Thursday, June 30, 2011

To publish or not to publish

That is the question.

I've been sitting on this post for awhile now, mulling it over in my brain and trying to figure out exactly what I want to say. I've been ashamed that I don't want to publish it and then ashamed that I'm ashamed.  There is absolutely no shame in what I'm about to say; yet I'm afraid. I'm afraid to take this leap into a new realm of parenting. In fact, it doesn't feel like leaping. It feels like the rug has been pulled out from under me and instead of leaping, I'm free falling and don't know where my feet will land.

If you know anything about the medical field, you may have already deduced from previous posts, that we are entering the world of special needs. We've been traveling the world of special health needs for two years and that was and is a hard enough journey. And we came up here thinking we were reaching the end of the road. We came up here thinking this is going to be hard as crap, but when we get home, all the doctor appointments will slow down. Well.....not exactly. Fears that were slowly starting to creep into our brains were confirmed last Wednesday. A day that I never hope to relive. I was called back into an unexpected meeting with social workers and a family counselor. After watching Owen and working with him, they think his developmental delays are not just a result of his health issues. They threw a lot of information at me, and I sat there by myself and kept waiting for the punch line. Then I kept waiting to wake up. Then I realized that this was neither a joke nor a dream and I kept waiting for the tears to stop. They didn't stop until around 4:30 that afternoon and then I think they only stopped because there were none left and my eyes were pretty much swollen shut. It was really pretty. They even kicked me out of the hospital to go for a run while Owen napped and I was hunched over on the treadmill holding my stomach and crying while running. Yes - I got some strange looks but at least I burned a few calories.

They told me about the four stages we will go through.
1. Mourning: grieving the loss of the typical.
2. Storming: Researching and learning as much as possible.
3. Performing: Putting together the best team of docs and specialists for your little one.
4. Norming: Accepting that this is your new life and it will be okay.

And it will be okay.

I thought I was moving past grief.
Last night I sat in the aisle of Barnes and Noble and looked at books hoping for comfort and direction and hope. My hands slowly crept back over my stomach as I hunched over and nosedived from storming back to grief. I suppose that's to be expected. Because while the books did have some helpful information; they also had a lot of statistics and scary stories. And I had to pick myself up off the floor and pray to God to remind me that Owen is not a statistic. Owen is not a scary story. He is my son. More importantly, he is God's son and he is exactly who God created him to be. He is a sweetheart who just happens to be wired a little bit differently than the typical child.

We don't yet know the extent of his needs and we won't know until we get a full evaluation from a geneticist and a neural developmental specialist. (Do I still hope somewhere deep down that they'll say these delays are a result of his health needs and lack of proper nutrition? Heck yeah. But I'm also trying to face the reality that there is probably more to this.) We do know that he needs services and interventions more than he needs a label. We do know that we've been told by doctors here and in Raleigh to start researching special needs preschools. We do know that he needs to go five days a week next year. So while I was already sad about sending one boy away to kindergarten; now all three children will be in school next year and I'm not quite ready for that. We do know that we have a lot to learn and so the journey has begun. The research has begun. Trying to learn the many many acronyms that go along with this type of diagnosis has begun. (That in itself is a full time job. Is it really that hard just to say the words?) It's like learning a foreign language while visiting a foreign country. And one that you never really wanted to take a trip to in the first place.

So if there is still so much unknown, why am I writing about this?

For myself. 
It's that simple.

I'm practicing saying the words over and over. Special Needs. Therapies. Early Intervention. Special Education. Developmental Delays. Cognitive Delays. Speech Delays. Feeding Delays. Low Tone. More specialists. Sensory Disorders. Pervasive Developmental Disorders, Geneticists, Etc, etc, etc.

What do I hope to gain by saying these things and telling people these things?

I hope to claw my way out of mourning and into storming.

I hope to sprint to the finish line of Norming. I'm ready to get there. I've never wanted to accept something more in my life. I want to move past the fears and the doubts and the unknowns of the future back into the world of trusting God that my little man is going to be okay - that our family is going to be okay. That this will give Emma Grace and Isaac an empathy for others that they may not have had otherwise. I'm ready to start learning the lessons we're meant to learn and to be able to say these words and acronyms without flinching. I'm ready to advocate for my son and provide him with the best possible future. The future that God already has planned for him.

