Life as a Leach

I'm always so good at blogging during hosputalizations--not so good once we get home!!  I seem to hit the ground running and jump right back into things, which is stressful and taxing!   My mom and Dad did a ton of work at the house before we came home, which was amazing!  Dad even recaulked our bathroom and it looks great!  Have I said recently that my parents are awesome?! Matt and I had been discussing selling Abby's loft for a while because of her mobility, but we didn't want to upset her.  She knows her limits and decided she couldn't get up there safely, so that made the decision easy.  We picked out some pretty white furniture and I got to work today selling her old stuff!  I can't wait to redo her room. For right now, Abby is sleeping on the crib mattress on the floor.  Chloe thinks it's her bed!   On Friday evening, we finally celebrated Christmas with the 4 of us.  We even had them sit at the top of the stairs like always! ...

Today was Abby's last day of therapy!!  We will go down tomorrow to the spine team to say goodbye, but her therapies are officially done! This statue is my favorite place at Hopkins and we visited it tonight.  Thank you Lord for all of the progress my girl has made!!   Next stop, HOME!!!!!

  Miss Abby got lots of compliments on her poncho today!  It's a light sweater material, so it's soft and not too warm.  It's blue, although it does look gray in the picture.  It has a hood too, which she loves! The little lady wasn't overly cooperative in pt today, but she pulled it together for OT.  She was very happy that her roommate came back today after her surgery a few days ago.  She even made her a Welcome Back sign and a snowman ornament!   The doctors removed Abby's bandage today and CHOP said she didn't need anything on top of it from here on out.  The incision looks great!!  I'm really happy with how it is healing.  Everything about this surgery and recovery has been so much better than the last one.  I'm so glad we didn't give up and stop pushing.  It was worth it. I spent a lot of time today planning for her to go back to school and talking with the school staff there.  I'm going to go in and talk to her cla...

I went home with Caleb last night so I could work and attempt to get a few things ready for Abby.  I didn't get too far on that, but I was at least able to get a day's work in.  This is our summative testing season and it's very busy and stressful!   Matt stayed with Abby last night and today, which gave him a chance to learn some of her care and the therapies she will need.  I am determined for this not to be a one-woman show! 😳. Of course, coming home to see the condition of my house after I have been away for a month was a bit stressful, since I really didn't have time to work on any of it.  Matt assures me it will be up to my standards by Friday.  🤔 Abby got some one-on-one time with a therapy dog, which made her very happy!   She also walked down 2 flights of stairs and all the way to the Hopkins tunnel to take a picture of the dolphins, then back again and up to flights of stairs!  She is working so hard! Caleb seemed to have a nice birthd...

Sundays are free days, and we enjoyed some fun today!  We had lots of time in the therapy center, did some drawing and coloring, played Uno Attack, and celebrated her good friend's birthday!   This evening, my mom gave me the idea to set up a scavenger hunt for Abby.  I made up a list of things she could find around the hospital, and then she got to take pictures of the items with my phone.  It took a LOT of walking to find everything, with only 2 breaks and no whining!  She had so much fun and worked hard doing it!  Here are her items she found! A game you have never played, a chair, something purple, something used for therapy    The hand of a new person, a security dog, the outside, a dolphin, a fork, a power wheelchair, something related to winter, Santa, and birds. It was fun, and she earned the final 2 stars she needed to earn a movie.  Now she's watching the McKenna American Girl Movie! :) Tomorrow it's back to the grind!  But at ...

We are quite jealous of the snow we got back home, because the final amount here was pretty disappointing.  It definitely wasn't enough to play in!   My sister said their final total was about 8.  It looks like the kids had fun outside in it! It was a light therapy day with just an hour each of PT and OT.  She spent the rest of the time in the playroom enjoying the attention of the staff and playing with friends.  There's a nice group here now and it's been fun to have playmates. Tonight was a little rough. Abby has done very well dressing in OT, but is pretty reluctant to do it with me.  We had a bit of a showdown tonight and she ended up kicking me in the jaw.  I walked out for a few minutes, got myself some ice (all of the PT is strengthening her legs quite well!), and cane back in.  She eventually got it together and did it, but it was ugly.  Unfortunately, I'm the one she often takes things out on because I'm here with her.  I often...

So after figuring we had a final decision about the transport issues, I called CHOP ortho to reschedule her follow-up appointment and see if they had thoughts on how we would get up there.  The NP was confused as to why KKI wasn't letting Abby transport and was adamant that she could go to school.  After talking to the surgeon, he echoed her feelings and noted the importance of quality of life and normalcy for Abby.  These were the big issues for us as well. So...then we were kind of stuck making the decision ourselves because the doctors disagreed. After talking to her rehab doctor here today, she let me know that she fully trusted our surgeon and if he said it was okay for Abby to go to school, then it was okay.  KKI's stance is still that she can't, and we will still have to be transported by ambulance home.  Our time in the car will be limited to driving to and from school (1.5 miles!) and she will still be home the rest of the time, but getting her to schoo...

