A few weeks ago Joseph and I made another trip to the Philadelphia Shriners Hospital. I’m happy to say that the flight was uneventful…that’s always a good thing!
This trip was extra fun because Aunt Becky (my sister) met us at the airport and stayed with us all week! We had fun showing her around our regular Philadelphia places –“our” Ronald McDonald House and Shriners Hospital. Usually when we are by ourselves we don’t venture very far, but with another adult along we got adventuresome.
Before we even went to Philadelphia we knew it was going to be a fun trip for several reasons. One reason came in the form of a phone call. I received a call from a media person from Shriners asking if we would be willing to be interviewed for a video they’re making! So, on top of the normal “nerves” of making our connections, finding out if we had a place to stay once we got there, getting a taxi, the actual doctor appointments, etc, we were a little nervous about being interviewed! It went great and it was actually a blessing to be able to share how far Joseph has come and how the staff there have been the reason for Joseph’s physical “transformation”.
For the next several days Joseph was videoed (along with lots of other kids who were there) with his doctor, and playing in the playroom. If I can brag a little, all week I heard the staff telling the camera crew what a funny, friendly kid Joseph is. That is so encouraging, mostly coming from people who have seen Joseph (and me) at our most stressed out times!
Our main reason for going to Philadelphia this time was to get Joseph’s new back braces and so he could get several days of intense therapy. On Monday we spent the entire day at the hospital in doctor appointments, getting x-rays, being interviewed and having his back braces adjusted. We got back to the Ronald McDonald House around 7:00. We were able to ask questions and get some answers, too.
One thing we found out was that Joseph’s back braces DO correct his scoliosis…when he is wearing them. That means that his curve is not “stuck” as severely as we were worried it was. It also means that he most likely won’t have to have back surgery as soon as we once thought. (He will still need surgery eventually, but hopefully in years not months from now.)
His nighttime brace corrects his curvature by 30 degrees! It’s not super comfortable, but he has gotten used to it and doesn’t complain. (He wears a special padded tank top underneath to keep his skin safe from rubbing.)
His daytime brace corrects his curvature by 20 degrees.
This brace was a bear to get fitted properly!!! The people in O&P were so, so patient with us! From Monday through Thursday we went back to them multiple times each day and asked if they could cut, “blow out”, adjust different parts of his brace to make it endurable. By Thursday evening it was finally comfortable enough for him to not be hurting. I am so thankful that we just kept going back and asking for them to tweak it, because now we’re not worrying about sores or hurt spots.
He also went to therapy everyday and worked on walking with a walker. :) Believe me, walking with your legs bent at a right angle is NOT easy…I’ve tried several times. The therapist encouraged us a lot by reminding us that he will one day have straight legs and then it will be much easier. (The casting he had done helped his legs go from 120 degree and 160 degree contractures to about 85 and 80 degrees*. Getting fixators will help to finish straightening his legs. We don’t know when he will start that, but probably not for another year or so.)
Patient Aunt Becky made the time at the hospital more exciting and fun. Plus, because she was with us we were more brave and took a taxi downtown one afternoon/evening. (The taxi part was a little intense, mostly trying to break down his wheelchair and get it in the trunk and Joseph in the taxi all within the time span of one red light. –It worked and was worth it!)
We were able to incorporate some school in by studying about the Liberty Bell the next few days after we went downtown. When you see Joseph ask him to give you a few statistics.
Joseph’s favorite part of our adventure downtown was going to this little garden. Maybe it was his favorite because it was quiet and calm. :) (We all know HE’s not calm…but he does like those things around him to be calm!)
Friday afternoon we went to the Philadelphia Zoo. It was a “flying trip” but was super fun. We’d like to try to go back another time when we have more time. BUT, word to the wise, just because a taxi will TAKE you somewhere doesn’t necessarily mean that they will PICK YOU BACK UP! At about 5:00 when the zoo was ready to close it got cloudy and stormy. We ended up standing outside of the closed zoo calling every taxi service that I had numbers for in a downpour/thunderstorm. Eventually we DID get one and got back to the RMH in time to dry out some of our stuff before heading to the airport EARLY the next morning.
We appreciate those who care about Joseph and are following along with his life! Thanks so much for remembering to pray for him.
Here’s our latest fundraiser for Vienna’s adoption! (I plan to post more about it later, but this is getting long!) Please buy one! It’s for a good cause and it has a good message! Contact me or anyone in my family if you’d like one!!
Youth Small-Adult X-Large $20.00 ($5.00 shipping if not local)
Adult XXL and up $23.00 ($5.00 shipping if not local)
Design #1 will come in color options: Gray, Navy and Black
Design #2 will come in color options: Royal Blue, Pink and Black
(Both options will have white font)