Our Pride and Joy

Here are the pictures we had taken two weeks ago by a friend. As you can see Rylee was the model and Jordan didn't want anything to do with getting her picture taken.

20 Months/16 Adjusted

The girls are 20 months old as of the 20th of this month. They are continuing to thrive more and more everyday. Rylee has been eating very well lately. We give her water and 8 oz of pediasure thru her tube and everything else she is taking by mouth. She usually drinks about 4 to 6 ounces of her thickened pediasure and some juice throughout the day. I am weighing her on a regular basis to make sure she doesn't lose too much weight. We will be done with our night nursing as of 8/30 and we are looking forward to not needing nursing services. Troy and I were able to go on another date this weekend as our nurse was needing to make up some hours. We really miss our day nurse and we are not looking forward to saying bye to our two night nurses. They really don't do much with Rylee now that she doesn't have her trach. She still gets prevacid at 5:30 a.m. and other than that they just monitor her sats and make sure she is comfortable sleeping. It is a lot different than when we first came home. She had feedings and meds every 3 hours. She still wakes up several times at night but she puts herself back to sleep. She is really starting to vocalize and repeats several words a day. I am going to have to break out the "ear muffs" soon as she did repeat a word she shouldn't! She is still pretty quiet and her voice doesn't seem to be getting any louder. I am not too worried but just something we will have to keep an eye on. Our little Jordan has a mind of her own these days. She has been throwing some fits and gets very upset if she doesn't get her way. We pretty much just ignore her and try to focus her attention on something else. We are still working on getting her to take her milk from a sippy cup. I haven't talked Troy into just getting rid of them. He assures me that she will not go to high school still drinking from a bottle.

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.