The Jorg drama continues-one more Jorg boy to pray for

Matthew had his doctors appointment yesterday. His inflammation numbers have dropped in half again. At this rate he should have his numbers within or almost within normal range by our next blood test in a couple weeks. The reality of how long this process is going to take for Matthew to be off the Prednisone was realized yesterday at the doctor appt. I asked the Dr. what the process would be like once we start the weening. I knew we had to go down in the dose gradually. I didn't realize how slow that process would be though. He will probably go off the drug in about 6 different increments. Each increment would be about 2-3 weeks and we probably will not start the weening process until after the first of the year. That puts him not getting done with this until almost the end of the school year!! Alot longer than I had anticipated. However, I am so thankful that Matthew is able to function pretty normal now. So we take the good with the bad.

Matthew is dealing with soreness from jumping on a trampoline while my little sister was watching him. It was an emergency that I had her watch him and I didn't give instructions for her to limit those kind of activities. Oh well, the doctor said having fun is therapeutic for him too :).

So that emergency that I just talked about was that I had to take, Trevor, our oldest son to the Emergency Room on Tuesday. Monday evening at football practice Trevor went head to head with someone in a tackle and hurt his neck. Monday night and Tuesday he could not lift his head up straight and was in a lot of pain. I took him to our Chiropractor on Tuesday and they took x-rays. They sent us to the ER because his neck is curved the wrong way and they were concerned about a dislocation.

At the ER they did a CT scan and the test was good. There are no fractures, but they still found that the curve of his neck is wrong. We are suppose to get in and see an Orthopedic specialist. I have been trying to get an appointment for 2 days now with no luck. It is getting very frustrating so I know I am learning patience AGAIN.

At this point Trevor is not going to school, obviously. He is at home and icing his neck for a 1/2 hour every 2 hours. He has a soft neck brace that he wears when not icing. He is now able to hold his neck up straight, though, so we are excited about that. Please pray that we get him into the Orthopedic doctor soon.

In a way this is kind of humorous. I know the doctor that we saw in the ER because this is our third time we have been there in the past couple years. Granted we happened to get the same doctor each time. Anyway it made me kind of laugh when she walked in the room.

So thank you all again for your prayers. It is not what things happen to you in life that are important, but how we react to those things. My prayer is that whatever comes our way that we would respond in a Christ honoring way. How blessed we are even in the midst of hard times!!

Still on Prednisone

Matthew's last blood tests came back better!! His inflammation is not within normal range yet so he continues to take the Prednisone for a little longer. The goal is to ween him off of it as soon as his inflammation levels are in normal range. Hopefully that will be soon. He will have blood drawn again this week. Last time I expected to hear from his doctor as soon as the results were back, but I guess since we were going to see her soon for an appointment she just waited. I am sure that will happen again this time. So I don't expect to know much until we have our appointment with her on November 19th.

Matthew has good energy now. He is still achy at times from using his muscles for normal stuff. He will just have to work those back up. The color in his face has gotten much better too. He looked so sickly for so long. Now his complexion is rosier and he doesn't have such dark circles under his eyes. He is looking good. He also gained three pounds back the last time we were at the doctor.

Exciting news for Matthew is that he went to school 3 days last week. The first time he has gone since the beginning of September. The plan is for him to go a couple days again this week. He is doing so well keeping up with his school work here at home. I think there will be a little catch up he will need to do, but overall he will do great going back into the class full time soon. We just need to take things slow. One step at a time and see how he does. He thinks he can do more than he can. I have to be the mean mom sometimes and tell him to slow down or that he can't do different things, because I know he will hurt for it later.

Thank you everyone who has been following this blog and praying for Matthew. I hope that one day soon I will write the final blog telling you that our little guy is finally all better. I think we are getting close. The real test will be to see how he does once he is all the way off the medication. Please continue to pray for him. We are so thankful for your prayers!!

How's the Prednisone working?

