Back to Normal

We got through the first week of back to normal and actually went smoother than I thought!  I expected Morgan would have a hard time adjusting to school again but no morning tears and she was excited to see her friends and teachers.  Just a couple of snafus with forgetting/losing wheelchair pieces which caused a couple extra trips back to school but got through the week!  She has daily PT sessions at Gillette's in Burnsville and the times are not consistent so we are juggling schedules which will get harder with activities/sports starting this week also.  The early morning sessions were definitely better/more productive than the late sessions because she was pretty tired and her AFOs hurt after wearing them at school all day.  We got her an adaptive trike at home also so have done that a couple of times (as weather permitted) and she is doing pretty well with it. Her PT sessions have been mostly focused on building that leg strength still with the trike also, treadmill walking with a harness, squatting, balance exercises, etc.  Orthotist saw her on Friday morning and plans to hinge both AFOs also which she is ready for and should help with stairs and floor mobility.  Progress feels a bit slower this week but imagine it will feel that way until she is walking independently.

Day 39 - SDR - HOME!!

We are home!! We packed up the remainder of her room and had one morning session with OT & PT. They talked through restrictions at home (no walking or passive trunk rotation) and showed me stretches to do daily with her. We were discharged before lunch, said our goodbyes and were out :)
Feels great to be at home just in time for spring weather and Easter and we are so grateful for the support and prayers from our family and friends to get through this long hospital stay!  Morgan is a rockstar and her therapists had great feedback on her strength and imagination of course :)
We are catching up on life and trying to get some relaxing time in with family this weekend and back to school and daily PT sessions starting Monday for Morgan. Will continue to post less frequent updates on her progress getting out of the wheelchair and back to baseline.

Day 37 - SDR

Last day of inpatient therapy!  Morgan had a full day today which included pool therapy and I watched a little bit of her last PT session - she was standing unassisted while she served some therapists play doh pizza and walking with just a little guidance on her hips, mostly on her own and also climbing stairs alternating legs.  Her balance has really improved over the past few days also.  They had her rental wheel chair adjusted and we cleaned out/packed up most of her room tonight so ready to finish tomorrow morning and get out of here after her morning PT/OT appointment!  This is Morgan sitting in front of the wall of cards (pic does not do it justice) we had to take down tonight - thank you for all of the love!

Day 36 - SDR

Today Morgan received her new "take home" wheel chair rental so tested that out and do need to have some adjustments made tomorrow.  She also had her last day of RobALT - they only have this in St Paul and she will have her outpatient PT in Burnsville.  I didn't post yesterday but she also loves the OT sessions with the therapy dogs and this picture is of her playing hair salon with Sara (a very patient cute white fluffy dog).  She is doing great and taking several steps with just light hand holding, her right foot is turning out a bit which is something we will watch but likely just due to weakness in her hip still and apparently common post SDR.
They asked me yesterday if they could use her room for a local news story on a girl that cleans in this unit so agreed to this and didn't really expect to be in here but right after lunch they came in without much notice started filming so Morgan made the news tonight :). I have commented in past posts how they do a cute job cleaning her room and rearranging her stuffed animals in funny places and this is a great program they have for special needs ex-patients, here is the story:

https://kstp.com/news/program-gillette-childrens-speciality-healthcare-st-paul-project-search/5320852/

Day 34 - SDR

I spoke with Morgan's PT this afternoon and they have now removed the sitting/wheel chair time restriction so she is able to sit up as much as she needs/wants now.  We still need to try to keep 3 hrs of prone time in per day if possible and not best for her to be sitting all day!  They have also updated to allow assisted transfers (from dependent), so Morgan should be getting in and out of her chair, out of bed, etc herself with assistance as needed.  Quite honestly we have been doing this for about a week anyway and she is doing well with it  :). She has stood unassisted for ~ 40 seconds and has taken a few steps on her own. Her rental wheelchair is ordered which should be here before we are discharged on Friday and we are looking into getting her a adaptive trike for exercise to have at home.  

Tonight's activity was cooking making, the kids were very excited for this!

