Monday, December 7, 2009

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.

Sunday, November 29, 2009

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.

Saturday, November 28, 2009

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.

Sunday, November 1, 2009

Things that make you happy.

Well Mr. 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.

Friday, October 16, 2009

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.

Wednesday, October 14, 2009

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

Tuesday, July 21, 2009

A good night

Well, I went to bed around 11pm. Skylar had to nag me to death, I slept in our room for a couple of hours till I heard her giving Bennett his 1am feeding. I then switched to the nursery. It seems easier that way, to feed him I mean. I like the baby moniters for their convenience, but I don't like them at the same time.

I had trouble sleeping for whatever reason, who knows. Bennett slept straight thru till 6am or so. We are trying to feed him more formula, he did great this morning, 2 + ounces, that may not seem like alot, for him it's really good. He ate it pretty much without stopping or choking.

One of my favorite things being in his room listening to the sounds I normally take for granted. The fan going, his breathing, the rain (it's been raining the last couple of mornings). It's incredibly peacful, & quite a departure from his screaming when it comes time for him to eat his bottle.

I just finished feeding him, he went right back to sleep. I didn't give him Morphine right now. I'll wait & see, maybe the next feeding.