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!  :)

Monday, June 20, 2016


As I was getting Abby dressed yesterday, I went through three shirts before I found one that fit her.   The others were all too small, and I asked her what caused all that growing?!  Her answer?

"*sigh* It's that darn Dr. Campbell!!"

Lol!  I guess it's time to pull out the next size!

Saturday, June 18, 2016

Quick Update

I know I've been neglecting my blog, so I wanted to do a quick update on Abby's progress.  She's been getting stronger every day, and even walked 20 minutes on the treadmill yesterday!  Cartoons are a wonderful thing. :)

We have noticed that she is still walking with her head tilted.  She does this after every surgery, but this is longer than usual.  Her OT is also a little concerned, and feels like she is meeting resistance when she manipulates it.  Abby has a lot of pain when straightening it while standing, so it may be that the rod is blocking it.  This could just be what we have from here on out. We are still working on it.  

Other than that, we have been enjoying the nice weather and the first few days of summer!  Purple lightning (the wheelchair) accompanies Abby out in crowds for safety.  

Abby will go to a 3 day camp at a local art center next week.  The director wasn't quite comfortable with Abby's needs, so Caleb and I will stay on the property and enjoy the scenery and some one on one time!

Caleb is excited to start his summer and has already spent lots of time with friends!  He is doing several camps too and is especially looking forward to Harry Potter camp!

More updates soon!!  

Monday, June 6, 2016

First Day of OT

Abby had her first day of rehab today, and she did pretty well.  There was a little miscommunication and a student intern came to work with her...not what I had in mind.  I don't usually go back with Abby, but I asked to this time.  She wanted Abby to do 10 consecutive minutes on the treadmill at a 1.0 incline, which is her baseline.  She did eventually do 10 minutes with multiple breaks, but the incline only lasted 3 minutes.  I was pretty happy with those results, but the intern wasn't.  Turns out, she didn't know a thing about Abby.  When our therapist did get out of her meeting, she took over the session and then I felt comfortable enough to go back in the waiting room like usual.  She apologized several times for the miscommunication, even though I never said anything about it.

It all went downhill after OT, and Abby spent the majority of the rest of the day yelling at me.  Yay.  I love that.  Deep breaths and a lot of tough love later, she eventually pulled it together....only for her brother to pick up right where she left off.  Double yay.  So now I'm decompressing with some Grey's Anatomy (my strange stress reducer) and a little white wine.  And tomorrow I will have sweet kids again!  Every day is a new day!

Friday, June 3, 2016

Getting there

Abby is getting better every day!  Pain control is still an issue, but I talked to orthopedics yesterday and they upped her meds.  She has been much better today though, and only had one dose in the morning all the way until bedtime!  

Abby got an adorable gift yesterday from Feel Better Friends!  This doll was made to look just like her, scars and all!

The doll has a gtube, 

A Trach scar, 

And even Veptr scars!

She came with several outfits, including an Elsa dress!

It is adorable and came at the perfect time!

Today, we ventured out for the first time to enjoy a free donut with Amy and Lucy on National Donut Day!  (And can I just say I am acutely aware of the distance of the handicapped parking from the door right now?!  But she made it!)

With a bit of convincing, Abby walked her doll in the stroller down to the bus stop. This was the longest distance she has gone, and she did sit in the stroller on the way back.  But she is making steady progress!

This evening we went to a book fair preview at the school.  It wasn't very crowded and we were able to see a few friends!  The kids brought their money and each bought a few books.  Abs motored in her wheelchair, which we will be using in public for a while (both for endurance and safety right now).

Abby is still having trouble getting into her bed (she has a loft with stairs), so she's sleeping on a crib mattress on the floor for now. I think she might make it into her bed tomorrow.  We'll see!

I've been busy catching up on laundry, bills, work, and making up for being a slacker mom to Caleb.  :)

Wednesday, June 1, 2016


We got home late last night, after quite a few stops to stretch, get meds, or go to the bathroom.  When we were finally all under the same roof, we did the bare minimum and got everyone to bed. 

Today has been a challenge--I'm trying to get Abby into a routine, and she just wants to lie on the couch all day.  Her back hurts--really hurts.  There was lots of whining and crying, but we got through it. She refused to sleep this afternoon, which meant she fell asleep right in the middle of dinner!   

Tomorrow will be better.  Every day gets a little better, right?