This Week

Still waiting to hear about Andrew's other tests. But I think that it may be that they were the same. I think the doctor would have called with great news or very different news than what he anticipated. I have dared to look on-line at some things and read some chats about treatment. I even printed out the preferred drug list from the insurance company but cannot seem to find the drugs he mentioned (without any names!). We still have a couple of weeks before we test the shot he had.

Andrew got really really sick this week. He had a cough that came on very quickly and meanly. So Dr. Zimmerman gave him an antibiotic and Prednisone to really try to knock it out - to go with his other medications and inhalers. Yesterday he was purple when I picked him up! And then he turned dark red at home and started running a 103+ fever. I gave him ibuprofen (after a call to Carla to check on liver stuff) and then put him in bed with Pete. He was miserable. His fever broke in the night, but I was concerned he may have the flu. So I made him go to work with me and shut him in my office while I went to a meeting. We did a flu test that was negative, but there have been false negatives. I thought he would be exhausted, but he felt better and looked better as the day went on. We saw Dr. Zimmerman again, and then Andrew just stayed until 2 when I went to get the other boys. Will had taken care of Sam's shot for me (again!), so that was a relief as Pete had meetings all day.

Dr. Zimmerman called the pulmonologist, and they added another antibiotic and Tamiflu just in case! Dr. Black probably knows more about the immunology than we do at this point, so I was so glad Dr. Zimmerman called him. Anyway, they are treating him very aggressively, and I am so glad that they are taking this very seriously. Andrew has already lost about six pounds in one week! Not again!

BUT, he did not have a seizure; and that was a huge encouragement that I needed today. I know God is with us and that He cares and He knows what is going on. I just need to rest in that. Really rest.

Thanks for praying. Still in the "waiting room" - seems like forever, but I keep moving around. I can see the room. I can feel the prayers. And some very very specific prayers were answered today from my "text team." Thank you!

"Arms of Love" Amy Grant


Lord, I'm really glad you're here
Hope You feel the same
When You see all my fear
And how I fail
I fall sometimes

It's hard to walk in shifting sand
I miss the rock and find
I've nowhere left to stand
I start to cry
Lord, please help me
Raise my hand, so You can pick me up
Hold me close, hold me tighter

[Chorus:]
I have found a place where I can hide
It's safe inside
Your arms of love
Like a child who's held throughout a storm
You keep me warm
In your arms of love

Storms will come and storms will go
Wonder just how many storms
It takes until I finally know
You're here always
Even when my skies are far from gray,
I can stay
Teach me to stay there

Chorus

Still waiting...

It may be a week or more before we hear back from the tests Andrew had repeated last Thursday, and that is okay. I am taking this time to breathe and pray and read just a little bit about CVID - in case I need to know! I waffle between peace and okay and getting really anxious about what this means. I am trying to stay on the peace side and pray when I feel the anxiety building.

As for Andrew...he is okay. He is ready to feel better - whatever that is. He understands that he may be tied to a 3-4 hour treatment once a week, or worse. He says that's okay - he will do it under they find a cure. And sure enough in the info the doctor gave us, there is more research being done since more people are now being diagnosed. Most are not diagnosed early. If Andrew has CVID, then he will be diagnosed before he has permanent lung damage. The damage is not there yet, but even this week the cough is back and sounds awful.

And Andrew and I were looking at the spring track schedule, and he is excited that he may be able to run better this year. I appreciate and admire his optimism. He is a teenager, and we could be having a hard time with him. Instead, he is trusting and accepting; but he is not in denial. So I pray that whatever this is - that he is ready for those track meets too! He works so hard, and it is tough to watch him falter. But he has always had a great attitude and felt good for those who do well.

So we will pray and wait and see what we find out. Thanks for praying with us!

Appointments Today ~ Andrew and Sam

Thanks for the prayers as we took off for Charlotte today. We left Boone before 6:30 which gave us a "traffic cushion" and time to get a drive-thru breakfast! (And practice checking bsl and giving a shot before we got there!)

Thanks so much to Whitney, Lisa, and Laura for getting up at 4:00 a.m. to come and get us. Lisa and Laura took Sam to his eye check up, and Sam got a good report. He goes back in six months (August!). They found it with Ben's GPS, so we appreciate that he let us borrow that as we are not familiar with the area around Carolinas Medical Center at all.

Whitney went with Andrew and me to listen. To make this very short, Dr. Patel is quite sure the tests we repeated today and the ones we will get after letting the vaccine he got today have a few weeks will show Andrew has common variable immunodeficiency (CVID). He used the word "alarming" three times. Once because his IgG level is so low. Another time because his IgA level did not even show up. And I forgot the third time. If he shows a flat response to this vaccine - something repeated from when he was a baby, then the diagnosis will be CVID. This will mean replacement therapy. There are different drugs by different companies and two ways to do it. One is a monthly trip to the hospital for a 5+ hour IV infusion. The other is a shot at home weekly that takes 3-4 hours. This would probably be for the rest of his life (the very toughest thing to hear today, I think).

