Ben and Missy and Lauren are simply incredible! Through the grace of God, they are teaching countless others through their actions in innumerable ways. Our week with them has been amazing, and I know that both Nathan and I will miss them terribly for the 6 months until our next visit. Nate and Lauren were two peas in a pod this week...playing together, sitting beside one another when together, holding hands walking to and fro. It has been quite cute to watch. Missy and I just laughed and laughed during our visits...the kind of laughter that makes your cheeks and stomach hurt. Amidst the laughter, we also had serious and heartfelt conversations, sad and reflective ones...but more than anything, we laughed. It's amazing how God places people in your life to make such huge impacts on you and to teach so much about his blessings. I will miss my dear friend.
Our appt Thursday was with the doctor in the clinic who specializes in pulmonology, immunology, and allergy. Since we had a trial time off Nate's asthma meds over the past couple of months, we have seen a few "flags" that he was indeed benefiting from the asthma protocol we had him on since he was really little. I had always questioned the diagnosis of asthma from our home pulmo because he was so small when he was diagnosed...he wheezed during activity and when sick, but I just didn't know if that diagnosis fit. Since being off meds, he hasn't wheezed too terribly much, but he does cough during exercise, retract deeply, and drop his sats. So, we have started back on flovent and added xopenex instead of albuterol, and she has officially diagnosed him with asthma...obviously, sometimes a mother is wrong. :) She also said that we needed to increase his O2 liter flow from 1 to 2 liters per minute continuously to help with his desats, periodic retractions/tachypnea and increased exhaustion cycles. He had labs to check to see if he was keeping his titers to his vaccines (he tends to lose those titers and needs to be revaxed...all as a result of his immune deficiency due to mito) and other labs checking immune function, and a flu shot.
Along with being able to spend a lot of time with the Knights, we also had the wonderful privilege of visiting with another mito family from Knoxville, TN who was there for their appts as well. Eric was so precious...he and Nate shared cars for a bit before Nate fell asleep for a majority of the visit. It was so wonderful to get to talk with Eric's mom and grandma. We also had the chance to meet Cooper and his mom, Sarah, for a bit. Cooper underwent an intestinal transplant about 6 months ago in Pittsburgh, and they have recently made it back home to Houston. They are currently in the hospital, so we were able to visit shortly, but I never had the chance to take any pictures. It was so good to finally meet them! And finally, we were able to attend a family/sibling support group of the Houston chapter for UMDF, and it was really great to be able to meet quite a few more mito families from that area.All in all, it was a wonderful trip. We miss our friends so much, but it is good to be back home. We'll be back in 6 months, and I look forward to seeing everyone again!