Day 33 - SDR

Headed into our last week inpatient hopefully!  Morgan had OT and PT yesterday morning but spent Sat afternoon and Sunday at home (just back to the hospital Sat night for an hour in the stander & to sleep).  She is doing great and its difficult to keep her prone or laying down at home, she wants to be sitting up playing all day.  We also ventured out to get a much needed haircut on Saturday afternoon.  She can stand well holding on to things and move around furniture and now trying to balance standing on her own also which she can do for several seconds (see pic).  When we got back this evening we spent more time in the stander and some time in the trike - we need to do more of this to build her leg strength!  She can ride the trike a little on her own but does need help steering and pushing that right leg mostly.

Day 31 - SDR

We've spent a lot of time in hospitals over the last several years and while there have been times we have seen and heard some very sad and unthinkable situations from other families I think for the most part we are inspired by these kids and I hope Morgan and her brother grow up realizing the same.  The rehab unit is a new experience, most children are there long term and its a bit more social with a play room, social activities every evening they encourage you to attend, and you tend to see the same families in the unit and at therapy every day.  Some kids with existing conditions & surgeries like Morgan, others with scary accidents and random illnesses they are recovering from.
There is one family we tend to spend a lot of time with, a 3 year old boy (and his brother who is 5), who was a healthy "normal" toddler and suddenly started complaining of leg pain and quickly went into full paralysis, was rushed to the hospital and later diagnosed with Guillain-Barre, was intubated and received plasma exchange.  Apparently it was scary for days but he pulled through and has been in the hospital since February recovering and regaining his strength.  He HATED his stander and cried about having to be in it, so Morgan has been a bit of a role model for him, we meet up in the play room in their standers and they usually blend up some interesting food shakes for us in the play kitchen.  The other night she said her feet hurt after a full day in her new AFO's but just after we got back to the room to let her take a break, he showed up ready to play in his stander and cried when she was getting in the wheelchair so she agreed to get back in the stander for a while longer to help him out and play :).  His mom was also telling me he wouldn't stand or try walking in therapy which was getting frustrating.  Last night we were at activity and he suddenly asked his mom for her hand so he could stand up and just stood up and started walking, he walked across the room and gave Morgan a high five.  What an amazing thing to seem him walk again for the first time and his mom a bit shocked and teared up.
Morgan continues to make great progress and gets stronger every day.  She is able to stand on her own holding onto something and took a few steps unassisted at therapy today.  She has had OT in the room each morning since Wednesday helping her dress and she can get down from the bed onto the mat and dress with little assistance (except her socks due to her clammy feet!).  We have her daily outpatient PT schedule set through June and still on track and getting things organized to prepare for discharge next Friday!  Tonight was music therapy night and the kids had a blast trying out new instruments.

Day 28 - SDR

Pool therapy days are Tuesday's & Thursday's so Morgan was very happy to see it on her schedule today!  Other than that, more of the same and her school sessions have been cancelled the last two days due to substitute teacher no show (Morgan excited about this, Mom not so much). We have a standing approval now for "day passes" as long as I sign a form so took another little afternoon walk outside again.  We walked over to the State Capital building (Morgan thought "it looks like the White House") which is only about 3 blocks from here and had a short self guided tour of the inside, I figured a social studies lesson wouldn't hurt in absence of school today and after an uncooperative math attempt :)
I don't think I have shared this positioning worksheet yet either - something we have to fill out daily to track all of her time in the different apparatuses and honestly like a second full time job trying to fit it all in!  I feel a sense of achievement on days we actually get this done!

Day 27 - SDR

Morgan had a full day of therapy today, RobALT, etc and seemed pretty tired by the end of her sessions!  I attended a family conference will all of the therapists, providers and doctors on the team here as well as school district on the phone.  They summarized her progress and confirmed discharged date set for next Friday, April 19th.  OT will start sending someone in Wednesday morning to get her doing some self care & dressing on her own and PT to continue working on walking and transitioning.  She will have a wheelchair at discharge (likely for several weeks) and potentially a walker but should hopefully be walking and standing independently for short periods which they do controlled at her therapy sessions.  The Psychologist was also helpful in sharing how she explains and gets feedback from Morgan using pretend play with dolls on what they are doing in therapy, why she has to exercise her arms & core even though her surgery was for her legs, and now will focus on explaining transition back home and school.  Outpatient Physical therapy begins the 22nd will be 5 days per week for 4 weeks and then down to 2-3 days per week and we will start this at Gillette's in Burnsville. Her incision site still has a couple of steri-strips hanging on but doctors/nurses have commented on how well it looks and have been putting fresh Aloe, Vitamin E and Coconut oil on it to help heal and lesson the scarring.  The highlight of her day was getting outside for a short walk on this nice Spring day (getting our fresh air in before the snow later this week!), I pushed her in the wheel chair a few blocks to pick up some snacks at Lunds.  They also had a fun evening activity cutting out and taping the insides/anatomy & decorating :)

