December 9, 2009 ~ times of change

I know it has been awhile since I updated. For the most part Sadie is doing great! Her left knee pain is 99.5% healed which is a huge praise as that was the majority of the surgical pain she was feeling. She saw physical therapy the first of the month and they felt she needs to continue to stay in the walking boot until the 18th when she is outside the house. She is to not wear the boot in the house to get that ankle more mobile.

Yesterday she had an appointment with her rheumatologist which turned out to be quite the surprising visit. I have shared before and will share again that I find it is a dangerous thing to walk into any appointment thinking you know what is ahead. The times I have done that are the times I am caught the most of guard and that was the case yesterday. I am going to try and sum up a very long appointment very quickly, I apologize for being vague and for leaving any questions unanswered.

Due to the amount of inflammation that was removed during surgery on her right ankle Dr. W is fairly concerned with the fact that Sadie’s body might be building a tolerance to Remicade. Sadie has been taking Remicade since March 2006 and it is proven that at some point some people will build up a tolerance to this medication. So, Dr. W feels that if we continue to treat with Remicade we could be leading Sadie down the same path to another surgery of the same kind in the next few years. So, she has changed her medications to a medication called Humera. Sadie has never taken this medication before and most often patience have one injection every two weeks, but Dr. W feels Sadie needs to do one injection weekly. In addition, they have removed her from Methotrexate and started a medication called cellcept. I literally know nothing of this medication other then what we were told in clinic and a very small amount of information I can find online. It is commonly used for those receiving a transplanted organ and now commonly used for Lupus patience. This medication is an immune suppressant just as methotrexate was.

Some other things to let people know… Sadie dislikes shots a lot! I know it sounds a bit backwards, but Sadie would have blood draws and IV’s every day if it meant she never again had to have a shot. This comes from the old days (years ago) of methotrexate injections, which burned (it’s not the poke, it’s the medication going in that hurts). One of her first questions was “will this injection hurt?” to which was replied “yes, many people say it is the same or a bit worse than methotrexate”. Obviously, this causes her some concern. We are going to do her first injection on Saturday, so we could all use your prayer around that!!! I have some general concerns that I am just not going to voice right now, in the mean time I am just going to PRAY that the Lord protects Sadie, gives us peace, wisdom and strength during these changes and that ultimately we continue to trust the He has her in his hands and she is His.

As for what is ahead: Sadie had a bone density test Monday of next week and then will see the surgeon (Dr. M) the end of next week. I am both looking forward too and nervous for that appointment! I will update how the first injection goes after we get past that this weekend.

I ask for continued prayer for our girl and for our family. It ultimately would be our strongest desire that she be healed... just have this thorn removed, but if that is not His will for her life, then we pray for her strength, for her to trust Him in all things regardless of her understanding and that we too would look to him for comfort and nothing else. It has been apparent that these changes are causing a bit of stress in our house and I just pray for His peace to cover all of us. Thank you and God Bless!

One last note; Sadie and I have been having great discussions about her first blog posting... she is both excited and a little nervous about this, so we just wait until she is ready. I did want to share something that came out of those discussions though: Late spring, early summer were really great months for Sadie, she was doing really well physically and she was reflecting on what that was like for her. She was talking about how glad she is that even though doing some of the same things she did in summer might cause her pain, that she is always glad she tries something even if it causes pain rather then never thinking she could do it at all. I love her spirit and that even though she sits with pain she is thinking of how grateful she is to at least be able to try! Yep, I am bragging on my girl, but I get to do that from time to time!