Sunday, April 11, 2010

Yummy BBQ time

My sleeping beauty. I think we are getting our money out of this swing.

One year ago yesterday after her g-tube surgery. So scary to us.

That is our little Monkey climbing things.

Boy are we in trouble!!

This is Rylee after her cup feeding. A huge mess!

Too busy to look at the camera.

Troy was in a BBQ contest in Osage City this weekend so I loaded up the girls all by myself and took them to go see their daddy in action. It is about a 50 minute drive and the girls were great the whole way there. I only had to stop once to suction Rylee so that was nice. I put her on her sat monitor and kept a close eye on her in case she pulled her trach out or needed suctioned. We probably really are not supposed to travel without two people in the vehicle but I needed to get the girls out of the house to enjoy the beautiful day. It felt really weird loading them up and traveling with them alone as we have not been able to do this until now. It was alot of work getting them there and home but so worth it. Troy got home around 6:00 last night and went straight to bed so he could get up and do his Rylee duty as we didn't have a nurse. Rylee slept really good and didn't need much attention at all through the night. Troy and I took Rylee to CMH on Friday for her swallow study and we didn't get the results we wanted. Rylee is aspirating on her liquids and now has to have any liquid thickened to honey consistency. It is almost like yogurt once you mix the liquid with the gel. She has to take it from a cup as it is too thick to go through a nipple. She participated very well and I was so proud of her. She was strapped down to a chair and several people were in the room watching her and we had to move quickly because of all the radiation. After her study we went up to the OT room and they worked with us on what to do with her. Her liquid also has to be chilled and she can't have any liquids warmed up as the cold will help her swallow better. The OT specialist was shocked that Rylee did so well with the cup and kept bragging on her. I was still in shock that she is doing worse with her liquids than she did during her last study. Hopefully once she gets her trach out we can try it again to see if she will do better. She can't even have ice cream unless it is thickened. Poor girl! We also have to drain and squeeze the fruit as it has too much liquid for her to handle. Jordan enjoyed the afternoon with Grandma Bitler and they had a great time together. She was a little sad when we left and kept going to the window looking for us. Jordan is now walking almost 100% of the time and it is so cute. We are still working on getting Rylee to stand unassisted and then I think she will take off in no time. We have pediatrician appointments on Thursday and the girls will get their 15 month vaccinations. I am hoping they both have good weight gains. I am a little worried as Rylee puked most of her feedings for several days and didn't eat much at all by mouth. We ended up just giving her pedialite all day on Tuesday and by Thursday she was back to full feedings and has done fine since then. She is still needing a whiff of 02 at night and seems to be getting back to herself. I posted a picture of Rylee after her g-tube surgery which was one year ago yesterday. She has come so far since that day.

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