7!

Tomorrow Morgan turns 7!
As a "preemie mom" I am not sure if her birthday will ever get easier, it tends to bring back a flood of painful memories from the day she was born.  Facebook reminded me that just a few days before she was born I traveled home from Brazil and I am so thankful I was back home in the US but I think like most preemie moms we live with heavy guilt and question every activity and preventative measure I could have taken on the days leading up to her unexpected birth.  I remember not feeling very well the evening before (sort of an unexplainable yucky feeling, tired and had a back ache) and in hindsight I was probably having contractions and didn't know it.  I remember everything about the day like it was yesterday- calling the nurse line, rushing to labor & delivery, the expression on the doctor's face when my water broke and her saying "I am so sorry", the long ambulance ride to Mpls and I can still feel the discomfort of not being able to move without her heart rate dropping and my chapped lips from the oxygen mask. There were a lot of nurses, doctors and drugs, but I can clearly picture the scrubs being thrown at my husband and the rush to my emergency C section and I remember the slight sense of relief I felt when the neonatologist said something like "look at me, look at nurses calmly working on your daughter through the glass window, she is alive and breathing and we are going to take great care of her".  This was the beginning Morgan's long and challenging journey but a miraculous one that we thank God for every day!
On a lighter note, Morgan is PUMPED for her 7th Birthday! She is ready for the treats, gifts and attention that comes along with it, the steak and mashed potato dinner she picked, and very excited for her mermaid pool party this weekend with friends & cousins :)
I measure her every year and mark it on a growth stick in her room so we did that this evening and quite honestly was surprised she only grew an inch this year at best.  Growth has been an ongoing "watch" item and we might have to take up again with her doctor and eventually see an endocrinologist like they have suggested.  She is tiny (only 37 pounds with shoes & orthotics on) but up until now has been growing at a steady rate (~ 2 1/2 inches) annually even though in the lowest percentile so we haven't been overly concerned.  We have the week off of therapy due to vacations & staff changes so they suggested some exercises and an app called "Cosmic Kids" which I think is yoga like for her we need to try out!  One huge accomplishment in the last week or so is her ability to walk up the front steps without assistance or railing!  We got her school supply shopping done and she is excited to find out who her 1st grade teacher will be tomorrow also!  

     

Orthopedic follow up

One of the most common and severe problems for kids with Cerebral Palsy is hip dislocation/displacement so Morgan has been followed by Orthopedic doctor at Gillette over the years and today we had a follow up appointment with him post surgery.  She had a quick X ray of her hips (standing) and we spoke to the doctor for a while and discussed concerns with her right foot still dragging/turning out and some options (like casting again) we can discuss more with her rehab doctor in upcoming months.
Great news her hip X ray looks good, he showed and explained all of the things he looks for and pointed to everything looking fine and no signs of displacement!  He explained again the CP type & the Gross Motor function classification system (GMFCS) severity ratings (1-5) and how the risk of displacement increases with rating.  Morgan is level 2 and kids with level 1-2 typically have a 10-15% risk of displacement.  Usually they recommend annual X ray of hips to monitor but he felt since all looks good we can come back in 2 years :)
Other than that, its been more of the same - she continues with PT sessions about 2 mornings per week- one regular, one pool.  It does feel like she made very good progress for a few months and then sort of plateaued but will continue to work hard!  We went for a bike ride on her adaptive bike to the park tonight (admittedly haven't used as much as we should) and have really been focusing on making her do things independently like getting in/out of her booster seat, walking up stairs, dressing, helping with chores, etc.  Of course still hanging on to the last few weeks of summer, enjoying boating and she is even taking a couple of golf lessons with her brother.

She made it!

Kindergarten ✅
Today was Kindergarten graduation and was great to see Morgan so happy & participating in Spanish songs - she was very excited!  Its been a LONG year and quite honestly wasn't sure we were going to make it here if you would have asked me late last fall!  She had some rough days but we pushed through it and proud of Morgan who continues to work hard and making progress!  We definitely have some work & catch up to do this summer on schoolwork (especially since she wants to be a doctor when she grows up :)) but will make sure to mix in some fun also!
This is also our last week (2 more sessions) of PT at Gillette's in Burnsville and starting next week will have 2 early morning sessions in Savage (closer to home) and 1 early morning pool therapy.  Morgan is excited to get back to the pool!  She is walking really well and hardly using the wheelchair- we are ready to get rid of that thing after school is out!  Still dragging the right leg a bit but tomorrow we are having her right orthotic hinged at her therapy session and still working on strengthening that leg to correct.  Next week we also have her PM & R Doctor follow up at Gillette's (3 months post surgery) so will update after that!  I do remember discussions before the surgery telling us to expect it taking ~6 months to get back to baseline and I feel like she is pretty much there so very happy with her progress!

