Pamidronate

Emily goes into hospital on Saturday for her first Pamidronate treatment. It’s a little scary because we haven’t done it before and although we are as informed as we could be, it’s still something new. We (Emily and I) will be admitted for 3 days. Hospital food, oh joy. But 12 days a year in hospital in comparison to 6 weeks in a cast or worse. I’ll take the 12 days in hospital.

The treatment is not a cure nor does it guarantee that she won’t break. But it is something that will make her bones stronger and my hope is that she won’t break as often. They have had amazing results with children on Pamidronate. I just want to have amazing results with my little one.

I sometimes find it difficult to express what it is that I am feeling. I have felt really angry lately and done a few things that have been a little (to put it mildly) out of character. The other day a stranger nearly took Emily and I out in traffic, he wasn’t paying attention, lucky I was. The accident was avoided but it made me so angry. The simple wave as an apology, and it was forgotten wasn’t going to wash with me today. So I followed him (not the most intelligent thing I have ever done) to a large shopping complex near our house. I got out the car and made him apologise to my 9 month old daughter for endangering her life. He thought I was completely insane. I really felt that he needed to be shown that his not paying attention could have cost a little girl her life. A life that I have become very protective of. So strangers beware.

I feel like I want to take Emily and Mark and hide away. I don’t want to see anyone or have to talk to anyone or be polite to anyone. I just want the three of us to have some time. I don’t know maybe we need some time to heal from all the heart ache over finding out about Emily having OI. Maybe I just need to heal and I want to take my little family with me. But back in the real world I have to put my big girl panties on and just get on with it.

Why ?

I have started this blog as a way to work through all the feelings and frustration I am feeling. My little girl Emily is turning 10 months on Sunday, she has Osteogenesis imperfecta (OI) and had her first break 5 and a half weeks ago. My heart broke.

She is so small and so helpless and has never done anything to anyone, what could she possibility done to deserve this?

My husband has Osteogenesis imperfecta (OI) and Emily has inherited it. We had hoped so hard that this wasn’t the case and everything indicated that she didn’t have it. The scans while I was pregnant, the x-rays when she was born, the opinions of experts and specialists. They all said that it didn’t appear that she had it. She did.

We have always been mindful that she might have OI so she has always been handled with care, we wouldn’t even let the nurses handle her in the hospital when she was born, we tried to educate everyone that come into contact with her. How to be more careful with her and always be mindful of her arms and legs especially.

But it turned out that I was the one who wasn’t careful. I think I became over confident in handling this precious little gift and I began to let her stand in front of me and hold onto my fingers. I should never have done, she didn’t have the balance and she fell. I heard the crack and I instinctively knew she had broken. Calling my husband was almost as hard as telling him Iwas pregnant.

But let’s go back a bit:

I was never meant to fall pregnant, we had only been seeing each other romantically for about 3 months when I fell pregnant. We had however been friends for close on 10 years by that stage. I knew Mark had fears of having children and passing on OI to a child, we had talked about it. I never in a million years imagined that we would fall pregnant.

It was a arbitrary Monday and I had a suspicion that something might be up, I was 3 days late or what I thought was 3 days so I went and got two home pregnancy tests from the chemist. I called my best friend Carrie, who happened to be 700 km away and now we were going to do these tests. I was shocked when the test didn’t even seem to contemplate the diagnosis. I had taken these tests in the past and they seemed to always take a really long time to give a result. Not this time. The problem came in when I was trying to take the second test. I couldn’t pee. So I had 3 cups of tea, a litre of water and still I couldn’t pee. So besides the flood of tears that my friend was having to deal with, I was now giggling hysterically. For some reason the fact that I couldn’t get my body to perform a simple task like pee seemed absolutely hilarious to me. When I finally got my bladder to obey it kind of thought it would punish me and I peed basically on the hour for the next 4 days. But it was confirmed that I was pregnant.

And all I could think was, I will never be able to go back packing through Europe. I had never planned to go back packing through Europe but now I couldn’t and I was devastated.

Telling Mark was a completely different story. I wanted to wait till the weekend when he was going to be coming to see me (we lived 700km apart at that stage) I didn’t want to tell him on the phone. My friend Carrie pleaded with me not to leave it, she know I wouldn’t be able to keep this from him for a week. Who was I kidding. So I hung up with her and called. The conversation when a little like this. This is through my tears, and I am not a pretty crier. My voice shakes, my nose runs and I sound like someone has just driven over my puppy.

Me : Hi Mark

Mark : Hi, what’s up? Are you OK?

Me: *sniff sniff* I’m pregnant.

Mark: Oh f@#*, I’ll call you back.

End of conversation.

Now this is not what I was expecting. Apparently he was sitting chatting to his mother at that precise moment. Telling Marks parents wasn’t easy either. His mom made the telling part easy, but she was very concerned about me having the baby. Having a baby with OI seemed to be the most horrific possibility. Marks dad had a very emotional response, to put it mildly. My mother didn’t believe me, to begin with. But they all came round in the end.

While I was pregnant, everything seemed to go so well, easy. I read a lot about OI and how it affected people. But none of it really sank in too much. I knew the facts, but living it was a completely different story.