Monday, September 20, 2010

A Hopefully Typical Day

When this post actually posts, Benji and his brothers will be in our Expedition on the way to school for another wonderful magnificent Monday. (We believe in thinking positively. Our words are powerful)

Benji was adorable Friday when our family went to celebrate Uncle Marc's (and Uncle Frank's) birthday. As we were leaving he grabbed one of those cable internet mailing cards and decided it was Un Ma-cs birthday card "that you have to turn over". He was very animate about the card and I don't think I can explain it and give justice. For about 30 minutes he just wouldn't let it go.

Saturday, Benji has made a new friend that he thinks is just his own. We will call him T. The three boys had a WONDERFUL time playing with T. They played outside, they played in our house, they played next door. They had a lot of fun. Just where Benji was perservating on the card Friday, after T had to go he just kept on about how he missed T and hoped to see T again.

This weekend reminds our family how unique Benji is. Now we just pray his "quirky" tendencies calm down and he has a good week.

Saturday, September 18, 2010

Little Bowen

I have just recently heard about baby Bowen. He is the child of Matt and Sarah Hammit. Matt is with the Christian band, Sanctus Real. They're website about Bowen's journey is Bowen's Heart.

I was reading about what they went through when Bowen went into arrest on Tuesday and things were at their darkest. It transported me to when Benji was in the NICU before his surgery. I felt the raw emotions, I cried, I sobbed. I think most parents that have had their child in the life and death situation go through a time when they know they have lost their child. It's just so finite that it will happen. I can't speak for other parents though. I only know how I felt.

When we almost lost Benji there was a swarm of emotion of pure raw emotion. See, Benji coded two days before his surgery. The nurses had told us he was stable things were good, we should go out and get a nice dinner. We did. I wish we hadn't. While at dinner we were called with that "You need to get back to the hospital ASAP" call. We did. When we did, Benji was stable again and we were not positive as to what happened. They had tried weaning him off of the medicine that was keeping the patent ductus open for blood flow so they could see just how bad his CoArctation was. By the time we got back up to him they had him stable and the meds going, we didn't SEE the rescue efforts.

I bring this up because I know the knot in the throat and the test of faith and the scream out to God of  "Not My Son!" I was shaken to the core because the only person I could trust to save my baby, was God. I knew that it didn't matter what doctor or nurse was there, that if God wasn't involved it wouldn't matter.

Matt and Sarah's faith was tested too.

"Everything I’ve watched happen in this hospital, all the pain I’ve felt, is deepening my faith, strengthening my marriage, and molding my character." (
 By going through the trials, God has made us stronger. God has strengthened our marriage. God has given us the compassion to reach out to others with that similar pain.

I pray for Bowen. I pray he become a strong and righteous man. I pray his family stay strong in the Lord. After all, "If God is for us, WHO can be against us?" (Romans 8:31)

Friday, September 17, 2010

Newborn Screening Pulse Oximetry

I was elated when I saw the status on Cora's Story at Facebook that pulse oximetry has been voted YES to be added to the newborn screening.

For many children with a congenital heart defect it can be detected by the use of pulse oximetry. It is a non-evasive test that takes only a minute or two.

It does not detect ALL CHDs but it detects a lot more than would be detected without it. It also can detect the defects sooner than other methods.

For more information on the Vote check out Blog4CHD

Tuesday, September 07, 2010

I Feel Like A Monster

Benji has been having a wild week.

We found out he had strep last Wednesday even though he wasn't acting "sick". (Parents of kids with sensory issues know what that means, absolutely NOTHING) After figuring out what medicine he could take (allergic to red dye) we got him settled and on the mend. It wasn't until Friday that he acted like there was something wrong. Friday morning he was mopey and just wanted to lay around. His fever spiked a little too.

He is on the mend though and even got to enjoy his last game at Miracle Ball Friday night.

Saturday he was listening to his favorite CD at the time, Awake by Skillet when he looks at me and says, "I feel like a monster."  At first I thought he was asking for the song, Monster, but then I realized he wasn't. There was a complex look on his face like he was trying to figure out how to keep from doing things. He told me, "I can't stop doing things." and "My body does things without me making it do them."

I didn't really think a whole lot about it when he said it. We are used to Benji saying odd things, it's just part of who he is. But then, I re-listened to the song.

"I feel it deep within, it's just beneath the skin
I must confess that I feel like a monster"


"My secret side I keep hid under lock and key
I keep it caged but I can't control it
'Cause if I let him out he'll tear me up, break me down
Why won't somebody come and save me from this, make it end?"

~ partial Lyrics to "Monster" by Skillet

I am astonished about how my son has latched on to the lyrics of the song. Sure, I can relate to some of the lyrics myself, you know on those bad days, but for my 5 year old to grasp them and relate to them, it really hits home. Especially when he is borderline autistic. Then, the autistic part is what makes me understand what he relates to. Those "motor-driven" moments when he feels like he has no control.

As an end note. Benji is feeling much better, he will be going back to school tomorrow. (today was an inservice day)