We had a family meeting on Tuesday to discuss Abby's plan of care and what life will look like after rehab.  It wasn't quite what we had expected. Abby will go home on next Friday, January 13th...by medical transport.  The halo is not transport safe, which means we should not drive her in a car.   If you're starting to put two and two together, it also means no American Heritage Girls, no going out to dinner, no unnecessary medical appointments...and no school. 😪. She will be home-bound for quite a while. We knew Abby would be devastated because she loves school, and it breaks my heart that her one piece of normalcy is being taken away.  We waited to tell Abby until Matt could be here and until Child Life could help us create a plan, which is why I haven't said anything on here. Child Life wrote a great little social story with photos of Abby to explain about her halo and what life will be like with it.  She didn't quite get it at first, so we had to just put i...

My girl rocked OT today!  She successfully put her leggings on and off by herself, put her shoes on, and buttoned AND unbuttoned her shirt (with tiny buttons!)!  I was so proud of her hard work!  She really worked hard. PT was great too.  I'm learning a lot from her therapist and am looking into some new therapy tools for her.  One of them is electric muscle stimulation, which she has responded to very well here.  We are hoping insurance will cover it.  You can read an overview here:   http://advanceaquaticpt.com/electric-stimulation/ . I'm also looking for some new items to add to our home therapy center, which will be getting much more use in the coming months!!   We are getting closer to discharge and hope to go home soon.  She is moving in the right direction!

You could tell the holiday was over today, because this place was bustling!  Abby is making great progress with her therapies and was finally cleared for thin liquids today.  Eating is still rough and I'm usually lucky if I can get a couple of ounces of yogurt or pudding in her.   It's been a long day and the hospital stay is starting to get to me, so I'm going to cut it short tonight.  Here's a picture with Abby's buddy Lucy Lu, who came to visit this evening.    

This was the last of our light holiday days of therapy.  Tomorrow we are back to the regular schedule!  I am hopeful that Abby will make some gains with eating and drinking so that she can progress to higher textures and thin liquids.  She did eat a whole container of applesauce for dinner, which is no small miracle!  She definitely prefers the crunchy foods, so I'm trying to give her as much as possible for snacks.  Just eat, girl! Matt and Caleb came for one last winter break visit.  Caleb heads back to school tomorrow and his visits won't be as frequent.  It will be hard on everyone, as we were spoiled by having him here so much!  They enjoyed doing mess-free glitter crafts that Abby gave Abby. They are super cute and easy to do!     Abby has made a good friend in the hospital.  This girl has a trach and vent due to paralysis from a freak infection.  She is sweet and funny, and very competitive!!  Her mom is really nice...

Woo hoo for a free day!!  Abby took full advantage of sleeping in and stayed in bed until 10:30!  It was so nice to just chill out! My mom found out we weren't going to have visitors today and they decided to come up!  They're so awesome--seriously willing to drop everything and do whatever they can to help.  Matt and I are so blessed to have them.   Nina brought her magical suitcase of toys again, filled with new types of entertainment!  She even managed to sneak in a great math game!  Then, she played beauty shop again with snowflake pins.  It turned out so pretty!     Abby said it looks like Elsa hair! We spent lots of time in the therapy center today playing games.  There's a super sweet 8 year old girl with a trach and vent that Abby loves to play with.  She's also super competitive, which is hysterical!   This evening, we did lots of reading practice and she watched the show that she earned by eating (she that was a ...

It was an easy therapy day here at rehab, with Abby only having an hour each of pt and OT.   Her PT tried out electrical stimulation on her leg muscles and Abby did great!  Her PT wasn't sure Abby would tolerate it, but she played a bowling game like nothing was different!  We will work to increase the stimulation throughout her sessions from here. In OT, Abby did a great job with her buttons and pulling on her pants!  We took a pair of jeans to pull on over her leggings (since it is an open gym), so it was extra challenging.  None of this is easy for her, but she is working hard. I'm still not having much luck in the eating department.  She eats a few ounces of applesauce or pudding, but that's about it. She did chow down on dry Cheerios tonight while we watched a movie, so that made me happy.  It's nice to see her at least enjoying some kind of food. Abby and I had lots of visitors today, starting with Nina and Paw Paw.  Nina brought her magical...

