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!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


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

A quick update!

Happy Easter! He is RISEN! What hope we have in that!

God has really been speaking to me, and that's been pretty hard to do lately. I am so off schedule. I have not been to church in two weeks with walking pneumonia. I've been in survival mode. But in what I have read and heard on Christian radio and online and through friends, I know God is clearly speaking to me. I am supposed to remember that I can and should rely on Him alone. He has provided help and support in places that I did not expect. And in some places, it was taken away for a bit. He has also been trying to get me to see the bigger picture ~ that we need to do our best while we are here but not to tie or try to tie ourselves too closely to this place. It's not our home. So with that in mind, I am trying to do all I can for Andrew but know and remember that God loves him so much more than me. He knows what is going on, and He will guide me if I will seek that and obey. I am totally not through with the lessons, but some have been so clear lately.

Andrew will probably have his first treatment at home this week. Our insurance approved him. He is getting more and more worn down. Not knowing a whole lot about how this comes on (because he was probably born with this), I am not sure if he will keep wearing down more and more until he gets where he needs to be in his IgG numbers. I feel that he should have probably already been sicker and in the hospital with IV antibiotics, from what I've read. Running and not missing school except for appointments is most likely not the norm. Anyway, we will be learning a lot this week. And then Andrew will be off to Richmond with his track team. He is taking the week off, after another terrible run today. He has nothing to draw from anymore - and it's not from lack of training or trying. It's painful to watch. He also has a weak leg, and we decided today that rest is the best thing for the next few days. He has come to this understanding himself. That's a big deal.

It has been tough - watching him fall more and more behind. But I know that he will come out of this. I just wish it would all hurry up and be fixed. He is on three weeks of antibiotics. Once I finally figured out his cough was back and had Dr. Zimmerman look at him, I could hear the wheezing loudly across the room when he took deep breaths! And that is on tons of other meds. So we hope those will keep him from getting worse while we try to get the IgG levels up!

I don't know if I mentioned it before, but his levels were up over 100 points before his treatment in Charlotte. The doctor is hoping to raise it 200 with each treatment - maybe a little less with the weekly treatments. I thought to myself, "Here we go with the numbers again." But my life is all about numbers right now with Sam - who was at 33 a little bit ago running around! They can sure be overwhelming! And Sam is good most of the time. Peter just got some new running shoes and feels like he has new feet! Will just got back from his 8th grade trip to Wilmington, and we are so happy he is home.

Thanks to those of you who pray and send encouragement through email, calls, and the mail! It all helps, and we appreciate it. This song is one my friend Lisa told me to look up. I had not heard it. But I heard it three times this week while going to do Sam's lunch shot. I know that was not a coincidence!

Happy Easter!

Love,
Wendi


"Blessings"
Laura Story


We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home,
It's not our home

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

A quick update...

It's chilly here in Boone! It was much warmer in Charlotte of course, but we were glad we did not have to deal with the storms or snow this morning! It was a rough ride up the 321 mountain last night! Whoever invented those reflectors on the roads is certainly a genius and has probably saved tons of lives!

We are late getting back. Evidently they were running behind today at the clinic. Dr. Patel told us that he is 98.5% sure that Andrew has CVID. Because his last tests came back showing a response to the vaccine, he is not sure. This is not normal. Where have I heard that before? But he checked with colleagues in Houston, and they all agree that Andrew should begin the IVIG ASAP - next week probably. My heart dropped -even though I have had weeks to expect this. He will spend a day at the children's hospital - they always give the first dose where they can be closely monitored. And then we can have the choice of more frequent treatments at home. The group meeting we are going to in Charlotte on Saturday is all about the treatment we are trained to do at home, so we are glad to be signed up for that. So I still have tons of questions but saved them.

Andrew's numbers are some of the LOWEST he has ever seen in a 17 year old. I get the feeling I have been right calling him my "miracle runner" - his immune system is so low that he should probably be sick all of the time. Something in there is working some - God knows what that is, and I am sure He is the one keeping Andrew active. He has been sick and has had steroids and three antibiotics lately. Hopefully this treatment will immediately help him fight off some of this respiratory sickness.

They are going to run one more test that requires a trip to Charlotte. If they can get that test in (it has to be ordered and then sent back off), they will do it when they do his first treatment. It may be conclusive but may not. I think they are trying to solve another medical mystery. And we appreciate their efforts!

The nurse will call us with an appointment to come probably within a week. They will keep tabs on those new numbers and see when he reaches a normal level - this is replacement therapy.

The positive I got out of this today is the fact that they cannot diagnose him 100%. So they will give him a trial time of 12-18 months and take him off treatment to see how he does. All I could hear was this may not be a lifelong treatment, and my heart felt a little better about that.

Thanks for your prayers. I need to go spend some time with people we missed today!

Love,
Wendi

P.S. We could not ask for a better response from Andrew. He is so easy to get along with and so positive and won't make a big deal of things.