Well the Prednisone is working some. Matthew had a fever(103.5) and rash and aches this last Thursday morning. That was the first fever since he started the Prednisone a week and a day before. The Prednisone is making Matthew a a lot more "energetic" than he has been the last three months. I quote energetic though because he is a five year old boy and most of them are energetic any way. He is like he used to be before he got sick and then a little bit more :). It is really nice to see him with some energy and wanting to play more. The hard part right now is figuring out how much to let him do. So far I haven't limited his play. He has been sore the past 5-6 days, I think, because he was outside playing with his brother and cousin. He was going up and down a latter. He hasn't used his muscles much the last three months so the activity is going to work those muscles and make them sore. So I am not worried about the soreness so much, but the fever last week does concern me. I will be interested to see what his blood tests show. We will be getting blood drawn about the middle of this week so we should have the results back by the beginning of next week. Thank you all for your interest in our little guy and please continue to keep him in your prayers.

An Undate Finally!!

Well here we are almost three weeks since our last post. I am sorry we have not kept this up very well the last few weeks. It is difficult to write stuff here when we don't know what to write. It has been a hard last few weeks in different ways. We have had to make some significant decisions on treatment for Matthew as we have gotten more blood tests back. Outwardly Matthew's body has been improving and we have been excited to see that happen. His blood tests tell a different story though. His overall blood work says that Matthew's muscle inflammation is worse than our last tests in September. After 12 weeks of his body going through this inflammation process he seems to be better, but we need to get him all the way better.

We have chosen, with our doctor's help, to put Matthew on Prednisone. This was difficult as we have so many opinions coming at us from friends, family, and doctors that do not all agree with each other. We have tried other ways to get Matthew better without the Prednisone and those ways have helped, but have not gotten him all the way better. If you know anything about Prednisone you know that it is a very powerful drug with many potential side effects. We feel like this is the right time to try this drug with Matthew though, and feel that we have exhausted all of our other options. We are praying for total healing for Matthew and for very few side effects for him. If this doesn't do the trick we will continue to search for another answer.

How is Matthew doing? Matthew still is not going to school. We took Matthew out of school the first week of September and I do his school work with him here at home when he is feeling well. His teacher has been wonderful and brings his work to us and even spends time with him here going over things to make sure he is on track. I don't take Matthew anywhere except doctor's appointments and he rides along to pick up his brothers from school. He takes a 1-2 hour nap everyday and is happy to do so. He generally is in a pretty good mood unless he is running a high fever or is really itchy (just part of what he has going on in his body). Today is his third day on the Prednisone and so far the biggest thing that I notice is that he is not really achy at night. He went for a whole week without a fever right before he started taking the Prednisone on Wednesday. Tuesday night marked that week with a lower fever of 102.2. He had been very achy at night the four nights before his fever, but without a fever. This is different for him as the aches always were accompanied by a fever before.

Matthew will have more blood tests done in two weeks to see how the inflammation in his body is doing. Then we will reassess the dosing of the Prednisone. Please pray for us that this will be the final thing that will get his body back to how it should be. We trust God in His Sovereignty and are so thankful for His love an comfort that he has given us through our friends and family. We know that He is the Ultimate Healer and that Matthew's health will be restored in His timing.

Thank you to those of you who have gently reminded me to post something here. I will try to do a quick update in a week or so to let you know how the Prednisone is working. I will also be sure to update when we get the blood tests back in a couple weeks.

Surviving a Party

Yesterday was Jason's birthday party. All day as we were getting ready for the friends to start showing up I was worried that Matthew's fever would start creeping up and he would miss out on the fun. Thankfully Matthew took a nice long nap, and although he woke up with an arm that was really aching, he felt very good otherwise and really enjoyed the party. Jason had a great time, which is even more important, since it was his birthday after all. This week we made a pinata and Jason decided that he wanted it to look like Spiderman's arch-nemesis Venom (the dark colored Spiderman looking enemy.) We found out a thing or two about makeing a pinata for the next time we try, if we try, but a few kids got to hit at it before it finally fell apart.

Matthew woke up with a little bit of a fever this morning, but so far it hasn't gotten up too high. The last time he had a high fever was in the middle of the night Thursday to Friday, when it got up to 105. The good news is that besides that his fever didn't rise above 103 last week. I'm attaching the most recent chart update. Thanks for all the continued prayers!

Checking in...

