Appointments, communication, and paperwork

The last week and a half has been dominated by appointments, communication, and paperwork.  Not my favorite things, but certainly something that has to be done.

I'm making a mental and written note to myself that for the next few years, August and February are going to include a lot of appointments.  Everyone is due for dentist check-ups during those months.  Anna's MRIs will continue to be in those months for the next couple of years, which means her neuro-oncology clinic visit is also at that time as well as her pre-op physical.  Then there's the random extras, like registering Ethan for preschool (ahhh!), Kate's grandparent project presentation, the girls' music programs, and a busy week for Matt at work which included visits from the global team (read this as early mornings and late evenings with a very mentally fatigued Matt at the end of the week).

But the sun has been shining more than it hasn't, and the weather is actually hinting at spring.  So we will continue to be thankful, and enjoy the days when we are all in a good place at mealtimes.

Here's a brief overview of the medical appointments Anna has had this week.

Neuro-oncology - All is good.  Scans are stable.  Most professions we saw are still pleased and impressed with Anna's progress.  We had two main questions/concerns for the team this time around.  First, Anna has had some headaches in the last few months.  Nothing serious and not related to growing cancer or hydrocephalus, but we wanted to make sure there was a record of these.  This kid has a lot of things going against her in terms of potential reasons for headaches, including a family history of migraines.  Now we have a plan in place in case the headaches become worse.

Second, we wanted to speak with one of the hospital social workers in regards to funding for Anna's summer Advance program. Without going into all of the details, just know that the insurance piece of life has taken a bit more time and mental energy than it has in awhile.

Ethan came along for the neuro-oncology appointment since the family he was scheduled to be with had been experiencing a nasty virus.  We made it work, but 2+ hours in the small exam rooms are long for Anna and me.  It was extra challenging for a four year old.

Moving on ...

Dentist - Surprisingly all is good for Anna.  We made the decision to switch to a pediatric dentist for Anna since they tend to have more experience with kids who have gone through cancer treatments.  Sure enough, instead of spending several minutes with a dentist explaining to them Anna's specific treatments and those problems for which she is at risk, this dentist was able to explain things to me.  Hooray!  We love finding new experts.  At this point, Anna has zero cavities and her overall oral hygiene is good (thanks in part to the fancy, shmanzy electric toothbrush she has been using).  All of her adult teeth (minus the wisdom teeth) can be seen on a panoramic x-ray and they all look to have developed relatively normally.  The only concern at this point is thin enamel on her six year molars, which still haven't fulled erupted.  And that overbite she developed because of the 4+ year thumb sucking habit.

Vision Specialist - Not as good, but still with potential.  We decided to take Anna to a vision therapist in addition to the ophthalmologist she has seen for the past three years.  Nothing was getting better with regards to her double vision, so we wanted to give vision therapy a try.  We figured that there is no harm in trying.  The therapist officially diagnosed Anna with "sixth cranial nerve palsy" (which I think I had heard before, but never as clearly explained).  Basically, the nerve that triggers the muscles to pull Anna's left eye outward was damaged.  The therapist said she has seen and successfully treated adults with this condition.  However, Anna's is pretty severe and she has lived with it now for three years, so the potential for success is lower.  The good news is that Anna has some control of those muscles, just limited.  In the next 8 weeks, we are going to try some targeted eye exercises with Anna to see what, if any, improvement happens.  Then we will all decide if more therapy is worth pursuing.

And then we pounded through our taxes on Saturday morning.  Believe it or not, but we have not yet qualified for a medical deduction in any of the years since Anna's diagnosis.  You have to hit a ridiculously high number before it's considered worth itemizing the medical expenses.

In addition, in each of the last two weekends, one or the other of the girls has had an extra amount of work from school, whether from absences, preparing Valentine's, or just because.  It's no fun for anyone to spend a few hours on a Saturday doing homework.

But ... we have a new nephew in the family!  My brother and his wife are the proud parents of a beautiful baby boy.  I will hold off on any other details or pictures until I am authorized to share them on this blog :)

Time for Prayers

Thanksgiving
Please give thanks that the new nephew arrived healthy and to happy parents.
Please thank God for all of the billing/insurance people working with us, and behind the scenes, in the last three years.  We have had very, very few issues with our insurance company up to this point.
Please give thanks for all of the experts in their fields, whether it be oncology, neurosurgery, therapy, educational, dental, etc.
Please thank God that our family is in a stable enough place to weather weeks like the last few with grace, patience, and flexibility.

Requests
Please pray for Adam and Jess as they begin their journey of parenthood.
Please ask God to give us clear guidance about the direction our summer should take.  I don't like uncertainty, so I need some extra peace and patience right now :)
Please pray that we are able to find creative ways to encourage Anna to do her eye exercises.  So far we have a few ideas, but they may get old fast.
Please ask God to continue to grant Anna the perseverance and motivation to work as hard as she works.
Please pray that Anna sees the results of her hard work, her wisdom, and her kindness.

Thanks for putting up with our random blog entries :)