A Doctor Visit And A Trip Down Memory Lane

Will has always struggled with running, jumping and most things that require the use of his legs.  We have taken him to a couple of orthopedic doctors and the only thing they can tell us is that he is extremely flat footed.  Yes this is true, but I know of athletes who are flat footed who can run and do other physical things very well.  The summer before he started kindergarten we were able to get him some inserts made that he wears in his shoes.  This has helped out, but he's still not where I think he should be.  While he was having his pre-op physical for his eye surgery our doctor did an exam and she also noticed muscle weakness in his arms as well.  With all of these concerns we decided to look into it a little further - an appointment to Iowa City to a pediatric physical therapist was scheduled. This appointment was scheduled for yesterday (May 10).  The PT who examined Will was such a nice lady - she had such a sweet spirit - I instantly liked her (as I believe Will did too)!  She asked us a few questions and then did an exam on him.  She had him do different types of "exercises" and would evaluate him - she scored him for each thing he did.  When he was all done she came up with a final number and an age that he was comparable to.  His number was low.  The age she told us sometimes is irrelevant - because each kid is so different - it's hard to say that he is comparable to someone of ______ years old.  However, she did give us an age - to which it didn't surprise me.  However, she didn't really feel like there was much we could do.  She didn't think he was bad enough to require physical therapy so many days a week.  She also didn't feel like he had Muscular Dystrophy or anything like it - he just didn't show any usually signs of that.  So she gave us some papers with different exercises on it to do at home - ones we don't have to do everyday.  She also encouraged us to have him sign up for community/school sports to keep him active and that we would come back in a year.  However, she did give me her card and encouraged me to call her whenever I had questions, concerns or if anything changed.  So, I guess you could say I was slightly disappointed when we left.  You see, Will is starting to notice in school that he can't keep up with the other kids.  The days he has PE - he doesn't want to go to school.  I honestly don't know what more to do to help him.  I've been struggling with these thoughts - when do I accept the fact that this is the way Will is and encourage him in other areas where he may thrive or do I keep pursuing people to see if this "one thing" could help him and make him "normal" like all the other kids?  It's a constant battle I find myself in.  I don't know!  My heart just breaks for him and I so desperately want to help him the best that I can -I just don't know what more to do.  So, I guess for now we will keep having him wear his inserts, work on those exercises to strengthen his muscles and just encourage him the best we can in all that he does!


That was part of our day yesterday, however, since we would be going back to some familiar stomping ground I called up Mary - an amazing woman who did so much for our family when we were there with TJ.  She was going to be there and even offered to go up to the PICU with us.  I had told her some concerns I had with going back to visit the PICU.  First I was afraid of all the memories flooding back - would I be able to handle all of it - we spent a good time up there - and gained a second family!  However, my second concern was that we would go up there and nobody would know who we were - which I thought would be just as devastating.  I was so thankful she offered to go up with us.  I asked Jon if he thought he would remember how to get to Mary's office - to which he said no.  But once we parked the car it all came back to me.  We walked thru those big double doors and it was like we were stepping back into time.  Jon even made the comment on the way over to Iowa City how he wished we were coming for a follow-up appointment with our first born instead of the appointment we were having with #3.  I can hear it now - "Yep, everything still looks good - still no signs of the cancer coming back, we will see you again in 3 months!"  Oh how I wish that were true.  We met up with Mary and were greeted with big hugs!  We made the walk (and ride in the elevator) up to seventh floor.  The doors opened and I was smacked in the face with memories.  I remember that little waiting room just off the elevators - telling family members there was nothing more they could do for our TJ.  We walked down the halls passed the family lobby (and bathrooms/showers).  I remember sitting on that couch talking to my dear friend Julie - telling her that TJ had abnormalities on the brain - what does that mean?  I remember walking those halls to get supper, lunch, to take a shower,  to take TJ for another test.  We were hoping to see familiar faces but that didn't quite happen.  We got to see Jean - the social worker and Trish - one of the head nurses who was there the last few days we were there with TJ - in fact she helped discharge us.  It was good to see them.  It felt as if we were home again.  I know that might sound strange, but it was our home for awhile.  They were our family - they cared for us, loved us and were a part of our journey.  I'll never forget them or what they did for our family!  They will always have a special place in my heart.  I am glad we stopped by and I'm hoping to stop by again another day - hopefully when Nate, Laura, Barb, Erin and even Dr. "Smirnoff" are there.  It will be a big family reunion - one with laughter, tears, hugs and LOVE!  I didn't realize how much I missed that place - I know strange - huh.  It brings back good and not so good memories.  Times when my boy struggled, times we snuggled, times we cried and other times we laughed.  There are so many memories there - ones I wish I could forget and others I hope I never forget - ones I'll treasure and remember forever.