Our First Trip BACK to Riley

With the weeks commotion settling, I finally have time to update you on Sophia's first trip back to Riley. Friday, as excepted, was very busy and very long. Sophia and I were up at 4 am. I guess she decided she was anxious and ready to go. So we got up, started our feed and medicines and then dozed back off for a few minutes before the nurse arrived to help with getting bathed, packed and loaded up for Riley. We were all out the door by 7 am. Our first stop was an ultrasound on her kidneys and then off to an abdomen xray. Sophia did wonderful for them both. She did not fuss a bit. After that we headed to see the urologist about her kidneys. Sophia is still showing grade 1 hydroniphrosis (inflammation of the kidneys). She is also still having grade 4 reflux back into kidneys. It is worse on the left side. The doctor suggested we switch to a different antibiotic and give it time. If time does not seem to heal her kidneys and if she starts to show signs of infections then we need to start talking about surgery. They said if anything, we hope to ride it out until she is at least school age (4 or 5) before we do surgery in order to rule out time and growth. However, it anything changes, surgery may come sooner. For now we wait and see as per usual. After that appointment, we went upstairs to see our ENT doctor. We had an hour wait to see the doctor. It actually worked in our favor because it gave us time to hook her up for her afternoon feeding. We were suppose to be scheduled for a hearing exam but unfortunately the audiologist was out early that day. The doctors have already rescheduled us for a later date. I was really eager for that exam too. So we wait again. Our ENT doctor is actually the doctor who has performed the majority of Sophia's surgeries, so he is very familiar with her case and our family. He is a wonderful guy. To the point but very patient in his explanations. He had to look at her nose to see how the atersia repair was holding up. He pulled out this huge spaghetti like scope he shoved up poor Sophie's nose. I had to hold her on my lap and hold her arms down while another doctor held her head. Mommy actually had to close her eyes for most of this one. I couldn't imagine that thing going in my nose yet alone my poor little baby girl's tiny nose. Needless to say, she HATED that..first time she cried all day. The stinkin' thing even made her nose bleed a little. Being the trooper she is, she was quickly asleep and over it. Sophia slept and recovered on the drive home. Which was good because once home we had to meet for her First Steps evaluations. The ladies said they were very impressed with Sophia's hand coordination and her ability to grab, hold, and bring things to mid-line. However, they are going to recommend physical therapy to help her with her balance, neck control, and maneuvering around the tubes. They did say a lot of her delay seemed situational based on her surgeries, hospitalization, and the trach/vent tubes. They had high hopes of catching her up soon with therapies. I will find out this week what kind of schedule and goals we are looking to achieve this week. After all was said and done Friday, mommy and Sophia was plum tuckered out. So we tried to nap and slept and regained our momentum over the weekend. Today we are refreshed and ready to take on a  new week. All and all, our first trip to Riley was an overall success.