5 X per week

Last week of having PT sessions five days per week!  Next week we move to 2-3 sessions per week which will be nice to free up schedules a little bit :) Her daily PT schedule at Gillette's is a bit all over the place and has been a crazy 4 weeks juggling schedules and a group effort to get her there, in/out of school, and caring for her brother (and getting him to sports) by myself, Dad, Grandma, nanny, etc. Tomorrow she is getting her orthotics hinged (was supposed to happen today but this is how things go sometimes..) and she is walking pretty well.  She now has clearance to walk short distances outside of therapy and we are relying much less on the wheelchair- only for long distances! We are still getting out on nice days for trike riding and still seems very happy and doing better at school - only a little over 3 weeks left of Kindergarten!   As you can see on the video her right foot is flat now (hooray) and she is getting good heal strike but her foot is pointing out which is what they are working on still.

Moving along

Morgan is progressing well but feels a little slower now...

She is doing great overall, seems happier and back in routines and working hard at PT every day.  She is walking several steps across the room and her right leg is getting stronger every day.  We do still have the wheelchair and her walking is supposed to be restricted to therapy only.  Still trying to build strength up to improve the out turning of her toe on her right and with strength they think this will resolve itself.  Yesterday she made it a few blocks all the way to the park on her new adaptive trike with only a little help up the hill.  She hasn't really been able to pedal in the past so this is a great accomplishment!

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!

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.

Day 11 - SDR

Morgan had OT & PT sessions this morning and continues to work hard!  She is sitting up better in the wheel chair/more comfortable and she is working on wheeling it herself (see movie and ignore her goofy brother crawling behind her :)).  We did step outside with her for a few minutes today to get some fresh air and sunlight, bummer the outdoor park area at the hospital isn't open yet.  She also joined the afternoon Child Life activity - decorated a pot and planted some seeds for a grassy plant and they painted.  On our evening prone cart stroll she told me "I don't want to go home, its fun here"...haha, we'll see how much longer that lasts!

Day 10 - SDR

Mostly uneventful day today.  Morgan had a couple OT & PT sessions and therapeutic rehab.  They continue to work with her on core and trunk strength (rolling over, playing games on her tummy and side) and trying to push herself to sit up.  We got a few walks around the hospital in her wheel chair and prone cart.  I think she is glad to be sitting up (assisted) and we did some writing and craft in the room but also making her back a little sore!

Day 9 - SDR

Morgan spent last night and today with Grandma today who tagged along to some of her PT & therapy sessions- all is going well (some fun with music therapy & PT together) and her PT told me this evening she is doing great and getting stronger every day- rolling over & trying to sit up & build her core muscles! As most of you know she never crawled (butt scoot only) as a baby and hated laying on her tummy so her core muscles have always been weak!  She got her wheelchair today and did great sitting up in that- we have to chart her time on these and the goal is to get in 60 mins of prone cart time 3 times a day and 15 mins of wheel chair time 3 times a day (eventually adding a stander and trike to this).  The environmental services lady who cleans her room likes to leave her stuffed animals and dolls in fun/funny places around the room which Morgan gets a kick out of, amazing the little things hospital staff does to entertain kids! Tonight her brother pushed her around in her wheel chair for 15 min and then we switched over to the prone cart to watch the dog show in the lobby.   Tonight was also bath night again, the nurse made her a small bath tub for her doll to take a bath with her and thankful I happened to keep the blue waterproof cast cover from her last serial casting :)

Day 8 - SDR

Today's therapy sessions were pretty light - just 1/2 hr of school, and 2 OT & 2 PT sessions.  She had a pretty good day and we got the head of the bed up to 45 degrees, nearly sitting up without any complaints of pain.  They put her cast on her foot this afternoon - will remove it in a week to see if that is long enough.  We did have a pretty rough evening meltdown (understatement) - not sure if she is just tired of the hospital or just frustrated she couldn't sit up to play BINGO :(
Tonight she was excited for Grandma to sleepover with her!

Day 7 - SDR

Morgan slept much better last night with some Tylenol before bed! Another day of several therapy sessions and a session for school.  I didn't attend these but she seems to enjoy going and from what I am told she had a tea party in OT and colored at school :) - hopefully they covered more that she is not telling me!

I spoke with her rehab doctor today and I believe they will serial cast her right foot again tomorrow (we tried this for 4 weeks several months ago which is in prior posts), this time for only a week then take off and check if 1 more week needed.  This will help stretch her muscles which are still very tight/short due to several years of spasticity! She was also molded for new orthotics this evening and excited for the new pink unicorn print she picked out. We had some more visitor fun this evening and more amazing gifts - this girl is well loved and spoiled! We got another hour on the prone cart which her little cousin thought was so fun to push her around on and we joined child life for a cute wash cloth bunny project and ice cream cake! Raising the head of the bed above 30 degrees still hurts but trying to push her a bit to get up to get to 45 degrees tomorrow is the goal.  She ended the evening with a bath and have a cool contraption for this - they put her on this blue flat plastic stretcher like thing and lower into a huge bath to wash her - took a picture of her after all wrapped in heated towels. This is also what the incision looks like on her back - it is several inches long covered with steri strips (no stitches to remove). 

