Monday, July 25, 2016

A Wonderful Vacation: Ripley's Attractions

We had a wonderful vacation in Gatlinburg, TN recently, where everything is a little slower, the people are a little kinder, and the tea is a little sweeter!  We took advantage of our Family Passport we were given from Make a Wish and did quite a few things we wouldn't normally do.  Here are a few highlights of our trip:

We visited all of the smaller Ripley's attractions (Ripley's Believe it or Not, Guiness Book of World Records, Mirror Maze, and Davey Crockett Mini Golf), which were all part of the passport. 

Of all of these attractions, Abby really enjoyed some of the weird Guinness stuff, and Caleb liked the mirror maze.  

I've got a ton of pictures to share, but my time is pretty I hope to share them all soon!

Thursday, July 14, 2016

Her Safe Place

Today, we visited an aquarium that had a large, multi-level climbing structure.  It was way too much for Abby, but we figured she could play at the base and be fine while Caleb explored.

That sweet boy stayed with her, encouraging her to try things, helping her when she needed it, and shielding her from rough kids.  

We watched happily from outside the structure as they played.  Then we started to notice something:  every time things got a little crazy and Abby started to get nervous, she would run to Caleb.  He would put a protective arm around her and take her to a calmer area.  He was her safe place!

It was such a sweet, beautiful exchange to watch.  They adore each other and I made sure Caleb knew how proud I was of the way he watched out for her.  He had time later to explore the higher structures, but he often checked in with Abby to make sure she had fun too. 

So sweet!

Thursday, July 7, 2016

Hurry Up and Wait

If you've been following me for a while, you have heard me talk about the "Hurry Up and Wait" method that hospitals love to use to torture families.  You know, the whole idea where the doctors make something seem so urgent that it needs to be taken care of right away...and wait.

Case in point:  Abby's back looks really different now.  There's a piece of the rod sticking up that is very visible under the skin.  She had a bad fall on Thursday, so I decided to contact CHOP to let them know that things weren't looking right and that she had increased pain.  After sending pictures of Abby's back on Tuesday, the nurse practitioner urged me to go get xrays right away.  By the time I talked to her, it was too late to go to Hopkins that day because xray would have been closed.  I took Abby there on Wednesday, got the disc, and contacted CHOP right away to let them know that the xrays were up in the system.

Meanwhile, yesterday evening I shared xray images with others on the VEPTR site, and many felt like it looked like a rod had dislodged.  So...we prepared ourselves for surgery very soon.

This morning, I hadn't heard anything back.  I texted at 10 and was told that she couldn't view the images on their system.  I figured out how to email them (a bit of the challenge using the xray viewing system), then heard nothing.  I texted again to check in, asking if we needed to change our vacation plans.  She wrote back saying that was crazy, that there was no way we should do that.  I asked what Dr. C. thought about the xrays and explained that it looked like a rod was answer....nothing.

Frustrating day, to say the least.

A positive is that Abby's pain is under control with OTC meds and she seems to be ok as long as she is sitting.  And, our vacation is still on!  So, we'll be thankful for those things and hope to find out something tomorrow!

Saturday, June 25, 2016

#19 Coming Up

Yesterday was quite a whirlwind!  We left the house at 6:30 am and got to CHOP around 10:45.  Abby got Xrays and then we saw the team.  Basically, what has happened is an unforeseen complication where the hump that was supposed to be corrected by the long rods has been pushed further up the neck. (Kind of like pushing down a bubble on wallpaper, only for it to pop up somewhere else).  We are playing whac-a-mole.  Yay.

Dr. Campbell is going to do something, but her "unique" anatomy makes it a challenge.  She got a ct scan today to give him more information.  He has an interdisciplinary conference next Friday and is going to discuss with the team to see if they have ideas.  In his words, "all of these kids are special and I've never seen the same problem twice."  So he has to figure out what he is going to add to fix the problem.  We know that there will be additional hardware added soon, but we will know more next week.  We are hoping that she can have the surgery and be recovered by the time school starts, but we will see.

This is an unforeseen complication and nobody is happy about it, but it needs to be fixed so Abby can walk upright again. 

Friday, June 24, 2016

You never know...

...what you will see at our local farmer's market!

This time, it was a walking cat and unicorn!

Thursday, June 23, 2016

Curve balls

We've had a few curve balls the last few days.  Abby had a pulmonary appointment on Wednesday and they did a Pulmonary Functioning Test.  Abby cooperated well and the test was valid...and there's been no lung growth.  She is still operating at 40% lung capacity.  :(  This was discouraging, to say the least.  We have always said that if we have to put Abby through all of this, we need to see improvement.  So it's frustrating.  

I talked with our trusted pulmonologist about what the future may look like if Abby's lungs don't start to grow.  As usual, we don't have anyone to compare Abby to.  So we don't really know.  She could need oxygen or bipap in the future when her lungs can no longer support her.  Her pulmonologist also said that she will be even more susceptible to germs, so we will have to be really careful.  Flu shots and frequent handwashing!!

The other issue is Abby's stance and head tilt, that hasn't gotten better with tons of therapy.  She stands with her knees very bent and walks that way too.  Her head tilts to the right and gets worse when she walks or as it gets later in the day.  If I get her to straighten her legs, she hunches over.  If I get her to stand up tall, her legs go weak. After discussing it with her PT, she suggested I contact orthopedics at CHOP to see what they think.  The nurse practitioner and I emailed back and forth a bit this week and I was told today that Dr. Campbell wants to see Abby tomorrow.  He is concerned about the rod placement and wants to get xrays and check her out.  

So...we're off to CHOP tomorrow, which will be exactly a month after surgery.  Hopefully, we will back on Saturday, but we know enough to pack for a few days.  None of us are thrilled, but we need to figure this out.  We would appreciate your prayers!

Wednesday, June 22, 2016

Finding Dory for the Win!

Have you joined the millions of others who have flocked to the theaters to see Finding Dory?  NO???  What are you waiting for???  GO!!!!

We enjoyed this gem of a movie a few days ago and I am in love.  It wasn't the story line, although it was cute.  It wasn't the music (there really wasn't any) or cinematography.  It was the message.  Finding Dory is all about celebrating differences and loving people for who they are.  Like I tell my kids all of the time, everyone has different strengths, and the movie focuses on Dory's.  

I also really, really loved the way Dory's parents were portrayed.  They recognized that their daughter had some challenges (short term memory loss) and gave her skills and strategies to cope.  They didn't get angry with her; they weren't in denial; they didn't try to "fix" her.  They simply figured out ways to help her be independent.  

But they also quietly worried about her, which I thought was significant.  You see, as special needs parents, we teach, we encourage, we cheer, we celebrate...but we also quietly worry about our kids' futures.  And no matter how many skills we give our children to foster independence, it's still scary to turn them out into the world.

In the end, no one ever lost hope and Dory is celebrated for who she is.  This movie is beautiful, and I really hope that it gets the recognition it deserves!  

If you've seen it, what do you think?

If you haven't seen it yet:  stay until the very end. Pixar loves to put little surprises at the end of its movies!  :)