Life as a Leach

Abby was in a good mood for the majority of the day! We played with some new friends in the play room, went to the library and read books, visited the atrium, and perished the gift shop.  She also spent a good amount of time doing math and reading practice on this program called IXL.  There's an app for my iPad, so it makes doing the skills very easy.  She enjoys it and earns virtual keychains for mastered skills.  A little extra practice never hurt anyone! :) The plan is for Abby to go home on Monday after the wound vac is removed! She has had no additional respiratory concerns, so that shouldn't hold us up this time.   We are still actively trying to see our surgeons to discuss the long-term plan for Abby's chest wall, but it's proving to be more difficult than it really should be. We will be staying in Philly until we can see them! We simply have to have a plan for her. Her lungs can't take not putting the VEPTR back in.  Please pray that this meeting wi...

Abby had a good day today!  She has been feeling pretty good as long as she gets Tylenol and Motrin regularly.  The "donor site" (her bottom) is sore, but she is in otherwise good spirits. Today, she made a shark with the craft group and had music therapy.  As usual, she giggled over Mr. Pawel (her first crush!) and loved playing the ukulele. Yesterday, Abby and Matt were able to meet the Minions and go to a special hospital showing of Despicable Me 3!  Abby was thrilled to see it!! I loved seeing this sight as I walked down the hall!  The Minions were waving to kids on the oncology floor who were unable to come downstairs to meet them.  If you look closely, they are lining the windows.  😍 While they were at the movie, I was trained on Abby's new machines by our homecare company.  These will both fit our needs much better.   This is me taking our new vent/bipap for a walk.  Lol! For the weekend, we are just hanging out and trying to mak...

The skin graft is in!  He said the wound looks a whole lot better than it did 2 weeks ago and he thinks waiting was a good decision.  Now we are praying for the graft to take!  She will have a wound vac for 5 days and then we will see how it looks.  We should know by then if it is going to take. So, step 1 is done!  We are waiting to see her.

Abby just went back.  Our surgeon is hopeful because he things the site looks good....so we are going with lucky #30!  🙏🏻 We aren't sure if she will go to the picu or the floor.  They have a bed reserved on both. 

We made it to our hotel at around 5 after having to call 4 different hotels before finding one that had a room. This is most definitely one of the hardest parts about not getting into the Ronald McDonald House.  They don't make it a simple process, that's for sure. But we are here, and the hotel is really nice and in an area with lots of restaurants.  We ate at a really good burger place (says the vegetarian!) with all natural, hormone-free foods and a great meat-free selection.   Our hotel is right across from Reading Terminal Market.  Abby doesn't have to be at the hospital until 11 tomorrow, so we plan to explore the market for a little while.  It's kind of fun to be in an area of Philly we haven't really visited before. As always, Abby loves to see all of the #purpleforabby pictures!  Tag me in it or post it to my wall so I can show her.  Thanks for all of your support!  We are seriously hoping that surgery #30 will be the LAST one for a while...

Abby loves anything related to baby animals.  She's a sucker for the YouTube videos showing baby animals, likes looking at pictures, and is beside herself when she sees baby animals in person!! An opportunity came up for us to meet some brand new lab puppies in person.  After thinking a little, we figured out a way for Abby to see them while still maintaining her safety.  We drove to the person's house and brought a few of the puppies out to the car to see Abby!  She was beside herself all day until it was time. As you can see, she was ecstatic when she met them! There are silver, chocolate, and yellow labs.  Caleb loved the chocolate, but Abby and I adored the silver named Luna! They are the sweetest little things and Abby is already asking when we can go see them again!

We went into this pulmonology appointment today so nervous and anxious about what would be discussed.  As you all know, Abby's respiratory status has really declined with no indication that it is going to improve.  It's more obvious to us every day that the rib-to-rib VEPTR is the key to Abby's lung volumes improving, but that won't be able to be done for quite some time because her body has to heal from the trauma of the last year.  We discussed that today with our pulmonologist and she is hoping that she can provide support to Abby as a bridge until the rib-to-rib VEPTR is able to be put back in--whenever that may be. The question is, how much support is Abby going to need?  She's needing additional bipap during the day now and seems to decline after every surgery...and she has another one next week.  What will she be like after that?  The bottom line is that we aren't sure how much more her little body can take, or how long she can continue with such l...