Life as a Leach

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...

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...

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...

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.  :)

Abby rocked pt today, shocking us all by walking all the way through the tunnel to Hopkins!  She did take some breaks, but she did 6 and 8 minutes consecutively with a hand! We were thrilled!  She ate super well today too, enjoying the Doritos that her feeding therapist brought her. :).  She started a tiny bit of school today too, which is at least a step in the right direction.  I don't think going back to school will be an issue though.  She does so well! She enjoyed some time this evening in the therapy center, playing Minions Monopoly, The Price is Right, painting a lion keychain for her backpack, and beating on some drums.  There's a new little girl who had a spinal fusion as well, so Abby and her have been playing.  Her family is very sweet.   On Sunday, we will be going on a field trip to the Aquarium!  She was really excited when they told her!

Abby took a little more convincing today when it came to therapy, but we managed to be productive.  She is very reluctant to let go of my hand when walking, so I often have to be conveniently carrying things so that my hands are full!  She caught on to it today and was some kind of bitter!!  Her walking is getting better though and she is definitely getting stronger. She had a rough morning because she REALLY didn't want to put her brace on this morning.  It's Abby vs the Brace every morning, and she put up a good fight today.  The brace (Momma) always wins in the end though!  Once it's on, she is okay.  It's getting the brace on that often resembles a wrestling match. Abby's Grammy came to visit today, and they had a great time playing!  Abby took her to the therapy center and they played Barbies, then we played Old Maid up in her room.  Grammy brought her a little bird that chirps, talks, and records what you say, and Abby loved it!   ...

Abby worked super hard in pt today, doing lots of walking unassisted while hunting for princesses and making words with magnet letters while standing.  She also did a great obstacle course to bring me some silly hats!  Her therapist is great and has really been creative with how she gets Abby to work. Because she worked so hard during PT, she got to spend some one-on-one time with a therapy dog named Lucy Lu!  She played catch with her, brushed her, gave her a check up, and cooked her some food.  It was so sweet and Lucy was really cute!   We have been working on eating with OT, which is a slow process, but she's getting there.  She ate 1/2 a cupcake today and some cooked carrots.  This evening, I enjoyed a delicious meal from a restaurant in Little Italy, thanks to guest relations.  They provide dinner for caregivers every Tuesday and it was a welcome change from the same old hospital food! (Or from the cup of peaches and applesauce off of Abby's...

Abby's first day went well.  We eased into it with a nice long break between therapies, so Abby had plenty of time to play and rest.  She was fairly cooperative, and I hung back to allow the therapists to establish their place as the authorities.  Otherwise, she would never leave my side!   We also enjoyed a nice visit with my cousin's wife Mary, who has been through more than her share of medical stuff with her son too.  It was really nice to chat and Abby enjoyed playing with her.  Later this evening, Caleb and Matt came to visit.  Abby always loves when they are here and hates when they leave.  It's never a long enough visit.  I miss my guys too.  It's not easy. I have to say that I am so impressed with the staff here.  Everyone we have encountered, from techs to nurses to therapists have been excellent.  Everyone is attentive, great with the kids, and focused on the work.  The therapy center is fantastic and Abby loves...

Today was a nice day of relaxation!  There are no therapies on Sundays, so we just hung out.  Abby slept until after 9 and then we headed to the therapy center (playroom) after breakfast.  They have some great Barbies that Abby loves playing with!  After her lunch, we strolled to Hopkins so I could get some food and we visited the gift shop.  Abby went back to the therapy center for more play time while I got a quick shower.  Any day I get a shower in the hospital is a good day!  The therapy center staff is excellent and they really love the kids, so I felt comfortable leaving her for a little while.  I've been really impressed with all of the staff here! Our roommate's family is so very sweet!  I have really enjoyed getting to know them.  They even offered to bring me food from The Children's House where they take turns staying!  They really love their son and are committed to helping him in any way they can.  I am so thankful...

Really, I do!  But I don't love when he tears up my daughter's brand new Calico Critters that she earned from Nina by working so hard at pt.  I don't love when he tries to steal her food. And I really don't love when his 100 pounds runs into her multiple times and I have to catch her once because she's about to fall over.  The mom didn't even tell me about the toys until later, and she wasn't at all apologetic.  In fact, she told me the dog chews toys all of the time!  Even when Abby was sobbing over the dog eating her toys, she didn't really seem to care.  She made it pretty clear she really didn't want us there. Since this became a safety issue with the dog running into her, I asked for Abby's room to be moved.  They have had multiple problems with this parent and completely understood.  After some thinking, they placed Abby with a little boy who has a very nice family and is very quiet.  He is pretty much bedridden and I haven't heard him ...

Today has been a whirlwind.  After a morning of being in limbo wondering if we were going to get to rehab (thanks, insurance!), we finally made it to Kennedy Krieger.  Upon entering her room, we were bombarded with doctors, nurses, and therapists asking us questions and assessing Abby.  At one point I was going between 3 staff people answering different questions!  We were all overwhelmed and Abby pretty much shut down.  I couldn't blame her because I was pretty close myself! We finally got a tour of the facility and were able to ask some questions, so that helped.  Then my parents and Caleb got here, so they enjoyed a little time with Abby (not nearly enough, since visiting hours ended at 8). Like every big change, there's a learning curve.  KKI is pretty strict and I have to have my bed made and be ready to go for the day by 7 each day!  I'm apparently supposed to give Abby a bath in the mornings, but that isn't going to happen. I am more of a n...

Can't sleep, so I might as well write!  :) Today was another busy day of dealing with insurance issues, doing lots of therapy, and making the best of being in the hospital.  Abby had two sessions of art therapy, which rank right up there as a close second to music therapy, so she was thrilled!  She also had a tough session of PT, where our therapist did lots of stretching and exercises to strengthen weak muscles.  Abby loves to exercise about as much as I do, so this session included lots of crying and fussing!   She is getting used to the brace, but if I make a comment like that, she makes it quite clear that she hates it.  :). She's allowed.  I would too!  At least she isn't fighting me anymore when I put it on her. When we are on our own, I try to incorporate therapy into our activities as much as possible.  She opened a present of bubbles today and was excited, so I got her in a tall kneel by the bed and had her blow bubbles.  We alt...