Therapy

Anna is currently receiving in-home physical and occupational therapy.  That means three times a week her physical therapist comes to our home for an hour at a time and he works/plays with her (while I ask him questions and learn from him), and once or twice a week her occupational therapist comes to our home to do the same thing (while I do the same thing).  Anna qualifies for in-home therapies instead of out-patient therapy because of the intensity of her rehab needs.

Side note, on her initial discharge in May, Anna would have qualified for speech therapy as well.  However, the home health providers we use do not currently have in-home speech therapy.  Incidentally, Anna's maternal grandmother is a speech therapist and so I have picked up on a few speech therapy techniques in the past few years from my talented mother :)  Also, Anna is very motivated to have her speech understood here at home.  Needless to say, she is much more understandable now than she was three months ago.

Back to the initial discussion, at some point Anna will transition to out-patient therapy.  I do not look forward to that day simply because it means we will have to travel somewhere else for Anna to receive her therapy; that somewhere else will most likely not be "just down the road" from our house, but across town.  However, it will also mean that she will have graduated past the point of needing such intensive therapies as she is currently receiving.

Anyway, Anna likes her therapy time and her therapists.  Kate and Ethan like the therapists.  Anna's rehab seems to be going well, especially considering that she is still undergoing her chemo treatments.

In the last few months, I've learned a bit more about what has happened to Anna's nervous system.  Her system was not just damaged by the cancer, but also by the radiation, and the chemotherapy (which is still going on), and by the shunt infection.  None of this damage is permanent, necessarily, but it will take time to heal.

One of the kids who was at our house over the weekend was trying to put Anna's condition in context for herself and she compared it to a stroke.  I told her that there were a lot of similarities in how someone heals and recovers from a stroke and how Anna is healing.  However, Anna's situation is different, because nothing in Anna's nervous system was permanently damaged, and also because Anna is a kid.  Kid's brains are designed to grow, and to change, and to learn new things.  They are much more adaptable than an adult's brain.

So without further adieu ... here are a few of Anna's "friends" that are helping her in her rehab therapy.

Meet Stanley the Stander.

Stanley joined our family several weeks ago.  He's kind of an old school basic stander and kind of looks like a medieval torture device, but will work for our present needs.  We found him at a local rehab resale shop, and he needed a little modification (including a worktable/tray that Matt designed and made one evening in the garage).  The eyes, mouth, and mustache were also Matt's addition.  Stanley helps Anna's leg muscles, bones, joints, etc. get stronger before they can be prepared for such skills as walking.  Stanley will be finding a new home soon; a new, specially fitted stander was ordered for Anna recently and should arrive at the end of August.

Meet Sally the Swing

Sally is actually the middle blue one, just for Anna; Ethan's is the blue one on the right.  Last summer Matt and I dreamed up "The Tower" (on the right) for our backyard; Matt designed it; and he and my dad built it.  It was always meant to be the first phase of a multiple year project, growing as our kids grew.  This year was going to include phase two, with the swingset addition.  When Anna's therapist said that swinging would be great therapy for her vestibular system, we knew we had to continue with the second phase.  So, with the help of some friends, and Matt's amazing engineering skills, phase two was completed a few weeks ago.  It's awesome, but I've told Matt that the footbridge across the top will need to wait until Ethan is a little older; he learned how to climb the tower last weekend and I'm a little hesitant to introduce any more for our toddler.

Meet Creepy the Creeper

 Well, maybe Creepy isn't his name; we don't really have anything more appropriate for him yet.  If you imagine a typical 7-year-old girl on the playground, you would probably see her running around or spinning in circles or jumping, if not all the time, at least some of the time.  That girl's vestibular system is getting a lot of input and practice a lot of the time.  Not Anna's.  Matt's creeper from the garage not only gives Anna some good leg and ab workouts by pushing off of someone's hands and moving across the floor, but we can also spin her (very, very slowly) to start giving her inner ear a bit of practice again.  When her g-tube goes from being a peg to a button (for those of you who know the difference) and tummy time is more comfortable for her, then she can use this like a scooter, too.

