Friday, July 22, 2011
Posted by Jacob's Mom at 9:10 PM
Saturday, July 16, 2011
Posted by Jacob's Mom at 6:32 PM
Posted by Jacob's Mom at 6:15 PM
Wednesday, June 15, 2011
Posted by Jacob's Mom at 11:21 AM
Wednesday, May 11, 2011
Posted by Jacob's Mom at 1:32 PM
Sunday, April 10, 2011
Posted by Jacob's Mom at 2:12 PM
Wednesday, March 30, 2011
Jacob's Journey on Video
To hear the song, you have to scroll down and pause the song on here.
Posted by Jacob's Mom at 6:37 PM
Wednesday, March 9, 2011
Jacob had his 2 month eye check today. His eyes remain clear!! All looked great today. Pressures were great also. I think he has been off drops now for 3 YEARS!! The Humira is
working well. He is still completely off methotrexate. Jacob did complain of his knee hurting when he got home from school yesterday. When I just asked him how he is feeling this afternoon he said he is fine and "resting his knee". He insists it is fine, but he wants to rest it. hmm When he does complain of pain, I know it must be bad. I think he has a very high pain tolerence. I suppose it's a good thing, it doesn't slow him down often.
The pic is of Jacob and his younger brother, who wanted to come along today. After the ride in traffic to Boston today he said he will go to school next time. haha
Praying all of our kids are feeling well today!
Posted by Jacob's Mom at 1:04 PM
Monday, February 7, 2011
Jacob had appointments today in Boston with the orthopedic and the rheumatologist. He still continues to see the rheumatologist every 3 months and the orthopedic every 6 months.
We went in today thinking it was going to be just a routine appointment. Jacob has been feeling good at home and has not really complained about anything. Everything seemed to be holding steady. When we see the rheumatologist and the orthopedic it is so convienient. They share the same spot in the hospital. We arrived there and went immediately to xray for xrays of his leg lengths and his spine. After the films we went right in to see the rheum. The nurse took the usual vital signs and we talked about CARRA. We were able to finally sign up for the registry.
There has been talk for years about setting up a registry that will allow for a group of kids to be followed for research for treatment and a cure for this disease. We are happy to be part of this!
If any of you have not been approached by your child's rheumatologist please ask about this!
When the rheumatologist came in she asked Jacob how he was feeling any pain, problems stiffness etc. Jacob is quite the character answering her. He always brings a laugh. He denied any problems. So she looked over his joints. She found something new today. Yup new. Haven't had any issues with this joint yet. His left hip. It was stiff. She also noted that the toes which have been swollen for quite sometime, were still swollen. Jacob continued to deny any trouble with the joint. She decided to start with an xray to rule out bone changes here. So off we went to xray again. I think he has had enough radiation for a while now.
After the xray we went in to see the orthopedic. The xrays that were taken of his spine and leg lengths have remained stable. He still has scoliosis but it is still within an acceptable range. His leg lengths were about 7mm off. ( I think) So very minimal. Next we moved on to the hip. (the new joint, in case I didn't mention that) He was able to feel the tightness and said we may want to consider doing a joint injection. He looked at his toes as well and I asked about how the 2 toes do not bend much at all. He said he could feel the "nodules". He was concerned that the arthritis was active again. He left the room and consulted with the rheumatologist again. When he left the room Jacob was very upset. He kind of put his head down and quietly cried. He remembers all too well being put to sleep for these procedures. He wanted no part of it again. I think now that he is getting older this is tougher for me as well. He understands everything going on. He knew that hearing the arthritis was active again was not good. The doctor came back in the room and said that they discussed what to do at this point and they both agreed to leave the hip alone. Jacob is not in any pain, and he doesn't seem to be affected by it.
We return to the rheumatologist in 3 months. The chronic disease is still insisting on being chronic. Maybe one day it will decide to stay away.
Posted by Jacob's Mom at 7:41 PM
Saturday, February 5, 2011
One of the biggest concerns, we as parents have regarding Juvenile Arthritis and Uveitis is the lack of awareness. For a disease that affects more than 300,000 kids, not to many people have heard of it. We are always looking to spread awareness. I was just on Dr. Foster's site and came across someone spreading awareness. Jay Jay French from the band Twisted Sister is raising awareness. His daughter at 6 years old was diagnosed with uveitis. She has traveled the road like a lot of our kids. You can read about Jay Jay's mission and fundraising to support this cause. His project is called The Pinkburst Project. Click on it and see what he has planned! Go Jay Jay spread awareness.
Posted by Jacob's Mom at 12:29 PM
Sunday, January 9, 2011
Posted by Jacob's Mom at 8:12 AM
Wednesday, January 5, 2011
It has been 3 years since Jacob was diagnosed with uveitis. I can't believe that long has gone by!
We have been continuing to see Dr. Foster every 8 weeks. We have clocked quite a few miles back and forth to Cambridge. These visits are very emotionally draining for me. Jacob on the other hand looks forward to a day out of school. Every visit that we go to I feel as though I am as nervous as the last. I can't even imagine what it will feel like if we ever hear the word "flare" again. I think the longer we have gone without cells the more nerve wracking it gets. It is even more worrisome with the med tapering. We have been still continuing to wean off of Methotrexate. He is down to only 5 mgs tonight. In two weeks he will take his last pill of it. I can remember when we were told he needed to go on this drug. It was scary to say the least. Methotrexate is a chemotherapy drug. I was very familiar with chemotherapy with my father having been through cancer, I was fearing the worst with the side effects. The doses used for arthritis are far lower than those used for cancer. Side effects such as nausea, vomiting, hair loss, mouth sores, liver dysfunction and lowered immune-system are possibilities even so. Jacob generally did well with the methotrexate. Initially he had awful mouth sores. The doctor quickly switched from folic acid to Leucovorin to help combat the side effect. We have also been doing blood work routinely, every 1-2 months, to watch his liver for an problems. The blood work has been a pain, but a comfort knowing that if this med was doing anything it would show immediately. Anyway, it will be a blessing to be able to stop this med sooner rather than later.
The appointment today went very well! The fellow we saw today was great! He was so thorough in his exam. He dilated Jacob's eyes today to be able to see in the back of his eyes. He did this because Jacob said that he has been seeing floaters. All was clear in the back of his eyes as well as the front. His pressures were good today also. The right eye was 21, the left 17. His vision was 20/25 both eyes.
February will be his rheumatology visit. Hopefully his joints continue to do well and don't need these meds too long either! I don't think there is any plan to start weaning the Humira too soon though.
Thinking and praying for all of our JRA and uveitis kiddos. Hoping for a healthy year for all.
Posted by Jacob's Mom at 2:19 PM
Saturday, January 1, 2011
The blog list is growing! It is great that there are so many people out there willing to put their child's story out there. Take the time to click on the stories. Juvenile arthritis is very real. There are so many children fighting this awful disease. Awareness, Awareness, Awareness!!! Spread the word!
Posted by Jacob's Mom at 11:49 AM