Theme Week and Bus

School Bus

This was Kylee's first week riding the bus. She LOVED it. She has blown me away with how well she is enjoying everything. On Monday I had to go into work so I put Kylee on the bus and was crying my eyes out (I know...It wasn't the first day of school but another big step for our little girl). I got in my car and the song on the radio is the song on her blog page. So of course I cried some more. Then I got a text from Kylee's nurse (thank goodness) saying how much enjoyed the bus ride and that she was looking out the window on each side of the bus. That made me feel so much better.

This is Kylee getting loaded into the school bus.

This is Kylee inside the bus.

This is the bus driving away with my daughter and me crying.

Theme Week

This week was theme week at school and I had so much fun with. Monday was Crayon day,

Tuesday was twin day, Thursday was super hero day and Friday was Bulldog/school spirit day.

So here are some pictures from the week.

This was Monday when she was a pink crayon.

This was Tuesday twin day. Her and her nurse Teresa are dressed like twins.

This was Thursday super hero day. Kylee is spiderman and Super Nurse Marsha.

Kylee on Friday for Bulldog day..a little to early in the morning for her.

Kylee and my niece Danelle at the pep assembly. Kylee's class is at the high school.

Kylee at the pep assembly.

GI Appointment

I called on Wednesday to schedule a GI appointment as it has been 3 months since we had seen him and Kylee has still been having #2 issues since December. It just happened some one cancelled so we were able to get in on Thursday. We got her there and they weighed her. She is now up to 28 lbs and 10 oz. Now this is good and bad. We tried for so long to get Kylee to gain weight and now she is at a healthy weight but she is starting to lean the other way. She gained 2 pounds in the last couple of months. So he was going to cut back on her calories but then our nurse brought up her thyroid test. She had 2 abnormal thyroid test in December and she was due to have it checked again in January. So we are having that checked next week. If she is gaining weight because of her thyroid we will have to see yet another Dr to get that all figured out. If her thyroid is fine then we have to cut back on her calories. This is very common in 1P36 kids (weight issues and thyroid issues). Then we talked about the diapers. He feels she has an over growth of bacteria in her small intestine. He told me all the symptoms and she had everyone of them. They treatment for it....same as c-diff. So every month from the 1-7 of the month she is going to take a medication. If the diapers stop or get better then we know that is what it is and she will stay on that routine. Medicine every 1-7 of every month. If it doesn't work there is a combo of 3 medications that she can take the same way as the other one (1-7 of every month). We are hoping one of those works. I guess you can test for it but you have to be able to follow directions and blow into a tube when they tell you to. Then we had one last issue. Kylee GJ tube has been leaking but only when we give her medication. It doesn't leak any other time. So he thought first we should try replacing it and if that doesn't help then we are going to go to the next size. He said it makes no sense that it doesn't leak any other time. He said Kylee you are a mystery and we all laughed because we know she is. He also said one last thing that really made me feel good...at the end of the appointment he said he always enjoys seeing Kylee and basically that she has a good family and good nurses that he enjoys seeing also. Just a nice fuzzy and makes you feels good. You need that every once in a while.