Double Trouble update

We have had another great week with the girls. Only one appointment this week with Tiny K and that was it. Our appointments are finally starting to slow down. Troy started back to school on Thursday and our nanny is now working full-time with both girls. All is going well with us. Rylee is eating like a champ! I actually stopped her tonight at dinner as she kept eating and eating and eating. She even ate most of Jordan's meal. She is drinking some liquids by mouth but not enough to get her by for the day. We are still seeing much improvement though. The hard part is keeping Jordan's sippy cup away from her as she thinks it tastes better than hers. We still have to put so much thickener gel in it that it looks like yogurt. She does get a few drinks out of the bath water when I am not quick enough with her and no major troubles yet. We went to a birthday party yesterday with the girls and they had a blast in the water slide. These girls are not afraid of water that is for sure. They even went down the big slide and thought it was pretty awesome. I think we shocked some people when we actually let them do this. They are really becoming very social when we take them out of the house. I am not looking forward to going on lock down during RSV season. A friend of ours came over and took some pictures of the girls at Baker University and it was a lot of work getting them to give us some good shots. I think the camera scared them and they were not enjoying the paparazzi feeling. I can't wait to see the pictures. We won't have too many of the both of them as they both took turns with crying.

A trip to the park

Our nanny survived her first week of watching both girls. We are hoping she comes back this week. I think everything went good and Rylee got to see her nurse a couple times this week so that helped her out a bit. I took Rylee to her special care appointment on Wednesday and she weighed 21 lb 8 oz and is still 29 1/2 inches long. We were discharged from this clinic as Rylee no longer has her trach and they don't see a need for us to keep coming for appointments. I wasn't expecting this to happen so soon and was very sad to say good bye to everyone in the clinic. The doctor has taken care of Rylee since she was in the NICU and she always made me feel very comfortable with the level of care she was giving Rylee. She wanted us to go up to the NICU so we could see any of the doctors, nurses, or nurse practitioners that took care of her. We did see one doctor who remembered her name and he only worked with her a couple days. We also ran into a nurse practitioner that was her nurse at St. Lukes. It felt very good taking her up there and showing them how far she has come in her short little life. We are still going to meet with the nutritionist and OT at CMH to hopefully get Rylee eating all her food by mouth. We are going to start starving her in hopes she will start eating more on her own. We really won't starve her but we are going to only give her half of the pediasure we were giving her by her tube. So far this has been going very well. We took the girls out to lunch on Friday afternoon and they did really good. Rylee ate more than I have ever seen her eat at one meal. The girls will get their eyes examined at CMH tomorrow and we are hoping and praying all goes well. I really hope they don't need glasses.

Topeka Zoo

We decided to take the girls to the Topeka Zoo on Wednesday as it was Rylee's day nurses last day. It was a little warm so we didn't stay too long. The girls enjoyed seeing the animals and Jordan liked feeding the goats. Rylee didn't give up the food and decided it tasted too good to feed the goats. We were very sad after our nurse left and it is going to take some getting used to around here. Rylee isn't going to know what to think when she doesn't show up the same time that the nanny gets here in the morning. We are very glad she no longer needs a nurse to care for her but this is not easy saying good bye. We will say good bye to her primary night nurse the end of the month and that isn't going to be fun either. We enjoyed a BBQ over at some friends house yesterday and today my mom and sister came for a visit. Aunt Kim trimmed the girls hair and we had fun dressing my nephew up in a dress. We put some dresses on the girls and he kept saying he wanted one so I broke out a bright pink one for him. I think he will hate us when I break these pictures out in a few years. Rylee has an appointment with the special care clinic on Wednesday and other than that we are appointment free for the rest of the week. Jordan had a follow up hearing screening on Thursday and not much has changed since her last screening six months ago. We won't take her back for a year as they need her to be developed a little more to get an exact diagnosis of her hearing loss. Their eye appointments got re-scheduled and this did not hurt my feelings. It would have been nice to have them on the same day but I was not looking forward to taking them. Please keep nurse T and Rylee in your thoughts tomorrow as it is going to be a hard day for the both of them.

19 Month Pictures

We have had a great week with the girls. We were able to go visit my sister at the Great Wolf Lodge yesterday and the girls had a blast. We were a little nervous about taking them and it was way better than we expected. They are not afraid of the water at all and I think they would have spent all day there if we would have let them. We are really sad that are day nurse is going to be leaving us sooner than expected as another family is needing her with them. We met nurse T while we were still in the hospital so she has been around Rylee since she came home. I am sure she is not going to have an easy time leaving our family. Our poor nanny is going to get to watch both girls and not have nurse T for company. The girls are a riot so I am sure she will be easily entertained. We have Tiny K here on Wednesday and then Thursday the girls will get their eyes checked at CMH. We are not looking forward to this appointment. They last had an exam in July of last year and it was possibly one of the worst things we had to see our girls go through. We went through months of them getting their eyes examined before they finally cleared them from ROP. After this appointment Jordan will have a hearing test to see if she has any further hearing loss.