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.

Welcome 2011

Well, this year has been a marked improvement over last. Benny still isn't holding his head up, but with the help of Joyce OT, we are making slow strides. We also started speech therapy, her name is Adrian & she's great!! Bennett has finally found his voice & is picking up sign language like you wouldn't believe.

He's been getting PAM treatments every 8 weeks & when we went to Omaha at the beginning of May, they said his bone density increased by almost 25%, that's great but his density was so low to begin with, I keep a positive outlook any improvement is good improvment.

He got his hernia repaired...finally. We can tell he feels better from that also.

We did just get some disturbing news today, Dr. Rose from Omaha is concerned about Bennett's head size & that he may have fluid on the brain. We're scheduling an MRI to get that tested. I swear in 40 years I've never spent more time around Dr's or in hospitals than in the last 2 years. I wish they would just come up with a bloody cure already.

Take care Mark Stamoulis.

2010 quick recap

This will be short. 2010 was a pretty boring year. Benny recieved his PAM treatments from Leann, his infusion nurse, every 8 weeks. He still had 5 or 6 breaks in his left Humerus, & 1 fracture in his left Femur.

We all went to California for Bennett's 1st birthday!! That was a blast, a week is definatley not long enough though. Summer was ok, very hot!! I took him to the lake, but with his light sensitivity he couldn't really enjoy it. I will take him again this year, but later in the afternoon, & where it's shaded more.

We made a visit to the Cox Springfield NICU & saw Dr. Eccher, he's the greatest person, truly. He held Bennett for a picture & you could see the recognition in Bennett's face, it was priceless.

We had a great Christmas, Benny got enough toys for about 25 kids, he's going to be the most popular kid on the block later.

He started talking a little bit, learned a few signs "more & please", the important ones. That's about it for tonite, talk again tomorrow or next day. Good night. Mark.

I've been away, but I'm back!!

Hi everybody, just a short note. It's was a very busy year last year, & the start of this year hsn't slowed down. I'm waiting for my gray hair to start revealing itself.

Bennett is doing great despite a few breaks, he heals so quickly it's shocking. We started him on speech therapy about a month ago & he's saying too many words to count, & using sign language!! He went to the Brittle Bone Clinic a couple of weeks ago & all the doctors were very impressed with his progress. I will update with substantially more detail tomorrow, it's bed time, bonne nuit.

I know I've been away, but I'm back!!

Hi, sorry to have been so lazy. This will be short, it's late. Bennett has been doing great!! Growing & getting stronger. He had several breaks last year, but that comes with the territory. He had Clinic in Omaha last week & they said he's doing better than expected!! I will fill in details tomorrow. Thanks to everyone who hung in for the last year or so. You can go to his Caring Bridge page, if you like. The address is www.caringbridge.org/visit/bennettstamoulis.

They don't teach this in Home Ec.

I want to preface this by saying I love my son more than anything in the world, & I want to apologize to my parents. If I was half as stubborn as Bennett, I'm surprised I made it through childhood.

Sky & I try as hard as we can to make Benny as comfortable as possible, we rock him, play with him, read to him, play music, watch those silly kids shows, nothing keeps him happy for more than 45 mins to an hour. He seems to be getting bored more easily as he gets older. He is happiest when he's moving & it doesn't matter in what direction or what room we're in, so long as he's moving he's quiet. If we stop the wailing starts.

I'm looking forward to him saying words, it seems as though he is trying to say them. We will be changing his diaper or playing with a toy & he's making all sorts of noises like he wants to communicate with us, it's hard to explain but you get the idea.

We are attempting solid food feeding with him, & he's fighting us every step of the way. I never thought I would say he's more stubborn than me, it could very well be possible...God help me.

Well it's extremely late & he'll be up soon, good night. Mark.

Reminiscing

I was thinking the last few days about Mr. B when we first brought him home after he was born

Bennett's 1st Christmas

We have had a very busy holiday this year, my mom & brother came out for Thanksgiving, we were in Omaha for Bennett's treatment. The rest of the month was spent getting ready for Christmas & getting used to our new schedule. The medicine he recieved has increased his comfort level by loads.

