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.
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