Life as a Leach

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 hopin...

...what you will see at our local farmer's market! This time, it was a walking cat and unicorn!

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...

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...

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!

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 st...

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 ...

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 pr...

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?