Day 19 - SDR

Morgan slept well last night and got what we hope is her last dose of Gabapentin this morning.  We did an hour in the stander, grabbed breakfast and then left the hospital around 9:30 am and was so nice to spend the day at HOME! We brought the wheel chair home to transport her but we were told not to have her sitting for long periods other than her booster seat in the car.  We put a couple of yoga mats down and made a little play area for her to lay on her stomach, crawl and sit up on to play with all of her toys she is missing :).  We headed back up to the hospital after dinner and she didn't seem to mind until we walked into her hospital room and then she burst in tears that she had to be back here, felt so bad!  She is OK now after a fun bath and movie night.

Day 18 - SDR

I didn't update yesterday either because not too much to add.  She slept better last night and had a couple of therapy sessions this morning.  Kept busy today with Child Life activity and the rehab unit play room, switching time between prone cart, wheel chair and stander (which she is very comfortable in and can maneuver pretty well now).  We also found out we can get a "day pass" for tomorrow to leave the hospital during the day now that she can sit up long enough to be in her booster seat in the car!  Looking forward to some time at home tomorrow with her :)

Day 16 - SDR

Not too much to update on today. I spoke with her PT and she is doing well, working on crawling and sitting up both sides.  Right now her discharge date is set at April 19th.  We received her left orthotic (AFO) today (pink with a unicorn on it) which she will have temporarily and will get her right foot after cast is removed next Wednesday.  We were able to spend more time on the stander this evening and she isn't complaining about back pain.  We have a little evening walk tradition to the skyway to get some sunlight and enjoy chocolate ice cream cups :)

Day 15 - SDR

Good night again last night and lots going on today!  She got her cast off late this morning (this is traumatic with the saw they use to cut it off) and Rehab doctor assessed and thinks another week wouldn't hurt.  She was able to get her foot back to neutral/90 degrees but hoping to get a little bit more of a stretch.  We let her foot air out for a couple of hours because she had a sensitive spot they put a bit more padding around with the new (pink again) cast.
The other new thing Morgan did at PT today was the RobALT, robotic assisted locomotor training!  She was a bit scared of it at first and it took a while to get it all fitted but then quickly found it amusing flying like "Robot Tinkerbell".  She did this "walking" only for a couple of minutes today and she did say her legs were hurting but assume they just ramp up on time each session.   Unfortunately we will need to wait to do this again until next Wednesday when her cast is off again but will continue working on standing and spending time in her stander in the meantime.
From what I hear she is rockstar and moving along quickly!  Her usual nurse was back today and surprised to see the stander, commented most have at least another week before they introduce this :)

 

Day 14 - SDR

They brought Morgan's Gabapentin down to 2 times per day so she didn't receive in the evening last night (no Tylenol either) and she slept pretty good!  Will continue to wean this down.

She had a full day again today with OT/PT, etc and a bit of a meltdown going to the School session.  Her mean mom gave her teacher all of her math homework (which she struggles with) and clearly not as fun anymore! 

The highlight of today (besides receiving more amazing gifts in the mail) is she now has a stander! She needs to spend 1 hour, 3 times per day on this in addition to the wheelchair and prone cart going forward.  The nurse had to show us how to get her into this (careful not to pull her up by the shoulders or twist her back) and she actually took a couple of steps by herself to walk into without prompting.  Her and her brother have quite an entourage of Child Life volunteer friends who they spent the evening decorating crowns and eating treats with so when we took her back with the stander they helped her decorate the wheels with stick on jewels :) 

She stands up well in it and just getting the hang of wheeling it with her arms (her right side is a bit slower as expected since this is her CP side).

Day 13 - SDR

Advice to girls pre-SDR surgery, cut your hair short ;)
The struggle to brush out her hair right now is still a problem since she has minimal time sitting up the back is a matted mess every day and this usually starts our morning off with tears!  She may have dreadlocks when we leave here...
It probably didn't help she had a bit of a rough night last night- we decided not to give her Tylenol before bed to see how she did and ended up calling a nurse in after midnight to give to her.  She was extremely restless, whining and crying in her sleep something hurt.  We got her to wake up and take it and was much better the rest of the night.
She had a long day of therapy  - psychology, 2 PT & OT sessions, 2 School sessions and therapeutic recreation.  I didn't see first hand but am told she did get in the stander today at PT so looking forward to seeing this! Somehow with all of this we got her time in on the wheelchair and prone cart also.
We are going to try weaning the Gabapentin down (she is getting 3 times per day right now) and will see how she does with this, hopefully all goes well and she doesn't start complaining of tingling or pain in her feet/legs.  Also trying tonight without Tylenol again so we'll see how it goes!

Day 12 - SDR

Uneventful day.  No therapy on Sundays and the hospital is pretty quiet and boring.  We got her 3, 1/2 hour wheelchair and 3, 1 hour prone cart rides in although she would much rather sit up on the wheel chair than go on the prone cart - bribery with phone time worked.  We had visitors most of the afternoon/evening and lunch down in the cafeteria to get out of the room.  She also pointed to the couch in the room and said "I have never sat there" so was pretty excited to sit up at the couch and do a craft.