Life as a Leach

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!

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 then ...you 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 ...

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!