So anyway, Matthew has been getting pretty good at video games. He's also been watching a lot of movies. In an effort to encourage more looking at books, and so he might look forward to a change in his day, we asked him to help us put together a book wish list through Amazon.com. Plus, who doesn't just love getting something from the UPS guy?
Please don't feel compelled to get him a book, but if you have been wondering about ways to do something for Matthew, this might be an easy way to do something. :)
Matthew's Book Wish List
Sunday, August 31, 2008
Update & Some Early Emails
Yesterday (August 30) and today (31st) have been pretty good. After having a fever of about 104 on Friday night Matthew went the whole day yesterday without having a fever and slept all last night without getting up. This morning he work up with a fever of just over 100 but it has gone down gradually throughout the day without any medication and he even spent a couple hours at church for a potluck after church. Right now he is napping which we have been forcing him to do each day. It really seems to help. His little body just needs the rest.
Anyway, I want to post some of the emails that Christina sent out early on to help fill in the gaps. Here goes:
July 25th
Quick update. First thank you for your prayers. Matthew is on day nine of a fever. The temps for the last five 6 days have reach up to 105 and he has a very stiff neck and head aches. The spinal tap told us that it is probably not spinal meningitis. Sort of a surprise as we went in being told that they were 99% sure that it was meningitis. So the problem now is figuring out what is causing these symptoms. Matthew has undergone several unpleasant tests the past 24 hours. Please pray we will get some answers soon and that he won't have to keep having tests. He is in the hospital again tonight and we don't know when we will go home yet. Hopefully tomorrow, but that is what we thought yesterday, so we will wait and see. I will try to update you again soon. Again thank you for your prayers.
July 26th
Matthew came home from the hospital this afternoon. We are thankful to be back in the comfort of our own home. We do not have any answers yet. We were sent home to control his fever with Ibuprofen and wait for all the many test results to come back. They should all start coming in over this next week. We will be having appointments with a few different doctors this week to see if we can figure this thing out. We may have answers this week or we may never really know what is causing his fevers. I have heard stories of people having strange viruses with high fevers for a couple of weeks. Maybe that is our situation. I don't know. I know that his fever and headaches and neck aches/stiffness are controlled pretty well with Ibuprofen, but if he doesn't take that, in the afternoon he is back up to a high temp.(104-105). Thank you all for your prayers. I will update when we get some results this week.
July 31st
Thank you so much for your prayers and your phone calls. I can't tell you how much we appreciate them. I do not have much news yet. Matthew has had all the tests that were done in the hospital come back negative. Matthew has seen several specialist doctors and he has had a few more tests done this week that we are waiting for the results on and may not know some of them until the beginning of next week. He has a spinal headache from the spinal tap that was done last week. If you have had one of those headache you know how much they hurt-how awful they are. His fevers continue and the last several mornings Matthew has not been able to get out of bed by himself because he hurts so bad (his muscles, the spinal tap sight, and the headaches) . He also has not been able to walk very well during the day. He spends most of his time laying down in bed or on the couch. This has been quite a roller coaster for us. He had a bad night last night when he was going to bed. I was so sad for him. Then this morning he was able to get out of bed by himself for the first time in many days. He even walked with Dave from the front yard to the back yard. My heart just leapt with joy as I watched him do this. This by no means means that he is better, as he has up and down times like this, but it does make me so happy to see him not in pain for a little while. Please continue to join us in prayer for Matthew that we would figure out how to make him well soon.
August 4th
We finally got some answers this evening! Praise God!! Some test results came back to our Rheumatologist and Matthew has something called Inflammatory Myocitis. This was probably virally induced and basically what is happening is that Matthew's immune system is attacking his muscles. This is causing inflammation which is why he has had the fevers for the past 2 1/2 weeks. Thankfully this is treatable with anti-inflammatory drugs and hopefully he should recover well. It will just take some time to get there. I don't totally understand this disease. I just learned there was such a disease about 2 hours ago. I have done a little reading and I have put a link on here if you want to find out more about it. Thank you all so much for your faithful prayers, your emails, your cards, phone calls, visits and meals. All are so appreciated. Please continue to pray for Matthew's recovery now as he still has a ways to go. We are so thankful to know what direction to go to help him now. What an incredible little boy God has given us to parent. I pray that if I ever have to go through as much physical problems as he has these past two years with his broken leg and now with this, that I will be as brave and strong as he has been.
