Thursday, July 24, 2008

July 24, 2008 Rheumatology appt.

We are about 7 months into the recent flare up. We recieved good news again. Jacob's knee is "almost" there. The only issue we have with it right now is that he cannot bend it completely closed. The doctor thinks it is just muscle tightness. He wants him to try to stretch it every night. The inflammation is pretty much cleared. He isn't complaining of any other joint soreness.
So the plan remains the same. Keep on the current medications. So two great appointments the last couple of weeks. The next rheumatology appointment is in 4 weeks. It will be right before school starts.

Sunday, July 20, 2008

One year anniversary

I thought I would make note of the one year anniversary of my Dad's passing. The one year anniversary is just two days away. I can't believe that a year has passed. My Dad fought bravely for 1 1/2 years against a very aggressive lung cancer. For anyone who has witnessed someone endure such a tough battle to survive, it is life changing. The struggle was mentally and physically exhausting. Time does help heal the pain that we all went through as we watched him slip from our sight. Time will continue to help us heal and move on.

My Dad is at peace now. I miss him everyday. If you are reading this please have him in your thoughts as we approach the one year anniversary.
John Schaefer
Son, husband, father and Pepere
July 11, 1946-July 22, 2007

Saturday, July 19, 2008

Arthritis advocacy

The following posting is on the website under advocacy. The Arthritis Act is currently still awaiting action by congress! Go onto the site and send a letter! Contact your state senators to make sure that they are supporting this act. Time is running out. This bill is critical for the health of our kids and the future kids who will suffer this devastating disease.

Contact Congress Now

Congress has only 21 Congressional working days left to pass the Arthritis Act before they adjourn for the year. It is absolutely critical that you let the House Energy and Commerce Committee know that action on the Arthritis Prevention, Control, and Cure Act (H.R. 1283) must happen now!

We need YOU to contact Chairman Dingell (D-MI) and Ranking Member Barton (R-TX) NOW and request the Arthritis Act be marked up before July 31 when Congress leaves Washington DC. Despite the overwhelming support of 237 bi-partisan House Members of Congress, if the Act doesn't move now, it most likely will die in Committee

Wednesday, July 16, 2008

Big Day today!

Jacob had his eye appointment today with Dr. Foster, he waits patiently.

To keep himself occupied in the room he plays Nintendo
Jacob got a great report today! His eyes are completely clear today! There is no active uveitis present! The Humira is working beautifully. Dr Foster wants to keep Jacob on the current mix of Humira and Methotrexate for the next two years, as long as the eyes stay clear. We return in 8 weeks for the followup.

After the appointment today when got home, Jacob was ready for his shot. He was extremely brave today. We put the numbing cream on and he held still. Third time is a charm!

Jacob was all big smiles when he was done!

Monday, July 14, 2008


Daniel had his first attempt at soccer yesterday. He wasn't too interested

Newspaper article
(or click on link on the side) Jacob's story was published in the local paper today.

Sunday, July 6, 2008

Jacob in the newspaper

Jacob's story will be in the newspaper on July 14th.
There will also be a video online under the Suncast section.
I am not sure when that will be available. Keep watch for both!

Wednesday, July 2, 2008

Humira shot # 2

I am happy to say we both survived the first shot given by mom! Jacob was extremely anxious today about the shot. He actually woke this morning saying he had a nightmare about it last night! When it was time to give the shot I put the numbing cream on his leg and he went running! It took about a half hour of tears and a lot of convincing but he finally gave in and let me do it! I don't know who was more nervous him or me! I will tell you it is very difficult giving an injection for the first time especially on my son. What a relief it is over. Now two more weeks to rest until the next one!

Tuesday, July 1, 2008

Juvenile arthritis awareness

One thing that I have noticed since beginning this journey is that there are not many people who are aware that children get arthritis. There are approximately 300,000 kids who are affected by this disease. This week I have ordered the car magnet that says kids get arthritis too, I have joined the Boston Arthritis walk that will be held in September. (donation link on the side:)) and I have contacted our local newspaper to see if they would run an juvenile arthritis awareness article.
The newspaper is coming by tomorrow for the interview! Stay tuned! I am hoping this little bit, that I am doing, I can somehow make people more aware of this disease. We need continued research and availability of care for all these kids who are affected. Every little bit counts, right?

Tomorrow Humira shot #2. Hopefully I can pull it off. Wish me luck!