Friday, March 9, 2012
LIttle scare
We had a little scare yesterday. Trevor told me he felt like his eyes were going to pop out of his head. I called Shands and they said to get him seen by pediatric opthamologist asap. We saw Dr. Williams-Wallace in Brandon. She said he did not have any cells and showed no signs of ever having inflammation. YAY! This is great news! His vision had changed quite a bit but is probably just because of my bad eye genes! The doctor said for a child his age it is really rare for them to have eye issues however because he is HLA-B27 positive, his risk does increase 25%. We don't know why his eyes felt that way but I feel much better that he does not have any cells!!!
Tuesday, March 6, 2012
504 plan
Just a little update. Saturday afternoon Trevor was more tired than usual and took a nap. On Sunday morning he said he felt nauseous but never got sick.
Monday we had Trevor's 504 plan at school. It went very well. The teachers and coaches are all concerned about Trevor and making sure he is accommodated. During FCAT testing students are not able to stand up which might be a little challenging for him but he does not want to move to different room, he wants to take the test with his teacher and his class.
Trevor did tell me that when he feels stiff from sitting too long in class he goes and pretends to staple his paper just to move around a little. His teacher told me he also goes and gets hand sanitizer. (Hopefully he is keeping those germs away!) I hate not knowing what the future holds or wondering and praying that we have a "good" weekend. I hate that on Friday Trevor has to take 13 pills (3 different medications) But... I also know that there are so many more people worse off than us. And I am thankful for what we have and where we are on this journey. If you would have asked me one year ago about Juvenile Arthritis, I would not have even known what you were talking about or even fathom that I would have a child that was a completely healthy baby, toddler, and adolescent with such a disease.
On a side note...Trevor loves Tim Tebow. He has since his Florida Gator days. I have been working so hard along with Trevor's teacher to have him meet Tim. He will be in Lakeland for the 2012 Leadership Forum at Southeastern University. So far we have not been successful. Tim's annual golf tournament is outside of Jacksonville on April 14th. We are going to the tournament in hopes Trevor can just see him.
Monday we had Trevor's 504 plan at school. It went very well. The teachers and coaches are all concerned about Trevor and making sure he is accommodated. During FCAT testing students are not able to stand up which might be a little challenging for him but he does not want to move to different room, he wants to take the test with his teacher and his class.
Trevor did tell me that when he feels stiff from sitting too long in class he goes and pretends to staple his paper just to move around a little. His teacher told me he also goes and gets hand sanitizer. (Hopefully he is keeping those germs away!) I hate not knowing what the future holds or wondering and praying that we have a "good" weekend. I hate that on Friday Trevor has to take 13 pills (3 different medications) But... I also know that there are so many more people worse off than us. And I am thankful for what we have and where we are on this journey. If you would have asked me one year ago about Juvenile Arthritis, I would not have even known what you were talking about or even fathom that I would have a child that was a completely healthy baby, toddler, and adolescent with such a disease.
On a side note...Trevor loves Tim Tebow. He has since his Florida Gator days. I have been working so hard along with Trevor's teacher to have him meet Tim. He will be in Lakeland for the 2012 Leadership Forum at Southeastern University. So far we have not been successful. Tim's annual golf tournament is outside of Jacksonville on April 14th. We are going to the tournament in hopes Trevor can just see him.
Saturday, March 3, 2012
The 2nd weekend...
Trevor is doing amazing with the medication. We gave him his 2nd dose last night and this morning he is up and going "hunting" with his dad and friends. He said he feels tired but that is about all. He is still in pain EVERYDAY and is ready for that to stop but we know the doctor said it is going to take a combination of the Methotrexate and another medication (something like Enbrel) that he will start in April to get the pain and symptoms to go away eventually. He has such an wonderful attitude and really only complains to us at home. I don't see a difference with his pain level on the higher dose of Naproxen. Maybe it does take away some of his pain but he is still hurting all of the time. This weekend he did not complain about taking all the meds and did not say "He wanted this all to stop." Hopefully all the medications will become a habit and not be such a big deal!
Everyday he puts his sun block on even to go to school. He is very dedicated to doing everything the doctor tells him to do! We have his 504 meeting at school on Monday so we will see how that goes. In PE, if the student cannot participate in the activity, they generally make them write papers about sports, etc. Trevor does not want to write papers at PE, he wants to strength train (push-ups, sit ups, chin ups). They begin a series on track and running just hurts him too much! We will see what they say at the meeting. Why should a child that wants to do physical activity be forced to write a paper in PE?
I tell Trevor the song by Kelly Clarkson, "What Doesn't Kill You Makes You Stronger" reminds me of him! He is a fighter and will stand a little taller one day!
Everyday he puts his sun block on even to go to school. He is very dedicated to doing everything the doctor tells him to do! We have his 504 meeting at school on Monday so we will see how that goes. In PE, if the student cannot participate in the activity, they generally make them write papers about sports, etc. Trevor does not want to write papers at PE, he wants to strength train (push-ups, sit ups, chin ups). They begin a series on track and running just hurts him too much! We will see what they say at the meeting. Why should a child that wants to do physical activity be forced to write a paper in PE?
I tell Trevor the song by Kelly Clarkson, "What Doesn't Kill You Makes You Stronger" reminds me of him! He is a fighter and will stand a little taller one day!
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