Thursday, January 23, 2014

Still here

Yes, we are all alive and still outpatient at home.  Remember for the most part "no news is good news" when it comes to Keegan.  Not sure we have that many followers on this little blog anymore, but of those of you left, I hope we didn't worry anyone.  I haven't updated because there hasn't been much to say lately.  Keegan has been fairly stable on his current IV regimen with TPN four days per week and IV magnesium infusions the other three days.  We had an appointment with his rheumatologist yesterday, and she was very happy with how well Keegan has been doing lately.  We are marching along with weaning his steroids and hope to be off completely if he makes it through the next few months without incident.  We are still waiting on the genetic mapping to be finished, trying to be as patient as possible!

That's about all the facts there are to update about, which I suppose is why I haven't posted anything lately.  The kids are back in full swing with school, therapy, and appointment schedules.  All of that keeps us busy enough, not to mention my attempt to work more hours doing contract legal work in order to help the family finances.  We're also dealing with a giant insurance battle over Keegan's IV medications, which has been taking up every spare second and more lately.  It's not all been work though.  Last weekend, we traveled to Houston with my parents and sister so I could run the Houston Marathon.  When the pictures are all ready, I will post about it.  Not my best race, but it meant the world that my family was there to cheer me on.  Keegan crossed the finish line with me.  It's a day I will always remember.

I apologize again for the lapse in posts and the lack of true content lately.  It is difficult to explain to someone who doesn't live it every day, but sometimes the stretches of Keegan being stable are the hardest emotionally, living with the feeling of the other shoe about to drop at any moment.  I'm working hard on getting over that and coming to grips with where we are on this journey and what lies ahead.  I can't say enough how much I appreciate each of you who has continued to keep our family and Keegan in your prayers through it all.  We have learned over the years to "ride the waves".  A period of good times doesn't mean a bad one isn't around the corner, but we continue to pray and make the most of every moment we can.  Thank you for riding along with us.  More to come soon.

10 comments:

Lauren said...

I'm still here. Pretty sure my mother is too. Just so ya know.

Julie said...

I'm still here and still praying. When there is a stretch of time when you don't post I always pray that it is because things are going ok.

Lauren said...

I'm still here and enjoy reading your updates!! Glad things are going well.

Lauren Wood

Michelle said...

I'm still here too!! I can totally relate with 'no news is good news.'

Cody said...

Maddie - thanks for the post,love that you have "no news" to report.
Congratulations on the Houston Marathon - what an awesome achievement! Love that you share with us other aspects of Keegan & Miss Audrey's childhood and photos!!
Big Hug to you - Cody, Gary & Griff

Misty said...

I still check on your family too. Try to enjoy these times without worrying about the other shoe. Being proactive is great and I'm sure hard to balance proactive versus worry. Take care! Misty

Anonymous said...

Still here!

Susan said...

Still here- totally hear you about waiting for something to happen. Hang in there!

Anonymous said...

I have enjoyed watching your family grow over the years. I actually worked with Keegan when he was a baby at Children's and love seeing him doing well!

Kira Willingham said...

Still here!