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.