"For I know the plans I have for you," declares the Lord,
"plans to prosper and not to harm you,
plans to give you hope and a future."
Jeremiah 29:11

God knows His plans for my son.

And that is the biggest comfort of all.

Tuesday, June 28, 2011

On our Way to that Burger!

He did not eat a hamburger today.
But he did eat two small bites of hamburger meat.
Can I get a woot-woot?!

My boy is making some serious progress. 
He's completely off baby food.
It's all about pureed table foods and even some chewables.
After 2 and 1/2 years, Owen is off baby foods.
That's worth some celebrating.

God is so good.

And in other news?
The bigs and Todd are still here and still making us smile.

And we sent Owen out to wake them up this morning and this is what we found:

And this may be the reason it took the diva a little bit longer to wake up than the boys:

Comfy, Isaac?

Donnie and Cinda are here spoiling us rotten right now.
They treated us to dinner last night, and today, Todd and Donnie took Emma Grace, Isaac, and Abby into New York City while Cinda went above and beyond the call of duty and helped me pin Owen down during some allergy testing. (Which came back negative by the way. Yay.) Cinda and I got to go meet another friend for dinner tonight and the time away from everything to laugh with good friends was just what I needed.

So to sum up, life in New Jersey continues.
Tomorrow is our half way point.
And even though I'm sure there will be more rough days ahead,
I'm so thankful for the day that was today.
I'm so thankful for the hamburger meat eating, no more allergen testing, and 25 pound weight victories of today.

Sunday, June 26, 2011

Best Surprise Ever!!

Owen and I were just heading out for a run yesterday afternoon when we saw a car that looked really familiar.

Hello Family!

Friday, June 24, 2011

Friday Night Fun

Some people hit the 25 pound mark today.
(It wasn't me....I hit and surpassed it a very long time ago.)

That person celebrated with his favorite activity before bed.

He also celebrated with a new pair of kicks from Payless.

Kicks with arches. 

Apparently he needs them.

Apparently he really likes them, based on the battle at bedtime.

Apparently they go well with clothes and pajamas.

I have a feeling they are going to be on his feet the minute he wakes up.

Happy Weekending.

Thursday, June 23, 2011

Choosing the Good

Tonight we're choosing to look at the good.
And believe me; it is definitely a choice.
And it's proof that your prayers are working. 
Because this road ain't easy, but I felt God's peace today.
I woke up and put on my "we totally got this" attitude and rocked it out all day.
I asked questions. I got answers and took them in stride.
I made phone calls. I filled out gobs of paperwork.
I talked to doctors here and in Raleigh. 
I'm prepared for some rough appointments and tests tomorrow and Monday with immunology and genetics.

And you know what? 
Owen rocked it out today too. 
Seriously. He was such a superstar. 

He wore his new shirt and took the saying (insert snack) to heart.
He's added a few new foods, he's starting to use his tongue a little bit better, and he only had one rough meal today. 
Just one. Out of five. 
He also only teared up a few times during physical therapy.
Yup - he definitely deserves the rock star title tonight.

And tomorrow is Friday.

And next week we get to see these people:

And their laughter and giggles and sojourn back into being a family of five for a week is just what we need.

And they'll be excited to see Owen doing some of this:

(smiling during a meal)

and some of this:

cleaning his mouth using his tongue and lips.

(instead of screaming and trying to scrape the food out with his hands.)

And I'll get to see him. (The tall one.)

And I don't want to make anyone vomit, 
but I really do miss him. A lot.

Yesterday while I was running, I had this really deep thought/analogy. I think we all know deep thoughts are pretty rare for me, so I decided to share it.

At the clinic there are one way mirrors that look into the therapy rooms.
I drop Owen off at 9:00 and just a few minutes later I'm standing on the other side of the window watching him, but he has no idea I'm there. When he's in OT, the only thing that separates us is a door. And a lot of times he's screaming my name over and over, waiting for me to come in and rescue him. And even though it's painful, I know he needs to go through this for his own good. And all he has to do is walk through that door and I would scoop him up in a heartbeat and kiss him and wipe his tears away. And I thought about how life is like that sometimes. We're screaming for God to answer our prayers in the way we see fit; we're screaming for Him to rescue us and when He doesn't, we feel alone. But really He's standing right there waiting for us to run through the door and let Him comfort us and give us peace through the storm. Because sometimes we have to go through the storm in this world. But we don't have to go through it alone.

