monday, March 5, 2012

A Day in the Life - by Dalton

I'm so excited, Mommy is letting me write her next post! Yay! She wanted me to share with everyone what our day looks like. It's kind of crazy, hence the lack of postings. I promise she is not sitting around eating bon-bons, we stay quite busy! I will take you through what one of our typical days looks like. Here it goes!
Rise and shine! Good morning everyone. I usually fall back asleep for an hour after my 6 a.m. feeding. Mommy tries to get as much done during that time as she can, but I really don't like her to do anything without me in her arms so I try and wake up as soon as I hear movement. The picture you see here is me in my rock and play. It is the only thing I will sleep in and I like Mommy to rock it back and forth all night long. She likes the arm workout, I think. 
Mommy loves to bring me into her big comfy bed after I wake up. We like to lay and she sings to me. I smile and she goes crazy for some reason. I like to play the game where I pop out my binky then she puts it back in, she falls for anything! Ha!
Mommy puts me in this bouncy seat while she takes these really fast showers. The louder I cry once she starts the fastest she goes. It's very entertaining to watch! 
The Today Show is my favorite. While Mommy blow dries her hair and gets ready I hang out in my Boppy and watch Matt Lauer. I like to keep up with the latest news around the world. No big deal!
After Mommy is done getting ready, she likes to get me dressed for the day. I am finally starting to grow out of some of my newborn clothes, Mommy is so excited! I like to wear as many outfits as possible in a day so I try and mess as many up as I can.
Ready to go by 9:00 a.m. Record time Mom! I love looking at my guitars while in my carseat. My 6 fingers are going to be so helpful when I start my band. Okay, I am off  to the Doctors!
Here I am at my cardiologist. They put a lot of stickies on me so they can see how my heart is doing. I am such a good boy and I lay really still,most of the time. 
Mommy carries this cup with her and the more she drinks the more awake she is. I wonder if she will share?
Why do they keep taking my clothes off? Here we are at our second appointment of the day. Today at the pediatrician I weighed 8 lbs 14 oz. I gained my weight back! Yay! I love going to see  Dr.Reisman. Mommy asks him lots of questions so we usually end up spending lots of time with him and he doesn't even get frustrated with her. 
Even after a long day of appointments we still come home and do my exercises. These exercises are things that Mommy has learned from the physical therapists. I really like it when we do tummy time the best. 
While Mommy tries to get stuff done around the house, I like to play in my swing. I love watching the mobile and listening to the fun music. Usually they let me play in here while they eat dinner.
The most TRAUMATIC part of my day! I hate the bath. Why do I have to be clean? Mommy calls me a stinky boy after I dirty a diaper. I try to explain to her that this is totally a normal and it does not require a bath. She didn't listen. 
It's medicine time. I am the best medicine taker Mommy said she has ever seen. I have only spit it back at her one time. I have to take Zantac to help control my reflux, but other than that I have stopped all other meds! I am such a champ.
Looks like bedtime. This is my "I'm getting tired face". I'll go to sleep...for now.