Take a good, hard look at this face. This is the face of a real trooper. Tuesday morning started off like most: we completed all of our morning tasks preparing William for PT and we were off. We met with one of his PTs and an orthotist to discuss some different bracing options. Together they determined that we would need an x-ray of William's hips before we proceeded with more bracing. Then we headed to the pulmonologist, without lunch, for our 11:30am appointment. I'll just say that after spending 3 and 1/2 hours there, grabbing a very late lunch, then waiting another 1 and 1/2 hours for the lab/x-rays, William was a much happier camper than I was. Anyway, we did learn some valuable information.
William's lungs are much worse off than even I suspected. We have now changed some treatments as follows:
Old therapy
Well days - VEST 2x daily, 20 minutes each
Sick days - VEST 4x daily, 20 minutes each and nebulize each time
New therapy
Well days - VEST 4x daily, 30 minutes each and nebulize each time (before breakfast, before lunch, before dinner, before bed)
Sick days - VEST 6-8x daily, 30 minutes each and nebulize each time, possibly with a second medication in the nebulizer each time (medications can't be combined in the nebulizer, so this will be additional nebulizing time) and a third oral medication
It was stressed that we must protect his lungs. There are several things to start with, some of them we are already doing, but some that we will have to incorporate.
Since we were already doing the lung x-rays, we called the doctor to go ahead and complete the hip x-rays as well. I tried to take a picture of one of them, but it is through the door and you can see the backyard in the back. I think it is still clear enough to see that there is a definite issue. I don't know much about that yet, but should be learning more in the days to come.
As frustrated as I can get sometimes, here is what it takes to make my sweet little boy happy:
Simply waltzing with Mommy while singing, "I could have danced all night..." He loves it! It reminds me of how Jesus told His disciples that whoever did not receive the kingdom as a child would not enter in. He wasn't saying that we had to come to know Him when we where children, but that when we come to Him it must be with a pure heart, trusting and loving, just as a little child trusts and loves his parents faithfully. I pray that God will take my heart of stone and make it as trusting and pure as that of my little boy's.
"Verily I say unto you, Whosoever shall not receive the kingdom of God as a little child, he shall not enter therein." Mark 10:15
