We met with Kara's GI doctor today and are convinced the Lord sent her to us. All of the labwork is pointing to Systemic Scleroderma. She is positive for the Scl-70 blood test which is specific for that autoimmune disease. Now there are other labs that support it.
The scope and other GI issues (dysmotility in the esophagus and intestines) are common in Systemic Scleroderma patients, as well as her muscle aches and now the morphea spot on her leg. The GOOD news is that we haven't found any permanent damage!! YAY!!
For now I have removed her from the Anaprox (Aleve) to see how she does leading up to her appointment with her Rheumatologist. If she needs to go back on something for the muscle aches/pains and the stiffness she experiences, then she will also have to go onto a medication to protect her intestines from damage caused by the Anaprox. She will be on a laxative indefinitely. Once everything is under control, we may be able to slowly wean her off and adjust her diet to keep things moving through her GI tract.
Her spleen is back to normal!!! YAY! She can participate in PE again! She is so thrilled! If you know Kara, she doesn't like to sit still. I like to share with people how she had to use a "seatbelt" when we were homeschooling. She had a beach towel that we'd lay across her lap and twist behind her chair to remind her she had to stay seated. It was quite funny...and it worked!
So our next step is to see the Rheumatologist on May 4th to see what we do about her muscle aches/pains, stiffness, and the morphea spot on her leg.
The doctors are not officially "diagnosing" her with Scleroderma because once that is on her medical file, it will affect her ability to obtain medical insurance, as well as her medical care, and the treatments for Scleroderma are taken one step at a time with each symptom.
Once again, we thank you for your prayers. They have sustained us during frustrating times, scary moments, and your words of encouragement have kept our eyes and hearts focusing on the Lord. He has great plans for His children, plans we cannot even fathom!
We are at peace with our journey...we consider it a journey toward healing. As we wait upon Him for healing, we pray that we do not miss the blessings along the way.
Friday, April 24, 2009
Thursday, April 23, 2009
Great news...Confusing news...
Have you ever played the game where pieces of a puzzle are slowly revealed and you have to guess what the picture is? I am finding that is how Scleroderma is.
Yesterday our GI doctor called with the pathology results and lab results from last Friday's EGD scope. The pathology reports support the initial findings of no sign of Scleroderma in those tissues...PRAISE THE LORD!!
The lab work still supports and shows Scleroderma. What I am begining to understand is that Kara's lab work will always show Scleroderma antibodies because that is her "gene pool". The example the Rhematologist gave at our last appointment is that some will be positive for the breast cancer gene, but it doesn't mean they have breast cancer.
Just like the diagnosis of breast cancer is supported once a cancerous tumor has grown and is found, the diagnosis of Scleroderma must be supported by symptoms that are confirmed as such.
So, we simply have more pieces to the puzzle revealed, but we still cannot see that it is definitley Scleroderma that is causing her symptoms.
Tomorrow, Friday, we will see the GI doctor and will talk with her further. Then May 4th we will see the Rheumatologist again for more details. I'm not sure what will happen at these appointments, and to be honest, I'm not even going to try to guess. All I know is we serve a God who is bigger than any diagnosis that can ever be given!
An update on Kara...she had a nice stretch of feeling better. She started having back pains, but these seem as random as the leg and arm pains. Her fatigue seems to be better, but still not back to "normal". The heaviness in her tummy also seems to be a little better. She had her first tennis match last Saturday and seems to do well being active. She is sleeping better. Yesterday she did begin having some sharp pains again, but she is also not taking her Anaprox (Aleve-type anti-inflammatory) to see if that is what has been helping her. Keep praying!
In the wise words of Job chapter 11, who knew first hand that his God had bigger plans for his life than what his circumstances outwardly showed...
7 "Can you fathom the mysteries of God?
Can you probe the limits of the Almighty?
8 They are higher than the heavens—what can you do?
They are deeper than the depths of the grave —what can you know?
9 Their measure is longer than the earth
and wider than the sea.
10 "If he comes along and confines you in prison
and convenes a court, who can oppose him?
11 Surely he recognizes deceitful men;
and when he sees evil, does he not take note?
12 But a witless man can no more become wise
than a wild donkey's colt can be born a man.
13 "Yet if you devote your heart to him
and stretch out your hands to him,
14 if you put away the sin that is in your hand
and allow no evil to dwell in your tent,
15 then you will lift up your face without shame;
you will stand firm and without fear.
16 You will surely forget your trouble,
recalling it only as waters gone by.
17 Life will be brighter than noonday,
and darkness will become like morning.
18 You will be secure, because there is hope;
you will look about you and take your rest in safety.
19 You will lie down, with no one to make you afraid,
and many will court your favor.
Thank you for your continued prayers. May the Lord make your life brighter than noonday, may you be secure in the hope of Jesus, and may you take rest in His safety!