It's been hard to post anything over the past couple of days. We've been really busy and it just seems hard to find anything to say when everything just seems to be the same. Matthew has still been having fevers, but it seems that recently they have not been as high. Last night he ran one all night at 101-102. It does seem weird saying that a 102 fever is not so high, but it really isn't for Matthew and he seems to just keep on going. Tonight he went to bed feeling achy all over the place but his fevers were gone. We'll see how tonight goes. We're hoping that he will feel well enough on Friday morning to join his Kindergarten class for picture day. His Kindergarten teacher lives nearby and she was kind enough to stop by the other day on her way home to spend some time with Matthew. She tested him on a few things and made sure that he is caught up on some key things.

Also, Matthew read his first book today, mostly by himself. It was a book called "I Like Bugs." We've spent a lot of time reading to him over the past couple of weeks. Lots of Spiderman, Star Wars and Transformers- surprise, surprise! He also likes a book called "Goodnight Gorilla." With that, I'll say, "Goodnight..."

metamorphosis part 2

The butterflies hatched. We won't have to hear the question "When will the butterflies hatch?" anytime again soon. The butterflies were beautiful and the process of the change is amazing.

This past week has been good. Matthew has only had the fever three times since last Saturday. His muscles are much less achy and his energy seems to be returning. We still are prone to wonder when the next fever will come, but we take it one day at a time, thankful for all the prayers of our family and friends and grateful for every day that the fever stays away.

One of the new things over the past few days is the itchiness that Matthew has been experiencing. We're not sure exactly what is causing it, but some web sites that we have seen dealing with the tricanella spiralus have said that itchy skin is often one of the symptoms. I for one hope that the itchy skin is due to the healing process, kind of like the itch that comes when a burn or scab heals. I twisted my ankle a couple of weeks ago and noticed the other night that my ankle was itchy. I hope that the itch Matthew has is due to healing going on in his muscles.

September Temperatures

I am posting the most up to date picture of Matthews Temperatures in the month of September. Since September 1st Matthew has had only four temperature spikes. We have reason to believe that the past two months bout with mysoitis and fevers may be related to the parasite Trichonella Spiralus. This parasitic worm essentially comes through ingesting food containing the larvae- usually undercooked pork. The larvae permeate the intestinal walls and lay eggs in skeletal muscle tissue. The eggs encyst in the muscles, feeding on the blood suppply there, and then hatch, mate grow and die, beginning the process over again. From much of hat we have read on this it seems many of Matthew's symptoms closely line up with this.

There is no way to prove this diagnosis once the parasite has made it through the intestinal walls without a muscle biopsy, and even then the biopsy would have to sample muscle tissue that actally has the eggs present. There are a couple of medications that can be taken that actually starve the parasite by inhibiting its ability to uptake glucose causing the worms to die, but this is a later course of action. Currently we are having Matthew take natural anthelmintics such as clove and wormwood.

Matthew's progress over the past few days has us very encouraged, but we know we're not out of the woods yet. If he continues to improve we will probably not pursue positive diagnosis through muscle biopsy. We will continue praying for our little guy. Whether this is what is going on or not w may never be positive, but over the past few days of rest and not having the fevers, his myositis has also diminished. His muscles have not been aching the way they had been every day for the past 7 weeks before.

Thank you all for the prayers and support over the past couple of months! Keep the prayers coming. We are so encouraged, yet we also are trying not to get our hopes up too much yet.

μεταμόρφωσις

Matthew has been kept busy during the past few days with his caterpillars. A little boy that comes to The Little Gym named Raymond brought the caterpillars from his yard. They eat passion vine leaves. Our jar currently has two caterpillars and three chrysalises. After a few more days in the chrysalis stage these three should emerge as butterflies. Matthew has enjoyed keeping track of how much the caterpillars have eaten and is always asking when they will finally pop out as butterflies. At some point when all we had were five caterpillars Matthew would constantly ask, "When are they going to change to 'chrythalith?'" I can remember several times that I would be in his room in the middle of the night, he would have a 104 degree fever and ice packed around him, and the main question on his mind would have to do with these little creatures in the jar next to his bed. We've been thankful for little things like this that keep him curious and allow him to focus on something besides how he is feeling.

Since noon last Sunday Matthew has had five periods of fever. The fever periods generally last about eight hours, starting with a long, gradual rise in temperature, an hour or two at the peak and then a fairly rapid descent back to normal. Two of the fevers peaked above 105 this week. Encouagingly, though, when he hasn't had the fevers his temperatures have been very normal and the periods of him not having fever seem to be lasting longer and longer.

