More nerves

This afternoon is our appointment with the clinic at Children's.  We will be meeting with the Genetics and Orthopedic teams, I assume, to talk about Maggie's future.  I am very apprehensive and anxious about it.  Last time we met with the Genetics team it was when they pretty much confirmed that she had OI, and not in the most sympathetic manner either...talk about a lack of bedside manner.

I woke up at 4 a.m. yesterday morning and the only culprit I could determine was this appointment.  I’m not even really sure what I am apprehensive about.  I guess it’s that they can finally “label” her with Type III or Type IV.  I am worried because the differences between these two are tremendous.  Type III sounds so much more severe, whereas IV seems so much less severe.  I know I shouldn’t worry about it so much because each person with OI is affected differently.  It’s just that having her labeled with a Type means that it is real.  Right now at least we can hope that it’s IV.  I can look up the characteristics and tell myself that it seems like she has IV.  If they tell us that it is III there is so much more to worry about.  Although we will always stay positive about her diagnosis, her having Type III will really just be another devastating piece of news. 

I guess I just would really just like some type of good news at this point.

Here I go again though, I shouldn’t worry about things I don’t know about or control.  We will find out soon enough…

Some other news is that the school board of the school district where I work approved my leave last night.  I am so thankful for their consideration.  So, what this means is that we have the next year to devote to Maggie and her care and treatment.  I’m thankful that I even have this option.  It will be a rough year with treatment, but she is already growing so much, I just can’t wait to see what she is like in a year’s time.  Along with that come many worries also though: once she begins to crawl and walk will she fracture more?  I’ve read that many children with OI fracture much more during this time.  I’ve been trying to do little exercises with her each day so that she strengthens her leg, arm and neck muscles, but I don’t know if it really makes a difference since OI affects the composition of her bones.  All of the exercise in the world might not help, but I’m not taking any chances.

It is sad that every time I think of something exciting that may happen in her life my next immediate thought is how she may get hurt from it.  But, I’m sure with time that will just be second nature and it won’t make me so sad.

I really don’t want this blog to be something that makes people sad when they read it.  I know right now it seems sad all the time, but I think that is because I am trying to work through all of these feelings.  Really, our days are filled with fun and smiling and cuddling.  It’s only when I am left to my own devices that my mind begins to wander.

Keep your fingers crossed…