Meet Candy the Commode

 Disclamer ... We have tried our best to preserve Anna's dignity throughout this whole process.  Most, if not all, of Anna's peers do not know that she wears diapers at this time.  We hope that the adults reading this blog continue to be discreet with what you choose to share with your children.  Still, this is the specialty commode that resides in our bedroom; we always wanted a master bathroom :)  Most days Anna uses the commode successfully unless she is fatigued or we have non-therapy related guests.  She is so glad to finally have something appropriate she can use when she wants to; this piece of equipment was a long time coming!

  

Not Pictured:

 Willy the Wheelchair - Willy is a rental and will be replaced in late August by a sleeker version.  Willy's lights and ribbons will need to be unhooked before we return him.  He has been well-used and well-loved, but we will certainly enjoy a lighter weight, easier to handle version.

Matt the Mat - Not to be confused with Matt, the Dad.  Matt the Mat is a basic gym mat who is used for therapy and other play.  Ethan often walks over to it and says "Mat out!"

Ivy the IV Pole - Ivy holds Anna's feeding pump, to which she is hooked up several hours of the day for her formula and water.

Sleeping Boots and Butterfly Boots - Anna has not stood independently since February 3.  Her feet and ankles need lots of support and help.  She now has a couple of specially designed orthotic inserts and boots for sleeping instead of the big fluffy ones she had at the hospital.

And what about therapy for Mom and Dad?  Well, my garden is my therapy; it always has been, and this year is no different.

 

My garden is healthy for me on many levels.  For example, when I am sad or mad at God again (it still happens), it feels really, really good to go out to my garden and pull really, really hard on some pesky weeds.  Or haul a few heavy loads of leaf mulch to just the right place.  And then when I feel like I have no control over anything, I can go out to my garden and feel like I have just a smidgen of control over a small space of ground.

And then this time of year it always amazes me what God can do.  He can take something as small as a broccoli seed and in a few short months can turn it into something as huge as a 12-15 inch head of broccoli that our whole family thoroughly enjoys eating.  Or He starts with a tiny tomato seed and soon it becomes a monstrous plant laden with tomatoes that our kids are excited to snitch from the garden.

Plus, a lot of life lessons can be learned from a fruit and vegetable garden.  My children have been taught so many things, about plants and animals and life beyond, by being alongside me during the growing season.  I think I learned some of those same lessons from my parents, who probably learned them from their families.

So another big thank you goes out to those of you who have allowed me this summer to have my garden, by helping me directly and indirectly.  I think it would have been harder for me this year to not have a garden.  I told Matt in May that if we ended up with anything in the freezer this year, we'd be doing pretty well.  Thanks to some pretty awesome helpers (including Kate and Leah!), our freezers are almost full already, and we still have corn and tomatoes to come, plus a lot of fruit growing on the apple trees and grape vines.

What about Matt's therapy?  He's a late night project guy.  He always stays up later than the rest of us doing something ... projects, movies, etc.  So, at the beginning he did projects for Anna, first the basic survival stuff, then the swingset, and modifying Stanley.  Then he got a radio-controlled truck and spent a few evenings modifying it to his liking.  Now he's got some extra work from work to do :(  And he's got a cold.  But I'm trying to convince him to take a week off of work before school starts so we can have a stay-cation.  Hopefully he does ;)

So far so good for the chemo scheduled for this coming week.  But, plans can change, as we have learned.

Time for prayers

Thanksgiving
Please give thanks for the beautiful summer weather that has allowed us to spend time indoors and outdoors whenever we have wanted.
Please thank God for the continued support we are receiving from friends, family, medical personal, etc.
Please give thanks for the flexibility in everyone's schedules who are helping us, those who are paid to and those who are just helping out because they are kind.
Please thank God for the continued strength and stamina of the members of our family, in spite of the mild colds that have gone through.

Requests
Please pray that this next round of chemo goes more smoothly than the last, in terms of timing and fevers.
Please ask God to continue to give us patience and flexibility as we enter the next round.
Please continue to pray for all those who are working with and for our family.
Please continue to pray for strength, wisdom and stamina for all of us; we've still got a long way to go.
Please continue to pray that Anna's treatments are 100% effective.

Thanks, as always, for everything.