Yesterday our GI doctor called with the pathology results and lab results from last Friday's EGD scope. The pathology reports support the initial findings of no sign of Scleroderma in those tissues...PRAISE THE LORD!!
The lab work still supports and shows Scleroderma. What I am begining to understand is that Kara's lab work will always show Scleroderma antibodies because that is her "gene pool". The example the Rhematologist gave at our last appointment is that some will be positive for the breast cancer gene, but it doesn't mean they have breast cancer.
Just like the diagnosis of breast cancer is supported once a cancerous tumor has grown and is found, the diagnosis of Scleroderma must be supported by symptoms that are confirmed as such.
So, we simply have more pieces to the puzzle revealed, but we still cannot see that it is definitley Scleroderma that is causing her symptoms.
Tomorrow, Friday, we will see the GI doctor and will talk with her further. Then May 4th we will see the Rheumatologist again for more details. I'm not sure what will happen at these appointments, and to be honest, I'm not even going to try to guess. All I know is we serve a God who is bigger than any diagnosis that can ever be given!
An update on Kara...she had a nice stretch of feeling better. She started having back pains, but these seem as random as the leg and arm pains. Her fatigue seems to be better, but still not back to "normal". The heaviness in her tummy also seems to be a little better. She had her first tennis match last Saturday and seems to do well being active. She is sleeping better. Yesterday she did begin having some sharp pains again, but she is also not taking her Anaprox (Aleve-type anti-inflammatory) to see if that is what has been helping her. Keep praying!
In the wise words of Job chapter 11, who knew first hand that his God had bigger plans for his life than what his circumstances outwardly showed...
7 "Can you fathom the mysteries of God?
Can you probe the limits of the Almighty?
8 They are higher than the heavens—what can you do?
They are deeper than the depths of the grave —what can you know?
9 Their measure is longer than the earth
and wider than the sea.
10 "If he comes along and confines you in prison
and convenes a court, who can oppose him?
11 Surely he recognizes deceitful men;
and when he sees evil, does he not take note?
12 But a witless man can no more become wise
than a wild donkey's colt can be born a man.
13 "Yet if you devote your heart to him
and stretch out your hands to him,
14 if you put away the sin that is in your hand
and allow no evil to dwell in your tent,
15 then you will lift up your face without shame;
you will stand firm and without fear.
16 You will surely forget your trouble,
recalling it only as waters gone by.
17 Life will be brighter than noonday,
and darkness will become like morning.
18 You will be secure, because there is hope;
you will look about you and take your rest in safety.
19 You will lie down, with no one to make you afraid,
and many will court your favor.
Thank you for your continued prayers. May the Lord make your life brighter than noonday, may you be secure in the hope of Jesus, and may you take rest in His safety!
Friday, April 17, 2009
Super GI Model!!
Upper GI photoshoot is done!
It's amazing that the prep for an EGD takes about 2 hours when the procedure itself takes about 10 minutes, and recovery about 30 minutes. Kara was a trooper. She was a little scared going in, was asleep within 5 seconds of receiving the meds, and woke up giggling. LOL The first thing on her mind was pancakes!
The doctor said her images look good. It will be about a week for the pathology reports to come back on the tissues being tested. We see her next Friday afternoon, so pray those reports are back for our appointment.
The hospital was able to run the lab work through Kara's IV today, so she doesn't have to be poked again next week! YAY! Pray these labs are in by next Friday also.
Thank you for your prayers. Every step of this journey we are feeling the support of our loved ones.
“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.”
-- Rabindranath Tagore (1861-1941)
Nobel Prize, Literature (1913)
It's amazing that the prep for an EGD takes about 2 hours when the procedure itself takes about 10 minutes, and recovery about 30 minutes. Kara was a trooper. She was a little scared going in, was asleep within 5 seconds of receiving the meds, and woke up giggling. LOL The first thing on her mind was pancakes!
The doctor said her images look good. It will be about a week for the pathology reports to come back on the tissues being tested. We see her next Friday afternoon, so pray those reports are back for our appointment.
The hospital was able to run the lab work through Kara's IV today, so she doesn't have to be poked again next week! YAY! Pray these labs are in by next Friday also.
Thank you for your prayers. Every step of this journey we are feeling the support of our loved ones.
“Clouds come floating into my life, no longer to carry rain or usher storm, but to add color to my sunset sky.”
-- Rabindranath Tagore (1861-1941)
Nobel Prize, Literature (1913)
Thursday, April 16, 2009
Esophagogastroduodenoscopy (EGD)
Friday morning Kara will have a scope of her upper GI tract...down her esophagus, through the stomach (I hope all of the Easter candy is all gone), through her duodenum, and into her small intestines. It all sounds pretty intense, but the procedure itself should only take about 10 minutes. She will be under general anesthesia for the first time. I pray she comes out of it gracefully. Her Pediatric GI doctor will do the scope and we should have results right away.
