One "surprise" diagnosis for Sonnet was severe scoliosis. The spine doctor at our local children's hospital recommended a spinal fusion surgery. Since she is only seven that didn't sound like such a great option to me. So I did some research and got an appointment for her at Shriners in Philadelphia where they have a "tethering" procedure.
She and I headed off on an adventure this week. I'm not one who enjoys traveling, but I'd walk through fire for my girl. We set out with wheelchair and bags in tow, and some amount of nervousness too.
One thing that made it a little easier was we found that somehow we had TSA pre clearance status. I
have no idea how or why, but I gladly marched on through and didn't have
to unpack anything or take off shoes! Yay! They DID have to swipe
Sonnet's hands and wheelchair to be sure it was safe. She thought it was super weird, but
cooperated.
There is a really steep area that one has to go up in the Cincinnati airport, and once I had gotten our breakfast it
was a slow go with food, two backpacks, a rolling suitcase, Sonnet's
little diaper bag, etc. A nice American Airlines employee saw my
struggle and helped me out. He even gave Sonnet a pair of wings (pin)
as a souvenir.
Our plane
was a little late taking off due to a thunderstorm in Cincinnati, but no
big deal. The plane was a little bitty one, but we must have had an
excellent pilot cause it was very smooth. Sonnet played with a baby
sensory game that Ethan had loaded on a tablet for her, drank apple
juice, and colored in a notebook. She did awesome!
The first big
surprise was when we got to Philadelphia I had to carry Sonnet down
stairs to get off the plane. Thankfully she didn't scratch and throw
off my glasses like she does at times.... An airline employee helped
us out of the airport and to the UBER car waiting area. Their employees
were very nice.
It was my first time riding UBER, and I was
impressed (well except that it never gave me the option of ordering a
car with a carseat like it said it would.) Our driver was careful and
also super nice. Since it was too early to check into the hotel we walked for about an hour in downtown Philly.
The hotel got us into a room about 11:30. I
appreciated the early check in. Everyone here
was so helpful and pleasant. Could be they just couldn't resist the
smile that Sonnet had been beaming their way.
Since we had to be at the airport before most people should even be awake I had thought Sonnet would take a nap. Wrong. So out we went to explore again.
 |
| Liberty Bell |
Shhhhhhhh! Don't tell my other kids that Sonnet and I went on a tour of
the historical area in a horse drawn carriage!! We saw so many really
interesting and OLD buildings and learned that Benjamin Franklin
basically invented and began most everything in their city. LOL! Pretty cool to
be where Washington handed the power over to Adams - and King George
thought he wouldn't do it!
Benjamin Franklin's grave.
Of course we HAD to try a Philly Cheesesteak for dinner. Since Sonnet can't eat meat she enjoyed the peppers and mushrooms along with some of the bun.
Our appointment was without incident the next morning. We loved, loved, loved the doctor,
in fact Sonnet kept hugging him like he was her best friend (and he
didn't even have a beard!) She turned on the charm big time and
everyone was smitten with her, but I digress.
A follow up x-ray showed the curve to be not quite as dramatic as the x-ray taken in February.
I'm told it may vary by how much she wiggles during the procedure and at
some point we will likely need to get a combination x-ray series with her standing and sitti
ng
both. BUT he didn't feel that she was in any imminent danger of having
her heart or lungs compromised. He said we have way too little
information on how this scoliosis is going to progress (or not) and
suggested that she is waaaaay too young to do ANY kind of surgery at this point. She is to return every six months indefinitely so it can be tracked over
time.
When and if the
surgery becomes needed it
won't be the tethering that we had hoped for. After watching her movement he said she wasn't a good candidate for it. The way she army creeps around would likely break
the nylon tethers. BUT he suggested a magnetic rod instead of a
fusion. It allows more movement than a fusion, and instead of an every six
month surgery to allow for growth, it would only be every two years. The rods are
extended by the use of a very strong magnet instead of by surgery each time! I loved that he took his time with her and really answered every single
question I asked. THAT ALONE will get me to travel several hundred
miles to see him again.
.
I was amazed that Shriners runs ON TIME! We were done within about an hour of her appointment time including being
seen by a resident, several nurses, the doctor and getting the x-ray. I had allowed LOTS of time for the appointment , so our plane home wasn't for several more hours. After eating lunch in the cafeteria we hung out in the awesome playroom at Shriners for awhile.
The people in Philadelphia were all so gracious, patient, and kind to us,
really without exception. City of Brotherly Love? Perhaps. I like
Philly!
