Labor Day weekend

What do you do on Labor Day weekend? Well we spent most of the day playing outside. The boys rode around on their scooters and ran around the neighborhood. While we were doing this all morning, on Labor Day weekend, Aunty Colleen had a labor Day for herself in the hospital. At 3:30pm we welcomed the newest little cousin to the mix
her name is Lacie Noelle. She came into the world weighing 8pds 8 oz. What a cutie! Her big sister is thrilled. (and in shock I think)

"a little fluid around his knee"

That is what Dr. Lopez told us today. I am not sure how to take that. He hasn't mentioned any fluid in last few visits. I think it means that there is still activity going on in the left knee. I had noticed last night that it did feel a little squishy. What that says is that he is not completely free of inflammation. I believe if he wasn't on meds right now he would have a big flare up. The meds are keeping it under control to this point. I told Dr. Lopez he is still favoring the leg and I can tell it is still bothering him. The doctor asked how many of the Humira shots he has received so far, of course I don't remember, I am thinking about six. The other joints checked out well today.

AS far as the back issues.. He said that the scoliosis is still only mild and he isn't too concerned about it yet. He measured the length of his hip to his ankles. He is about 1 cm off. He will be following it closely.

The next appointment will be at the end of October. The doctor wants me to contact him if anything comes up in the meantime, including the eye appointment if there is a change.

Humira shot # ????

I just gave Jacob him Humira shot. I am not sure how many I have given so far. I can say each time I do it, it is no easier than the first time. He is anxious, I am anxious. I still feel like I have no qualifications to give my child a medication of so much importance, via a needle. On the directions it says that I must pull back on the syriange after injecting to see if any blood is aspirated. Each time I have injected the needle I have frozen in fear of the process that all I can do is push in the med. What is the chance I am in a vein? Good question to ask the Rheumatologist tomorrow.

So relief another week down. Jacob happened to ask me this morning how much longer he needs these injections. I didn't have the heart to tell him for another two years. I said I don't know. So he then asked if we could maybe go three weeks in between shots. Sorry buddy, NO!

I will post tomorrow after we see the Rheumatologist.

The end of summer

Wow I can't believe one more week until school. Summer went by wasy to fast! I can say this summer Jacob has done extremely well. The arthritis hasn't been an issue for him. We have been keeping up the same medication schedule. Methotrexate 17.5mgs and Humira shot every other week. He has been getting slightly better with the shot. He is still very anxious and says it hurts terribly. I still get very anxious knowing the day is coming when I have to do it! This Wednesday is the next shot.

This coming Thursday is The monthly Rheumatologist appointment. I am anxious for the appointment because what concerns me is that I still think the arthritic leg is longer than the other one. He is still walking with it slightly bent. How do you try to correct a child who is walking wrong?? Not that easily! The doctor had mentioned a few weeks back that he was developing scoliosis. It is very noticable to me now. If you look at him from the back you can see how one shoulder is higher than the other. I am wondering if the doctor will order a scan to measure the bone lengths.

I will post on Thursday about the appointment. The next eye appointment, if anyone is wondering is September 17th.

Thanks for reading!
Leave me a comment if you want!

Donations

I just wanted to thank all of you who have made donations for the walk. we are getting close to our goal. I am hoping to maybe even go over the goal! :o)

If anyone wants to donate you can access the link easily to the right of the postings. Help us reach our goal and even surpass it!

Thanks!

Joanne and Jacob (Tufts Floating Hospital for Children Team)

just a little update

Jacob has still been doing pretty well. The only issue we had was he fell off his skateboard yesterday, right on his knee. It is bruised and a little swollen. I do notice it is slightly hot to touch. The thing with having Juvenile arthritis is that an injury can trigger a flare. Jacob being nine, has no fear of the what if's if he hurts himself. I worry about him falling on the knee but you can't hold a kid back. Why hold him back? This is his childhood. I am watching that knee though. Hopefully it will turn out to be nothing.

On a different note, Jacob has completed his first week of summer school. He is enjoying it. I am very grateful that he is able to do this. After such a hard last few months of school dealing with his arthritis, he needs a review. The summer school should get him good and ready for 4th grade!