Week 2

Anna has made it through two weeks of her intensive therapy program.  This past week was a little tougher; she's started to feel it.

After Wednesday's session, we decided to act upon a conversation with Anna's endocrinologist and give Anna a small dose of hydrocortisone prior to therapy each day.  She made it a week and a half without this, but it was evident to us that by mid-week her body just couldn't make enough cortisol to keep up with the demands.  Stupid steroids.  I know they were very necessary at the time, but this long, drawn out process of coming off of them is annoying.

Anna's PT was out of town last week so on Tuesday and Thursday she worked with a couple of new-to-her therapists both days (I think her count is up to 11 therapists and/or volunteers she has worked with during the last two weeks alone).  Anna is the kind of kid who likes to show off her best skills for someone new, so two days of working extra hard all four hours took their toll.  We have had more tears, outbursts, and crabbiness from our oldest child this week.

However, Anna is still making progress.  One of the standard benchmark tests for kids like Anna involves a 6 minute walk with their assistive device (wheelchair, walker, crutches, etc.).  When Anna had her evaluation in late April prior to her summer program, she could walk 150 ft. in 6 minutes with her walker.  Her written goal for the summer was to be able to walk 300 ft. in 6 minutes with her walker.  On Anna's first day of summer therapy, she walked over 400 ft.  Her PT told us that an expected distance for a kid Anna's age using a walker like hers would be 600 ft.  On Friday, Anna walked 720 ft. during her 6 minute test.  Not too shabby, right?

For Anna's lunch each day at CI, we usually pack along leftovers from the previous night's dinner.  Anna's favorite foods right now are casseroles and vegetables.  I don't remember what dinner was on Thursday, but we didn't have anything good to pack for her.  Since CI is a peanut free zone, I asked Anna if she'd like a butter and jelly sandwich, to which she replied, "Sure!"  My guess is that she ate about a quarter of a sandwich that meal, and she LIKED it.  Again, good progress.

Part of our August this year is going to be facilitating the communication between CI and school to insure that Anna has appropriate and safe times to use her walker each day at school, and to make sure she has an appropriate opportunity to eat her lunch.  Gone are the days when sitting in her wheelchair all day and getting all of her food and water through her g-tube is acceptable.  That's pretty cool.

But we are continuing to learn about things that are "wrong" with Anna, too.  First, she has osteopenia (not osteoporosis, but still a weakening of the bone structure) in her spine and hips, for a combination of reasons (radiation, chemotherapy, lack of weight bearing, different medications, etc.)  The bad thing about this is that some of her bones look more like a 50 year old's bones might look than a 9 year old's.  The good thing about this is that our bones continue to strengthen and calcify until we are about 30 years old, so we have hope for her bones in the long run, especially now that we know.

Second, Anna is scheduled to have a few more tests in the coming weeks to prove her body's inability to grow.  Once those are done, we will be looking at adding in a growth hormone to Anna's daily medications.

This past week didn't go spectacularly for the other two kids.  Through our experiences, I have learned that it doesn't work for Kate to join us in the therapy rooms anymore.  She's just too big, too active, and moves/thinks too fast.  The therapy is about Anna, and having Kate along takes the focus off of what Anna should be doing.  So now Kate needs to stay in the waiting room when she comes with us to drop Anna off and pick her up.  This realization was probably hardest on me; the kids seemed to take it in stride.

Ethan's still a good size and ability level for tagging along, though.  That's good, because he's going to have to do it again this school year :)

Outside of therapy stuff, the week had its ups and downs.  This is traditionally the time of the summer when the garden stuff picks up.  But this year it hasn't.  Some of our crops and harvests have gone decently, but this will not be a record-setting year for any of them.  The broccoli hybrid I buy changed (but I didn't realize it) and so all of the heads ripened early and were thus much smaller.  My cucumber plants were attacked by cucumber beetles early in the season so their growth was very stunted.  The plants have bounced back, but we're only getting enough cucumbers now to eat, not enough to preserve any.  My tomato plants got a fungus and are slowly dying, in spite of my efforts to stop the disease.  The plants themselves have set lots of fruit and are still trying to grow upwards, but it will be a competition to see when the yellowing leaves catch up to the healthy ones.  Both sets of my corn have been blown over in storms; I'm not sure the second crop will recover.  Back to back severe thunderstorms this week broke off many of the stalks.

We had a long stretch of dry weather during the early part of July, only to be hammered with rain and storms this past week.  Thursday night we got a couple of inches of rain and some of it ended up in the basement.  Saturday was the next rainy, stormy day.  Another couple of inches of rain later and the pool is almost filled to the top.

But we are getting to eat lots of tasty fresh vegetables and my garden work has not be overwhelming in the last few weeks.  And, as I was reminded when Kate and I went to check on her class's garden plot at the community garden on Sunday, we can have a big, productive garden in our yard.  Lots of people don't have the space, soil, or sun for it.  We do.  For that, I am thankful.

Time for prayers

Thanksgiving
Please give thanks that Anna is still healthy and positive about her therapy program.
Please thank God for our ability to grow food in our yard.
Please give thanks for each therapist and volunteer who has worked with Anna this summer.
Please thank God for our family's relationship with the staff at CI.
Please give thanks for Kate and Ethan's ability to be flexible and roll with our life.

Requests
Please ask God to continue to bless Anna's time at therapy this week.  Ask that she stay safe, healthy, and positive.
Please pray for our continued wisdom as we make decisions about our children's schooling in the coming years.
Please ask God to continue to bless our harvest.
Please pray for our continued strength, peace, and patience as we go about our daily lives.

Thanks!