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.
Thursday, March 24, 2011
Sunday, March 20, 2011
It is well...with my soul
We sang this song this morning during a great, moving church service after a very thought provoking Sunday School. We talked about worry in SS, and my hand was raised the highest to admit I do worry...too much. Even though I know I should not - that it does no good - I admit I still do it! I am one to have to really pay attention or I tend to worry about anything and everything.
My heart is burdened this week. I have let that be overwhelming which has caused more worry about silly things - but yet they affect my days and my effectiveness in those days!
I have set some goals to work towards NOT worrying about some things, and I have prayed to be closer and closer to God through prayer and His Word so I won't worry first, remember to trust next - or last!
We go Thursday back to Dr. Patel for Andrew's other lab results and probably a diagnosis. It's been a wait with ups and downs and me keeping a lot to myself. And when I have tried to talk, I have been shot down a little bit. So I shut down and kept to myself - except for the lucky couple of people who asked and got some answers and feelings. Many people have asked about Andrew, and they say they are praying for him. And that means the world to me. I remember my precious grandfather telling me he got down on his knees to pray for Andrew so much when Andrew was just little. (And then he would try to slide me a $100 bill when he hugged me and shook my hand!) He wanted to help and take it all away. He wanted to fix things all of the time and make them better. He wanted to lift the burden. And even though he was generous - even to a fault - his prayers were the best thing he ever did. And I know he knew that too - deep down.
I don't have a lot of specific information. I have read some and then I had to stop again. There are so many scary things out there on the internet! I am sure everyone knows that. I have found some things that will probably be helpful and make me more prepared, but I have found no answers to some very specific questions. And that is why I feel nervous and apprehensive. Whitney is going with us again, so that is a huge help. She has heard almost all that we have. And she knows how to reel me in when I start off on a bad tangent. So I look forward to the time with her - even if we are going to the doctor again! I really need some time with her to shop and eat lunch and NOT be going to a doctor! And that is another goal - to spend more time with my friends and family this year. I get so caught up in everything that I don't always make time for that.
This morning's service brought many tears, and the presence of Jesus was felt right in that sanctuary. The tears I cried were very good. They felt like the ones that wash over our very soul. And they bring renewal. And this is the week I needed to let go and feel that. I really did not have a choice. It happened and got hold of me, and it is very very real. And that peace that passes all understanding is really found when we look for it and ask for it when we seek Him in the midst of our storms.
I have learned that God is working even when we don't feel instantly better or feel good in a moment. He is working, and we need to let Him. I prayed this morning that He would take care of all of my worries and keep me close to Him and looking to Him no matter what - AND to have me do what I need to do no matter what.
Have a great week! I will post something after Thursday's appointment. Thanks so much for the prayers.
My heart is burdened this week. I have let that be overwhelming which has caused more worry about silly things - but yet they affect my days and my effectiveness in those days!
I have set some goals to work towards NOT worrying about some things, and I have prayed to be closer and closer to God through prayer and His Word so I won't worry first, remember to trust next - or last!
We go Thursday back to Dr. Patel for Andrew's other lab results and probably a diagnosis. It's been a wait with ups and downs and me keeping a lot to myself. And when I have tried to talk, I have been shot down a little bit. So I shut down and kept to myself - except for the lucky couple of people who asked and got some answers and feelings. Many people have asked about Andrew, and they say they are praying for him. And that means the world to me. I remember my precious grandfather telling me he got down on his knees to pray for Andrew so much when Andrew was just little. (And then he would try to slide me a $100 bill when he hugged me and shook my hand!) He wanted to help and take it all away. He wanted to fix things all of the time and make them better. He wanted to lift the burden. And even though he was generous - even to a fault - his prayers were the best thing he ever did. And I know he knew that too - deep down.
I don't have a lot of specific information. I have read some and then I had to stop again. There are so many scary things out there on the internet! I am sure everyone knows that. I have found some things that will probably be helpful and make me more prepared, but I have found no answers to some very specific questions. And that is why I feel nervous and apprehensive. Whitney is going with us again, so that is a huge help. She has heard almost all that we have. And she knows how to reel me in when I start off on a bad tangent. So I look forward to the time with her - even if we are going to the doctor again! I really need some time with her to shop and eat lunch and NOT be going to a doctor! And that is another goal - to spend more time with my friends and family this year. I get so caught up in everything that I don't always make time for that.
This morning's service brought many tears, and the presence of Jesus was felt right in that sanctuary. The tears I cried were very good. They felt like the ones that wash over our very soul. And they bring renewal. And this is the week I needed to let go and feel that. I really did not have a choice. It happened and got hold of me, and it is very very real. And that peace that passes all understanding is really found when we look for it and ask for it when we seek Him in the midst of our storms.
I have learned that God is working even when we don't feel instantly better or feel good in a moment. He is working, and we need to let Him. I prayed this morning that He would take care of all of my worries and keep me close to Him and looking to Him no matter what - AND to have me do what I need to do no matter what.
Have a great week! I will post something after Thursday's appointment. Thanks so much for the prayers.
Thursday, March 10, 2011
On top of the roller coaster ride...
I read a report from Dr. Patel today that pretty much says he thinks Andrew has the CVID and plans to begin IVIG or SQIG treatment soon - after we get those other labs! This is not official for me since I have not talked to Dr. Patel. But it seems the labs were the same. I am apprehensive and anxious and am still trying to be accepting and somewhat thankful. On Focus on the Family today, they were talking to a family who was on Extreme Home Makeover. I listened until the static got it when I got near the school pick up line. They were thankful for the diagnosis their daughter finally received even though it was quite devastating and the "hidden" blessings that they realized saved her life before she was diagnosed - and they realized the danger she would have been in. So we can choose to whine and complain and be sorrowful, or we can keep singing and praising and being thankful - no matter what. It is a decision I will have to constantly make I am sure - until it comes easily.
