Baby Steps!

This is Fiona's preemit outfit laying on top of her! She wore it when she was a month old and it was still big on her!

She wiggles herself from one end of the couch to the other to pinch Zeus, haha!

This is what happens when I leave my coupons on the coffee table and turn my back, haha!

Fiona had her appointment with Pulmonology and ENT on the 18th. The appointment went good, although not as well as we had been hoping. At first everyone was on board for doing the sleep study and getting her trach out! They were in the process of scheduling the study for Feb 1st. In the mean time they wanted to put in a smaller trach and have us start capping it off until then. Well we put the smaller trach in and when they capped it she didn't do too well with it. She had alot of "back pressure". Tom and I are still kind of confused about this. She was still trying to breath too much out of the trach instead of her nose. But how is she supposed to completely breathe out of her nose when the trach takes up most of her airway?! We have no idea. So they decided to cancel the sleep study. She still came home with the smaller trach and also a speaking valve and the caps. The speaking valve works by letting her breathe in through the trach and then the "diaphragm" closes and makes her breathe out of her nose. But this valve can actually go from completely open to completely closed. So right now we are at about 1/2 closed. She is tolerating it very well. We can gradually make our way to completely closed. We put the cap on periodically for a few seconds at a time. The cap makes her breathe completely in and out through her nose so it is a little harder for her, but it seems like she really likes to make noise! We will work with the valve and the cap getting her to breathe through her nose better for a couple months. We see them again in April and hopefully she will be ready for the sleep study by then!

She has been working on her walking and is doing really good with it! She now takes steps without us having to push the backs of her feet. She loves to walk around the house and I find her trying to get down off my lap because she wants to walk! She can also stand for a minute or so while playing with her music table or at the couch or coffee table. We are hoping that after her next surgery she will have better balance and will be able to take off!

Speaking of surgery, we have 3 days! I have the same flood of emotions as last time... scared, anxious, excited, nervous... I know she will be fine. I am mostly nervous about her recovery. She has become very clingy to me lately and I have no idea how she is going to react to the nurses and doctors. It gets worse when she is tired and sometimes cries even when I leave the room at home! I might have to sleep in her room (I hope not!). Tom and I just booked a hotel room for Tuesday night because the weather is supposed to be getting bad. It will be Fiona's first hotel stay and Tom said he is kind of excited. I told him that it is pretty bad that staying in a hotel in Pittsburgh the night before Fiona's surgery is like a mini-vacation for us! I guess we have to take what we can get!

Please keep Fiona in your thoughts and prayers on Wed! I will update to let everyone know how it went!