Tuesday, September 27, 2011

Worsening

Just a quick note:

Beth's other knee is now involved and her ability to get around is more impaired. Today, Monday, she crawled around until 4 pm, whereas other days the stiffness subsided in a couple hours. I cried for much of the morning over her invalid status and her apparent depression. She asked to nurse about every twenty minutes. Thank God I never weaned her. 

I've been using ibuprofen twice a day, but today I gave a third dose at 2pm, (6-8 hours apart) which helped her get around finally at 4PM. Perhaps she rode her bike for too long yesterday? It's important to balance rest with exercise and it takes trial and error to find the right balance. Ibuprofen is not a benign drug, but this disease used to be a horrible life sentence for children and drug therapy has changed that. I can't be afraid of these drugs....especially since she might need steroid injections in her knees.

I called the orthopedic doctor and asked for a pediatric rheumatology referral, due to the other knee involvement. Calling the referred doctor's office, I learned that Beth would have to wait until November for an appointment. I made the appointment but asked to speak to a nurse about Beth's reduced quality of life....sleep problems, depression and poor eating, poor mobility.

I also put out a call for prayer via e-mail. An hour later, a nurse called and moved Beth's appointment up to October 4.

Thank you for your prayers. 

Today, as I watched my 33-month-old girl crawl around--Miss Beth, who has been walking since 8.5 months old--I was reminded of the full wrath of God. Of course, disease is a result of the sin curse (we couldn't have prevented this and we didn't do anything to cause it). When disease and pain manifest in your own innocent child, it's impossible not to come to terms with the wrath of God.

He is faithful, mighty, merciful, loving, forgiving....yes. All of that. But he is to be feared. He is Holy.

You don't truly know God until you come to terms with both his extremes....his work on the cross (his agape love) and his wrath.


3 comments:

Sandi said...

glad to hear they moved the appt up. Still praying friend!

Terri said...

:( I am so sorry to hear about this! I will pray for your sweet girl.

Anonymous said...

So sorry! Praying here, too. Terra