Friday, March 27, 2009

Another Domino

So.. Benji went to physical therapy today. He has made lots of progress. So much so that for him to continue therapy would be almost a waste of time.

I knew this, but his PT also helped with the sensory stuff to a degree.

So.. we are going to go about a month and see how he does without the PT. I can call or email at anytime or even bring him by without a problem. (This is really good because his PT is in charge of him getting his inserts in his shoes for the pronation)

While I am so glad that Benji is making progress, I am having a hard time letting go. He was discharged in January from OT, now PT. This means I will have to work harder with play dates and all.

Looks like I will be the scheduling queen for the summer... and I will HAVE to have back up plans. :o)

Wednesday, March 25, 2009

The Good, The Bad, The Stimmy! Pt 2

So... the last post was about our visit to Vanderbilt Children's CDC and seeing the developmental pediatrician Friday. This post is about Monday's visit to our regular pediatrician for Benji's well check.

I feel I need to note that at the CDC Friday, Benji was VERY well behaved.

Obstacle #1 Monday.... "I wanna stay home and play Batman."

Obstacle #2 ... "I don't want to go to doctor, I wanna stay home."

These were the first two hints that I was going to have a very enjoyable morning.

Loaded the young master into the Expedition and buckled him in. Hopped in myself and we began the 24 mile trip to the pediatrician's office. (We live in the sticks... to get a doctor with permissions at Vanderbilt, he's the closest.) The trip in was rather uneventful until we got in close the the office... then it starts.

"I wanna go home." "I wanna play batman."

I had forgotten that a few weeks ago they had a lesson week on doctors and dentists. I had forgotten the relief on his face when he accepted that Dr. Cooper wasn't that kind of doctor... you know, the kind that give SHOTS.

We get in and we check in. Uneventful. Then nurse Tammy comes and gets another child and it starts...

"I dun wan shot momma."

Of course, I came up blank and couldn't remember if any were due. (I am one of those mom's that don't believe it was the vaccinations that caused Benji's problems... with everything else going on, I think it was always there.) So I told him he probably didn't need any today. I had even resolved it in my mind that we wouldn't get them then, if he needed them we would come back another day.

So that was the waiting room.

Then they call us back. It was a different nurse that we didn't know, but Benji seemed okay at first. It was time for a hearing test. I laughed inside as I realized what he was doing. See for the hearing test he had to wear the headphones and have the button to push in his hand. He would hear the sound and push the button but then keep pushing the button like he was flying an airplane or a fighter jet. It was cute. The nurse didn't appreciate it.

Next was height and weight. The young Benjamin is 39 pounds and 41 inches tall.

Next was vision. This was fun. He couldn't stand still... He was wiggling everywhere. He was still able to read the chart though. I finally got him to stand at the right spot (still wiggling) and he told the nurse every single shape on the next to the last line. And the first 4 on the last line.

Once we got into the exam room we did the blood pressure which was 94/60 on the right arm. (Arm is important since he had the surgery on his aorta.) We went over his history and concerns and then waited for the doctor.

While we were waiting, we had to strip down to undies. He wasn't too crazy about that. It was then that he decided to jump... off the exam table to the floor. I caught him just as the doctor and a fellow came in. Benji was wild. Got him back on the exam table and he grabbed the 'flashlight' from Dr. He started examining himself... It was funny until he dropped the light.

Dr was asking about the concerns with Benji's eating (lactose/casein intolerance, red 40 sensitivity, MSG sensitivity/intolerance, the hypoglycemia) his pottying (even though I try to keep him in undies we do have a lot of accidents.) and then Dr brought up about the CDC and such. I explained how that went.

Through the conversation Benji would interject random things about Batman and shots and siblings, and school, and.... you get the picture. He was also being wiggly and giggly.

When it came time to the exam, I actually had to hold Benji so that Dr could do the exam... Mr Tickles...

Physically Benji is doing great. His height has jumped up to above 95% and his weight is right at 90%. Which is good considering his heart and then the hypoglycemia. He is growing, and thriving.

So... as we were talking and Dr saw this wild thing in his exam room he asked me similar things as Dr. Cooper. And came to pretty much the same conclusion. We may be looking at a 4yo with Asperger Syndrome. This is the first time that Dr has entertained the thought. It may have to do with the existing diagnosis of Sensory Integration Disorder.

