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.