Kara is a little uncertain about this procedure. Ironically, she isn't afraid of the IV, but of the tube going down her throat. She is concerned the tube will get stuck. She is so funny.
You're continued prayers are appreciated. I'll post her results tomorrow afternoon. Hopefully we will have more good news to report!
Blessings!
Kara is a little uncertain about this procedure. Ironically, she isn't afraid of the IV, but of the tube going down her throat. She is concerned the tube will get stuck. She is so funny.
You're continued prayers are appreciated. I'll post her results tomorrow afternoon. Hopefully we will have more good news to report!
Blessings!
Tuesday, April 14, 2009
Hope and praise!!
Today Kara saw her new Pediatric Rheumatologist. We like her alot! She is throrough and spoke to us directly so we could understand her.
Although Kara may be presenting with some Scleroderma symptoms, including the spot on her leg that looks like it is the skin presence, there still isn't enough evidence to diagnose her. She is not concerned about the enlarged spleen or liver at this point, but may follow-up on those at some point. When she examined her, she couldn't feel the tip of her spleen, which means it either may not be swollen any longer or that it isn't very swollen at all. This is all GOOD news! This all still could be something else...much easier to treat and manage.
The doctor has ordered more lab tests (YAY!) for a much more comprehensive look at her autoimmune system, as well as her thyroid, and a few other things. In two weeks we will return to see her with those results and the reults of her Upper GI scope being done this Friday. All of this information will help us build the picture of whatever Kara is dealing with.
We are pleased to have found a Rheumatologist that wants to keep a good eye on Kara and will work with her Gastroenterologist to put this picture together. Praise GOD!!
"As for me, I will always have hope, I will praise you more and more."
~Psalm 71:14 NIV
Although Kara may be presenting with some Scleroderma symptoms, including the spot on her leg that looks like it is the skin presence, there still isn't enough evidence to diagnose her. She is not concerned about the enlarged spleen or liver at this point, but may follow-up on those at some point. When she examined her, she couldn't feel the tip of her spleen, which means it either may not be swollen any longer or that it isn't very swollen at all. This is all GOOD news! This all still could be something else...much easier to treat and manage.
The doctor has ordered more lab tests (YAY!) for a much more comprehensive look at her autoimmune system, as well as her thyroid, and a few other things. In two weeks we will return to see her with those results and the reults of her Upper GI scope being done this Friday. All of this information will help us build the picture of whatever Kara is dealing with.
We are pleased to have found a Rheumatologist that wants to keep a good eye on Kara and will work with her Gastroenterologist to put this picture together. Praise GOD!!
"As for me, I will always have hope, I will praise you more and more."
~Psalm 71:14 NIV
Monday, April 6, 2009
Great News! And more frustration...
This past Thursday I was chatting with my friend, Pam, in Oregon when interrupted by a few other phone calls. The first two were the GI doctor's office returning calls regarding further testing, but the third call was the "God Moment!"
As we ended our call, we prayed for one another, Pam first, then me. As I was closing our prayer, my phone rang again. I ignored it, although Pam was concerned I should grab it. I told her, "If it wasn't Jesus calling, it could wait." Well, Jesus was calling and answering another prayer!
The call was the new Pediatric Rheumatologist's office calling to schedule an appointment for Kara! WOOHOO! A second opinion...or hopefully some facts...will come soon. Kara will see her on Tuesday, April 14th.
So then frustration...Kara was supposed to see the Pediatric GI doctor this Wednesday and she has been rescheduled for April 24th. She may be able to have some GI testing done in the meantime, but we'll see.
We are watching a spot on her right leg that could be the morphea skin presence. We will show the Pediatric Rheumatologist on Tuesday and see what she says. It has grown, but who knows, it could be nothing.
Well, we keep praying, we keep waiting...it isn't so bad being in God's presence so much. 8-)
As we ended our call, we prayed for one another, Pam first, then me. As I was closing our prayer, my phone rang again. I ignored it, although Pam was concerned I should grab it. I told her, "If it wasn't Jesus calling, it could wait." Well, Jesus was calling and answering another prayer!
The call was the new Pediatric Rheumatologist's office calling to schedule an appointment for Kara! WOOHOO! A second opinion...or hopefully some facts...will come soon. Kara will see her on Tuesday, April 14th.
So then frustration...Kara was supposed to see the Pediatric GI doctor this Wednesday and she has been rescheduled for April 24th. She may be able to have some GI testing done in the meantime, but we'll see.
We are watching a spot on her right leg that could be the morphea skin presence. We will show the Pediatric Rheumatologist on Tuesday and see what she says. It has grown, but who knows, it could be nothing.
Well, we keep praying, we keep waiting...it isn't so bad being in God's presence so much. 8-)
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