The MRI

Matthew did wonderfully today. It was a little scary for him to go into the MRI room without Mom and Dad so a couple tears were shed by him(and me later), but he was very brave. The hospital staff was wonderful. He was under anesthesia for about 3 hours. While under they could see in the scan that he had some fluid in his shoulder. The doctor decided since he was already out that they would use a needle and draw some of that fluid out and send it to the lab.

We were in the car leaving, trying to get out of the TMC parking lot when our doctor called on the cell phone and said that since we were already at the hospital she wanted to order a chest x-ray too. So we turned around and went back into the hospital for another hour. So we are glad that we got a couple extra tests done today, even though the day was longer than planned, and hopefully something will shed some light on this illness.

Matthew went to the hospital with a 101.8 fever and his feet and knees and neck were all sore. This is good as were were praying that symptoms would be present during the scan. He is doing pretty well right now under the circumstances. He is pretty loopy and has thrown up 3 times so far. He hasn't had anything to eat and very little to drink today.

Now we wait. We were told that our doctor should have the results from the MRI in a week. I'm not sure about the results from the fluid in the shoulder or the chest x-ray. I am hoping that our doctor will call the hospital sooner than that and just get the results over the phone, which I am told she can do. But either way we should know something within the next week.

Thank you all for your prayers for today. Everything went well. Praise God!! I hear Matthew saying he is hungry finally :) so I will sign off for now. I will post results on here as soon as we hear anything.

Christina for the family

A "normal" week

Matthew has had a fairly normal week for how he is doing right now. He was very sore last Saturday then Monday, Wednesday and today(Friday). I fed him his breakfast as he sat very still in his rocking chair this morning. It makes my heart ache to see the effort that it takes just to chew food up when he is like this. He has had his Prednisone and some Tylenol this morning so I am hoping that will help take the edge off the pain. It seems that his sore days are becoming more frequent but that the soreness is not quite so bad. A few weeks ago Tylenol would not help the pain, but now sometimes it does.

It is just so strange how he is great one day an so awful the next. Yesterday was a good day. His cousin Clayton, who is the same age as Matthew and a great friend to him, was over. Clayton usually comes over after school on Tuesdays and Thursdays so Matthew gets to play with him for a couple hours those days. Yesterday Clayton had a half day so I knew with the extra playing time I would have to monitor and make sure there was some down time otherwise when Matthew is feeling good he just wants to play and play and play(i don't blame him). Then he over does it and we can be sure that he will be extra sore. So when I picked Matthew up from school we went straight to pick up Trevor and Clayton from school for their half day(they go to the same school). In the car I reminded Matthew that Clayton would be coming over for a lot longer and that he would need to make sure he doesn't play too hard and takes it easy part of the day(I think he hears these cautionary words from me far too much for his liking). His response to me in a very sweet, reassuring tone, like he was the adult was, "Don't worry, Mom, I've got it under control." What a funny kid :).

Yes we are still here :)

Well over two months later I am finally making another post. We made it through the busyness of the holidays and all the fun that comes with it. Our last post talked of Trevor and his neck injury. He is doing very well with Chiropractic treatment. He did not end up seeing an Orthopedic doctor and everything is going well with that although it was scary at the time.

Right after Thanksgiving Matthew developed a rash on his hands, but felt fine. We talked to the doctor and were told to just watch him. We did and he continued to do well. The rash was gone in a couple days, but then he got a bad cold the next Saturday. Normal cold symptoms. Gross coughing, runny nose etc. It took about three weeks for his cough to go all the way away, but the runny nose continued a bit. All this to say I wasn't surprise as we got his blood work done as we usually do every three weeks, that his numbers were getting worse. His numbers had been getting consistently better until the cold. That is OK though the cold was getting better so would the numbers...I thought.

Three weeks ago Matthew got another "something." Cold or flu I'm not sure. He and I were both sick the same day and felt pretty awful. No big deal this is the season for it and the Prednisone weakens Matthew's immune system. We know this. He will get over this virus too just like the one a couple months ago. Well the next day started our current situation. Matthew started to be really, really sore again on his neck, head and shoulders. So much that he can't move his neck very much again. It is reminiscent of July when they thought he had meningitis. The difference is that He doesn't have a fever every time he is sore(sometimes he does) and he is not sore every day. Also some of the time that he is sore he is really sore on his feet and ankles.

He is sore right now about every couple days. One day he will be running around acting like all the other kids and you would never know he is sick. The very next day he could be so sore that he can hardly walk. He can't hardly turn his head and his soreness in his neck area hurts so bad that he hurts to swallow food sometimes. I have gone back to having to help feed him some days while he lays in his chair. It can take him 5 minutes to get down the hall to the bathroom(it isn't that far).

So the solution now? We don't know. The Prednisone was our last resort for this unknown illness. The next thing we are trying is an MRI. The doctor ordered an MRI of his neck, cervical spine, and ankles and feet. Since this is 3 MRIs in one we have to schedule a three hour time block and the next available time is February 18. He will have to be totally put under anesthesia during the MRI. I am glad this is being done and feel that it probably should have been done this last summer when he was in the hospital. Our prayer is that nothing would be there of course, but IF there is something to be found that it would be revealed in the MRI. That we might get some light shed on this mystery and figure out how to help our little guy get better. Please pray with us that we would get some answers and for Matthew to not be in so much pain.

In the mean time Matthew continues to go to school on his good days. I am so thankful that he has half day Kindergarten even for his good days. I have gotten set up to work form home now. We kept on thinking that we would get to a point where I could go in to work on some days, but we are seeing that I need to not have commitments where I have to be there on specific days. Instead I am doing more administrative stuff each day from home logging into the computers at the gym and making phone calls from home. I am thankful for this mental distraction each day as my mind can wander to the unknowns of this new situation with Matthew.

I don't even know if anyone checks this blog anymore. If you are reading this thank you for your interest in our family and for your prayers. We so appreciate them. We keep being hopeful that we will one day write a post that Matthew is all better.

Christina for the Jorg Family

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.