Life as a Leach

Now that we are nearly ending our first month of school, I figured it was time for an update: Caleb is slowly transitioning to middle school.  The first few weeks were a big adjustment, because lockers, combinations, dressing out for PE, navigating hallways, and an open lunch time are all very new and different.  After a few before and after school practice sessions for his locker, he is feeling good about it.  (Good thing for him that his school is one of my schools, so I could help him out before and after!)  He has at least one friend in every class, which isn't always the case in middle school.  He is happy about that and really likes several of his teachers.  He is enjoying "Nest," as they call it, which is where students can eat lunch anytime during this one block of time and can also go to various clubs and activities around the school.  He is able to hang out with his cousin during Nest and has already joined the Aquarium Club and Best Buddies.  Best Buddie

My Facebook memories showed me a video of Abby from 5 years ago today.  It's a sweet little clip of her nearly 3 year old self yelling, "No more tubie!!!" and showing me the band-aid that covers where her gtube was.  I remember that day so well.  We went to a feeding clinic appointment hoping that we would get the okay to pull the tube, since she hadn't used it in over three months, but figuring we would need to come back for a separate appointment to do it.  I was ecstatic when the GI told us he could take it out right then!  This was momentous because it was the first day in Abby's little life that she was officially free of all medical devices.  I cried many happy tears that day. When that video was taken, we didn't know that she would be getting that tube surgically put back in just a little over a year later, thanks to a major jaw surgery that would make her completely tube dependent for many months.  We had no idea how far she would regress in eating

We met our new surgeon, Dr. Anari, at CHOP today and so many fears were alleviated!  He is so kind AND knowledgeable.  It was obvious that he had studied Abby’s file.  In fact, Dr. Anari told us that Dr. Campbell discussed all of his complex cases with him and they created their plans going forward together in May/June.  That Dr. Campbell...💕 I am feeling really good about our decision to go to Anari.  He wants Abby to enjoy being a kid this winter and wait until the spring for an expansion.  He really emphasized the quality of life and Abby was thrilled not to have surgery right now! We talked about the long-range plan (which is tentative at best when you have a kid like Abby!) and discussed possibilities for her kyphosis.  Kyphosis is a monster and is very difficult to treat, but she is stable for now. He seems to be a planner, which made my type A heart happy! We were also able to enjoy lunch with two other VEPTR families, which is always so great!  Talking with people who get it m

Happy First Day of School! Caleb is starting middle school today, and has mixed feelings about it!  While he is pretty certain he is going to get shoved in a locker, I have assured him that he will be just fine!  He is such a nice  kid and I encouraged him to just keep being kind to everyone and to not get sucked in by others who like to make fun of people.  I seriously can't believe that he is old enough to be in middle school!  The cliche is true:  time flies! Abby was pretty sad about her brother not being at the same school as her, and some tears were shed after he left this morning.  I told her she must have a really great big brother if she's that sad! Chloe loves getting in on the pictures! After Caleb left, I set to work on Abby's hair.  She requested curls this morning.  I told her that this may just be a special occasions hair style!  :) This moment is not lost on me. This time last year, Abby and I said goodbye to Caleb and I held her in