Better Days

Casey had a fun weekend. Her cousin Riley, Aunt Molly, Cappy, John and great grandparents all came over on Saturday. This was her first chance to meet Riley. They have been living in Lubbock and not able to make the trip down to Austin until now. They are in the process of moving to Dallas so hopefully Casey can hang with her cousin more often now. They had a good time. Casey watched Riley play with all of his trains.

We took Casey to see her pulmonary doctor this afternoon. He did not see that she needs to continue the crazy stinky treatments anymore (thank goodness). We are going back to our twice a day routine. He also said that if Casey seems to be feeling better that that means more than an xray. He actually said it could take 10 or more weeks sometimes for xrays to show fully clear after getting sick even though the patients seem better in days or just a couple of weeks. That was a little reassuring. I think we have decided that we will use the pediatrician for vaccinations and simple stuff. Moving forward when Casey gets sick we will just get her in to see one of her specialist right away. They see more kids like her and are just in a better position to know what to do. Now that we have a nurse coming once a week we can have her help me take Casey to the specialist if we need to. We just think it will work out better in the long run if we start approaching sickness this way.

Casey officially started Vision Therapy today. She has met the teacher a few times and they have done a little bit hands on to get an idea of what to work on. Today was the first day that she came and spent a full 45-60 minutes just working with Casey. Casey had OT this morning too.

It was a super busy day. We had the extra treatments and CPT in the morning, got dressed, then we started her food and made a quick pot of coffee. By the time the coffee brewed we had to get Casey ready for OT. We got set up and OT went from 9:30-10:30. Then we had 30 minutes to change her diaper and read a story. 11:00 VT started and went until 12. We had just enough time to get Casey and her gear packed up and head out for her doctor appointment. We got there about 10-15 minutes early. We ended up having to wait a really long time. Casey did not have a nap at all. Toward the end of her appointment she crashed. The doctor had to flip her from side to side and she did not even notice. Of course as soon as we stepped outside to load up the car she woke up. We did not leave the doctors office until nearly 4:00. We got home just before 5:00. By the time I got Casey all settled in it was already time to start working on dinner. Poor Casey fought off sleep so hard. Around 8:30 tonight she was so fussy and tired we decided it was early to bed tonight. She is out and will probably sleep pretty good tonight. Luckily we don’t have much tomorrow so we can rest and recover from our busy day.

We should try out the Farrell bags again this week. I will take some pictures and post progress. We hope everyone is well.

This entry was posted in Casey.