Day 26 - SDR

Morgan had an hour of PT and 1/2 hr of OT on Saturday and then got a day pass to spend the rest of the afternoon at home! We brought her back up to the hospital to spend the night on Saturday night and then were able to go home again all day today.  We try to keep her prone as much as possible at home and not sitting too much per instructions but its a bit more difficult without the prone cart & stander.  When we got back this evening I had her spend some time in the stander without her knee immobilizers (make her work a little more) and she did fine, occupied with the playroom toys.  She has a busy day tomorrow so had her go to bed early!

Day 24 - SDR

Morgan was exhausted by the end of the day today!  Lots of work at therapy - she spent 1/2 hour in the RobALT walking which is actually quite difficult to keep her entertained during, note the bubbles in the video.  I also watched the last half of her last PT session and she was working on standing up from sitting position and taking steps while holding onto and pushing a large exercise ball.  Great to see her taking steps and not on her toe!  Her right leg is quite weak as expected so continue to work on strengthening exercises.  We will also start doing the stander without her knee immobilizers on to make her work a little harder.  Great news we get day passes for both Sat after therapy and Sunday so looking forward to weekend time at home!

Day 23 - SDR

Morgan had a busy day today!  This morning Gillette's had an event by Reese's with the NCAA All-Star basketball team, Miss Minnesota, mascots, etc. all here visiting the kids so she had fun participating in those activities and getting autographs and pictures before therapy!  She was SO excited for her first pool therapy and already doing great standing and walking in the water with little assistance.  The therapy pool is very cool, the floor lowers/raises and as you can see in the pic there are cameras to watch her walking patterns.  She still wants to toe walk on that right foot (which apparently is very common) and they are retraining her brain on this. She got her new right foot AFO fitted and finished today also, again pink with a unicorn on the back.  They increased her afternoon PT session to an hour also so she had 2 hours of PT today and one hour of OT and spent some time riding around in the adaptive trike again.  We will get this tomorrow night to use in the evenings and weekends- add another apparatus to the daily routine! I spoke to her therapist about the goals for the next couple of weeks and next step is to get her walking with a reverse walker like she used to have and continue to work on unassisted transitioning to get her self reliant.  She is very pleased with how well Morgan is doing and how quickly she is building her strength back.  The bath is still broken so had to make do with the shower after pool therapy and she actually handled this pretty well.  We spent the evening playing BINGO with child life and she is very tired. 

Day 22 - SDR

The cast is off :) Very happy to move forward with the RobALT now in PT and starting to work on walking again!  I believe it was 21 days she had to wait for her incision to heal and can now begin pool therapy and take baths which she is very excited about and we see pool therapy on the schedule for tomorrow!  The big bath tub they have was apparently broken yesterday and hoping they have it fixed by tomorrow, would be good to have her soak her foot after the cast removal and for the steri-strips which are barely hanging on to her incision.  She continues to do 3 hrs in the stander per day, 1 1/2 hrs in the wheelchair and 3 hrs in the prone cart daily plus riding the trike during therapy.  Here is some additional information on the RobALT:
https://www.gillettechildrens.org/conditions-care/robotic-assisted-locomotor-training-lokomat

Day 20 - SDR

I think we are past the halfway point so on the down hill stretch!  It is getting a little bit easier every day as she can do more on her own and much more comfortable.  She is med free now and slept great last night.  I believe they upped her wheel chair time to 1/2 hr (was 15 mins) three times per day.  She also got to ride the trike today and seemed to enjoy and actually pedaled on her own which is not something she has really mastered pre-surgery and helps to have these adaptive trikes.  She is also very happy there is no school in the schedules this week because St Paul district is also on spring break :)
We have been in the playroom more now on her stander & wheel chair and she loves to play with the kitchen and castle but definitely getting frustrated not being able to walk and do things she has in the past, we just encourage her to keep working hard at PT!