Day 6 - SDR

I am not quite sure if Morgan slept more than a few hours last night :(

She kept waking up whimpering, asking to be moved and for things and seemed very uncomfortable.  I finally got her to agree to more medicine at about 4am and the nurse gave her Tylenol and Valium (I didn't realize until after) and then she slept soundly until a little after 7am when a doctor came in.  I think she must have been really sore from sitting up most of the day, moving around and a few hours on the prone cart on Sunday and she hadn't taken anything for pain all day.  She was a little cranky and had a rough morning (toileting, dressing and hair situation is not fun at the moment) but got better after she got out of the room! 

Today was her first day of therapy and it went well- mostly meeting everyone and talking about goals and interests.  PT & OT worked on her rolling over by herself- from the prone cart to the raised mat, stretched her legs and feet quite a bit and just keeping her up on her forearms playing on her stomach to strengthen her core.  For the first time could really see the results of the surgery and the reduced tone/spasticity in her right leg/foot- she can now easily flex it to neutral/90 degrees which she was never able to do before!  The Physical therapist did mention potentially serial casting her right leg again for a week or so to stretch the muscles even further which we didn't have much luck with before SDR but would have more lasting impact now (and easy time to do it while she is here and not walking etc yet). Dr Sinner (her rehab Dr) is the person rounding this week so chatted with her about this afternoon also and she is going to discuss and revert back tomorrow. I think her favorite was music therapy - he was really fun and had creative ways to get her reaching to play instruments and she seemed to love it :)

When we got back to the room about 3pm and she said "whew, I am exhausted"..

I let her rest for a bit before dinner then we got another 45 mins in walking around the hospital on the prone cart tonight and Child Life had "green & gold" sugar cookie decorating in the lobby area so her and her brother had fun doing with that!  

Here is the schedule tomorrow (I think these build up and get a little longer after a few more days) and a pic of her and Max ending the night playing with new gifted toys!

Day 5 - SDR

Busy day today!  Dad finished building the Lego Hospital for Morgan this morning which is a big hit!  She took a bath this morning- lifted her onto a stretcher like platform and brought her into a room with a big bath with hand shower.  Apparently this was a little traumatic at first but then at the end she was like "ahh this feels good", I bet after 4 days!  She increased time on the prone cart today- we went on it three times about 45 mins each - walked around the hospital and spent some time in the rehab unit playroom on it.  They also started raising the head of her bed slowly all day- started at 10 degrees, then 20, then 30 (which hurt a little bit), then later in the afternoon removed her knee immobilizers so she could bend her legs and had her head up past 30/almost 40 degrees and she did great!  She is so happy to be able to play with things on the table now with her head elevated.  Will continue to increase this to get her sitting up!
We had visitors all afternoon and evening which was great entertainment and she was so excited to have her Kindergarten teacher who came with bags full of cards and gifts from her class!  She has the nicest friends in her class & the whole school sending so much love and we are so grateful for this! We wallpapered her room wall with cards and she is sleeping with all of her stuffed animals tonight :)
I received her schedule for tomorrow this evening- she starts at 9am tomorrow with different therapy & evaluation sessions all day until 2:30- Psychology, OT, PT, break for lunch, Therapeutic Recreation, Music therapy and PT again.  I will join these tomorrow for her first day and each evening she will get a new schedule for the following day (I believe will start to get longer and mostly consistent).

Day 4 - SDR

We had a little bit of a rough morning, again the diaper situation and I think she is very uncomfortable with it (can't blame the girl!) and for a little while we were concerned if she maybe has an infection from the catheter but by the end of the day thinking she is OK.  The highlight of the day was getting up on the prone cart though and finally getting out of the room, and of course more visitors & gifts!  We might need a U Haul when we leave this place!  We got her dressed this morning and brushed her hair (the back of it was crazy matted from laying on it so long so that took about a half hour!) and got her cleaned up which was a bit traumatic.
Physical Therapy (PT) came in about 11 am to show us how to get her onto the prone cart.  We have to have one person roll her into another persons arms on her tummy then transport over to the cart to lay on her stomach.  She can lift her head up a bit if she is on her elbows this way and it strengthens her back and core.  We took a walk around the hospital and skyway, her (4 yo) brother insists on pushing her which is slightly scary but he got the hang of it going slow and watching out for bumps in the floor without running her into anything!  Day 1 of prone cart they wanted her on it for 20 mins per time, 3 times a day and will gradually increase this.  The second time we went out, Child life had some play doh activities going on in the main area of the hospital so she got to do that for a while with her brother which was fun!  So grateful for these volunteers who come in to entertain kids!
I finally got out of the hospital myself for the first time since Wednesday and in true Minnesotan fashion admittedly had my sunroof open (its 32 degrees outside) just to get some fresh air and sunlight in the car :).  Dad is spending the night with Morgan in the hospital tonight with tall orders to put a million piece Lego Hospital set together and have movie night!