Monday, June 20, 2011

Medical Mumbo Jumbo

Day 6 at the hospital was not easy. 
Not even gonna lie.
There have been some tears shed today, both his and mine.

There's a lot going on with this guy and I'll do my best to sum it up. Some of it I've already mentioned:
One big issue is that he's "low tone" which basically means he's gotta beef up those muscles. He's been in so much pain, that he's gone above and beyond to avoid using his abdominal muscles. (I avoid that too but not from pain.) This has led to clumsiness and he's overused one side of his back making it tilt to one side more than the other. They are doing a lot of exercises to work on these things and they are very unnatural looking. They are also using special tape that is supposed to help stimulate the muscles.
He has also been working doubly hard to protect his esophagus from pain by curling his tongue up in the back of his mouth and sucking in his cheeks to try to prevent food from going down and hurting him. So, they are doing a lot of oral motor exercises during feeding that should hopefully correct that issue. Today there was some major cheering when he used his upper lip to clean some food off his lower lip. (I know, it's really the little things in life isn't it.....)

He keeps breaking out in rashes all over, so they're sending us to an immunologist to run some tests and see if some of his cells are working overtime and producing too many of a certain "viral attacking" kind. I don't know too much about that yet, but at the same time as those tests, they want to test his chromosomes and see if there are any abnormalities there that could be the cause of all of his GI issues.
Needless to say, trying to process all this has been a bit overwhelming. I thought we would come up here, eat a hamburger, and go back home. ha ha. I wasn't expecting to find out more things that were wrong, both physically and possibly internally, but we're working through them.

So that's our medical update. I know I used a lot of big terms like viral attacking, muscle stimulation,  and cells; I'm hoping to have my degree soon. Hopefully you were able to follow along.

We did go into the city on Saturday and that was a lot of fun. After sitting in uncomfortable chairs at the hospital all week, the walking felt quite nice too. I had never been to New York before and the skyline was amazing. It was unbelievable and I hope to make it back there before we go home.

Here's Owen and I at the Plaza. Aren't we posh?

The boy has a love affair with this stroller. Seriously.

Nana and I may or may not have found a place that served $4 margaritas and we may or may not have partaken......

This is the cathedral where Todd and I will renew our vows one day. We may have to become a little bit catholic first though.

Here's what I caught Owen doing half the time.
Clearly he gets his manners from his father.

We all felt like crashing after the day,

so Sunday was more low key; we woke up and did some Father's Day celebrating from a distance.

Thankful for the great dad my kids have, the great dad I have, and the Dad that's giving me strength and courage when I need it the most. Hoping and praying that tomorrow is a better day.

Friday, June 17, 2011

Week One is Over!!

Woot Woot.

Our first week of St. Joseph's is behind us,
and I have lots to say,
so if you get bored or don't feel like reading this, 
here it is in a nutshell:

For those of you who have nothing better to do on a Friday night,
here goes:

1. I am really missing these people:

2. We are freaking exhausted. This was Owen before leaving for the hospital today. He's pooped and he screams now any time we head for the car because he doesn't want to go there. This morning the screaming was complete with laying on the floor in front of the elevator and screaming at me to "stop it." I feel so bad for him, but once we're there, he does get better.

3. This kid has worked so hard this week. Seriously. He has a lot more going against him than we knew about coming into this, and he's trying so hard to do what they're asking him to do. And it is not easy stuff.

4. The fact that there's even more impeding his eating than we realized both scares me and gives me hope. It scares me because we missed it and because it is going to take a lot of Occupational, Physical, and Feeding Therapy to fix it. It gives me hope because we've already noticed some great improvements just by changing his posture, placing the food in a different place in his mouth, and helping him learn how to effectively swallow food.

5. On Wednesday Owen was knocked over by a dog that got spooked in the elevator of the hotel.

6. The dog owner felt terrible, works for Toys R Us and bought Owen a TON of new toys to keep him entertained throughout our stay. Crazy nice gesture.

7. I thought "Drivers up North" were just a stereotype. I was wrong. I think there's a club you get to belong to once you've thrown out enough F bombs and honked your horn for ridiculous things, like say the stupid blonde Texan in front of you who waited 0.05796 seconds before hitting the gas at a green light. I think I'm only a few F Bombs away from joining the club. Keep your fingers crossed.

