Still going

This December I asked each member of the family to choose one Christmas tradition that they would like to do.  Kate's choice was to go to the Capitol to see the Christmas tree.  Monday after school, Anna, Ethan, and I picked Kate up from school and headed downtown to see the tree.  (I really don't like the lighting at the Capitol; I can never figure out how to get decent pictures there.)

Kate was anxious to get to the second floor so we could look down at the tree.  The kids discovered a few nice nativity scenes up there, too.

Ethan was a little easier to manage this year than he was last; we only had to stop him from going under the rope once.  He really wanted to see the train going around the tree up close.

Anna had some fun wheeling herself around on a smooth floor with loads of open space.  Although our home is fairly accessible for her, it doesn't have big open areas for silly antics on her part.

Recently a friend gave me a book that she thought I would enjoy.  (Thanks, Carol.)  Making Lemonade With Ben: The Audacity to Cope is the story of a family whose life bears some remarkable similarities to ours.  When Ben was 7, he suffered from a sudden, severe brain hemorrhage caused by an arterio-venous malformation.  At the time, his younger brother was 5 and his sister had just turned 1.  The night of the brain hemorrhage, he underwent an emergency craniotomy and subsequently spent several weeks at UW hospital, in the PICU and beyond.  Now, almost 20 years later, he lives in downtown Madison while working part-time at the Madison Children's Museum.  The book chronicles the ups and downs (many downs) of his journey and that of his mom, the author.

Although this family's life sounds more like ours than any other we know, we also know that no two brain traumas are alike, so it would be unfair to compare Anna and Ben.  The book, however, provided me with a look into how another mother dealt with (and is still dealing with) a similar trauma.  A good read for me, especially in the midst of dealing with my bum thumb.

Speaking of the thumb, it's healing.  Last night I graduated from the big bandage to a much smaller one.  In a few days, I may even try just wearing a band-aid.  This experience has reminded me that skin heals much faster and more smoothly than the nervous system.  I year ago I probably would have dealt with an injury like this much differently.

One of these days I need to get some pictures of Anna standing again.  Her recent rehab accomplishments include walking the length of the parallel bars (using her hands for support and an adult to assist when necessary), putting her shirts and pants on and taking them off (in the wheelchair for tops, on our bed for bottoms), putting her coat on by herself (try doing that while sitting in a wheelchair sometime!), and improving her handwriting.  She is getting more comfortable with people (including herself) touching her face and neck (stimulating those parts of her body is a big step in helping her to eat orally again), and she seems to be in a good place right now in terms of the formula feeds.  (She hasn't thrown up in a few days, after a long stretch of multiple daily vomits ... I hope I didn't just jinx it ...)

Also, she has eyelashes for the first time in a long, long while.  Her hair is starting to come in, too, as well as her eyebrows, but the lashes seem to be the most obvious.  The extent of a person's hair loss depends on the type and dosage of chemotherapy used.  Anna didn't lose her eyebrows and eyelashes until she started on her cyclophosphamide regimen in May.

Anna graduated out of two medical related items this week.  First, she was finally taken successfully off of one of her heart medications.  Woohoo!  Go heart!  Second, she is being released from the nursing portion of her home health care.  Her overall health and blood counts are stable enough that we no longer need to open our home to the wonderful home health nurses on a weekly basis.  As much as we appreciated their knowledge and experience, it's nice to remove a layer.

This coming Monday (December 22) will be the first post-treatment MRI, rescheduled from the first week of December when Anna was sick.  I can't yet put into words my emotions surrounding this event.  So far I'm just trying not to think about it too much.

Time for Prayers

Thanksgiving
Please thank God that our bodies and minds have the ability to heal.
Please give thanks for the continued support we are receiving from friends, family, co-workers, neighbors, etc.
Please thank God for all of the people who are working with our family, especially those at school.  We are continuing to learn just why McFarland schools have a good reputation within the medical community.
Please give thanks for Anna's lack of vomiting recently; we will enjoy the lull while we have it.

Requests
Please continue to pray that Anna's treatments were 100% effective.
Please continue to ask God to grant us peace, wisdom, patience, and trust.
Please pray that Anna continues to make progress in all of her therapies (OT, PT, speech, and feeding).
Please pray that we all help Anna (and Kate and Ethan) find ways to deal with the emotional aspects of her life changes, especially as she grows.
Please continue to pray for all those working with Anna and our family.

Have a blessed pre-Christmas weekend!