I have to say that even though I'm getting more sleep since his treatment, I feel more tired. It's as if getting up every 3 - 4 hours for about 20 mins made me less tired...weird. Anyway, Sky & I tried to fit in Christmas shopping, working, taking care of B & the house (decorating, planning meals). I apologize for ignoring everyone, we didn't even get a picture with Santa...I'm planning on getting one though.

We had an especially great Christmas Day!! We webcamed with Dad & Tere, then with Mom. That was really cool, it was just like opening presents right there with them. Unfortunately Skylar wasn't feeling to hot, so she slept in. When she got up, I started getting the kitchen ready for early dinner. Randy & Linda were coming over, we had decided that I would make Beef Wellington with a Port Wine Sauce, it was quite good. Once they got here, we turned on football & ate finger snacks, Mr. B fussed everytime he was being held, I thought he was just being grouchy. Linda took him into his room & rocked him to sleep, I think I have an intuition about these things.

Bennett recieved all kinds of great gifts, he got an embroidered Chinese Wish Quilt, a book of nursery rhymes with a cd, toys, clothes pretty much anything a little boy would want. Starting on the 5th I have 12 days off work, so B & I will be spending quality time together. We will start doing his PT consistantly to strenthen his neck, & he's going to start eating solid food now. He can down almost 7oz of formula it's time for solids. So talk to you tommorrow.

Back...& better than ever

We are so glad that we have our support group. We never would have found out about the OI Clinic in Omaha, NE. The dr's & nurses treated us & Bennett with such care & respect it was great.

We drove...of course, the drive up wasn't bad, it only took 6 hours & Bennett was great the whole way. We stayed at the Hilton & they really took care of us too. So, the first day we checked into the hospital we saw Dr. Azzrow, he check on Bennetts hernia. Fortunately the opening is large, that means that it cannot become incarcerated YAY!!! He also said that he doesn't need surgery right away, they are going to wait till he has a couple more PAM infusions before going that route. He also had his DEXA Scan & X-Rays. They revealed that his hips & legs are very low in density & aren't even close to being ready for rodding...oh well for now.

The second day was when he saw EVERYBODY, Dr. Esposito (Pediatric Surgeon), Dr. Lutz (Genetisist), Carolyn (Dietitian), Carrie & Katie (Physical Therapists), & Rose Kreickmeyer (Nurse Practitioner).

The day finally arrived, Dr. E talked to us for about an hour. He said that Bennett isn't ready yet for rods, we just need to give the PAM time to help strenghten his little bones. He told us about the rodding procedure, he really knows his stuff. Dr. Rose came in & asked us ALOT of questions, it was to help make his stay in the clinic as comfortable as possible, she's the person in charge of PAM treatments. The therapists asked us what we were doing for Bennett, if anything to strenthen his legs, arms, or neck?? We said nothing, because we were told he wouldn't make it 2 month's. They were very understanding & told us there are some very easy exercises we can help him with to make him stronger. The dietitian told us something suprising, Bennett is getting alot more calories than normal, so his lack of weight gain is just because he has a very fast metabolism.

Dr. Lutz had very good news for us, I asked him straight out " has Bennett made it past his first major hurdle??" He said yes, without question, he's 7 months old, no vaccinations, been out in public exposed to who knows what??? He has years to go!...well thank you very mmuch Dr. Lutz. That news made his mother & I the happiest parents that could ever be.


Bennett was then checked into the OI Clinic to start recieving his PAM treatment. The nurses there were fantastic Jamie, Sherlae, & Kim. Dr. Snow is the hospitalist who administers the PAM. The bad thing about being so small like Bennett is the only vein they could find was in his HEAD!! The IV was in the top of his skull, I just about passed out when I saw it. They started his treatment that afternoon, it made his bones hurt at first & then he was happy as a clam as it started to work, I stayed the night in the room with him. The next morning he got another dose, 2 doses is 1 treatment. He thought he was done, oh no...he recieved 5 vaccinations. He was one sad boy. They checked us out after that & we drove home. It took us 9 hours going home, not because of weather or anything, we just had issues with Mr. Man. We made it home safely & in one piece. Bennett has been sleeping great, he hates the new pain meds they prescribed, they must taste aweful. He closes his mouth tight, shakes his head back & forth. I have to say though he is like a different boy, much happier, as for us?? We are able to sleep more & more soundly knowing he feels so much better. Talk to you soon. Mark.

