Our Meeting with Shriners, Part 2

Shriners, Part Deux

Monday morning we woke up bright and early to go see the doctor at Shriners again. My mommy and daddy were very relieved, but also very confused after hearing what the doctors had to say about delaying treatment at Children’s.  Of course they don't want me to have to go through treatment if I don't have to, but they want to make the right decision.  So they wanted to hear what Dr. S at Shriners would say about me and my progress.  

Since OI is so rare, and the treatment so new, not much is known about the affects of treatment on people when they get older.  My mommy and daddy think that this is very scary.  Also, the doctor at Shriners wants to put a port in me.  That is a little thing that makes it much easier to get my medicine, rather than getting stuck with a needle each time..ouch!  Since I am going to have to go for treatment about every 2 months for 3 days each that would be a lot of sticks, but they aren’t sure what to do just yet. 

Dr. S. at Shriners was also impressed with me!  He said that I look more “intermediate” rather than pretty severe, as they thought in the beginning.  I’m sure I really scared everyone before because I had a lot of breaks.  But, I am eating and growing and everyone seems to think that I am doing great!  And that is great news.

Dr. S still thinks that I should have treatment because he says it has been shown to really help kids with OI, even though I am doing better than he thought.  Mommy and daddy need to decide soon, but how do you make a decision like this?  I don’t know, but I’m glad I don’t have to make it.

As usual, during the exam I was a peach!  I was very interested in all of the people in the room, and they have a big, huge mirror there that I love to look at.  I see this really cute baby looking back at me and I would really like to play with her.  She seems so interesting and nice.  After a while of being perfect I got tired and hungry and I started to cry.  “Everybody out!” I shouted, but they really didn’t listen.  Eventually I gave up and quieted down. 

So now we feel a little bit better that all of the doctors seem to think I am doing better than they thought, which is great news.  But (yes, there is usually a but) there is still a lot for us to decide.  

Between looking for a house, mommy switching jobs, daddy working long hours, and all of the decisions about my health you would think we wouldn’t be able to sleep at night!  Well, I don’t know about them, but I slept 9 hours last night!   Hooray for me!