"So how's Anna doing?"

We don't seem to be asked the "so how's Anna doing" question as often nowadays, but it does come up in conversation these days.  Since we are sometimes caught off-guard when we are asked and thus forget to include all of the bits and pieces, I figured it was time again for one of those general updates about Anna and her health.

As in years past, this post will be divided into a few categories ... medical, academic/cognitive, social, and rehab.

Medical stuff first.  As of November 2016, Anna was considered two years out of treatment.  Any changes that have been noted on her scans so far have been a result of treatment, not a recurrence of cancer.  In August she graduated from needing MRIs every 4 months, to needing them every 6 months.  Her next scans are scheduled for the beginning of February.

Many aspects of Anna's physical body are at risk because of the types of treatments she received.  For example, she was at risk for hearing loss due to one of the specific chemotherapy drugs.  Thankfully, Anna's hearing is well within normal range, according to her most recent audio-gram.

Her eyes, however, are a different story.  Anna continues to see double at distances, even with her prism lenses.  Due to the location of the tumor, the dosing of the radiation, and effects of the chemotherapy, she experienced weakness in the delicate muscles used to pull her left eye in alignment.  Up close work, like reading and writing, she can handle without her glasses.  However, anything past arms length she sees in twos.  We are finally at a point where we have decided to pursue vision therapy for Anna to see if the weakened muscles can be strengthened, or if she will always have vision troubles.

In addition to the specific muscle weakness, Anna's eyes tire more easily than what is typical.  Because of these challenges, Anna has the label of "visually impaired", which is actually kind of nice because it allows her access to a whole host of adaptive technology.

Moving on ... Anna's thyroid gland doesn't work on its own, but her thyroid medication has been stable now for more than a year.

We still don't know how Anna's pituitary gland is functioning, even after a few years of waiting and a handful of specialized growth hormone tests.  However, as of her most recent endocrinology appointment, Anna IS growing, albeit very little.  With the doctor's recommendation, we have decided to continue to "wait and see" before beginning any growth hormone regimen.

On to the category of food ... In 2016 Anna quit using handkerchiefs for spitting her saliva, became open to experimenting with a whole host of foods, and also began eating orally.  Seriously!  With the help of her different therapists, and a change in one medication, Anna began eating a measurable amount of food this fall, both at lunch and at dinner.  Most of her nutrition is still through her g-tube via homemade purees and formula, but she can drink most of her water each day now.

Anna's best showing recently for food intake was on Christmas Eve when she ate two mini-pigs-in-a-blanket, 3 cucumber slices, and some kind of dessert (I think).  Granted, that doesn't happen every day, but it's definitely movement in the right direction.  Unfortunately, Anna still doesn't feel hungry or have a reliable sense of feeling full, but we are told that these sensations may still return to her.

Time for the academic/cognitive aspects of life ... Anna is doing well in fourth grade.  After putting in hours upon hours of reading for pleasure this past summer as well as working through a math program on her ipad, she scored well above average on her reading and math skills at the beginning of the school year.  However, Anna is allowed extra time to complete tests and she certainly needs it.  Although her reading comprehension is great, she is a slow reader and probably always will be.  Anna's main academic focus this year (beyond keeping up with the regular stuff) is her writing.  Putting her thoughts into clear, organized writing is still a challenge for her.

Side note ... Anna's fourth grade team is awesome.  For example, her school physical therapist did a holiday yoga routine with Anna and a few friends during the month of December as part of her weekly therapy sessions.  Ethan and I were invited to come to the last session and watch the girls do yoga to "The Twelve Days of Christmas".  The session ended with a modified game of tag in the gym.  Fun times.

Plus, Anna's fourth grade teacher made a class project out of designing her a new desk; the one she had been using was pretty tricky to navigate with her wheelchair.  So the class took measurements, interviewed an occupational therapist and an engineer via email (I wonder who the engineer was ...), and then proposed some possible desks designs.  Anna, with Matt's help, decided on a design, and then her teacher built her the desk.  Apparently he had a new welder that he was excited to use.  Yeah.  She's got an awesome team.

But, the aide who has worked with Anna for the last year and a half recently accepted a different job in the district.  Although transitions can be tough, this particular aide was too talented to continue to work with only Anna; her skills could be used to help more kids.  We will miss her, but will always be thankful for the role she played in Anna's life in 3rd and 4th grades.

Anna's social life seems to be in a good place.  She has a nice group of friends in her class and is allowed to stay inside for recess with them on the cold, Wisconsin, winter days.  (Ever tried sitting in a wheelchair when it's 30 degrees or below?  Anna tells us it's COLD.)  This group of friends is the same group who did yoga with her in December.  Although Anna is still "different", she is less different than she was a year or two ago and the kids around her have learned through experience how to accept Anna for these differences and even move past being "friendly" to becoming true friends.

Now for the rehab piece.  The short answer for this one is that Anna uses her wheelchair at school and when much walking is expected (such as at a sporting event, in a museum, or going to a store), but at home she uses either her walker or hand-holds, or scoots/crawls.  For shorter trips that require fewer time constraints (such as church or doctor's appointments), Anna chooses to use her walker.

Here comes the longer answer (as if this post wasn't long enough already).  Anna is continuing to make progress in her balance, strength, and flexibility, but she still has a long way to go.  This past summer she participated in a 3-week intensive therapy program, during which she became much more comfortable with using her walker.  We have since learned that during the summer Anna can and will make great strides in her physical skills, but that momentum comes to a stop once school starts.  Her energies are focuses elsewhere during the school year, as they should be.

For those who are interested, here are some of Anna's PT's observations from her last plan-of-care period, which ended in December.

* Anna was able to use her walker to travel approximately 1,100 feet in 6 minutes, including navigating corners and one rest break about half way through.
* Anna can get in and out of her wheelchair or other chairs safely on her own, whether she wants to transfer to the floor, to her walker, or to another chair.
* Anna can keep her balance on a "dynamic surface" (a.k.a. piece of thick foam) for 10-15 seconds with close standby assistance.
* Anna can consistently take 2-3 steps between support surfaces with someone nearby but not necessarily holding on.  However, she needs help to walk any farther distances, and, more important, she is afraid of falling.  That fear will be a significant challenge to overcome.

If you are interested in the background information about what it means for Anna to learn how to walk again, check out a past post called Learning How to Walk.

Back to the original question ... So how is Anna doing?  Pretty darn good for a fourth grader.  Let's hope the streak continues.

Time for Prayers

Thanksgiving
Please thank God for the daily gifts he grants us, especially the ability to spend time together as a family of five.
Please give thanks for the continued positive relationships Anna has with her educators and therapists.
Please thank God for all of the progress that Anna made in 2016.
Please give thanks for the supportive and caring community around us that accepts Anna for who she is and rejoices with us when she makes progress.
Please thank God for the continued insights and wisdom of the doctors still involved in Anna's care.  2016 did not go by without their help and experience.
Please thank God that Anna's cancer is considered in remission and than she dodged the bullet with regards to some of the radiation/chemotherapy side effects.

Requests
Please pray that Anna can continue to use her intelligence and determination to make progress in all of her goal areas, both physical and cognitive.
Please ask God to continue to surround Anna and our family with people filled with the fruits of the Spirit.
Please pray for the continuing gifts of love, joy, peace, patience, wisdom, and self-control for everyone in our family.
Please pray that God's love can shine through Anna to the people around her in life.

Shoot for the moon time ...
Please pray that Anna learns to eat completely orally ... a.k.a. no g-tube
Please pray that Anna learns to walk independently.
Please pray for the patience to live contentedly until these things happen.