Week 1

This last week marked Anna's first week of her "CI Summer Camp".  Although it took me a few days to figure out exactly how this was going to work for our whole family, I think we're starting to hit our stride.  Hopefully we can continue to make it work for all of us for the coming two weeks.

Here's the details for Anna.  Each weekday she arrives at CI at 9 a.m. and works with different therapists until 1 p.m.  That's four hours a day of therapy for five days a week for three weeks.  Prior to arriving at CI, she has been reading in bed for an hour or so, then working on a math program (DreamBox) on her ipad for another 30 minutes or so.  (All her choice, seriously.  Isn't that awesome?)

On Mondays and Fridays, Anna works with the OT she has seen for the last year and a half.  On Tuesdays and Thursdays, she works with a new-to-her PT.  On Wednesdays, she works with a different OT.  She also gets an hour or so with two different speech therapists on Mondays and Tuesdays, plus a few different volunteers tag along and help out some of the days, too.

Anna's main goals for this summer program include increasing her strength, balance, and stamina, kind of what she's been working on for awhile now.  For those who are trained in these areas, the actual goals are much more specific.  To be honest, I don't know how it all breaks down at this point.

One thing we all decided to include for Anna was a "snack break".  So far she has eaten everything we have packed, a little more each day.  I was able to speak with the hospital dietician this week and through our conversation I realized that we have cut back on Anna's formula by about 100 mL each day (150 calories) and her weight has remained stable.  So it looks like Anna is starting to eat orally for some nutrition these days.  Hip, hip, hooray!

So far, so good for the rest of therapy, too.  Everyone has already agreed that Anna made a lot of progress with her balance and stamina since her most recent evaluation that took place at the beginning of May.  They also agree that Anna is a hard worker and one who is very "socially motivated" - meaning if you include people and fun, she works hard without realizing she is working hard.  She's the kind of kid who has the potential to make great gains during a therapy program like this.

The new PT was able to do a few quick checks early in the week and determine exactly which muscles in Anna's legs are weak and which are okay.  Then she has tailored some very specific exercises with a pulley system in the gym to isolate and strengthen those muscles.

Anna's OT is an expert at designing engaging activities that require Anna to work on several different goals at once.  Anna often groans when he lets her know just how many challenges are part of the activity.  But she likes them nonetheless.

In the afternoons, we learned that about 45 minutes of rest time works well when we all finally get home at 1:30 or so.  I have the kids listen to a couple of episodes of Adventures in Odyssey, a Christian radio program a friend recommended to us.  All three kids love it and wish they could listen to more episodes.

After resting, we have either headed out to the pool, or the girls want to play together.  Before the week started, we didn't quite know how all of the physical challenges were going to affect Anna.  We were prepared for an extremely tired and cranky kid.  She's actually doing much better than expected from our end.  By Thursday evening, her muscles were (understandably) getting fatigued, but she didn't get too cranky with us until Friday evening.

Now Kate.  I knew Kate would not be thrilled about spending four hours a day at CI, at least not when her activities were limited because of how many other kids are there during the summer months.  So Kate is taking a couple of summer school courses in McFarland.  She has one more week of them.  She thinks the classes are a lot of fun and she actually looks forward to going each day, so signing her up was a good choice on our part :)

But we still end up at CI after summer school.  So far we have alternated between having lunch at home and then going to get Anna, and bringing along a picnic to have on the way across town, or at CI, depending on weather.  Kate expressed her displeasure with me on Tuesday about always having to go to CI to get Anna, so we planned a few fun things, since Anna seemed to do just fine with or without us around.

On Wednesday, I took Ethan and Kate to the splash pad in Fitchburg, which is pretty close to therapy.

Ethan probably had more fun than Kate while we were there.  Go figure!

On Friday I had this great plan to take the two younger kids on a real bike ride while Anna was at therapy.  There's a great trail just across the road.  We packed up all of the necessary gear, got Anna settled, and headed out for our ride ... only to discover that it was raining.  Bummer.  So we read some Shel Silverstein poems in the foyer of CI waiting for the rain to let up.

After about 40 minutes, we found Anna and her OT to see if they were done making pancakes yet (that was Anna's Friday morning fun activity).

As soon as the pancakes were done, these two gobbled them up :)  Seriously.  Kate at six or seven ... as a snack.

By that point, the drizzle had mostly stopped, but we didn't have enough time for a real bike ride.  After a quick change of plans, we went to the Kids Crossing park in Fitchburg and Kate got to burn off some energy for awhile, until a group of older camp kids showed up and kind of took over the park.  Flexibility must be the key to our survival right now.

One more thing about Kate ... she has her first loose tooth!  It's getting pretty wiggly, but is still in.  Maybe it will be out by next week?

Now Ethan.  He just comes along wherever he has to.  He's not old enough yet to have much say in the matter.  So far, he seems okay with that.  He has a little more freedom while Anna has therapy at CI, simply because he's smaller and doesn't take up as much room as an active Kate does.

Now Mom.  I'm driving a lot of circles these few weeks, from our house to Fitchburg to our house to McFarland to Fitchburg to our house, or maybe in a slightly different order.  We're making it work for now, but I'm glad that we only signed up for three weeks.  I'd rather have our freedom back :)

Since Anna has started developing relationships with the other therapists and doesn't really need me around, Ethan and I are planning a few outings of our own this week ... the grocery store, story time, maybe our own bike ride?  We're learning to make the most of the snippets of time we have.

Time for Prayers

Thanksgiving
Please give thanks that Anna is able to participate in this summer therapy program.
Please thank God for the continuing advocacy of our client advocate within our insurance company; she's been a lifeline.
Please give thanks for the therapists working with Anna this summer; their perspective and hard work is greatly valued.
Please thank God for the wonderful summer school offerings in McFarland.
Please give thanks for summer produce!

Requests

Please pray that Anna stays healthy and safe in these coming weeks.
Please ask God to guide the decisions of her therapists to help Anna make the most progress that she can make.
Please pray that Kate and Ethan continue to remain flexible and understanding of their sister's needs.
Please continue to pray for wisdom, peace, patience, love, and joy for Matt and me.

Thanks!