Guess Who Match Up, Candy Land, Chutes and Ladders, Memory, play dough, and string beads....all things Abby did during therapy today!  Her therapists are fantastic at using toys and games as distractions and motivators during therapy.  She works SO hard, but she gets to have fun while doing it!  Abby's attitude toward working was better today,which made things easier too!  I think she is starting to warm up to them. :).  Today during PT, Abby worked on walking, climbing stairs, standing up stall for long periods, reaching, standing on tiptoes, and keeping her balance on unstable surfaces.  In OT, she worked on her pincher grasp, buttoning and unbuttoning a shirt, and lots of core strength.   Feeding was still rough and Abby didn't do much more than eat a few Cheerios and take a few sips of water.  She was doing so well with the liquid until the end, when she had a coughing fit.  So she still can only do thin liquids with the therapist--who wo...

First thing's first:  take a look at this cuteness! :)   We met Abby's primary PT today and she is fantastic!  She totally gets Abby and plays all kinds of games while doing therapy.  I think they are going to get along great.   She had a very full day today with 2 sessions of PT, a session of OT, 2 sessions of feeding therapy, and a session with psych (part of being in the spinal cord injury program). She worked hard, for the most part, and earned lots of cartoons stars.  5 stars = 1 episode of a show.  She earned 13 today!  Cartoons are motivating for her, so this system works well. I took a picture of Abby's breakfast of sausage and eggs so that you could see the "yummy" purées she is being given.    Needless to say, she didn't eat a bite and I asked if we could work on improving that a bit to make it more appetizing. The therapist trialed a "finely chopped" meal and Abby did great with it.  It is just regular food in very tiny p...

Abby had her first day of therapy today, and it was a busy one!  She started out with 2 hours of pt, which was a lot of boring assessments  that had to get done.  It gets much more fun from here!  The pt did use kinesio tape on her to try to strengthen some muscles.  It also helps with scar sensitivity, so we are testing some things out!  OT also did a bunch of assessments, but they were slightly more fun than pt.  :).  I'm really impressed with the spinal cord injury program already.  I think it's exactly the right place for Abby!  It is extremely well known and she will be in the program for as long as she needs it!  They do all kinds of outpatient therapies, including aquatic therapy (when she is able to do that).  We will be continuing her therapy here after she goes home, because the level of therapy they can give here is just incomparable to anything she would get at home.  It's a drive, but it's worth it!  If y...

We made it to KKI today around 1:30.  Transport was good and Abby even fell asleep for most of it!   The afternoon was not nearly as chaotic as last time, so she handled it well.   Matt and Caleb brought our stuff, and then my parents came in the evening to visit!  They hadn't seen Abby since surgery, so she was happy to see them.  Mom even brought a button down shirt  that actually fits Abby! It's nice to have another option.    It's tight quarters around here and I'm pretty sandwiched in.  It's doing wonders for my claustrophobia! 😏😉 Therapy starts tomorrow, and then the real fun begins! 😃

We are going home tomorrow!!!  Things are done a little differently in rehab, so this date is pretty scheduled and definite.  We have known for a few days that it was the goal, but Abby had to prove she was ready.  She got all of her sign-offs today and her therapists have communicated with her school and home therapy center, so....WE ARE READY!!  Yippee!!!! We are thrilled to be able to head home and close this chapter of the novel entitled Rehab. :). But I will say--if ya gotta go to rehab, KKI is most certainly the place to go!!  We have had an awesome experience and I have been very impressed.  If you know me, you know I don't hand out undue praise!  This facility is truly amazing! Thank you for all of the prayers, well-wishes, cards, texts, gifts, and meals for the boys.  We love you all!

Abby and I enjoyed our aquarium trip with some KKI friends today.  The trip coordinator is fantastic and so much fun!  Calypso the sea turtle was putting on a show for us today, which is unusual because he usually likes to hide in the coral reef.    We also got to watch lots of divers swimming with the fish cleaning the coral.  I've never seen so many divers in there at once! Another favorite was the dolphin training show!  The Dolphins were showing off, so it was fun watching them do their tricks!  We got a selfie before the show started. After getting some pizza, we headed back "home" to the hospital.  After a little play time in the therapy center, Abby's irun4 runner Ally came to visit with her husband and little boy!  It was fun to play with them! Today was a great day!  Tomorrow is back to the grind, but I can see the light at the end of the tunnel!!

I went home (!!!) last night in order to be able to be a photographer for a 5k memorial race for a sweet little guy who was gone way too soon.  It was a fun, bittersweet morning, but I was happy that Caleb and I were able to head up to KKI to spend some time as an entire family.  Matt and Abby did just fine together last night and this morning, but we like being together!  We played air hockey and Minions Monopoly, then painted some butterfly magnets.  We all enjoyed dinner together before they left, so it was a really nice visit.  It's just that they are never long enough! We are all ready to be back together.  I believe it will be soon! For the time being, Abby and I will enjoy a trip to the aquarium tomorrow with some of our friends from KKI.  :)