Since Mia was diagnosed in 2007 with juvenile arthritis, she gets her eyes checked every three months for inflammation (uveitis). Mia is ANA+. And, even though her brother has gotten several great reports that he is "arthritis free" from his rheumatologist, we still have him go every six months to have his eyes checked, too. JJ is ANA-.
So, today they go to Cambridge to see Dr. Foster to get their eyes checked for uveitis. And, tonight is "shot night" for Mia when she gets home. Long day for my girl!
I would like to ask for prayer, not only for my kids, but for family friends who have a kid(s) currently dealing with uveitis in their eyes. It is a serious disease that, many times, goes hand-in-hand with uveitis. And, the treatment is not fun, for kids or parents. LOTS of steroid drops in the child's eyes to get the inflammation under control. And, shots, shots, shots.
I ask that you pray for these children. Pray for their parents - extra grace and peace for their families. Please pray for my friend Joanne and her son, Jacob. Today was a hard day for both of them as Jacob's uveitis is really bad right now. It's his worst uveitis flare ever. My heart goes out to them both.
Will keep you posted on Mia's and JJ's appointment....
Thank you to all who read this blog and to those who pray! This is an awful disease and, as a parent who with a child who has chronic pain almost every day of her little life, I can't tell you how much Mia and I just want this to be over.
Friday, January 18, 2013
Thursday, January 10, 2013
Heading In The Right Direction!
These are my favorite kind of appointments! The kind when you see results. The kind where it is confirmed you made the right decision for your child. The kind where the doctor gives your child "two thumbs up!"
Dr. Miller was very happy with the progress Mia is making right now. She said all of her joints look great - quiet and calm! She did notice her hair is starting to thin, but reassured me it will grow back. BUT, while she had a rough start the first few weeks adjusting on methotrexate, she feels she is "starting to make the climb upward."
With that said, she thinks it is time to start weaning Mia off Indocin in the hopes we can get her down from two meds to only one - methotrexate. Mia has been on Indocin for over 2.5 years and since she was diagnosed at 22 months old, she has never not been on some type of NSAID.
This is a big deal. And, we are pretty happy!
While everyone is healthy in the house, she wants us to start skipping a dose of Indocin every third night for three weeks. If she does okay and doesn't complain of pain, then we can start to eliminate her night time dose altogether and just stick with the morning dose until we see her six weeks from now. Yes! Steps in the right direction!
Her blood work came back and she said everything looks great! However, there are still increased white blood cells in her urine. This is the second time she has told us this - the last urinalysis showed the same thing, but this time it is elevated even more. So, she wants us to repeat the urine test (for the third time) and get a culture done. Then she will call us with the results. She said, it could be the Indocin causing the increased white blood cells, but she is not sure.
After Dr. Miller did her routine physical exam with Mia, checking her range of motion and looking over her joints and taking measurements of the joints, she gave Mia "two thumbs up!" Mia was so excited that she decided to show Dr. Miller how she can do the splits now. It was pretty awesome!
Today, we are very thankful to God that we are heading in the right direction and seeing improvement in our daughter's body. Today, I am one happy Mom with one happy (and flexible!!) daughter!
“Your body will glow with health, your very bones will vibrate with life!”
Proverbs 3:8 (Msg.)
Dr. Miller was very happy with the progress Mia is making right now. She said all of her joints look great - quiet and calm! She did notice her hair is starting to thin, but reassured me it will grow back. BUT, while she had a rough start the first few weeks adjusting on methotrexate, she feels she is "starting to make the climb upward."
With that said, she thinks it is time to start weaning Mia off Indocin in the hopes we can get her down from two meds to only one - methotrexate. Mia has been on Indocin for over 2.5 years and since she was diagnosed at 22 months old, she has never not been on some type of NSAID.
This is a big deal. And, we are pretty happy!
While everyone is healthy in the house, she wants us to start skipping a dose of Indocin every third night for three weeks. If she does okay and doesn't complain of pain, then we can start to eliminate her night time dose altogether and just stick with the morning dose until we see her six weeks from now. Yes! Steps in the right direction!
