Sunday, April 25, 2010

Oh Rylee what now

Jordan loves to go outside when we take Maddie out.

Rylee is not sure about heading outside yet.

Rylee standing!! Yea!
Rylee smacking her lips after she applies her lipstick.

Ry and her best friends monkey and lamby.

Rylee and her skinny legs. These shorts are size 6 months!

The only way I could get them to eat this morning.

We spend alot of time on the ledge.

Jordan sleeping. I know alot of sleeping pics. It is getting harder and
harder to get pictures of them as they are on the move non stop.

They loved to look out the window and watch daddy mow. Jordan
waved and said hi the entire time.

This is how I found Ry the other day. So cute.

Jordan's bed head.
Smiley Rylee and her snotty nose.

It is a good thing she has a monitor on or she would not be sleeping like

We took Rylee for her pre-op appointment on Wednesday and they were not comfortable with her having her scheduled bronch on Thursday. I told them about her recent symptoms and that she was needing oxygen at night so this concerned them a little bit. The doctor heard some wheezing in her lungs so we decided to be safe and schedule it later in the month. I was very disappointed after hearing this as this bronch was going to show us exactly what type of surgery she would have in May and also make sure she was ready for it. We were not able to get the bronch re-scheduled until 5/14/10. Her reconstructive surgery is still scheduled on 5/19/10 so hopefully we find out good news on the 14th. After this appointment nurse T and I took Rylee down and fed her some lunch and tried to forget about the news we received. We went up for her special care appointment and I quickly quit feeling sorry for myself after seeing all the babies hooked up to ventilators. This reminds me that we are very blessed that Rylee only needs a trach and g-tube and will eventually not need either of these. It is very sad seeing those poor little kids hooked up to all the equipment and I don't see how those mothers can care for them all by themselves. Rylee was weighed and gained two ounces so she is up to 19 lb 2 oz. She hasn't had much of a weight gain since our last visit there but they are not too worried as she had been sick. We all agreed that Rylee is probably just dealing with allergies or the medical term for children "reactive airway" and just needs some time to get her lungs stronger to handle it. We have had a great weekend with the girls. They are a blast to be around and we have so much fun watching them learn new things. Rylee is just about walking now. She can take a couple steps and is standing alone for a little longer then she was. We had Tiny K here on Tuesday and she signed "more" several times while we were rolling a ball back and forth with her. I was so proud of her after she did this and we were all filled with excitement for her. I even had a few tears after seeing her do this and get so excited. She hasn't done it much since then but we are still working on it. Jordan has really progressed with her speech and is saying more and more everyday. You can't really understand what she is saying but she repeats a few things after we say them. She is practically running now and is keeping us very busy. The girls are now fighting with each other and that brings on some drama. Rylee likes to pull Jordan's hair and Jordan likes to head butt Rylee over. They have even wrestled a little bit if one of them is in their way. I think we are in some trouble! We don't have anything scheduled this week other then our March of Dimes walk on Saturday. I am so excited to participate in this walk and we are looking forward to seeing everyone. We are still taking donations if you want to still donate. The site is in the upper right hand corner if you are interested in donating to the March of Dimes. We still need everyone that is walking with us to sign up as walkers so if you haven't done this please try within the next day or two. When we walk on Saturday, I will be thinking of how blessed we are to have our girls and to know that if it wasn't for all the medical research our girls would not be here with us. I know it will be emotional and I will be thinking of how lucky we are every minute and I also will cherish the fact that I have a stroller full of two survivors to walk with me.

1 comment:

  1. I LOVE the picture of the girls waving at Troy while he's mowing! Cutest picture of the week!!! Miss you guys!