Unfair

Today I feel so bad for Trevor. Two almost three years ago we moved into our current neighborhood so the kids could have lots of other kids to play with,etc. Our section of the neighborhood turned out to be older retired people so not many kids for Trevor. Anyway a couple weeks ago finally a new family moved in across the street. Trevor and he hit it off great. You can not separate the two of them. Anyway, Trevor is paying for it everyday. They play basketball, fish, tennis, ride bikes, scooters, everything. Trevor cannot keep up. Today he had to just leave and come home because of the pain.(they had actually spent most of the day inside anyway because of his pain). He had to hold the walls and furniture to get into the shower. He is now laying under a heated blanket with a 90 degree temperature outside! Sometimes life is just not fair. I really am worried that the Enbrel is not working. This will be the end of the 3rd week on it and so far nothing. In fact, he seems to be getting worse. I know it is just because he is more active all day everyday but he does not want to stop. I researched and found some people have the injection,even the first and get up the next morning renewed. I thought that was going to be Trevor. It really makes me cry. I HATE to see him like this. He said to me he thought it was good that his new friend was going to Sea World tomorrow so he could just lay around all day. This is so not Trevor!!! I can only hope and pray that he gets relief from something!

Heart breaking

During the JA Conference, we did a lot of walking, etc. It was so sad because many times Trevor could just not walk any more. One occasion Chad had to carry him for 8 blocks. Another occasion, he had to skip going to the St. Louis Arch because he could just not go anymore. Heartbreaking!!!! So many of the other JA kids have wheelchairs and I thought, he isn't that bad or he won't get to that point but now I am starting to think otherwise. This is devastating along with this entire disease!!! I would in know way allow him to use it when not necessary but I also hate that he is now missing out on things he wants to do because he is not physically able to do it! A friend of ours had one and wheeled him around for a little while and he said it was nice to get off his feet. Again heartbreaking!!!!
Trevor has had his 5th Enbrel injection now and has had no relief what-so-ever. Giving him the injection has gotten better, well in St. Louis maybe not so well. He bruised!!! I of course was surrounded by many parents who give injections all the time and they informed me that I just hit a vein. Really just hit a vein!!! I felt awful!!! One of the moms told me that her son's rheumy said just to give it if not, I would have stick him again! Anyway, next one that I did on Tuesday, went better! He said it did not hurt at all.

JA conference

What an amazing experience! We attended the 2012 JA Conference in St. Louis. It was great to learn so much from the various speakers, doctors,etc. It was so great to meet other families going exactly what you are going through. It was great to ask them questions also. One surprise I noticed was the amount of families that had a genetic link to arthritis. I almost felt like we were a minority....but the statistics do not show this...very interesting! Next year it is in Anaheim , CA so I hope we can attend again! By then we will know so much more of Trevor's response to the meds, etc.

2nd Enbrel Injection....check

Yesterday evening, I gave Trevor his next Enbrel injection. It was MUCH easier this time, I only had a migraine for about an hour after giving it!!
He actually didn't even release I gave it to him. I was soooo excited, and so pleased with myself until I almost stuck myself with the needle! I guess I din't need to get too cocky!
I do however know, that we CAN do this and it really does get better!!! I always heard that but I really never thought that "passing out after looking at a needle Julie" could do this, she (I) can!
On a different but similar note, we leave for the national JA conference in St. Louis tomorrow!! We are so excited!! I will blog more during and after and have LOTS of pictures.

I don't know if I have written it before but the Arthritis Foundation is amazing! The Florida chapter has given us a $1500.00 scholarship to attend the conference. There are 19 Florida families going. I am so excited to connect, share, and learn anything and everything I can. There is a huge support out there for people with arthritis!!
Okay, on to packing... Next fear, getting through security with the Enbrel shot!!! I think I am ready (he he)!
Did I mention, that this was Allie and Trevor's first time flying? It will be fun!

I did it!

I actually gave Trevor his Enbrel injection. I did not think I would be able to do it. I am so relieved but keep over thinking things... Is there a better technique? Did I hurt him even though he said I did not? And worst of all, can I do it again?? He ran off to play basketball and fish so I guess I did not hurt him too bad.
What a strange feeling, putting a needle into someone. I tried so hard to "look" like I was calm. Right before, I almost chickened out but thought that would make Trevor even more nervous. I know it will get easier but I am really scared about the next time. Maybe the third time will be the charm and take the nerves away from me.
I must say though that is one thing I NEVER thought I would be able to do and I have accomplished it! Unfortunately, I do have to continue giving the injections.
I gave it to him one hour ago and I am still shaking and think I might need a sip of wine!! Well, until next week!

And of course Tim Tebow

A little fun after the appointment...

We finally started Enbrel!!!!

Finally after what seems like months, we began the Enbrel on July 9, 2012.  We went to Shands for Trevor's appointment.  Pam, the wonderful nurse practitioner trained us and she actually gave him his first injection.  He said it hurt for 2 seconds.  Friday will be the day I have to give him the next one.  Please pray!!!  I practiced on a squishy pig and did pretty well.  Since Trevor does not really like to take the Celebrex 2 times a day, they changed him to Mobic.  He will take that just one time a day.  He also decided to decrease his Mtx dose to 6 pills instead of the 10 pills.  Trevor has been having some nausea and actually vomited on Saturday, July 7th right after taking the Leucovorin.  They are also adding folic acid every day to help with the side effects of the Mtx.  So medication wise, this is where we stand:
Methotrexate 6- 2.5 mg pills one time a week (Friday)
Leucovorin calcium 5 mg one time a week (Saturday)
Omeprazole 20 mg- 1 pill a day (every morning before breakfast)
Mobic 7.5 mg- 1 pill a day with breakfast
Folic acid-1 pill a day with breakfast except on Mtx day (Friday)
Enbrel 25 mg- 2 shots a week (Tuesday and Friday)

He is able to have all of his required vaccines for 7th grade since he already had the live virus one.  The doctor also wants him to have the flu shot but not the mist only the shot!!!

I have to write this down because I don't know if I can keep it all straight!

I really feel like we are on the right path.  Trevor has been having some really bad days recently. (He has been much more active with it being summer and all). 
Yesterday at the doctor, his feet and knees were VERY swollen and warm and painful.  This was probably the worst he has been at an appointment. 

The Arthritis Foundation is amazing!  We are leaving to go to the National JA conference on Thursday, July 19th!  I hope we come up packed with more knowledge and resources!  19 families from Florida are attending.  I cannot wait!!!

I really don't know where this journey is leading us.  I NEVER thought we would ever go through anything like this.  I know Trevor is a very strong person and will overcome this disease!!!  I am just ready for that to begin!!!  Until that time, our travels continue...