Working on Walking, Waiting on the Walker

So, the last time I wrote about Ruslan was three weeks ago.   He’s made a huge amount of progress since then.  I thought I would write about how he is doing physically since so many of these posts have been about his emotional development.  Of course, the problems are that it all comes in teeny tiny baby steps and that he is SO behind, even the rare huge jumps only serve to illustrate how far we have to go.  Another factor is that each step is an enormous amount of work. 

The best way to illustrate this is to tell the story of the (still non-existent) walker.   I have to back up a little and explain that we did, finally, get the boys added to our insurance policy.  I got that resolved Friday, February 18, after we had Ruslan home for two months.  I won’t bore you with the details, but I will say it took massive coordination (between us, my husband’s employer, the company they outsource all their PR through, and the actual insurance company), plus several hours on the phone, three faxes, one heated exchange, and about half a bottle of Extra Strength Advil (500 mg tablets.  I love those things).

In between the calling, faxing and my shriek filled home life, I was working on getting a walker for Ruslan.  I started off in late November calling a PT (physical therapist), hoping to start therapy right away.  However, ALL the children’s doctors/therapists here work out of the Kluge Children’s Rehabilitation Center (KCRC), which is part of a huge healthcare network managed by the University of Virginia.  Everything happens according to a set script and there shall be no variation from the screenplay.  Therefore, no one would touch Ruslan until I had gotten him into our “primary care physician” and gotten a prescription for physical therapy.  It took three weeks to get an appointment with our physician.  After that, it was another week until I got in to see the physical therapist.  She did an evaluation and we looked at walkers that same day.  She decided that Ruslan needed one that trails behind him and after trying out several models, she said she would “write something up and get the process started.”   I had no idea what this meant, but I was stupid enough to expect a walker in about two weeks. 

Well, the process goes like this:  The PT writes up a recommendation and sends it to a KCRC office.  They hold onto the paper for a few weeks and then they send it to my primary care physician.  He approves the recommendation and sends it back to KCRC.  They hold onto my paper for several more weeks and then send it to a local dealer who sells medical supplies.  The dealer sends this recommendation to my insurance company, who will hold onto my paper for at least a month and then notify the dealer how much of the cost of the walker is they will cover.  The dealer calls me asking if we can make up the difference.  Then and only then, the walker is actually ordered. 

NO ONE told me about this process.  I’ve just pieced it together over the last ELEVEN weeks as I’ve been tracking that piece of paper every step of the way.  Where is it now?  At the insurance company.  They plan to keep it until the last day in February (I’m not making this up), when they will notify the dealer about how much of the cost they will cover.  

In an effort to speed things up, I asked the medical supplier if I could just pay for our walker with cash.  Sadly, the walker the PT ordered costs well over $2,000.   

My next idea was to take my son and my credit card to a different medical supply store and ask if I could just buy a pediatric walker outright.  The man behind the counter was very nice.  We looked at a catalog.  We measured my child.  I chose a model and placed the order.  It is a plain vanilla walker, pull behind, just like the one we tried out at KCRC.  It was $225, with an extra $50 for a hip stabilizer (a little belt to hold his hips in place).   It still isn’t in yet.  I’ve been calling the man behind the counter every week now, but he is never there and neither is the walker.  His assistant always answers the phone and faithfully takes my message, but so far, no one has called back and no one has my walker.  And, so we wait.

In the meantime, I’m happy to report, I did start Ruslan with a physical therapist a few weeks ago.  The therapists at KCRC are $250 per hour, 20 miles away, and not in my insurance companies network.  But, luckily, there is a physical therapists office about three miles from my house, in our network and right near Ruslan’s school.   I really like his therapist.  He’s not a pediatric therapist, so I’m getting a little flack from the purists, but so far he has been great about giving us stuff to do at home and keeping our visits to a minimum. 

Over Christmas, I started stretching Ruslan every morning between 8 and 8:30am.  He is really tight and it takes about 15 minutes just to get him relaxed enough to really stretch him out.  We start off with his legs.  First butterfly sitting for a few minutes, then we put his legs out in front of him and he touches his toes (just achieved contact this week).  Then we put  his legs in a “V” as wide as he will go.  He starts off at about a 35 degree angle, but after a few minutes, I can usually get his legs apart to about 90 degrees.  Then I stretch his arms.  He has a really hard time getting them above shoulder height.  We also have him reach for his breakfast, crossing his midline and grabbing cheerios or banana pieces etc. over his head.   Then we stretch him over a ball on his back and tummy and do three exercises.

The first is to lay him on his back with his feet on the ball.  He raises up his hips and I have the other kids crawl under the “bridge” that he makes by holding himself up.  We do this until he is tired.  Then we have him lay on top of the ball on his tummy and he stretches out, holding his legs up and his arms straight ahead like superman.  He gets a good snack during this one as well, since we clued in that he holds himself up the best when he is reaching for stuff.  So, we put the rest of his breakfast on a bench and let him reach for things one by one. 

The last exercise is “sit to stand.”  For this, he sits on a bench and stands up (with support) for about five seconds and then goes back down.  The first few times we did this, he was totally relying on his upper body strength to pull himself up.  In fact, he actually said, “tired” once and when I asked him, “where tired” he pointed to his shoulders and arms! (UGH!).   After that, I changed how I was assisting him.  I was letting him hold my hands, but now I have him “kiss his knees” and hold his hands forward (as much as possible) and I hold his hips.  We started off doing this about five times, but now he can do it about fifteen times before he is really tired. 

A few days ago, he stood on his own for about three seconds.  He was just thrilled.  All the family came in and counted to three over and over again while he demonstrated his standing ability.  Now that he is stronger, the therapist recommended that we try to get him to do as much as possible standing up.  I have a few tall-ish tables and he has been great about playing, coloring and eating standing up.  I’m not sure how evenly he distributes his weight, so I think one leg is still taking the brunt of the work, but his legs are so emaciated, I guess we can’t go wrong at this point. 

So, that is where we are.  After about three months here, he can now stand on his own for three seconds.  Considering where he was when he came here, with NO muscle tone below his chest and not using his legs at all, it's actually a huge amount of progress.  He can also reach over his head much more smoothly and with MUCH more control than he could when we first got him.  His arms are starting to look more natural (either that, or I'm getting used to them), and he's holding his torso up better (he used to hunch way over whenever he was sitting).  I keep noticing little things like that.  They're not huge, like the standing for three seconds, but they still are progress and steps that he needs to complete in order to achieve his maximum potential.  Who knew there were so many steps involved?