Monday, March 3, 2014

Time MARCHes on...

Thanks to a little winter weather advisory, classes were cancelled tonight so I am gonna take advantage and update a little bit on what's been going on. Addie had her last eye surgery follow up in January. I had noticed that Addie's right eye had started crossing in again just the week prior. So now not only is she drifting up vertically but she's back to crossing in again. Dr. R point blank told me that she is the most complex case of estropia she has ever seen. Way to be an overachiever Addie!! ;) Dr. R feels like she's crossing in to accommodate for her somewhat farsightedness ... sound familiar? This was the diagnosis we had originally back in March of 2012. So Addie was written a new script for glasses and we are going to try that again. I feel a little bit like we are starting all over again. Like maybe by removing the muscle segment that we did to correct that last 20% deviation it re-weakened her eye all over again and now the 6th Nerve Palsy is pulling her eye in again. I voiced my mom theory to Dr. R and she said that it's possible but that generally that would mean it would be pulling in gradually and not intermittently crossing in. But with Addie, who rarely fits any textbook case, she wouldn't take anything off the table. 

Crossing in to focus on the camera. It doesn't happen all the time but when it does, it does !

We got her glass script filled and she's pretty darn cute in her glasses --maybe even cuter this time than the last -- and the amazing thing is she wears them. She asks for them. So maybe they are helping her see. But I can't tell that they are helping with the eye cross all that much. Yes, it's helping her not cross when she's trying to focus but it's not helping the cross all the time. So I feel like we may be looking at another round of Botox, basically starting all over on the 6th Nerve Palsy diagnosis (where the stronger muscle pulls the weaker muscle over). We are scheduled to see Dr. R again next week so it should be an interesting appointment. Addie asks to go see her all the time. It's really sweet. And very telling that she is the most frequent doc on our roster.

Speaking of other docs, she's scheduled to see her neurologist tomorrow for a six month follow up. That is if the weather behaves. Doctors' offices around here follow the local school schedules so if we have any school delays, the appointment will be rescheduled. Thankfully it is just a follow up and they can call in any refills if we do have to reschedule. If we do have to reschedule, this will make the third doctor's appointment we've had cancelled for ice days ... Crazy weather we've had this winter! 

Dr. N is also on the schedule for next week for her Botox follow up for her leg (rescheduled from early February). We didn't see any improvement at all with the Botox on her leg so her PT has suggested serial casting and is going to email Dr. N and see what she thinks of that option. I am excited about the option if it works. The idea is a new cast every week, like a semi-permanent AFO that she would wear around the house with a boot over it so she could walk in the cast. Hopefully, wearing it for a full week would stretch her leg/ankle out and then we would re-cast weekly at that new stretched position, and repeat weekly, getting a better stretch each week, hoping to get back range of motion in her ankle. Her tiptoe walking on her left foot has gotten a lot worse. She used to barely get up on tiptoes and now she's walking like she's in a stiletto and she's falling a lot more. Thankfully the AFO helps but the goal is to get range of motion back and to prevent contractures and her left leg getting shorter than the right. Botox in her leg may be something we try again but I am hoping we can try the casting as an option first. The cast is removable for bathing so that's a plus! 


In other news, Addie's pre-school eval is scheduled for March 25th which is crazy!! She just turned 33 months old!! WOW!!  The big 3 is right around the corner! I am excited about the pre-school eval and hope that we can get the services set up for next year that we are wanting. We plan to continue clinical PT through Dell. We really like the facility and all they can offer there and she really likes her PT. She asks to go see Erin all the time. As she gets older and can follow instruction better, I feel like she will be going more than just weekly. Pre-school, however, is really going to be an awesome thing for Addie. She asks to go to school all the time. I think the social aspect will be great for her and we are hoping she can receive other services through the school as well, like speech and OT. I will definitely update the blog when I know what her IEP goals are!