Falling Apart

I should know better than to get complacent.  For the past year or so, we have had only good news at Angela's appointments with her doctors.  No seizures, no vision changes, good results from her laser treatments, interventions effectively managing her orthopedic issues, and impressive academic gains. Life has been good and we have been grateful.

This week, we had different news, and I am reminded that we are still dueling with Sturge-Weber Syndrome for the upper hand, and we always will.  A visit to the glaucoma specialist revealed that the second eye drop we added to try to control the pressure in her left eye has failed.  If you are unfamiliar with glaucoma, it is increased pressure in the eye caused by too much fluid, which can damage the optic nerve and lead to vision loss.  It can be controlled but not cured.  Angela's doctor added a third eye drop and we will check in with her in two weeks.  If this treatment fails, we will be considering another surgery.  The vision exam also revealed that Angela's vision is significantly decreased in her left eye so we will be seeing her vision specialist on Tuesday.  She has been taking her glasses off a lot lately, so it all makes sense now.

Yesterday, we had an appointment with "Dr. Steve".  Dr. Steve is a physiatrist and he has managed Angela's care since her time in inpatient rehab after surgery.  We made the appointment because we were concerned about pain and tightness in Angela's wrist and shoulder.  I figured it was probably time for another round of botox injections, which brings temporary relief.  Dr. Steve agreed with me, and after examining our ever-patient, yet sassy girl, he said that she is developing a contracture in her ankle, which is "a condition of shortening and hardening of muscles, tendons, or other tissue, often leading to deformity and rigidity of joints."  Contractures are not something to mess around with.  He will treat her ankle with botox injections, followed by serial casting, which is a series of casts which stretch the muscles over a period of weeks.  After the casting, we will discuss long-term spasticity management for her to prevent contractures.  More disappointing news.

It has been a rough week.  As always, though, Angela has approached the news with her usual style of "Life is an Adventure!" so we will try to do the same.  Because it really is, after all.

Nurses

This girl makes me so proud.  She has accomplished much and has not let any obstacle stop her from achieving her dreams.  Most recently, she earned a Bachelor's of Nursing degree, while working full time and parenting an awesome and spirited two-year-old with his own challenges.  She amazes and inspires me.

Have you ever really thought about nurses?  Maybe not, if you and your relatives have been fairly healthy and have not experienced medical crises.  And that's okay.  But if you haven't, I want to tell you how crucial they are when you have a family member in need.  It makes every single moment in that hospital room more bearable when you have a nurse who has your back.  It makes it possible to look away from the constant monitoring of every breath and heartbeat.  He or she can read your needs and talk you down from the wall that you did not even know you were climbing.  They will feed you little bites of hope in your darkest moments and will act like it is all in a day's work.  They go home, gratefully, to their healthy family, make dinner, tuck the kids in bed, and return the next day for another dose of caregiving.

One of the most inspiring nurses I encountered was a woman who had lost her sixteen-month-old son to a rare and fatal disorder.  She was in charge of Angela's care in the middle of a serious blood infection that she contracted while in the hospital for another long illness.  We were over three weeks in and we truly did not know if she would go home with us.  During this time, our nurse was positive and encouraging as she administered drug after drug to try to beat the infection.  "This will be the one", she said, time after time.  She told us she thought Angela would get well, sat with me, and even held my hand.  She spoke fondly about her son, but not about the loss.  I will never forget it.  I have so many more stories like this and so many memories of wonderful nurses.  I will not forget.

Nurses are my heroes and I could not prouder that Kirsten is one of them.  She has and will continue to change lives.  She has the gift of compassion and the desire to make others' lives better.  I want to leave you one more message about nurses by my favorite author, Kelly Corrigan.  You can see it here:

https://www.youtube.com/watch?v=9caaa-DJ8HU

If you know a nurse, please thank them for their work.  There is no greater giftl