Quick Update

Faith had a great visit from her teachers this afternoon and they brought her some cool things - 2 chrysalis (caterpillars in their cocoons) and a cup with a sunflower seed planted in it, and a t-shirt from the Deaf Hard of Hearing Track and Field day that happened today.  I'll have to take a picture of the t-shirt, because it shows a major change in the Deaf community, that BAHAs are beginning to be common enough that they included it in their drawing using different hearing aids as the letters/pictures on the shirt. 

I of course didn't think to take a picture of Faith with Mrs. Nancy Frank, Mrs. Karin Leonard or Ms. Kelly.  Guess we will have to have another visit with them next week to do that!!  Faith really enjoyed seeing them and I can tell it's a little stressful when she hears someone is going to see her for the first time, whether it's one of the neighbor kids, her teachers or when I tell her I sent a picture of her to Mrs. Frank to share with her class.  So, it's good for her to realize that no one cares that she is wearing this halo device, they still see her as Faith, their friend, student, sibling, aunt (to Carly and Hallie) and of course, daughter - our precious daughter!!

We still need to get Faith scheduled for an X-ray.  We tried to get it done on Monday, but ran into some difficulties.  Dr. Gordon (her surgeon in Cincinnati) tends to think everything is easy and had suggested we could just do the x-rays through her dentist office instead of going all the way to the Children's Hospital here which he knows isn't close to us!  But, in reality, it was very difficult.  On the phone it was all fine, they said sure, bring her in.  But when Fred got their with her, they didn't know how to deal with it.  They had all these questions about the halo, how they would take an x-ray with it on, etc.  Well, it's not like we can just take it off to take a picture and then put it back on!

So, poor Fred thought he just didn't know enough to answer their questions and he couldn't reach me on the phone (after he called me and specifically asked me to answer my phone if he called, and then I just forgot and left it on my desk and went to a meeting - not good).  Anyway, I told him later, there was nothing I could have said to help, they were just the wrong place to take her.  So, I ended up calling Children's Hospital, and explaining that we saw their craniofacial surgeon (who specializes in cleft lip/palate surgery, not jaw distractions) awhile back and he knows Dr. Gordon and agreed we could work with him if Faith needed to be seen while we are home in between her surgeries and that we needed to get x-rays done and have them emailed to Dr. Gordon.  So they said sure, they could do that for us, but I needed to have Dr. Gordon's office fax them the directions (which I already knew - he wanted two x-rays done at 72 inches away from her face - one profile and one straight on. but who cares what the mom knows, have to have an order from the doctor) Okay fine.  So, I called Dr. Gordon's office and spoke with a nurse I haven't met there yet, and she said she would get that done and fax it off.  Once Denver Children's craniofacial team gets the order, they would pass it on to radiology who would call us to schedule the appointment (oh, and they have a satellite location in Parker, which is only about 15 minutes away from us).  But, we haven't heard from them, so I guess tomorrow I need to call both places back and find out what's happening.  We really should have done the x-ray at the beginning of this week.

Sorry for my long rant about that, but it's just a typical frustration we deal with in coordinating Faith's care!  Also, I'm a little worried about whether everything is good, for two reasons. 

1. The pin turns much easier on her side where they did the scapula graft than on her better side.  It could be nothing, but I'm worrying it's because the new scapula bone isn't connected to anything and therefore we are not pulling the two bones apart, but just pulling the new bone forward without distracting it where the cut was made.
2. The wire that goes through her chin seems to be sticking out much further on the bad side while the better side of her jaw still looks the same as it did after surgery.  I can't quite figure this out since it is just one wire going from one side of her chin to the other.  Unless her chin is getting narrower, I don't know how more wire could just start sticking out when it didn't before.  Sorry I don't have any pictures of this right now, but I asked Fred to take some pictures tomorrow so I can send them to Dr. Gordon to look at.
3. Finally, this isn't something going wrong, but we are almost out of length on the screw that we are pulling her jaw forward with.  Once it's done we are supposed to started turning another set of pins on the back of the halo device which I'm not quite sure how well it will work.  So that's just a little worry that will most likely go away as soon as we have turned the new pins and know that it works.  Again, I know a picture here would help a lot!

These are the reasons why it would be so much easier if we lived close to Cincinnati or if we had stayed there for the whole time like we did when she was 2, or why I just want to get an x-ray done and emailed so maybe Dr. Gordon can tell me none of these things are issues to be worried about!!!

Okay, that's enough for tonight!  Hopefully I'll be able to post some pictures tomorrow night.  Faith's jaw is already distracted so far it's hard to believe!  I think we've already gained almost an inch in length - last time it took 4 weeks to gain 1-2 cms!    Tomorrow night we are going to a Rockies baseball game as the Yankees are in town and of course that is Fred (and Anthony's) favorite team.  So, cross your fingers that we don't get rained out!

Thanks for reading!
Robin