Check out this link to find out more about what Matthew is dealing with.
Myocitis Info Link
Anyway, I want to post some of the emails that Christina sent out early on to help fill in the gaps. Here goes:
July 25th
Quick update. First thank you for your prayers. Matthew is on day nine of a fever. The temps for the last five 6 days have reach up to 105 and he has a very stiff neck and head aches. The spinal tap told us that it is probably not spinal meningitis. Sort of a surprise as we went in being told that they were 99% sure that it was meningitis. So the problem now is figuring out what is causing these symptoms. Matthew has undergone several unpleasant tests the past 24 hours. Please pray we will get some answers soon and that he won't have to keep having tests. He is in the hospital again tonight and we don't know when we will go home yet. Hopefully tomorrow, but that is what we thought yesterday, so we will wait and see. I will try to update you again soon. Again thank you for your prayers.
July 26th
Matthew came home from the hospital this afternoon. We are thankful to be back in the comfort of our own home. We do not have any answers yet. We were sent home to control his fever with Ibuprofen and wait for all the many test results to come back. They should all start coming in over this next week. We will be having appointments with a few different doctors this week to see if we can figure this thing out. We may have answers this week or we may never really know what is causing his fevers. I have heard stories of people having strange viruses with high fevers for a couple of weeks. Maybe that is our situation. I don't know. I know that his fever and headaches and neck aches/stiffness are controlled pretty well with Ibuprofen, but if he doesn't take that, in the afternoon he is back up to a high temp.(104-105). Thank you all for your prayers. I will update when we get some results this week.
July 31st
Thank you so much for your prayers and your phone calls. I can't tell you how much we appreciate them. I do not have much news yet. Matthew has had all the tests that were done in the hospital come back negative. Matthew has seen several specialist doctors and he has had a few more tests done this week that we are waiting for the results on and may not know some of them until the beginning of next week. He has a spinal headache from the spinal tap that was done last week. If you have had one of those headache you know how much they hurt-how awful they are. His fevers continue and the last several mornings Matthew has not been able to get out of bed by himself because he hurts so bad (his muscles, the spinal tap sight, and the headaches) . He also has not been able to walk very well during the day. He spends most of his time laying down in bed or on the couch. This has been quite a roller coaster for us. He had a bad night last night when he was going to bed. I was so sad for him. Then this morning he was able to get out of bed by himself for the first time in many days. He even walked with Dave from the front yard to the back yard. My heart just leapt with joy as I watched him do this. This by no means means that he is better, as he has up and down times like this, but it does make me so happy to see him not in pain for a little while. Please continue to join us in prayer for Matthew that we would figure out how to make him well soon.
August 4th
We finally got some answers this evening! Praise God!! Some test results came back to our Rheumatologist and Matthew has something called Inflammatory Myocitis. This was probably virally induced and basically what is happening is that Matthew's immune system is attacking his muscles. This is causing inflammation which is why he has had the fevers for the past 2 1/2 weeks. Thankfully this is treatable with anti-inflammatory drugs and hopefully he should recover well. It will just take some time to get there. I don't totally understand this disease. I just learned there was such a disease about 2 hours ago. I have done a little reading and I have put a link on here if you want to find out more about it. Thank you all so much for your faithful prayers, your emails, your cards, phone calls, visits and meals. All are so appreciated. Please continue to pray for Matthew's recovery now as he still has a ways to go. We are so thankful to know what direction to go to help him now. What an incredible little boy God has given us to parent. I pray that if I ever have to go through as much physical problems as he has these past two years with his broken leg and now with this, that I will be as brave and strong as he has been.
