Friday, February 22, 2008

Sharing a Break Through

It's taken me a couple days, but I am sharing....

This past week has been revival at our church and when we went Wednesday night an unexpected thing happened.

At the end of the service two of Benji's siblings went down front for prayer, and we were down there for awhile. The last nursery worker figured that we were still in the sanctuary so she brought Benji to us. As she was giving me his color papers there was one with handprints on it. I asked her, "He did this willingly? There were no problems?" She told me, "They didn't have a problem with him playing in the paints."

I just started crying, our pastor's wife was next to me and she was very concerned. Thankfully mom was there and was able to explain to her about Benji's sensory stuff and about him hating to get icky with paints, glue, food, you name it. We all were Praising the Lord!

We are continuing prayer that the healing continues with Benji. And we are getting excited when even little hurdles are overcome! Praise the LORD!!

Tuesday, February 05, 2008

Fly Away....

The balloon that Benji got yesterday at DollarTree. He loves it and it fits perfect with Heart Month. Just gotta keep him calm.... it gets him quite excitable.

Monday, February 04, 2008

OT evaluation today

Once again we had a tiring day. And it's only 2.30.... LOL... We went in to Bill Wilkerson this morning for Benji's Occupational Therapy Evaluation. For the most part he had fun. He was in a "no" mood this morning and wasn't too happy to be stuck in his car seat for about 70 minutes. The awesome thing is it didn't start raining until we were there an in the building.

Anyhow... Benji played for the therapist and worked with her, and cooperated mostly. I was glad that she got to see him throw a tantrum when he didn't get his way. He also got a little hyper and she got to see that.

So... ultimately he was diagnosed with Muscular Incoordination (DSM 781.3) from googling it is also called Ataxia and is a neurological disorder. In addition, she believes that the coordination problem is in part because of his sensory processing issues. He was not outright diagnosed with sensory processing disorder, but that is what the occupational therapy will address. That and FEEDING!! Finally we are going to get help with him eating.

The therapist also told me that if he were given the sensory test for 3 and up that it would have turned out differently. Alot of what he does (the spinning and the crashing and wrapping up tightly in his heavy blanket) is SPD.

The other thing that I got a chuckle out of is she recommends that we get The Out of Sync Child and The Out of Sync Child Has Fun by Carol Kranowitz. I ordered it today. It was on Benji's Amazon wishlist.

Anyhow... that's pretty much it for the OT eval...

Friday, February 01, 2008


February 14, 2008 - CHD Awareness Day Lunch from 11:00am to 12:00pm at Vanderbilt Children's Hospital in Nashville, TN

Heart Month

It's that time of year again. You know all the Valentine Cards and candy and parties and such with school and Banquets at Church and all. Everybody is focusing on love.

Well, this is our third year that we have put aside February for Congenital Heart Defect Awareness. March 2, 2005 Benji was born with CoArctation of the Aorta and Bicuspid Aortic Valve with Stenosis. On top of that he had a patent ductus arteriosis. We had no idea that his heart was defective, and to this day we do not know why.

Benji had closed heart surgery on March 9, 2005 to repair the CoA and close the PDA. Dr. Carla Christian did the surgery using the subclavian flap plasty. He has thrived and as of November 2007 it was declared his aortic valve is stable.

Along with Benji's heart defects we also are dealing with speech apraxia, hypotonia in his ankles and feet, sensory integration issues, lactose intolerance, and good old fashioned stubbornness. LOL..

I hope to post daily in the month of February about CHD's in order to bring more awareness to Congenital Heart Defects. Do join and pass a link on to those that might be interested.