Patience

It's been a week since our last post, so I thought I'd update you on what is going on...nothing.

Last Thursday I had lunch with a friend at a Chinese restaurant. I have always loved fortune cookies, not for the fortune, but for the cookie. Although this particular day I read my fortune and threw a big grown-up fit. It was something about patience and I am really tired of having to have patience! We are all done with being patient.

So we are waiting right now. Waiting for the GI doctor to call, waiting for God to heal Kara, waiting on patience, wait, wait, wait. I recently came across this great quote on patience...

“Patience is waiting. Not passively waiting. That is laziness. But to keep going when the going is hard and slow - that is patience.”

I hadn't realized the strength in patience. I guess that is why it is important to God.

Well, while we wait, Kara's tummy still feels heavy. The pain in her right arm and left thigh has diminished, and she has encountered difficult nights. She sometimes has a difficult time getting to sleep and sometimes staying asleep. Her goal this week is to make it to school every day. It is a lofty goal, but one I know God will honor.

She sees the GI doctor next Wednesday, April 8th. We don't what will happen between now and then, but we haven't counted out God's complete healing!

Thank you for your prayers...they are being answered. She is not experiencing as much pain and discomfort as before. Now, we just want the tummy better, which would mean the spleen and liver are back to normal, and a negative test result for Scleroderma! Come on, God, you can do it!

Next step...

Well, we had learned that Scleroderma can be a challenging diagnosis and now we are finding that to be the case. The Rheumatologist is sending us back to the Pediatric Gastroenterologist for further testing on Kara's GI tract. He said that a clinical diagnosis of Scleroderma is not determined only by testing positive for the disease. Since Kara doesn't have any skin involvement at this time, the formal diagnosis and treatment will not begin unless there is proof of intestinal/esophogeal damage. Thankfully, we love our Ped GI doctor and should be able to get the required tests done without a problem.

So this leads us to the following:

~either Kara has an extremely rare case of Systemic Scleroderma that is beginning internally,

OR

~Kara is carrying the disease, but it is not "actively" attacking her body.

It is nice to have the "next step" on our journey, and the good news that she may only be carrying the disease at this point. We believe God can and may have already healed her, so keep praying and stay tuned...

Seeing the Rheumatologist...

Tomorrow is a big day...we will be seeing the Rheumatologist. This specialist will be the main physician that manages Kara's Scleroderma. We have many, many questions for him and will be going to this appointment as a family. Someone recommended that we include our older daughter, Kori, in on some of Kara's appointments so she understands what we are all facing as a family. So, we will all be at this appointment and possibly the next couple as we enter into the treatment phase of this journey. We will soon know Kara's type of Scleroderma, the progression of it in her, the health of her internal organs, and the treatment options available.

Thank you for your continued prayers and your loving support. God is a good God and He is in control! We look forward to the days ahead, knowing He has a purpose and a plan for Kara and our family through Scleroderma.

"Be joyful in hope, patient in affliction, faithful in prayer." ~Romans 12:12

A friend to relate to...

Today has been a wonderful day!!

A few days ago, I contacted a support group in Northern California to try to find out if there are any other families nearby with whom we could connect. In the meantime, another family about an hour away from us, did the same thing! They have a daughter about Kara's age with Scleroderma who is looking for a friend. I have given the support group leader permission to share my contact information with this family and I hope to hear from them soon...I'll keep you posted!

God is so good!!

GREAT NEWS!!

GREAT NEWS!!! Our oldest daughter’s, lab work came back NORMAL!! And, within 10 minutes of that call, the Rheumatologist’s office called with a cancellation to get Kara in this Monday! YAY!! If God doesn’t heal her over the weekend at least we are closer to beginning her treatments!

These are direct answers to your prayers…THANK YOU!

It's Scleroderma

Let me begin by saying we are so blessed to have had the prayers and support of our family, friends, church, co-workers and Facebook friends. Those prayers have kept us going through the past six weeks and they will keep us as we go forward.

It is March 13th, 2009. We are only 4 days into our journey with Kara's Scleroderma. At this point, we are unsure of the "type" she has, but are fairly certain she hasn't had any skin involvment yet. Here is how we got to this point...

• January 27th - saw Pediatrician in group for abdominal pain/discomfort; ran a urine test - positive for blood, negative for UTI; watch it for a week and if not better run blood tests
• February 3rd - our Pediatrician wanted to run a urine culture this time; I insisted blood tests be run also; after school we went to the lab
• February 5th - saw our Pediatrician since pain was not going away; her labs were normal for the most part; but now we know the tests were very basic; he was trying to say it was IBS. I asked if it could be related to her GERD (reflux) when she was a baby or Celiac Disease (wheat gluten intolerance)...he said he didn't think so. Ordered abdominal and pelvic ultrasound and for the next two weeks, we tried adjusting her diet and giving her Dicyclomine (Bentyl) for colon cramping. Didn't work.
• February 11th - Kara had her first ultrasound
• February 13th - Pediatrician called with ultrasound results; Kara's spleen is swollen and she has a cyst on her left ovary; called in a prescription for Anaprox (Aleve) as needed and give it another week
• February 23rd - return to Pediatrician having done it his way and it not working; he ordered a CT Scan this time; I asked if it could be Mononeucleosis, he said it could be, but didn't think so and mentioned IBS again...but does that cause your spleen to swell?
• February 24th - CT Scan; Kara was a champ!
• February 26th - CT Scan results; spleen is swollen and liver is borderline; referring us to see Pediatric Gastroenterologist
• March 2nd - visited urgent care clinic for arm pain; doctor seemed a bit baffled that she was having tendonitis symptoms; take Anaprox 3 times per day...didn't think it was related to her abdominal issues
• March 4th - Got in to see Ped GI on a cancellation (PTL!); she mentioned in 2005 Kara had an autoimmune marker show up on some blood tests - something to check out; also checking for Mononeucleosis and Celiac Disease (which we were really leaning toward); she was very thorough; off for more blood tests and have to begin a laxative daily.
• March 9th - Kara tested positive for Scl70, Systemic Scleroderma, a very rare autoimmune disease where her body is attacking its own connective tissues...for her its internal. We are now waiting to see a Rheumatologist who will identify her type of Scleroderma, its progression, the impact it is making on her internal organs already, and a recommended course of action.

The past few days have been full of researching the disease, specialists and treatments. Our Ped GI has a friend finishing up her Rheumatology fellowship at Stanford, so if we don't end up seeing her, at the very least, our Ped GI has said she will consult any recommended treatment with her. God is so great!

We do suspect that Kara has been showing signs of this since she was a baby. Its understandable why it wasn't found prior to 2005, I just don't get why there wasn't further research done in 2005 when the marker showed up. One day all of the answers will be clear, until then, our trust must be in the God who has never let us down.

We already see the Lord's hand at work in all of this. Yes, Kara's symptoms have progressed in the last 6 weeks, she still has abdominal pain, and now has pain in her right arm and left leg, but we have received a diagnosis in a matter of weeks and will begin treatment very soon. Many do not find out they have Scleroderma for years, if not decades. For this quick diagnosis, we are thankful.

The Lord has a plan for Kara and our family through this journey. We know the days ahead will challenge us, but we anticipate them knowing we will continue to see God's hand at work. May our journey bring Him glory.

"Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal." 2 Corinthians 4:16-18

We are blessed, so blessed.

~Kelly