So we are waiting for an appointment referral to a food allergist/nutritionist.

All and all the visit was good. Benji has progress. And we are taking steps to narrow down what is going on.

Tuesday, March 24, 2009

The Good, The Bad, The Stimmy!

So, Benji went to the Child Development Center at Vanderbilt Children's for his suppose to be yearly developmental pediatric visit. His last visit was 18 months ago when he was diagnosed with the Disorder of Childhood and was referred over to Vanderbilt Bill Wilkerson to be checked out for Sensory Integration Disorder which he was then diagnosed with.

So, Dr. Cooper was glad to see us and reviewed Benji's progress with me. Or.. I should say I shared Benji's progress.
  • His Speech is almost completely caught up. He still has some articulation to work on and he needs to pronunciate better, but he is a talking machine once he gets going.
  • His fine motor skills are nearly on par. It's more of a stubbornness problem than not being able to do something. (i.e. He knows how to hold a pencil/crayon but chooses not to do it right)
  • Gross Motor is improving. He still needs to strengthen his core muscles and we still need to work on those ankles.
  • He is off the blood pressure meds for his heart. It's will be a year in May!
  • While he does have low sugar episodes, we catch them quickly and he recovers fine. Mostly happens when he has been playing all day outside and doesn't want to stop for anything.
Dr. Cooper appreciated my knowledge on what was going on. Which this is a soapbox of mine... Do parents just not pay attention to their kids? I mean really. Benji has some medical issues, so I do the research and I do what I can at home to help him. That's how we realized it was the cow's milk that was causing the colic when he was little. That's how we discovered the sensitivity to red 40. (OH MYwas it wonderful when we got rid of that! The hyper activity disappeared!)

Anyhow.. so Dr. Cooper thinks we should do pretty much the same testing we did last time and see what comes up. His non-official opinion is that Benji is either a quirky 4 year old or we are looking at Asperger Syndrome. This does not surprise me at all.
  • Ridgidty ~ Must have schedules. If normal routine changes he gets very non-compliant with anything. It completely disrupts him. (eating, sleeping, pottying, mood, etc)
  • OCD type ~ While this isn't as bad as it could be. Benji is very particular about how things are. If he puts something somewhere, it had better be there when he gets back. Things also have to be 'just so'. It's hard to explain... would you like to come over and see one day?
  • Obsession ~ for over two years the only thing Benji wanted was Cars. You know Disney Cars? It is still an obsession and he has moved to include Hot Wheels, Wall E, and Transformers with it. They are all mechanical and he loves to "help" work on the car or just to help with tools in general. He is also now obsessed with video games (PS2)
  • He is very sensory seeking. The deep pressure type. He loves getting in his sling swing all cozy and swinging. Also jumping on a trampoline. When he is seeking he will throw himself on the ground or against the wall and laugh.
  • While exercises have helped he is very tactile defensive. He will play in finger paints now but he doesn't like it and the second he thinks he is done he wants his hands cleaned.
  • Can't stand to be sticky, slimy, itchy, etc.
So... that was the visit with Dr. Cooper. We are waiting for the call to get the testing done.

Thursday, March 19, 2009

I am Not TIRED

... Says the sleepy boy at 2 in the afternoon while he twirls his hair and sucks his thumb.

Benji is a tired little guy that is wishing his schedule would get back on track.

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Wednesday, March 11, 2009

IEP and such

Benji's IEP went well... OT discharged him, which didn't surprise me since his fine motor skills are on par. PT kept him because of his core strength and that his sensory seeking behaviors can be a problem. He likes to throw himself down for the deep pressure. This is not new, they are just seeing it more than they used to.

Right now we are on spring break and unfortunately the change in schedule has messed the little guy up. His potty training has slid some. He don't want to use the potty for his BMs, so I put him in pull ups, which causes him to not care if he urinates in his pants. So sensory stuff is fun!

Benji's birthday was March 2nd and he had his party the night before. He was so thrilled with all of his 'CARS' toys it wasn't funny. Made me glad we hit the dollar aisle at Target. Plus I got the walking talking Lightning McQueen for $15 on clearance at Walmart right after Christmas!

Other than that we are just taking things one day at a time.