Another one down!

We just finished another treatment and are waiting for some swelling to go down before we go on to bed. It was a little faster, and we are not sure why; but everything seemed fine.

Peter and Andrew ran the Bill Gatton 5K this morning before we went to Laura's graduation. Peter was 2nd overall. Andrew was in 4th until the last 50 meters and ended up 7th. He did take a wrong turn and ran farther, so I told him that he knows that and still did great. He was not sure he could even run today.

Thanks for the continued prayers. We go back to the doctor Thursday and are hoping and praying for GREAT numbers!!!!

Andrew's treatment on 5/22/11

Andrew's treatment went okay. The first needle was either dull or hit a bad spot causing me to almost panic, but we put on more lidocaine; and Andrew put the needles in the other two sites. We clamped off the one with the bad needle or spot and just did not use it. We did not see or feel any leaks, and the infusion took a little over two hours. Andrew's help in putting in the needles and taking them out (by far the worst part of all of this!) is really a blessing and a huge step forward for him when he takes over. It's awful to stick needles into your children (constantly) when you don't have that gift - but God is helping us so much. It's evident and very very obvious.

We go back to Dr. Patel June 2, and we will get his labs then. I will let you know how they are. Thanks so much for praying. We appreciate the prayers so much. We trust that we are doing what is right for Andrew and that he will be good to go soon. I have struggled with seeing his struggles. And I see so much more than I should. So I am constantly having to check myself, my perspective, etc.

We were able to go see a preacher we watch on TV every Sunday morning while we get ready for church. This church was different than any the boys have been to before. There was great music, and we could feel the presence of the Lord. Many things were said. I scribbled some down so I would not forget. One was (without my notes!) that "I will prosper in the day of my affliction." I will have to write them in later. But what he was saying spoke to me about the "waiting room" that I still feel like I am in. It's a lot like "the storm" but also very different. I guess it's my way of seeing a bigger picture (not His - the one we cannot see but surely trust is there). And He gives me those things to let me see things more for what they are instead of what I make them to be. And Andrew is working hard and will thrive in this time of affliction. So many things do not come easily for him that are so easy for others, but I know that I have to turn all of that over to God. Constantly.

Thanks again so much for the prayers. I will let you know his next numbers!

Wendi

Andrew's great numbers!

After feeling down about yesterday's appointment, I really really prayed about it and asked God to just keep reminding me He is in control.

Well, the nurse called this afternoon with Andrew's IgG numbers. The first two times they were in the 180's - alarmingly low. The time right before (not after!) his first treatment, the number was in the 290's. The doctor said he wants him over 800 but said yesterday it may take months to achieve that. He had a 562! The nurse said the doctor is very pleased!

For once, I am glad Andrew is not following any set pattern. It is serving him well right now. We have to deal with whatever this turns out to be, but we are so happy for any good or great news that comes our way! His next home treatment is Monday at 3:30. We pray we learn this stuff quickly!

Happy Weekend! Thanks for praying!!!

Andrew's Appt ~ 5/5/11

Andrew's appointment did not go as well as I had hoped, but it was not that bad. The special test they did a few weeks ago on the B cell was abnormal which points more to CVID. However, we still have those higher numbers BEFORE any treatments. The doctor was surprised that he had only had one home treatment, but I guess they are used to the process being too slow sometimes. I should find out about his numbers tomorrow or the first of the week. Then we go back in a month for him to be checked again.

He mentioned some more testing, and he also has some alternate plans in case Andrew continues to get sick before his numbers drastically improve. I got very weary just listening. Fortunately, there was a resident he was also explaining some things to; so he probably did not notice my droopy demeanor. And I did feel a little like a balloon that is deflating! I told Andrew (who did not notice the things he said that I noticed) that we would keep praying his numbers would jump up and stay there. And we did find out if we test him for certain things, the tests may be negative even if he has the illness. This is really weird stuff to me. And I think it makes my head hurt when I think on these things, and they don't make sense at all to me.

Thanks for your continued prayers. That is what he needs. And we appreciate them so much.

Thanks! Happy Friday!

Andrew's treatment

Andrew will have his first treatment at home on Monday late afternoon. I am sorry we missed spring break for this first one, but the Charlotte nursing agency did not even call until Friday mid-morning. We will do this each week, and we hope to be able to do it ourselves after a couple of times with help.

It's a relief to start it, but it is very very overwhelming. I was never meant to be a nurse! I used to turn green trying to visit people in the hospital! Little did I know how many hospitals I would visit later on in my life. But God has worked that out - I no longer turn green and feel sick just walking in the door! We will be working with needles, tubing, a pump, and drawing up medicine (my worst fear), so we appreciate your prayers.

Then we go back to the doctor on Thursday and will see what his numbers do. I hope that they go up quickly and that we can see a marked improvement in him.

Andrew and Peter are on their way home from Richmond tonight. Sam and I went to see Laura off to her senior prom. She was just beautiful, and we were so glad we went. On the way, we passed a bad area right before Abingdon. There was terrible devastation, but there were tons of trucks there with people working to cut up huge fallen trees and work on houses that were damaged. It was enough to make me cry, but I thought of how wonderful the obvious outpouring of love and help from friends and neighbors. It made me thankful again that the storms did not hit us. It was good to keep busy today. I enjoyed seeing lots of family and friends.

Thanks again for the prayers. We appreciate them so much!

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It's done, and we are exhausted. The nurse had trouble getting here, so we started at 8:30 instead of 4:30! It's a tedious process - setting it up. I have to use a huge syringe and draw the medicine from three vials, so it's like the beginning of Sam's diabetes in that way. Everything is just huge sized. But then there is the tubing, the needles, the pump, the clamps, the prepping, etc. Wow. I am overwhelmed. I know I can learn to do it though. But right now I have a giant headache.

Andrew seemed to do well. His major problem is no fat - and not enough extra skin to pinch. He had three sites. One in his leg, and two in his stomach. His leg puffed up in a knot, so we turned that one off for a bit. It took a good two hours to infuse. I hope he sleeps well. I think we are both worn out.

It makes all of the difference to have a tolerant, uncomplaining young man as the patient.

Please pray for Sam too. His numbers are swinging from low 40's to over 400 and then from low 50's to over 600. They come right back down, but this is after he has had the insulin he needs. All of the pens work, so I have been stumped. He was better today - just off a little bit. The doctor said we would have times we could not figure out. This probably is not the best week for him to do this!!

Thanks for asking and, most of all, praying. We will do it again next Monday. And Andrew goes to Charlotte Thursday to the doctor.

Thanks again!

Wendi