But the pizza was REALLY good!

My last post talked a little about disappointment and trying to find the positive and bright side of situations you can’t control.  Two days later and we’re not over it, (because I don’t think you get “over” things in life…I think you work through them, learn and take away), but we’re definitely on the better side of “through” it today.  

I'm recalling the memory of so many other children that we passed in the hospital hallways that seemed to be fighting a battle much worse than ours. I remember the code blue that happened on our floor that one time and all I can remember were swarms of hospital personnel running through the floor and our door being closed. I also remember that young couple crying in the hallway together, dealing with something I don’t even want to imagine. For those reasons (and so many more) I try to continually count my blessings and appreciate the little things.

Here is a short list of some of my "favorite things” that help me appreciate all I have (in no particular order, except for #1). I encourage you to make a list of all of the little things in life that make you happy…go to this list when things get tough…and if you can’t think of anything than for God’s sake, go and visit a 3^rd world country.

1.  Family – no explanation needed. Mom. Dad. Sister. Brother. Husband. Children. Nieces and nephews. In-laws (which are categorized under sister and brother, mother and father). Extended family. Work Family. Friends that I consider family.
2.  Frank Pepe’s Coal Fired Pizza – we always made sure we visited this awesome restaurant each time we took Ian out for a bone infusion. We never had a bad experience at this place and it was the one thing we looked forward to each time. It got us through. If you’ve never had coal fired pizza (which is non existent in upstate New York) you are truly missing out. God bless coal fired pizza.
3. Dogs – we got our Oreo over 14 years ago and Elvis 8 years ago. They love each of us (and all of our faults) unconditionally.
4. Cats – we’ve had 3 that have stolen our hearts. Chaka Cohn, Chocolate Chip and our current love, Walter.
5.  Dubsmash – try it, it’s pretty freaking fun.
6. A king size bed – 17 years ago when I was pregnant for Ian, Mackenzie at 4 years old climbed in our bed EVERY SINGLE NIGHT! So, we got a king size bed just before Ian was born (thanks, Mom!) and we’ve never looked back!
7. White wine – enough said.
8. A decent credit score – we’ve worked really hard for this.  I was 20, Harry was 23 when we got married. I was making minimum wage and he was a line cook at a restaurant. What were we thinking? That’s what my parents asked. We made all the mistakes a young married couple could make. But we’re here now. Happy and stable. 
9. A good workout – there is nothing like a heart pumping, muscle burning workout…so empowering.
10. Hope.

                                                             May you find happy.

I wish we had better news...

This is not what we want to hear from a specialist that has been treating our son for the past 2 ½ years. I will also say, that it’s not the worst thing we could have heard. In our family, we find the good in everything and this situation is no different….however, it’s not to say that we won’t take a moment and feel our disappointment.

As most people that follow this blog know, our 17 year old son has osteogenisis imperfecta (OI), otherwise known as brittle bone disease. He gets his nearsightedness from his dad along with his strong jaw line and political views…he gets his bones from me.

When I was growing up, management of the disease was key. Eat calcium rich foods, take a supplement and don’t put yourself into positions where you could get hurt (no skiing, skating, etc..). It has been a way of life and mostly why I focus on fitness and controlling what I can to stay healthy. Weight baring activities are also encouraged.

When Ian turned 13, he had a growth spurt that made his bones vulnerable to breaks. We (he) had a femur fracture, 2 vertebrae fractures and a scapula fracture in the matter of 2 years. We sought out a specialist to see if anything could be done. We started with our orthopedist who connected us with a specialist and then another…eventually we found an endocrinologist who has a special interested in OI.

Long story super short, we have been going to Connecticut Children’s Hospital for the past 2 years (once every 6 months) to get a special infusion that has shown promising results in OI patients. Over the past 2 years, we (and I really mean our son) have endured many hours of waiting, needle sticks, blood draws, student lab techs taking 7 pricks to get to the vein, screams on the floor we’re treated on, a code blue (not us), hospital food, the same questions asked 17 times by different specialists, etc….And today was the day we got some answers…what has the past 2 years done for us (him, or son).

Things are pretty much the same…we were shown graphs, percentages and our “Z score”…but the bottom line is things are pretty much just as they were 2 years ago…I didn’t deny our son the right to feel disappointed (aka f'ing pissed). He (and we) certainly have the right to our feelings. We had hoped for at least a little improvement, some sign that the past 2 years of treatment weren’t for nothing.

So we’re relying on the hope that if we didn’t go through what we did than perhaps things may have gotten worse. We are holding on to that. I’ve been told in business “hope is not a strategy”, but I would say hope certainly has its place here. As disappointed as we are that we didn’t have bone growth, we didn’t have deterioration either…and that, my friends is a positive. Let's face it, we're not fighting cancer.

We were told to follow the OI Foundation’s website and keep up to date on the latest treatments…there are many promising therapies that could be offered soon. Ian is encouraged to build bone with a diet rich in calcium and vitamin D and increase his weight baring exercises. (Diet and exercise is the best medicine for everything in my book).

So with that, I’ll leave you with my jumbled mess of what is running through my head tonight,,. Until next time…and I’m certain it will be awesomely awesome. Cheers.