Sorry for the lack of updates! I have been under the weather and it has really drained my energy. Luckily I dragged myself to the docotr yesterday and am on antibiotics for a sinus infection so hopefully I will be back to myself soon.
Alex and I left Monday to head for Houston. I left in less then a happy state of mind! We originally had 5 appts scheduled over 2 days. Over the last few weeks the appts were cancelled one by one. Monday morning as I was about to leave I got a call cancelling the fourth of five appts. mad doesn't even begin to explain my feelings at that point! Luckily, we arrived at the Knights house to have a fun afternoon. We deaccessed the 2 boys ports and let the kids play in the water in the backyard while Missy and I sat and chatted. Then we went to my very favorite mexican restaurant for dinner. We will forever be grateful to the Knights for being such good friends and opening their house to us. It has truly become a second home to us. You know you are there a lot when the dog doesn't even bark at you!!!
Tuesday was our GI appt. (At least they didn't cancel!) We are thrilled to say that we are done with TPN (IV nutrition)!!!! Alex is back to just his tube feeds. We talked about some long term goals with Alex. The GI and his dietician were happy with the weight he put on during the 3 months on TPN (about 3.5-4 lbs). The hope now is that he can hold on to that weight.
Luckily, Dr. Koenig emailed and set up a time to see Alex on Wednesday in her clinic. I cannot begin to explain the love Alex has for Dr. K. As soon as he saw her he went running into her arms. The two of them caught up while I met with the medical students to fill them in on all the organ systems. Then Dr. K and Alex came back to finish the appt. We have decided to do another spine MRI in a few more months instead of now to check on his syrinx (fluid in his spinal cord). We discussed some hematology issues and she let me know that she would like to do an EEG the next time he is inpatient to see if he is having any seizures now that he is on Keppra. Other then that she is pleased with where he is.
We headed home Wednesday afternoon and I have been crazy trying to get everything ready for our big trip. We are beyond excited to leave Tuesday to head to NC for 3 weeks. Alex and I look forward all year to good times spent with friends and family, not to mention the pool and the beach.
We ask for prayers for safe travels, for Alex's health, for Bruce to find the "perfect job", for insurance woes to be over and for us to be able to relax and enjoy our vacation! Thank you for continuing to walk this journey with us. We are so blessed to have you in our lives!