Thanks for Books!

When we posted a link to Matthew's wish list for some books we hoped to get a couple of them but the response was overwhelming! Thanks everyone! Some of the boxes came with packing lists that named who gave the books and some did not. We will be trying to personally thank those of you whom we know to thank, but if you don't hear from us, it might just be that we can't because we don't know. Perhaps one of the best surprises this week is getting books from people we haven't had contact with in a very long time, and in a couple of cases even from people we don't know (friends of family members and friends of friends!) What an encouragement knowing that so many people care for Matthew who have never even met him! Thanks so much!

At any rate the books are keeping Matthew occupied. He is looking at all the pictures, placing lots of stickers and really likes the stories. Jason is also enjoying the benefit of having new books around, especially the book about drawing Star Wars. He's already spent multiple hours with that book.

As for an update on Matthew... he has had some really good days this week, but with the ups have certainly come some downs. He had a period of about 36 hours with absolutely no fever, not even low grade. But then the past two nights it has spiked during the night. Last night his fever reached 105.3 degrees for a couple of hours, which is the highest it has been for a couple of weeks. It was right back down to 97.5 this morning when he woke up though and he has had a fever free day all day. Recently he has been experiencing regulay stomach aches, perhaps due to all the ibuprofen he has been taking over the past 7+ weeks, but we're not sure. Continue to keep him in your prayers.

Matthew's Temperature Map August- updated

The other night I took time to chart Matthew's temperature for the month of August. I took a blank calendar and drew lines from the top of the bottom of the calendar right through the middle of each day to mark noon and the already existing lines marking the change of days represents midnight. Then I drew horizontal lines across the days representing degree marks from 97 to 105, 97 being at the bottom and 105 being the line just below the bottom line of the row of days above it. Then I just plotted all the temperatures that we have recorded at their respective times and it shows the undulations in his body temperature over time. I think that if I were to graph my own body temperatures over the same time there might be at most 2 to 2.5 degree variance and the line would be relatively flat. When I see the line that Matthew's temperature has taken I see just how unstable his body has been. It's kind of strange to look at it that way.

Ahhh. There is peace at this moment with Jason and Matthew in bed and Dave and Trevor not yet home from Trev's football practice. I find a lot of comfort knowing that those of you reading this blog are praying for Matthew and our family. Thank you and please continue. Matthew has had good days the last few days. Good meaning close to normal temperatures all day. He does have some aches that he complains a bit about during the day though. It is the nights that are hard with him hitting some high temperatures around the middle of the night. There are a lot of things to decide for Matthew and we don't know what the right decision is. How long can his little body keep this up without lasting effects? Do we need to try other stronger medications? Will those even work? I wish I knew the right answers. Right now life feels like a rollercoaster as I get excited for him during his good days and then can hardly contain my tears during his hard nights. I think I am just so tired right now too so I will say good bye for tonight. Please continue to lift Matthew up in prayer.

Little Serendipities

For some reason it hit me last night that it is such a great thing that the fridge we have has a crushed ice feature. We've filled up the icebags what seems to be hundreds of times over the past few weeks. Crushed ice is almost essential for this. Standing out in the kitchen at 12:30 in the morning I was glad that I didn't have to figure out how to manually crush up the ice. When we first moved into this house Christina really didn't like the crushed ice feature on the fridge because she was always stepping in the little wet spots where some ice would hit the floor and melt.

Matthew's fever hit 104.1 last night and I was packing the ice bags around him, but just about a half hour later it was down to 102.4 and he was up again just talking and talking, almost as if he didn't have a fever at all. He asked why his leg hurt so bad and I told him it was his myositis. He pointed to his leg and with a big smile on his face, "That thing that's making my leg hurt is a very bad boy! A very, very bad boy!" He kind of thought it was funny. I am glad he is dealing with it better than me.

A Minor Detail

Matthew's Shipping address is 3349 N Camino Esplanade, Tucson, AZ 85750. I guess it will be hard for the UPS guys to find Matthew's house without this.

Books for Matthew

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

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

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.

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...