Sunday, June 6, 2010
14 months adjusted
The girls are now 17 1/2 months old but only 14 months adjusted. Rylee is now walking very well and she hardly ever crawls now. We are unable to hear any of her little sounds as she has a stint in the reconstructed area and it will not allow air to flow through the vocal cords. We are very anxious for her bronch on Wednesday and praying for good news. Once the stent comes out we will be able to cap her trach and will be able to hear most of her noises that she makes. She started to eat this weekend and even took some of her thickened liquids today. We had a bit of a scare on Monday night. Rylee woke up at 11:45 p.m and coughed out some blood from her mouth and trach. It sure freaked her nurse out and she was ready to call 911. We decided to just call the on call special care doctor and she told us to stay home unless it happened again. Thankfully it didn't happen again and she hasn't had any blood since then. We are thinking maybe it was just a scab from her tonsils and hoping it didn't come from her reconstructed area. We got the baby pool out and put Ry's HME on and then put her mask over it and let her get in and play for awhile. I think she had more fun than us as we were worried she was going to get water down her trach. I didn't get any pictures as I was too busy with keeping her head out of the water and we had to suction a lot. Jordan screamed for the first few minutes and once Rylee was out of the pool Troy got her to calm down and then she had a blast. We are really looking forward to our neighbor getting his pool opened so we can just put Ry in one of her floats. We are going to the St. Lukes NICU reunion on Sunday and really looking forward to seeing everyone. It will be a little different this year as the girls will be able to walk around and play in the toys. That is if I take enough lysol! We are still having trouble with our nursing agency and it is about to send me over the edge. I think I am going to hand the responsibility over to Troy to handle from now on. We haven't had the coverage that we would like and it makes for some long nights around here. I even called another agency on Friday to see about changing our agency. We will keep you updated on Wednesday after Ry's bronch and hopefully we don't have to stay the night.