A Diagnosis!!!!

I am so excited I could....I don't know what I could do. My heart is light and happy though and I feel like we finally have some direction and hope for Matthew. God is good and His timing is always right.

In my last post my bad attitude was apparent. Not good. We showed up to find out our doctor was also very, very frustrated because the hospital took sooooo long to get the results to her. I was thinking she just wasn't calling me, yet she didn't even have the results until just recently. She said the MRI on Matthew's ankles gave us our diagnosis(his neck and spine looked great and the chest x-ray came back normal and so far the fluid tested in his shoulder is normal,although it will be tested for 4 weeks). He has Juvenile Rheumatoid Arthritis (JRA). A few months ago the thought of this diagnosis made me cry. Now I am so glad that the MRI didn't reveal something much worse or life threatening. JRA is what we were originally sent to the rheumatologist for. However, at that point his numbers and symptoms did not all indicate JRA. Many times it takes time for children to display all the symptoms of JRA.

What does this mean for Matthew? Well it means that we are going to start a new medication that is a heavy duty anti-inflammatory called Methotrexate. We will up the Prednisone for 4 weeks to combat the symptoms that he is having right now. It takes about 4 weeks of being on the Methotrexate for it to start working. At that point then we will start weening Matthew off the Prednisone. That will take a few months, but we are very glad to be getting him off of it. It is not a good long term drug as it inhibits growth as well as other problems you can have being on it long term.

The new medication is once a week. It wipes out the Folic Acid in his bone marrow which then helps the inflammation in his body to go down. Then the next day he takes a Folic Acid pill to replace the Folic Acid that he lost because many other parts of his body needs the Folic Acid. I don't totally understand how this works. He takes the Methotrexate at night and we will have him do it on Tuesday nights. This is because he does not have school on Wednesday and the doctor said to expect him to be very tired the day after he takes this medication. Right now this will be the best day I think. Come fall and school everyday we will have to reevaluate when he takes this.

So how long do we do this? The doctor wants to see Matthew's inflammation numbers back within normal range for at least a year before she will take him off of this(he will continue to have his blood drawn every 4 weeks now.) So first we have to make it back within normal range. Then we have to stay there. So this will be a long process. Likely years. This is all good news to us though. He will start feeling better more often!! That is huge! There is a possibility that he will out grow this and we are able to treat it right now.

So our prayer requests right now are that Matthew would have an easy transition with the new meds. The doctor has had only one child in the last eight years have a bad reaction to Methotrexate. We pray that he would do well with this drug. Also, this drug might make him nauseated at night when he takes it. We pray that that would be minimal. Pray for a smooth transition as he comes off of the Prednisone, too. Please pray for patience for us as we wait for him to start feeling better and for him to fully come off all meds years down the road.

Matthew is very excited about the possibility of feeling better soon. So are we. We know it will be a long haul until this is done, but we are so thankful that we have a direction to go and that he will be able to function normally on a daily basis.

We are so thankful for the things that God has taught us and is teaching us through this and know that He will use this experience in Matthew's life to shape him into the man that He wants him to be. I pray that in all areas and situations in our life that our family would be glorifying to our Lord and Savior, Jesus Christ. Without Him, I don't know how we would have gotten through the past 7 1/2 months. We are by no means at the end of this journey, but at a new junction. We continue tonight with hope in our hearts and smile on our faces :).

Thank you all for your interest in our family, the prayers you have lifted up, and for your love and friendship. All has been so important to us. We will continue to update this blog more in the next couple months as we have friends and family far away that I know want to check this. I hope in two or three months that his good days are all the time and if I write anything each time it would say "Matthew had another great day!"

A Happy Mom

Still waiting

Something I have had to learn over the last 7 months of Matthew's illness is patience. Nothing happens as fast as I would like it to. So we are still "patiently" waiting to find out our test results. We have a doctors appointment this Saturday at 4:30pm. We are suppose to find out the test results then. I am expecting for them to tell us that they still don't know anything. That is just because that is what we have heard for the past 7 months. We will see though. I will update after Saturday. Please keep praying for our guy. He is still having good and bad days. Today has been hard, but God is good and gives Matthew relief some days and we are thankful for that.

Christina

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 :).