Freaky Friday

This is how our day started out...




With a couple of crazy goof balls runnin the show! As always.

Well actually my day started out 4 .5 hours earlier when I woke up at 1:45 AM and no matter what I tried I couldn't go back to sleep! So pretty much this Friday the 13th started out crazy and stayed that way all the long day!

Riley and I spent half the day at TCH. Not to my surprise she refused to sit in her wheelchair. So today marked her first time actually walking through these very familiar halls. In the waiting room she walked up and down this little ramp for a full 30 minutes and drew in the whole room with her proud smile!


She had to have some lab work done first. She is getting so much better at it, but I'm not! It still stinks! And then we had a Neurology appointment with the wonderful Dr Clark. He takes his time, answers all my questions, is great at celebrating Riley's achievements and sincerely cares despite being a very busy head of neurology at a prestigious hospital.

Riley's neuro check up was pretty good but then he says "so have you had her scoliosis officially diagnosed yet?" Ummmmm. Say what?!? So now we have an appointment to see Orthopedics. Fantastic! Lets just add another specialist to our long list. But please let's not add any more challenges for this sweet girl!! If I just ignore it then will the possibly new diagnosis, the symptoms, the treatment plan and visit schedule just go away? Please say yes! Cause I'm not sure I can add another issue!

And the stress mounts.

And speaking of new diagnosis, we got a crazy one today! Sialorrhea. That's a real thing! It sounds similar to diarrhea and saliva because its the medical term for excessive drooling! We have alot of diagnosis but that's got to be the craziest! We are gonna try those ear patches you wear on a cruise for motion sickness to see if they help the drool, otherwise known as "Riley juice."


After we finally left the hospital I fed Riley lunch and took her to school. Only to be further frustrated on an already stressful day. I happened to meet a new member of Riley's team, one of her therapists at school. Unfortunately it really didn't go well. It is extremely difficult to rub me the wrong way as I generally get along with almost anyone. But when you just met my sweet girl you are not suddenly an expert on all things Riley. So please don't tell me I'm doing things wrong!! I'm not clear yet on what I need to do about that situation but I can't think of a scenario where I'm not going to have to ruffle some feathers to get what's best for my baby. So be it.

And the stress mounts.

After stewing over all the events of the day and making phone calls to Miss M and TCH to schedule new appointments, we ended up actually having a great dinner and night at Sa's. However on the way home Riley was screaming at Keagan and I. She was really, really telling us something as she looked back and forth between her sister and I. It was fantastic that she could use her voice like that! And I was thrilled she was talking so much. But it absolutely broke my heart. I can't even express how deeply I wish I could understand all that my baby has to say!

And the stress mounts.

It was a freaky Friday. One leaving me exhausted, physically and emotionally. I just don't know how much more my sweet Riley can take. Actually lets be honest, she is the strong one that will face any challenge head on and conquer it! It's me that I'm worried about. I don't know how much longer I can watch as more and more challenges are thrown at my girl! Maybe I'll be a little tougher once I get some sleep. I sure hope so!