Cars, noises, & other distractions

My son is a very curious individual, he can be sleeping in his pack & play & I can vacuum around him no problem, do dishes, clean the livingroom, all the while just sleeping away. On the other hand, if I'm holding him & laugh out loud, he screams like I pinched his nose off, or if I sneak into his room to get something, it's as if he has a sixth sense.

He also loves the car, he can be fussing like mad, cryng turning himself red. I put him in his car seat & start driving, within 5 mins he is calm as a cucumber. I would like to add my mom is quite ingenious, we were out to eat & normally Bennett likes to watch the ceiling fans, there weren't any of course. He started fussing, my mom started waving her menu in front of him, that kept him totally preoccupied throughout dinner...BRILLIANT!!!

Well 1 more day & we leave for Omaha so Bennett can start his Pamidronate treatment. We are beside ourselves with excitment, I will update when we get up there on tuesday, later...Mark Stamoulis.

Quiet times

First of all I would like to say, I can't decide if I like writing this to Bennett, I may flip flop till I decide. Secondly, I love coming home from work & Bennett is sleeping, he looks so peaceful & adorable. He sleeps with his eyes partialy open, his hands tucked under his chin & breathing so you can just barley hear him. I sometimes take a chance & sit right next to his crib & watch him sleep. It almost seems too quiet, like there should be some sort of background noise, he does have his fan going, which he adores. I'll hold him under that, swaying from side to side, & he just stares at that fan.

He loves to see anything moving, when we go out to eat if there aren't ceiling fans he will start fussing after a few minutes, my mom actually found that if you wave a menu in front of him that keeps his attention. We are definately learning as we go.

Sky & I are really looking forward to our trip to Omaha, NE. Bennett is going to start his Pamidronate treatment. All my friends on Facebook say "Pam" is the best thing for patients with OI, it helps strengthen the bones & reduces the pain level. We are very happy about that, hopefully with less pain, we will have alot more quiet times.

Will post more when I know more...take care, Mark Stamoulis.

Things that make you happy.

Well Mr. Man...you have been doing better & better everyday. Your mom & I are almost able to tell what's wrong just by hearing you cry.

I have spoken with 2 of the mom's that have OI type II kids, & they have alot of interesting information. It's nice to talk to someone who understands completely what we are going through and can give us advice if we need it. I want your mom to give them a call I think it would take a lot of stress off her mind.

I saw Grandfather Sam tonite.

Well your grandfather & I finally figured out that abuelita Tere was right. We should have just used Skype from the begining. Once it was downloaded at both ends we saw each other clear as day. He was very happy to see you, & I know when Tere gets home she'll be equally thrilled. So, you found your voice last night too, you had quite a bit to say, in fact around 2am your mom thought there was a dog whining outside our window. It was you, talking to someone, or maybe practicing for when your going to backtalk when your older. You woke up around 4am screaming about something, I think it was upset tummy. I fed you at 5am, & then headed off to work. I hate leaving you when you look so cute...oh well.

Things are getting better

Hey there buddy, you slept good last night. Woke up once around 2am, you ate 5 ounces & went right back to sleep. You woke up around 830am & I fed you, but you were very fussy, I could not figure out why. Your mom came out to see you, & you stopped fussing while she was out here, & started when she went back into the room...go figure. You had a good day sleeping & eating, you don't like being held so much right now, it must be a phase. I gave you a bath tonite & you loved it. I think you like the weightless feeling. You are lying down now, hopefully for the rest of the nite. I love you buddy, good nite....dad.