Still here...

WOW!! It's been exactly 3 years since I posted on this blog. BIG things have happened since then, we've been going to Omaha every year. Bennett is improving incredibly. His bone density is WAY up, it's still below the average, but way up for his type. He's been in school now for the last 2 years, preschool & kindergarten. He's now in 1st grade, he's 6 for those that don't know. The latest & greatest news is that he's sitting unassisted!! That's HUGE!! We never thought this day would come. We will be going to Omaha in May of 2016. Hopefully his bones will have increased enough in density to warrant rods to be put into his humerus & tibias. I will leave that up to his surgeon. I will continue to post on a weekly basis from now on, tell your friends to follow this bog for big & exciting news involving Bennett. Thanks Mark.

Out & about as a family.

Well since the weather has started improving, Skylar, Bennett, & I all went to a Car Show the other afternoon. It was a glorious day. The weather couldn't have been better, & the sun was just going down so Bennett didn't have to suffer w/ brightness.

  He loved seeing all the cool cars & trucks. He especially liked a yellow Nova II, until the guy gunned the engine. Then it wasn't as cool, it kinda startled him.

  He did like being outside though, he repeatedly said to Linda "we're outside, we're outside". It's been wicked hot so we've not been going for walks that often. We will now for sure, I wish I could find an off road stroller that he'd be comfortable in.

Bennett also had his infusion last week. I found out that Leann (his nurse) is only staying w/ Home Parental Services because of Bennett!! She is his only patient. She is also a full time nurse. She is not only the greatest nurse but also the best person. She cares for him like her own. Thank you Leann if you read this.

  The picture you see is Bennett on our patio w/ the bubble machine going, he LLLLLLLLLOOOOOVES bubbles!! The new speech therapist Ann is using them to work on his W's, you know pursing your lips together?? So he gets all he wants when it comes to bubbles.

  He's also spending more time on his "Blue Couch" as he calls it, sometimes w/ his tumble form seat sometimes not. He's getting better sitting up & talking & asking questions more.

     Well off to work, thanks for reading & if you want a particular topic about Bennett discussed, please feel free to ask. Take care Mark....aka Bennett's Pop.

Bennett the Brave.

  Bennett & I were having a grand old time driving around yesterday afternoon. All of a sudden out of the blue comes a major thunderstorm. The car was shaking wind was howling. He was getting a little freaked. I was right by work so I thought let's go inside .

  It took less than 30 seconds to get him inside, but in that time I was soaked to the skin & he looked like someone had thrown a bucket of water on him. He cried for a couple mins then he was fine and dandy. I swear this little boy is the bravest I've ever met.

2 steps forward 1 step back

<p>Hello, so now that we're home from Omaha things are getting back to normal. We're working w/ Bennett on his sitting up, using words properly, etc.

  So Bennett was taking a nap yesterday & had rolled completely on his stomach, well when he tried to roll back his left arm got stuck behind him & he couldn't get it out & of course broke it. I cannot believe it.

  He cried for a while even after meds & splinting. I really hate this disease & Bennett's the one suffering everyday.

  He's feeling much better now. Hopefully I'll have better news tomorrow.

Doesn't it break your heart.

  I've never liked reprimanding Bennett, even when he does something that he's not supposed to.

  Last nite proved the hardest time I've had to date.

We were shopping & he picked out a Lego kit he wanted, I gave in cause I said no to so many other things. It was late & he was getting tired (aka cranky). I made one last stop & was looking at something when he looked up at me & said "daddy?? I want to walk." It took every ounce of willpower not to start crying in the store. I just said to him "I know buddy, me too".

  Then just as quickly something caught his attention & he forgot about it. I didn't & haven't stopped thinking about it since. Then as we were about to checkout he threw his Legos on the ground. So now I have to go into "mean dad" mode & tell him he's not getting them because he threw them, we've been having an issue w/ him throwing.

  I know it's part of parenting, but it sucks especially after your disabled child asks for something they may not get.

I know there's no manual for parents, but sure wish there was.

  Mark.

Back from Omaha NE...a few weeks ago.

We arrived back home safe & sound after seeing the team at the Metabolic Clinic. A big change we found out, Dr. Rush is going to be the new Geneticist, and he is great!! So the really big news is, Bennett's bone density has gone up 50% in his spine & 200% everywhere else. I could bore you with "Z Scores" but I won't, just know that he's doing AWESOME!!. Dr E said that as soon as Bennett is capable of holding his head up on his own we can talk about scheduling his rodding surgery!! I still get goose bumps when I think about it. Now, back to him holding his head. He IS able to hold his head up he has the neck muscles big time, it's just so heavy (because of his extra large brain) that it's very uncomfortable on his spine when we hold him with his chest on ours or try to hold him like a healthy child. He sits in a Tumble Form chair, the couch or any seat that forms around him fine. If the seat involves having to hold himself up w/ his arms he's just too resistant. He's still scooting like a crazy man, he's talking, talking like crazy. He likes to be driven in his car, that's my 2nd occupation "chauffeur". The new speech therapist started last week. I don't think he really needs one, but we will take all the assistance from experts in different areas that we can. I've updated my phone to have blog when I'm not at my desktop. Hopefully this will encourage me to update more frequently. Take care,

Mark.

Wow, time flies...

Well hello again, so much has happened in the last year.

Last May, we had a huge party for Benny at Wyndham. We stayed in the Presidential Suite
that was very nice. My mom, brother, Uncle Tom, aunt Linda, & my cousin Devon
& Stacy all came out. Plus several people from Panera & Wyndham, unfortunately
very few from Hilton showed up.

My boss Kyle ordered OI awareness week tee shirts for all of us to wear, he
is a great & thoughtful person. He & his boss Craig even had the entire district
selling candy bars to help offset our medical costs.

We had quite a scare, Benny had to have emergency hernia surgery. He made
it through like the champ he is. Flirting with all the nurses,

He had a few breaks last year, but in the last 6 months nothing. Truly a blessing
for that. Leann is still coming every 8 weeks. She saw him today & he did better
than ever, barely fussed when she took lab & put the IV in. Take care & will post
again soon.