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.

19 Months

Rylee winking


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The girls will be 19 months in two days. They are a mess! We took them to the pediatrician on Thursday and Jordan weighed 22 pounds and was 29 1/2 inches with her clothes, wet diaper, and shoes on. Rylee weighed 21 pounds and was 29 1/2 inches as well. We have really been trying to get them to eat good and it feels like we are constantly shoving something into their mouth or belly. Rylee is still only taking a few ounces of her thickened liquids by mouth and seems to be more interested in it. Jordan has really started liking her bottles just when we need to start weaning. She won't drink her milk from the sippy cup so we need her to work on this. They haven't had much of a growth in their height during these past few months but the doctor didn't seem too worried. We don't have to go back for a check up for six months. They received a couple of their vaccinations and will hopefully qualify for synagis (RSV) vaccinations this fall and we will just take them in monthly for those. The doctor was impressed with how well Rylee was doing without her trach. I took Rylee to CMH on Friday for her ENT appointment and all is well with her. The doctor was a little worried as she sounded congested and she thought it was wheezing at first. The girls have had some runny noses since Wednesday and we are thinking it is allergy related. The doctor still tells me they can't get allergies until the are 4 years old. We have been giving them some nasonex since Thursday and that seems to help. We had our caseworker that monitors our nursing hours here on Friday and we are done with nursing as of August. We are very sad to see our nurses leave as they have been with us since the beginning. We will be so glad to not have to deal with our nursing agency. We are appointment free until the end of the month and the girls will get their eyes checked and Jordan has to get another hearing test. I will post pictures later this afternoon.

More pics

Trach free fun

Now that the trach is out we are a little more adventuresome. The girls love the water. We aren't officially cleared to let Rylee swim, but she wants to do everything that Jordan does. We are being very careful with her though. We took our first dinner adventure out as a family. Famous Dave's was the first victim. Jordan did a great job. She would eat a shoe if it had bbq sauce on it. Rylee didn't like being in her chair. She wanted to be held the whole time. Mom took care of that. Needless to say, both her and Rylee wore a little bbq sauce home. Rylee will go back to ENT on Friday so they can check her out. It has been such a relief. We can't wait to get out a little bit more.

No post

Sorry no post tonight. We were too busy enjoying our life without a trach. I will post pictures and a post tomorrow night. Sorry

Happy 4th of July!

A few 4th of July pics from last year.














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It is feeling real weird to not be constantly on full alert. We couldn't leave the room that Rylee was in, we had to make sure she was moist enough, suction her airway to make sure she could breathe, and even just checked to make sure she still actually had an airway. That's not counting all the feeding issues that come into play and making mental calculations on whether or not she's gotten enough fluids or calories for the day. To put it as simply as possible: it was exhausting on the best of days. We can't be any happier around our house. Rylee is doing awesome without her trach and doesn't act like anything is different with her. She still isn't making much noise but that will just take some time. When she does cry it just about makes me cry too as it is so soft and it almost sounds like a little kitten cry. I still can't believe that my dream finally came true. As the doctor told us, we are not out of the woods yet but we are very hopeful all will be okay with Rylee's airway. We will take her back to the ENT doctor in two weeks and then they will schedule another bronch in four months just to make sure her airway is not causing her any problems. We took the girls to Leroy, Ks to celebrate the 4th with my family last night and we had a great time. Everyone was very excited to see Rylee without a trach. The girls are really keeping us on our toes. They had fireworks, rocks, dirt, and whatever else they could find in their mouths. I have tomorrow off so Troy and I are going to go enjoy the day together since we have our nanny and nurse coming. I think Troy is ready for some time off from the girls as he had them all to himself last week.