Check out this link to find out more about what Matthew is dealing with.
Myocitis Info Link
Saturday, August 30, 2008
The Beginning of It All
Wednesday morning, July 16th came with the busyness of Christina and I trying to get everything together to leave for Las Vegas to attend The Little Gym Reunion, an annual gathering of owners of The Little Gym franchises from all over the country. That morning Matthew woke up with a funny rash on his hands, feet and some other joints. It wasn't itchy and didn't seem to bother him, so we decided to go ahead with our plans. We scheduled a doctor's appointment later that day that Grandma Jorg would be able to take him to.
The rash seemed to be the result of a virus that he contracted which would take a couple of days to get over. So Grandma took him home and took good care of him. Over the next three days Matthew ran a moderate fever of 100-101 degrees and had a few stomach issues, but all in all was in good spirits and was a pretty easy kid for being sick.
We returned home on Saturday July 19th and Matthew was still running his fever. On Sunday afternoon things changed and Matthews fever began to really spike. With a fever over 104 and very achy muscles, Christina loaded Matthew in the car and headed for the Emergency room. After a couple hours of waiting the doctors informed here that there was a virus like this that was going around and that he should get over it within a week. Keep him comfortable and treat the fever with ibuprofen.
By Thursday, July 24th, the fever was still hitting 104-105 every day and Matthew was still getting a very stiff and achy back. Christina took him to his Pediatrician that day and his Dr. decided to have him admitted to the hospital. The doctor was concerned about the possibility of meningitis because of his back and shoulder aches and high fevers. A lumbar puncture (spinal tap) was scheduled for that evening.
Matthew was hooked up to an I.V. and had some prelimenary blood work done. The L.P. was a scary procedure for him and us, but he made it through like a champ and the results came back very clear. There was no virus or bacteria in his spinal column. A battery of other blood tests were performed over the next few days and nothing was found except that his iron counts were a little low (the result of 6 major blood draws in five days perhaps?)
The first day Matthew spent in isolation because of the fear that he was dealing with a virus that is contagious. During this time he watched lots of tv and played with all the new toys he was getting from his visitors. After he was taken out of isolation he liked spending time on the hospital playground or taking a walk to the cafeteria, but even these short spurts of activity would wipe him out very quickly.
On Saturday, July 26th, Matthew was released from the hospital to go home. He was still running the fever at 104 to 105 for a few hours each day. He had been seen by his pediatrician sevreal times while in the hospital, along with the pediatric resident and a contagious disease specialist from the University of Arizona. Upon his release he would be subject to a few more blood tests and was being reffered to a rheumatologist to determine whether or not what he was dealing with could be Juvenile Rheumatoid Arthritis. More on this later.
Friday, August 29, 2008
Getting Started
Here is my first post. It's 11:30 at night and I'm very tired so this will be short. Matthew had his first high fever (above 104 degrees) on Sunday July 20th. He's finishing up 6 weeks of not knowing when his next fever will hit. Right now he is in bed snuggled up with a couple of ice packs. His fever was at 103.8 about 45 minutes ago. At some points during the day he seems almost normal, except even his running around is in slow motion. At other points his joints and muscles ache and hurt. He has especially been having trouble with his right thigh and knee as of late. But his spirits remain high. He still laughs and plays with his brothers. He is fascinated by caterpillars. He loves having the homework that comes home from kindergarten on the days that he can't make it.
Well, I'm off. Trevor has a football scrimmage that he needs to be to at 7 in the morning. We'll do some catch up in forthcoming posts to let you know what we're trying to do to help Matthew get better, what the doctors are saying, how you can pray for us, etc...
Well, I'm off. Trevor has a football scrimmage that he needs to be to at 7 in the morning. We'll do some catch up in forthcoming posts to let you know what we're trying to do to help Matthew get better, what the doctors are saying, how you can pray for us, etc...
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