Anyway, we have more tests to run and more prayers to pray. This would help Andrew with his respiratory infections. I feel very thankful that he does not pick up everything that passes by him - he should with numbers like that. And I am really trying to stay on the thankful side of things. This is all new and confusing though we did learn a lot today. I think I will not read anything else today. Dr. Patel gave Andrew (not me but for me too, and I liked that) information to read.

I will send another note when we know more. I need to run and get Peter!

Thanks!

An update on Andrew

I talked to Dr. Patel, the immunologist, this morning first thing. I was surprised to hear from him so soon. He said a lot of stuff and was very nice but very concerned about some of Andrew's lab work. I was listening and scribbling while in the Honda waiting room. He only gave me one number - the IGG. Andrew's is 187. Normal is 550 to 1600. Dr. Patel said it was really low - that he has never seen anyone up and walking around with such a low number.

So he wanted to see Andrew back within a week. We go back next Thursday to their clinic. They will redo this test, obviously. And then they will give Andrew a vaccine (some very long name) and check him again in 3-4 weeks to see how his body reacted to what they gave him. Evidently the earlier labs showed that his immune system had a "flat" response to things. As I understood, his immune system did not show antibodies to bacteria and other things - and it should have.

The treatment for this could be an infusion - how much, of what, and how many times I do not know at all.

I did look up IGG deficiency and saw a lot of things Andrew has - autoimmune diseases/disorders, increased sinusitis and asthma, etc.

I think Andrew was probably never tested for this because he has not seemed sick enough - if that makes sense. So I hope and pray that we will find out what it is, and his life can become so much better! Since I don't know a lot, I need to choose to be optimistic. I know there are lots of things to read, but they are over my head. The doctor said he would give me information on Thursday.

I prayed very specifically yesterday for Andrew - that I could once again hand him back over to God. I do and then promptly take him back! I prayed that I would do whatever I was supposed to do and leave the rest up to God - and turn over the worry, frustration, fear, etc. that has been bogging me down.

Andrew has taken the news in stride. He will only worry about missing school and running. So we will work around that. His counselor has already been in touch with me and said the school will work with whatever.

Thank you so much for praying for Andrew. Although I do feel a little anxious, I felt better as the day went on. If he has something going on, I just want to find it and take care of it. I am hoping what it is can be treated easily, and that is what I will continue to pray for Andrew.

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Sam - Sam has been having some very hard to figure out readings. His insulin seems to be taking a long time to kick in resulting in confusing and high numbers. Then he has been getting really low some. Most of his injections are for what he is getting ready to eat, and we are checking his bsl a lot - and trying to do it at a time to get an accurate reading. But it still does not make sense! So I have put one pen of insulin back in the fridge and will see if something is wrong with it? I can call the nurse, but I have been trying to figure out a pattern. We were doing so well for a few weeks! Please just pray that Sam's stuff becomes more consistent but that we do what we should for him no matter what! We thank the Lord for all of the extra test strips he has been sending our way! They are helping tremendously!

Andrew ~ Appointment with the Immunologist

Andrew went to a new doctor today, an immunologist, in Charlotte. We really like him ~ we were sent there by the pulmonologist that we really like ~ Dr. Black. Dr. Patel’s wife works with Dr. Black, and Dr. Black had talked to Dr. Patel about Andrew. We are just so thankful they have taken an interest in Andrew.

We went over tons of medical history, but he already had a pretty good summary based on what I had sent to Dr. Black a few months ago. I took lots more information, including Andrew’s lipodystrophy notebook full of pictures of the progression and then halting of that disease. I also took labs that have always bothered Carla ~ and yes, they seemed to interest him! We stuck to basics (because they are overwhelming enough – even for me to go over quickly – though I think Dr. Adams can still do a better job on the spot!), and he gave me his card with his email to send him any other info I may think of later – how well he knows people like me!

They took eight vials of blood and won’t have results for weeks. We go back in four weeks to their clinic. He told me what he would look for and why – no specifics mentioned today because while he is looking for more information in the lab work, he had no names to give me today. And then he let me tell him of my most pressing concerns and seemed to understand what was most important now. I also told him we want to keep Andrew well so he can avoid the seizures if possible and grow as much as possible. He asked about growth hormone, and that opportunity may have been earlier but could not be taken then. And I really think that was probably the right thing for Andrew.

I told him we were so appreciative that they had taken an interest in Andrew. He and Dr. Black have already done some extra research on things pertaining to Andrew. I know for a fact because they looked up some of his specifics and could hardly find any information. I know that too! They both seem very intelligent and able to put things together, so we will see.

I did not ask to see an immunologist, so I believe God has set this up for us. And I trust that no matter what, something good will come from it. Everyone in the whole office was super nice and helpful.

A praise ~ Andrew’s height and weight were better than they have ever been! Please keep praying for this!

We are so thankful that Whitney was able to go with us. It made finding the place, listening and answering, and coming back home in a whirlwind much easier!

Sam is doing much better now too. He has had some lower numbers since we started giving his insulin before he eats, but that is to be expected. He had a 37 at school the other day, but his teachers had already given him chocolate milk as they called me – the perfect thing to do! While that is certainly a scary number, we are thankful he has done well - even with those numbers. He has had two crazy days with some high numbers, but we just keep trying and trying. It can be very frustrating, but overall we feel his numbers are much better.

Thanks for praying!