Well it has been a week or so of doctors appointments. We have seen Dr. Harris twice since my last post, first because we felt like he was sick, Dr, Harris thinks it might have been a little tummy bug that was causing the extra irritability and diarrhea. Then we went to immunology to check on all the test results they took while we were still in the hospital to figure out why his t-cells are low. They can't quite figure it out because all the tests come back negative for anything major like Di George or HIV (from all of his blood transfusions), but the white blood count is still low and when they inject the cells with infections and such, they have a hard time fighting. Dr.Zeft thinks it has to do with a combination of his Thymus being removed during heart surgery (everyone's is) and his extreme case of Cylothorox and not being up to date on his immunizations. He did want T to go ahead and get caught up on his immunizations, just not the live ones. We go back in two months to draw more blood and check the numbers again and see if there is any improvement, for now he is on a special med called Septra and we need to keep him as germ free as possible. So that news sent us back to Dr. Harris to get caught up on shots, he got his four month ones that he had missed because of surgery and then he will have his six month ones and his flu shot and Synergist shots next month. While we were there they treated it like a well visit and did his measurements and weight : 28 1/8 in. long (94%) and 16lbs. 10oz. (35%). Then today it was cardiology and a swallow study, Ryan couldn't come this time so Big G and Big Mace took us and were very kind to give up their day to be with us at the hospital. Dr. Day thinks everything looks great, we get to come off Lasix and he was stating 94, I don't know if I believe it, but they couldn't get a lower number after readjusting the pulse ox several times. His x-ray looked good and his EKG. He weighed 16lbs. 14oz., but it was a different scale so I don't know. Dr. Day wants to see us in two months also. Then we had the swallow study, after we all fasted yesterday Teagan finally passed, meaning he protected his airway when he swallowed and didn't aspirate, it doesn't mean he liked it or wants to do it, but at least now we know we can try bottles and soft baby food and rice cereal after we get the go ahead from general surgery to bolus feed. We will need to work with a speech therapist and an early interventionist to help Teagan, but we are moving forward and that is great news! Besides all the doctors appt. we are just trying to be as normal as we can, we still deal with a lot of gaging and having to vent the G-tube, we are working on sitting up and rolling over. T is getting better head control everyday and loves to grab toys and play under his baby gym. His favorite place to sleep is in his swing or our arms. Life is pretty good right now, we are enjoying everyday we get to be together and under one roof, we don't take a day for granted, for we know that everyone is not so lucky and it is hard to balance hospital life and real life! We send lots of prayers and good wishes to: Megan, Daxton, Elaina, Brooklyn, and all the other kidos who are still in the hospital, whatever state that might be.
Attitude is everything. Be kinder than necessary, for everyone you meet is fighting some kind of battle. Live simply, love generously, care deeply, speak kindly, because life isn't about waiting for the storm to pass... it's about learning to dance in the rain.