Day 12, 13, & 14: On the Mend

Sorry for the delay in getting anything new posted.  It was a whirlwind trip for me to go home and come back this weekend and I have been trying to catch up ever since.  I also apologize for all the crappy iphone pictures.  As a professional photographer, you would think that I would be using my 'big girl camera' to document this journey.  And I have, somewhat.  But trying to carry that on top of the wheelchair, walker, water bottle (for her), snacks, pool stuff for PT and anything else I happen to need just hasn't happened.  :)

After my session at home on Sunday, I popped Carter in the car and we drove back up to Baltimore.  I wasn't planning on bringing him back with me, but after 3 days of Ava literally crying at nighttime about how much she missed him, I felt like it would really be the boost she needed.  I wasn't sure how he would do on the drive, but he honestly surprised the heck out of me.  He didn't really complain at all - even though we took the scenic route (up US17 to US301 instead of taking I-95) and it took a full 5 hours.  Only once did he say, "I didn't know it would the *this* long to get to see Ava."  Ha!  He did feel sick a few times on the way - he tends to get car sick - and right as we got off on the exit into Baltimore, he threw up a bit in the bag I had given him a bit earlier.  Poor guy.  But he seemed fine after that.  I think it's the curved exits that really get his stomach turning.

I hadn't told Ava that I was bringing him, so it was a huge surprise.  She was SO excited and couldn't stop saying how it was the 'best surprise EVER!"

They played together for a while before bed and she went to sleep easily and happily that night!

On Monday, we had to 'check out' of the Hackerman-Patz house.  I didn't realize how long we would need to stay (apparently, there's not a hard-and-fast rule, so it varies) and they were totally full and couldn't extend our stay another couple nights.  We called the 'child life specialist' a few times on Thurs/Fri and again over the weekend to see if we could get a room at the Ronald McDonald House, but she never called us back.  I was a bit annoyed (okay, a LOT annoyed) that she couldn't be bothered to even return our phone calls. Even just to say sorry, we can't fit you in.  We called the RMH ourselves, but they said that without a referral from her, they couldn't even tell us if there was a room available.  Well, if she won't return our calls, how can we do that?!?  Ugh.  We ended up using the remaining points that Ryan has from his traveling a few years ago to stay at an Embassy Suites.  We reserved a wheelchair accessible room, but it's about 25 minutes from Sinai.  Ryan packed the car(s) while Ava and I were at PT in the morning and then he and Carter and his dad and Janet all came to see Ava in swim therapy.  She's still working on stairs and getting better every day.  She tends to 'cheat' on her counting - so someone kind of has to stay on top of her during therapy.  The therapists are at a 1:2 or 1:3 ratio, so it seems like they are stretched a little bit.  I don't know how they can really know if the kids are doing the appropriate number of exercises if they have more than one to monitor.  Sunni will tell Ava to do 30 knee bends, but I think she isn't really doing them all.

Ryan was working remotely from Sinai that day, so it was hard to balance him watching her, helping us, and then also working.  He happened to have a conference call he had to be on, so we got lunch and headed to the car.  It would be Ava's first car ride with the fixator and I wasn't sure how any of that was going to work. We struggled and struggled to find a car seat that would work with her fixator and there just simply isn't anything out there on the market.  Finally, one of the other moms whose daughter had this surgery a couple years ago said that what they did was buy a booster and cut the arms off.  The thought had never even crossed my mind before!  But it seemed like a simple enough task, so Ryan and his dad bought a hacksaw at the same time as they bought the car seat and went to fixing it on Sunday night.

Getting her loaded in the car felt really rushed on Monday afternoon, because Ryan had to hurry and get to his conference call and I was trying to fit everything in my car, while Carter was yapping away at me and I was trying to get Ava in her new seat comfortably.  She did awesome getting in the car and we propped her leg up and she was ready to go.  I was worried about the bumps, but she did GREAT. No pain!  That made me feel very good about the plan to come home this week.

We got to the hotel and I realized that I had no idea how to manage her, the wheelchair, etc. because I don't have a handicap placard for my car!!!  You have to get them in the state where your car is registered and we didn't get the paperwork signed from the doctor to present (in person, of course) to the DMV until this week.  So, I parked in the spot, got the wheelchair out, got Ava out of the car and into the chair, pushed her up to the sidewalk, got Carter out, had him stand with her, and then moved the car to a normal spot.  What a PITA!  The wheelchair accessible room is BARELY big enough, by the way. Actually, I'm finding it surprising how many places are handicap accessible, but BARELY.  Like, the bathroom door that is just wide enough for a wheelchair to wheel in, but not to turn around in.  I'm not sure how a person could wheel in, turn, close and lock the door, and get themselves onto a toilet.  :/   A whole education on accessibility is coming with this journey, too.

Anyway, we ended up getting dinner at the hotel in the restaurant (for a hefty price) because I couldn't stand the thought of getting into the car and driving somewhere, getting out of the car, into a restaurant, leaving there, putting the chair back in and out of the car, etc.  Too much work!  Ryan and Carter left around 7pm to head back home.  Luckily, traffic was sparse, so they got home a little after 11pm - and Carter slept most of the way home.

Ava and I slept in until 8am this morning and then it was time to get ready for PT.  We had breakfast downstairs (free breakfast for the WIN!).

I had to figure out how to get her and the stuff she needed to PT.  I ended up having to leave her sitting outside by the carport at the hotel while I drove the car up - the wrong way.  The signs were posted 'do not enter', but I did it anyway because her seat is on the driver's side and I needed it up against the curb.  LOL!  Heaving the wheelchair into the back of the SUV was crazy.  There is no way I will be able to do that every day. We're gonna have to figure something else out.

Anyway - we got to the hospital and I decided to valet the car just so I didn't have to deal with finding parking.  The nice thing was that the valet guy totally got the chair out of the back for me!  PT was fine and Ava worked on walking up and down stairs with a crutch.  I am still somewhat dubious of that, but they say it's the best way.

After PT, we went to have lunch with Cooper and his family.  His surgery was exactly 1 week after Ava's, so he is still in that 'I can't do it' phase.  But he's also a boy (and big and strong normally!) so I could see a little of the competitive edge when Ava started telling him the things she could do.  He perked up and acted like he wanted to do them too.  So she totally called him out and challenged him to a race.  We went to the atrium area and let them wheel themselves around a bit.  He wasn't sure he wanted to race, but quickly started having fun.  They raced, they got out of their chairs and walked, and I really think it was good for both of them!

We went back to the hotel and just relaxed most of the afternoon.  Ava insisted on walking from the car all the way in and to our room (on the 2nd floor way at the back of the hallway).

It was still a tearful mess for shower and pincare today - I'm really needing that to start to get better.  I can't deal with the anxiety and whining and freaking out over the littlest touch right now.  She's doing so well for everything else....it feels like this is the last big hurdle and then it's just learning to manage PT appointments, the car, the bathroom, and daily living. Okay, well, maybe not the *last* hurdle, but it feels like the biggest one right now.

It's already gotten so much better in a week, I'm definitely hopeful that by this time next week, we will have adjusted home and worked out the kinks.  Wishful thinking?  Perhaps!

The plan for tomorrow is 1 hour of PT and then 1 hour of pool therapy and then we are hitting the road and heading HOME!!! :)