Her blood work came back and she said everything looks great! However, there are still increased white blood cells in her urine. This is the second time she has told us this - the last urinalysis showed the same thing, but this time it is elevated even more. So, she wants us to repeat the urine test (for the third time) and get a culture done. Then she will call us with the results. She said, it could be the Indocin causing the increased white blood cells, but she is not sure.
After Dr. Miller did her routine physical exam with Mia, checking her range of motion and looking over her joints and taking measurements of the joints, she gave Mia "two thumbs up!" Mia was so excited that she decided to show Dr. Miller how she can do the splits now. It was pretty awesome!
Today, we are very thankful to God that we are heading in the right direction and seeing improvement in our daughter's body. Today, I am one happy Mom with one happy (and flexible!!) daughter!
“Your body will glow with health, your very bones will vibrate with life!”
Proverbs 3:8 (Msg.)
Monday, January 07, 2013
No Resolutions. Just One Word!
Over the last year, I've read numerous "OneWord365" posts and tweets and thought, "Huh...that's pretty cool. Good for them!"
But, not for me. I don't have time. Too much going on with life.
But, not for me. I don't have time. Too much going on with life.
As 2013 kicked off, posts and tweets and blogs were shared, once again, with everyone's "OneWord." And, their words for this upcoming year are really great! These folks are not making resolutions, because, as most know, resolutions are destined to be broken. This is different. This is simple. Just one word for the year - a theme and focus to live by. I can do that!
So, one word. One word for me? What is my one focus for the next year? What would it possibly be?
So, one word. One word for me? What is my one focus for the next year? What would it possibly be?
Balance? That's sounds nice. It sounds positive and, seriously, what mother doesn't need a bit of balance in her life? I know I do. Some days I feel like I am "on my game" and other days I am looking at the clock, pleading with Jesus and all the angels to bump the clock up to 7:00 p.m. to when my sweet three are tucked into their beds.
But, "balance" didn't stick.
Laugh?? Yeah...that's it! Laughing is great. And, such a good reminder that "life's not that bad." And, I LOVE to laugh. Especially with my dearest ones because that's when the laughs come easy. Those are the best laughs of all.
But, "laugh" got old.
For me, even during the hard times, laughing isn't too hard. In fact during my most tearful moments, I can usually manage to find something hilarious to laugh about.
For me, even during the hard times, laughing isn't too hard. In fact during my most tearful moments, I can usually manage to find something hilarious to laugh about.
And then, while sitting in the parking lot by myself after a doctor's appointment, it came to me - my word for the year 2013.
Overcome.
1. To defeat (another) in competition or conflict; conquer.
2. To prevail over; surmount
3. To overpower, as with emotion; affect deeply.
It has always been my word. Since the beginning. And, it's not just for me, but for my daughter, too. But, isn't it funny how you can hear a word over and over again and then suddenly it means something totally different to you? Maybe because of a situation you are in or something you've experienced? That's how "overcome" was for me the other day. It took on a bigger meaning than normal. Bigger than just this blog.
Because, for me, "overcome" means overcoming some ugly stuff:
Overcome.
1. To defeat (another) in competition or conflict; conquer.
2. To prevail over; surmount
3. To overpower, as with emotion; affect deeply.
Because, for me, "overcome" means overcoming some ugly stuff:
- fear
- anxiety
- stress
- self-doubt
- worry
- despair
- sacrificing my own needs/desires to please others
- insomnia
- health issues
These are normal struggles that many people deal with. I deal with them. But, put these "uglies" in a bag all together and carry them around with you every single day? Sometimes without even realizing it? It makes life awful. It makes life for those around you awful. It makes life for those you love the most awful.
For my daughter, "overcome" means overcoming:
- juvenile arthritis
- taking daily meds
- weekly injections
- side effects experience because of MTX injections (mouth sores and hair thinning/loss)
- physical and emotional pain
- fear
We are heading into our third month with this new treatment. While there are still things to "overcome," things are starting to even out for Mia. But, my prayer for her is that she doesn't remain here. I believe that one day she will OVERCOME this disease. (Through Your Word, You have imparted life to MIA. That life restores her body with every breath she breathes. - John 6:63)
This is OUR "OneWord365" for 2013. And, I couldn't have picked a better one.
Thank you, Alece, for starting a wonderful and life-changing movement - "OneWord365." I am honored to be apart of it!