Sam is doing better - going up and down a little here and there. His mother is trying to figure out a pattern and just go with it. No pattern to report to the diabetes nurse yet, but I am finding some places where he tends to do one thing or another - unless he has a little bug or something! He keeps me on my toes - all of us really. But he is soooooo good. He was talking wistfully about a cupcake he had at preschool last year - before the diabetes, he said. I am so thankful he does so well with his accommodations. He really does.
Will was bragged on by one of his teachers, and it was such an encouragement to me. He does not have ADD or anything like that, but he sure does not fit into the "school mode" easily. This teacher was complimenting him on a great project - following directions, tying everything in, and creating a story himself that went right along with everything. I was so happy to hear it and told her so. My old boss and dear friend always said Will would do well in an experiential learning environment, and I hope he flourishes taking some classes next year that he is so excited about - and I hope the state does not cut them!!!!! This is such an answer to many prayers that he will find his way where he is. He is growing so much. This afternoon he ran into the grocery store alone to get a few things we needed because I did not feel well. He also checked on me every few minutes once we were home.
Peter and Andrew just got summer jobs! They are so excited, and I am so excited for them. Will is going to help me with Sam. This will be a good experience for all of them.
Thanks for reading. Thanks for praying. More to come soon...
Sam is doing better - going up and down a little here and there. His mother is trying to figure out a pattern and just go with it. No pattern to report to the diabetes nurse yet, but I am finding some places where he tends to do one thing or another - unless he has a little bug or something! He keeps me on my toes - all of us really. But he is soooooo good. He was talking wistfully about a cupcake he had at preschool last year - before the diabetes, he said. I am so thankful he does so well with his accommodations. He really does.
Will was bragged on by one of his teachers, and it was such an encouragement to me. He does not have ADD or anything like that, but he sure does not fit into the "school mode" easily. This teacher was complimenting him on a great project - following directions, tying everything in, and creating a story himself that went right along with everything. I was so happy to hear it and told her so. My old boss and dear friend always said Will would do well in an experiential learning environment, and I hope he flourishes taking some classes next year that he is so excited about - and I hope the state does not cut them!!!!! This is such an answer to many prayers that he will find his way where he is. He is growing so much. This afternoon he ran into the grocery store alone to get a few things we needed because I did not feel well. He also checked on me every few minutes once we were home.
Peter and Andrew just got summer jobs! They are so excited, and I am so excited for them. Will is going to help me with Sam. This will be a good experience for all of them.
Thanks for reading. Thanks for praying. More to come soon...
Tuesday, March 1, 2011
Still waiting for the phone to ring!
We still have not heard anything from Dr. Patel, so I am giving myself a little break from thinking about it - and am doing quite well most of the time. I am keeping busy at work trying to keep everything caught up in case we go to Charlotte sooner. I am trying to get rid of more and more "stuff" at home to simplify life! Less is more! I took my stuff to the consignment sale today and just hope none is left to come back! If so, it will go into the big yard sale we are planning! The boxes for that are stacking up downstairs. It feels good to keep on cleaning out. I just wonder when it will end...
Andrew still is not much better. He cannot run, and that is hard for him. He is taking Tamiflu, two antibiotics, Prednisone (steroids), inhalers, and all of his other medicine. He keeps on going to school, and that is good that he is able to do that. I just am disappointed for him that track is here now - and so is all of this sickness again! But he does have a great attitude in the face of frustration and disappointment. I am proud of him.
The other boys are good. Sam and Will play outside on the days that it is not raining. They go out right when we come home from school. It is so nice to see the grass! We love snow, but I think we all agree we have had enough this year!
I spoke to a class at Appalachian last night. They were very attentive and asked great questions. I was attempting to give them a parent's perspective that they may be able to use in their fields. In talking and going through a lot (but not all) of our struggles, I know we have come so far and see what God has done. Though we are still in the midst of something even right now, it helps to remember (as I talked to them) how scary some of those times were. And everything was okay.
Happy March! We are looking forward to the newness and hope that comes in the spring and at Easter.
Andrew still is not much better. He cannot run, and that is hard for him. He is taking Tamiflu, two antibiotics, Prednisone (steroids), inhalers, and all of his other medicine. He keeps on going to school, and that is good that he is able to do that. I just am disappointed for him that track is here now - and so is all of this sickness again! But he does have a great attitude in the face of frustration and disappointment. I am proud of him.
The other boys are good. Sam and Will play outside on the days that it is not raining. They go out right when we come home from school. It is so nice to see the grass! We love snow, but I think we all agree we have had enough this year!
I spoke to a class at Appalachian last night. They were very attentive and asked great questions. I was attempting to give them a parent's perspective that they may be able to use in their fields. In talking and going through a lot (but not all) of our struggles, I know we have come so far and see what God has done. Though we are still in the midst of something even right now, it helps to remember (as I talked to them) how scary some of those times were. And everything was okay.
Happy March! We are looking forward to the newness and hope that comes in the spring and at Easter.
Friday, February 25, 2011
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
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
Monday, February 21, 2011
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!
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!
Thursday, February 17, 2011
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!
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!
Subscribe to:
Posts (Atom)