Welcome to our journey. On March 9th, 2009, our 11 year old daughter tested positive for Systemic Scleroderma, a rare autoimmune disease.

As we follow Kara's health very closely, watching for and treating symptoms, but anticipating healing, we hope that through our journey, you will become our prayer partner, you will be encouraged and find hope in your own circumstances.

"As for me, I will always have hope, I will praise you more and more."
~Psalm 71:14 NIV

Monday, May 4, 2009

Plans fail for lack of counsel, but with many advisors they succeed. ~Proverbs 15:22 NIV

If you know me, you know that I like a plan. I made my husband get a Blackberry so we could be "on the same page" with our plans. I like to have a plan!

Today we saw Kara's Pediatric Rheumatologist...and we have a plan! We are not going to begin any "regular" treatment right now, but we are going to watch Kara over the next few months to gain a better understanding of how Kara's Scleroderma is developing. It could remain this way for a long time. We just don't know, so we watch...and pray. 8-)

The Rheumatologist has recommended that we follow-up with our Family Practitioner to see if we should add an Endocrinologist to our team. Kara's thyroid is a smidge low, and she is having symptoms that could be related to that, so we need to look into it a bit further. Our Family Practitioner may decide to treat it for now, to watch it or to send us off to the specialist.

We will also be seeing her Pediatric Pulmonologist, asthma/allergy specialist, to see if he wants to run some testing on her lungs. With all of these tests, scopes and labs, we are establishing a baseline on the internal organs that tend to be affected by Scleroderma. These are also areas that Kara has seen some activity that may or may not be associated with her case.

Things feel a little more routine now. I think the initial phase of the "unknown" has passed and now it's becoming less chaotic and we are adapting better. Kara is learning to understand her body better, although she is not quite versed on the medical jargon of her condition. She is just happy that she can play contact sports again! LOL

We are living out the title verse of this post, Proverbs 15:22. We have advisors and we have counsel!! Best of all, we know that the Lord has put this team in place for Kara. They are now a part of our lives for a reason. Our prayer is that we can be a blessing to them and show them His love through this journey!

Thank you for your continued prayers! Your words of encouragement are treasured by our family. You are treasured by our family!

2 comments:

  1. Is she still off the Anaprox, and will she stay off as long as she can handle the pain and discomfort?

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  2. Yes, sorry, she will only take the Anaprox as needed to protect her GI tract. YAY!

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