8. Mom and I keep getting a lot of weird looks followed by "where are you from?!" Maybe it's because we keep saying things like "howdy pardner" or How Y'alls doing over yonder?"

9. Mom leaves on Monday morning. I'm a little worried it's going to be a similar scene to all three times she left after our babies came home. You know - the scene where I'm bawling my eyes out and grabbing onto her clothes as she tries to escape? I'm sure the hospital staff will enjoy that show from the stupid blonde southern girl.

10. We're going into NYC tomorrow. I'm excited and a little bit nervous because I'm supposed to find a quiet place while there to conduct feeding therapy. It's like having a newborn again - he has to eat every 2-3 hours and it takes about 30 minutes to do the whole meal. Whew. That should be fun while trying to see the city.

11. I don't really have any more updates right now. I'll get more into all the medical jargon at a later time. Too wiped right now. Just know that we feel your prayers, we're glad the first week is over, and we have an exciting Friday night ahead of us. Nana went to dinner with her cousin, and Owen and I got into our pj's at 5:00 pm. Woot Woot. 

Before I sign off, here are some pics from our Bubbling Adventure/Facetiming with Cousins last night. (Bubble machine courtesy of Dog Attack Owner.  Facetime courtesy of Aunt Sarah Ellen.)

Love Lukie's face in the last one.
Goodnight y'all!

Tuesday, June 14, 2011

The Honeymoon Is Over

Today was long.
And hard.

Owen's definitely onto us.
He started screaming when we got in the parking lot, and when they carried him away from me this morning while he screamed my name, it broke my heart. (And yes, Cinda. I cried.)
But I know this is what he needs.

And he's a trooper. 
He is working so so hard!
Today they started occupational and physical therapy to work on various issues he has with muscle tone and abdominal weakness. I watched from the outside and it looked awful - like a super hard workout class that he didn't choose to go to.
Be he did it anyways with very little crying, which is more than I can say for myself during a hot yoga class.

He was so wiped out at the end of the day, but he cheered up on the way back to the hotel, so we did some swimming with Nana who is visiting for the week.

Thanks everyone for the sweet comments and emails.
You have no idea how much it means!
This is hard, but I am feeling confident and hopeful for the first time in a long time.
And that feels good.

Monday, June 13, 2011

Day One

is over.

And I'm glad for that.

Owen did fantastic.
He barely cried when separated from me, he was great through all the poking and prodding, and he did great with all the therapy.

The doctors and therapists here seem great and I really feel like we're in the right place.
I met with several different specialists throughout the day and they have some big goals for my lil' man.

They squashed my hopes of going home earlier than 4 or 5 weeks, but that's okay.
We're here and we're going to do what we need to do.
A lot of kids come here and the main goal is to get them on a large variety of pureed foods with different tastes. Because Owen is allergic to most foods, our goal is to get him to eat more advanced and textured foods that his body will actually accept.

They also noticed that his mouth is very "low tone" and he doesn't know how to use his tongue correctly, so tomorrow we start the hard work. I think he's up for it though. He's one tough kid.

And in case you're wondering?
Yes, he's still smiling tonight.

Go Owen, go.

Sunday, June 12, 2011

The Eagle Has Landed

Or something that means we've made it to New Jersey.
Leaving was the hardest thing I've had to do in a long time, but our spirits are good right now.
I could not have paid Owen to be a better travel partner than he was. 
(Which is a good thing, because I don't have any money left after paying all the annoying tolls. What is with the tolls up north? At one point I had to pay to exit the road and pee. So it cost me like $1.14 to pee. That's redonculous....and too much information.) Sorry.

Here's a quick tour of our new digs. The digs with granite countertops.
For realz.
I mean, I know it's only for the next month, but still.......
I have granite.

The Kitchen (with the granite):
Can you tell I love granite?

The living room with a cute two year old in it:

And last but not least, the bedroom and Owen's bed that he was most excited about:

And the best part of hotel living?
The elevator buttons, obviously.

And the second best part of hotel living?

He was a bit unsure at first.

Aaahhhh. Here we go.

Tomorrow's going to be a long day of doctors, testing, therapies, and I'm not even sure what else, but I hope to see this smile on my boy's face again by the end of it.

Good night.

Thursday, June 9, 2011

Ask and You Shall Receive

And you shall have fun building towers with your drinker of neocate upon receipt.

Thank you, UNC!

I'm officially still a State Fan,
but I no longer cringe at the sound of your name.