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
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5 comments:
PRAISE THE LORD!!! I am crying I am so happy! FINALLY! I am so glad you updated this so soon. I knew you had his appointment today and I have been wondering how it went. I wasn't sure if you'd have any more answers or anything that you'd post so fast and I am SO GLAD that you do!! We will continue to pray as always. We love all of you and we're so glad you're our family : ) xoxo
PS. See you in 2 weeks! HURRAY!
Yeah! I'm so happy for you!
Will continute to pray the medicine helps quickly.
ok duh shari read the blog!
this is great news. I will be praying for all of you!
Love,
Shari
That's really good news. It's a shame that he will have to deal with it, but at least there's an answer and a treatment plan. I hope he feels much better soon!
so thankful to read the update! We Praise the Lord with you for a diagnosis so that you can know where to go but will continue to pray for all that is to come. God Bless your family and strengthen Matthew!
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