It's Thursday and we've had such a busy week already! We ended last week with a cardiac appointment which was uneventful. There were no changes in her condition and we don't have to go back until after surgery! I am so thankful for that.
We began this week with an endocrine appointment at Egleston and met a great doctor, Dr. Patterson. She was really, really thorough and looked through all our medical records to help better inform herself. Emily had to have blood drawn and for the first time since birth, a competent individual took her blood from her arm without blowing the vein (which is really important considering surgery is in two weeks and we need every vein in her little body to be in perfect shape). Her thyroid was a little elevated so we changed up her meds once again and hopefully she will be in good shape for the next blood draw.
We also met our new pediatrician, Dr. Fotion. He was really nice and thorough as well. He specializes in genetic disorders so he came highly recommended by some of our other speciality doctors. His practice (Snellville Peds) is not recommended by fellow moms because of long wait times, so I hope this does not become a problem. He gave me all the necessary paperwork for making audiology and vision appointments as well as helping me get in touch with the Down Syndrome Center in Atlanta. It's important that Emily get in with the DSC because they help parents stay "on track" as far as developmental and cognitive milestones are concerned. We also contacted Babies Can't Wait to begin our Early Intervention and therapies and are patiently waiting to hear back from them for our initial evaluation. Emily has not received therapy services in three weeks so it's time to get back on it!
We received all our information for the surgery as well as an informational video from the Sibley Heart Center. It's a lot to take in. At this point, we really don't want anyone except immediate family at the hospital on surgery day. The hospital discourages troops of people...especially considering only 2 people at a time are permitted into the ICU once surgery's done. After a few days Emily will head to the Step-down unit and visitors (only PERFECTLY HEALTHY) ones are permitted in there. It's kinda crazy that in two weeks our sweet girl will undergo such a dramatic procedure (in my mind). I can't even imagine how uncomfortable she will be. Hopefully she will be heavily medicated so that she won't feel a thing when they run IVs and other various lines.
We are still so happy to be home and have enjoyed every second of the visitors that have filled our house. All of our parents have cooked for us and helped out in the evenings while Billy is at work and that has been so nice. It really makes the day pass and makes it manageable. Being home alone in the evening is not fun at all. Lilly has transitioned perfectly. I think she's so distracted by all the family around that she hasn't really noticed the fact that we're not in Charleston anymore. She is still excited to go to her "new home" after running errands. She was seen by Dr. Fotion as well because she got an ear infection and her little ear was just gross. She had a fever and was down and out (for only a day). She's on the mend now and back to her normal self. Today we're going to organize her toys. We need to do some serious organization because she has way too many things and parts of toys are scattered all over. It's driving me crazy!
Have good weekend everyone! :)
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