Sunday, January 30, 2011
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!
Tuesday, January 11, 2011
Monday, January 10, 2011
Miss Fiona has decided that she is going to smack me every time I tell her no! She really likes to pull on the gauze on her O for some reason. Well I constantly tell her no and pull her hands away. The other night she smacked me twice when I did it!
She is just a big ball of energy! You can tell she just wants to get down on the floor and play. Hopefully soon! She signed her first word yesterday! I asked her how to say "hat" and she surprisingly did it for me! Luckily my mom was there to witness the 4 times she did it because now she won't do it anymore and won't even show daddy! We are working on walking with her and she is doing great. At the beginning we had to move one foot and she would move the other, but now she is moving both pretty well until she gets excited and then just hops! We have also gotten her to stand for a few seconds at a time while holding onto her play table
We have an appointment with Pulmonology and ENT next Tuesday (the 18th) to discuss where we go from here with the trach/vent. I can't remember what I said in the last post, but she is off the vent all day and can be most of the night. The only issue we are having is coughing from her being so dry. So when she starts coughing we put her back on. Her nutritionist is very worried about her lack of weight gain and so now is her Pulmonologist. We don't really know what else to do but to keep trying to get her to eat as much as possible. I weighed her this morning and she was 13 lbs. 11 oz. We really hope this doesn't interfere with getting her trach out. Tom said they better have a really good reason not to do the sleep study or he is going to be furious. We are both just so ready for the trach to be out and have somewhat of a normal life. We are so very lucky that most of her issues are not a lifetime thing. I can't imagine having to deal with a trach/vent her entire life. I have *kind of* gotten to have some normal nights with her! We only have a part time night nurse now. So on the nights that we don't have a nurse I take her in our bedroom and let her sleep in bed with me. (Tom is on 3rd shift, so it's just me and her!) I don't really get much sleep, but it is so nice to have her in bed with me! Tonight is one of those nights :)