Day 3 - SDR

They said this would be the hardest day - 2nd day post op...we did have a bit of a rough morning but really only because she is getting bored and a bit stir crazy/tired of laying flat!  Several hours of trying to occupy her with Mary Poppins, crafts, play doh, cartoons, we made this butterfly craft, etc - thankful for Child Life at Gillette who came in with some activities!
She was able to have both IVs removed and her Catheter (cord free now!), she is diapered which is a bit of a problem but managing.  Still laying flat and just roll her on her sides to reposition every few hours.  She is just taking Tylenol and Ibuprofen now orally to manage pain all day and hasn't needed much!  She hasn't complained about her legs and says her back hurts only when we move her.
Thankfully we had visitors starting around lunch for pretty much the rest of the day to occupy her with conversation & new fun toys.  She had a little break and took a short nap in the afternoon which was perfect.  Tomorrow I believe we are able to get her on the prone cart and at least get her out of the room and did receive her schedule for her first Physical Therapy session at 11am.

I have two recommendations for anyone getting SDR - invest in an Amazon stick for the TV to watch movies, Netflix etc which has been great here and lots of new small toys/activities and space out giving to them :)

Day 2 - SDR

Morgan slept pretty well overnight last night, just woke up a couple of times whimpering with a little pain which medication helped with.  They did have to come in about every hour and check vitals and open her knee immobilizers to make sure they weren't rubbing & breaking her skin down so wasn't the most restful night!  
This morning she woke up and we finally got her to drink a little bit of water and ate a little breakfast.  She needed a couple of extra bumps to manage the pain and took a couple of short naps but mostly did great the rest of the day!  Grandparents occupying her with new toys helped and a visit from her brother this evening as well as Child Life crafts we brought to the room.  She is laying flat on her back and they do rotate her a little on her side but cannot sit up at all so we are feeding her, etc.  They stopped her continuous pain medicine drips and moved to oral which she is doing great with.  It is common during SDR recovery to experience tingling in feet/legs for a couple of days and they explained this sensation like after you hit your funny bone.  They are treating this with Gabapentin now and must be working because she is no longer complaining about the knee immobilizers being too tight or her feet hurting.   She is snuggled in her bed now watching E.T. (she has an "ET finger" with the pulse oximeter on it so this prompted :)) and just about to doze off!

Post Op

Surgery started a little before 3:30 pm and they called with an update about 15 mins in, then again at 5pm to say everything was going well and they were about half way through.  At 6:40 they let us know they were closing and her neurosurgeon, Dr Petronio, came out to speak with us probably about 7:30pm and said she did great and all went as planned!  A LONG 4 hr surgery!  The procedure involves identifying which nerve rootlets are causing the spasticity using electrical stimulation and he was able to cut about 37% of her nerve rootlets which is right in the range he expected. Her incision is about 3-4 inches in mid-lower back but covered with a bandage.  She had minimal blood loss and did great breathing etc.  He talked to us for a while regarding the longer term benefits, temporary tingling in her legs, and discussed her recovery time and time to get back to baseline (~6 months), etc.
It took a while to get back to the PACU but we finally got to head back and she was still very sleepy and woke up a few times crying and in a lot of pain.  She kept asking us to take her shoes off (but wasn't wearing any of course) so thinking her legs/feet were maybe tingling or painful- taken care of with a couple of extra doses of valium which made her very slow to wake up and required a longer time in the PACU.  I believe she is on some form of morphine also for the pain.  We made it up to her room in the rehabilitation unit around 10:30pm, got her all settled and she is now heavily medicated to keep her comfortable and sleeping peacefully.
It was long day but thank you again to everyone for all of the thoughts and prayers, texts & messages!

Surgery Day 1

As we were pulling into the Gillette parking garage this morning I saw this sign "Something Wonderful is about to Happen", I am not usually superstitious but I'll take that :)

Morgan did GREAT this morning, didn't ask for food once, told me she was "excited" on the way here until we got to the waiting room and then she admitted she "was a little nervous".  She gave Boozle some MRIs in the waiting room and was on a roll with the nurses as we waited in the prep area (making up & singing songs) and just a chatterbox having fun despite about an hour delay.  Pat and I were both able to bring her into the surgery room and this is where she lost it for a min but quickly got the mask on her and off to sleep she went...

Started 2:25pm so will update in a few hours after she is out.