hello from the Windy City... or not...

Well, I tried valiantly to update you all from my phone while in Chicago with Miss Sunshine yesterday. Didn't really work out as planned, though. For some strange reason, it would let me create a post and title it, but when I tried to add a body, yep, nothing happened. Things that make you go HMMMM.

So today was a LONG LONG LONG day. I mean, LONG. We had our six month post-op team visit at Shriner's today. Talk about overwhelming - seeing 8 doctors in 6 hours is a bit much. And then, to top that off, we got to spend 4 hours hanging out at the airport. I don't recommend doing that with a 17 month old, FYI.

So, got mixed reviews today. Miss Sunshine needs her ear tubes replaced - which I obviously already knew, as one came out about a month and a half or so ago. She does have fluid again in that ear, and the ENT said that the other one looks like it is on it's way out as well. They will do the replacement in Chicago. Another up and back trip I am not looking forward to. However, they will not schedule it until she is caught up on her immunizations (we had to postpone her 15 month shots due to our insurance issues - but Daddy Mac's new insurance kicks in August 1, so she will get caught up at her 18 month appointment - so not a huge issue there). So I have to have the doctor's office fax her shot records as soon as they are updated and then they will call to schedule the procedure. So I have no idea WHEN it is happening at this point, just that it IS happening.

She DID pass her hearing test (even though she failed the tympanogram in her right ear - tympanogram is a test checking for fluid in the ears). Now, what they told me on this is that her OVERALL hearing is within normal ranges. She is too young yet to check hearing in each individual ear - so there is a good chance she is hearing better out of one ear than the other, but her combined hearing out of both ears is normal. So that's good. Hopefully once the tubes are replaced, she will do even better - I'm sure she's not hearing as well out of her right ear since it's full of fluid - everything will sound muffled in that ear.

They are a bit concerned about her speech. They want us to up our sessions with Early Intervention, which I will address with our local speech therapist next week when she comes, and concentrate on getting her to correctly pronounce things on her FIRST attempt. They told me that her speech is the best indication as to the success of the palate repair. Meaning, even though things LOOK good (which they LOOK great, according to the plastic surgeon), the underlying muscles and tissues, etc, which are not visible now that the roof of her mouth is closed, may not be good. The best indicator they have of this is her speech - so if we don't get things moving along, she may be considered a candidate for additional surgery. We would prefer she not need any more surgeries, so I am hoping that we can get her speech caught up to where it needs to be. One issue we have is that Miss Sunshine is very much one of those kids who does not want to fail. What I mean by this is that if she is not absolutely sure that she can do something right the first time she tries it, she won't try it at all. She concentrates very hard on our speech when we pattern things for her and try to get her to repeat. But if it's a word she's not comfortable with, she is MUTE. Not a sound. As she indicated today to the speech therapist by refusing to make even one little PEEP while we were in with her. Of course, when we sat down later in the afternoon with the entire team for the final eval, she was Chatty Cathy. Typical. Ah well. I know they didn't mean to scare me with the speech thing, but since I was already concerned about it, now my mind is racing with "what ifs". So, I'm trying to calm myself and think happy thoughts. She WILL progress with her speech like they want, she WON'T need additional surgery. So on and so forth.

That's my updates at this point. If I think of, or remember, more (today was pretty overwhelming as I've mentioned, so my minds something of a muddle right now) I'll be sure to update. But for now, I'm going to head to my nice, comfy bed complete with the husband I missed while I was out of town, and attempt to catch up on some of the sleep I also missed!