Friday, July 22, 2011

Hip MRI results

Jacob's pediatric rheumatologist emailed me today to let me know that
Arthritis is in BOTH of Jacob's hips. The right is worse than the left.
This MRI was ordered a few weeks ago because when he had his 3 month visit with the rheum
she could feel there was stiffness in his hips. Three months prior to this she had noticed the same.
She said it was time to do an MRI to see what is going on in there.
Jacob in not having any pain what-so -ever with his hips. That is a good thing!! He is having
continuous pain in his heels though. After emailing the rheum back and forth, she decided
to have him do Humira weekly. I asked her if adding back in MTX would be an option, but she
wants to give the Humira weekly for now. If he continues to have pain and troubles we will
have no other option than to go with the MTX again.
Jacob is not happy about the shot being weekly. He has not been doing well with the 40 mg dosage. It is extremely painful for him now.
I am trying to make sense off this all. I don't know why I feel so surprised when something pops up again and again. Each time things seem to get quiet it's like you let your guard down then BAM! It's back. Now with this hip involvement I feel more fear for his future. This disease isn't going anywhere. We are 7 years in and there is no end in sight. A lot of emotions are running through my head tonight. After a good nights rest, I will be ready to fight again.
Please pray for all the kids dealing with this disease. As Jacob said tonight "I am sick of this stupid arthritis".

Saturday, July 16, 2011

New update

Since I last posted Jacob has had a rheumatology appointment and an eye appointment.
The eye appointment was just this past week. I am very happy to report his eyes are still clear.
They have been clear for 3 years now! (he has a few trace cells once in the past year)
His pressure was great and there was no change in his cataracts! We do not have to return for 3 months! This is the longest we have gone between visits since his uveitis diagnosis 3 1/2 years ago.
Jacob went to the rheumatologist a couple of weeks ago. He has been still having tons of heel pain. I told the doctor that I have noticed he has changed the way he walks because of the heel pain. His thigh on the side of the heel trouble is smaller than the other side. This is happening because he has changed the way he walks! So obviously it has been bothering him more than he has let on. While we were at the JA conference both of his heels were bothering him a lot. He had such a difficult time walking around seeing the sights. I was able to get him a wheelchair while we were in the Museum. He continues to have the pain pretty bad right now. He is back on Naprosyn 500mg twice a day.
The rheumatologist also found that he is getting stiffness in his left hip still. This was noticed a few months ago and she decided it is time to have an MRI to see what's going on in there. That is scheduled next week.

JA Conference 2011

Last week we attended the Juvenile Arthritis Conference in DC. We had such an amazing time!
Even though Jacob has had JA for the past 8 years, this was the first conference we were able to attend! What an awesome experience for my whole family. I was able to meet up with so many of the moms that I have been talking to online for the past few years! To meet them in person after all this time was wonderful! I can't even explain the bond we had with each other. We had never met before, but yet felt like we have known each other forever! To be with others who are going through the same experience was so great! To see our kids play together was priceless! I am hoping to be able to make this a year long tradition. Next year the conference is in Indianapolis.