1 year post op - SDR

Back dated writing to catch up!  A year ago today (March 13th) Morgan underwent selective dorsal rhizotomy surgery at Gillette Children's in St Paul MN.  We went into that procedure somewhat hesitant and weren't sure what kind of gains she would see from it but hoped for the best and felt we had to proceed for preventative reasons, and understood the long, tough rehabilitation period to follow.  Although Morgan was probably higher functioning than many of the children that undergo this surgery who often see miraculous results, unfortunately I would be lying if I said I was completely satisfied with the results for her.     

The surgery itself was successful, she healed quickly and I think she was back to baseline within 6 months.  The tone (spasticity) in her right foot is definitely gone, which was the goal!  I think we hoped with the spasticity gone she would be able to increase her strength and build her right calf and thigh muscles up to improve her walking, gait, running, jumping, etc.  Unfortunately we do still see her toe walking on that right side without her AFO on, I think this is somewhat out of habit and also because her muscle length and strength just aren't there. We are also now seeing more external foot progression angle on that right side than we did before the surgery.  She is just starting to be able to climb our front stairs unassisted (slow and wobbly but can do it if not carrying anything!), still not running or jumping for the most part.   

On March 3, we had her 1 year post op appointment at Gillette with Orthopedics and PMR.  They reviewed the gait lab analysis with us and took X rays of her legs.  From her Orthopedic clinical notes, the imaging shows a 1.5-cm limb length discrepancy, right shorter than left and bilateral genu valgum (knock-knees), right greater than left.  She has right side femoral anteversion (inward twisting) and external tibial torsion (rotated outward) aka bone deformities.  The definitive intervention for torsional abnormalities is a procedure called derotational osteotomy.  The external tibial torsion, her most marked abnormality, will remain the same or become progressively more external over time and eventually she will need to have this surgery done :(

We discussed this procedure a bit and the typical age range which ideally is done around 8 yrs old and decided to wait for follow up one year from now to make any decisions around this.  

With her PMR doctor we reviewed much of the same but also her growth (potentially some mild widening on her height curve) which we need to continue to monitor and speak to her pediatrician about.  The girl can eat but she is little- height and weight!  We also discussed serial casting her right leg again due to her ankle contracture, or potentially discussing a course of Lokomat use at Gillette again to help improve her gait pattern (the machine we used while inpatient).  I didn't jump on the serial casting appointment because of upcoming Spring Break but will potentially look to schedule something this spring before summer swimming and see if we can make additional PT sessions with Lokomat work!  

So a bit of disappointing news today but will continue to work on what we can and address everything next year.  Here is her 2019 (left) vs 2020 (right) gait lab walking video so you can see the before and after.

Neuropsych & Gait follow up

Realizing its been about 6 months since I have updated Morgan's blog!  This is partially because for several months there wasn't much to update on until recently and also just trying to keep up with life!
She made it through the first half of 1st Grade and initially things seemed to be a welcomed, somewhat quiet break from medical and educational concerns & issues.  Morgan has been busy with a homework helper course, Darby's Dancers, Music/Piano and Hockey!  She started Minnesota Special Hockey this winter and quite honestly we weren't sure if we would even get the equipment on her, but she is loving it and skating around with the skate trainer at practices and at our rink at home.  Its been great winter exercise & an amazing program for special needs kids!

School was going well and she seemed to be enjoying it more this year (keeping her in school with regular attendance/schedule has helped) but started seeing concerns after a few months in with lack of progress on reading, math, self regulation and behavior issues.  A meeting back in November prompted us to schedule follow up appointments with her Neuropsychologist and a child psychologist (upcoming) among other regularly scheduled follow ups.  Unfortune reality I am learning for preemies & special needs kids is that once you get past the early years where the focus is primarily on medical stability and physical development needs the focus shifts to emotional and education concerns/management.

We met with her neuropsychologist last Tuesday after Morgan's evaluation to review the results with him.  She was diagnosed with ADHD - Inattentive Type and Developmental Dyslexia (Disorder of Reading).  Although all of the attributes he explained for her diagnosis are no surprise to us and describe her perfectly (difficulties regulating behavior, difficultly with perceptual motor processing, inattention, distractibility, poor task persistence, impaired phonological awareness and working memory, poor letter word identification, etc.) it is still a bit of a blow to add two additional disabilities to the list.  He is concerned about the growing gap between her strong verbal skills versus delayed reading skills and managing her inattentive ADHD was largely the focus of the discussion because without the ability to maintain focus and attention she will continue to struggle in school. I have taken pride in the fact that to date we have kept her free of long term prescription medicines despite all of her medical issues and diagnosis, but here we are faced with the dilemma of treating this with medication.  Since her diagnosis I have spent some time researching options and wrestling with the harsh reality of the fact that we will likely need to make some changes (whether medical, school, etc).  We had an appointment with her pediatrician last night and discussed/reviewed all alternatives - any and every modification or adaptations we can make.  A large majority of the things she suggested we are already doing (heavy focus on organic, grain & dairy light diet, limiting screen time, supplements, IEP accommodations, etc).  Needless to say we left the appointment with a low dose prescription to treat :(. We are both very concerned about some of the typical side effects of the medication so will start with this low dose trial, slowly increase and closely monitor her appetite (she cannot afford to lose any weight or slow growth) , sleep and behavior.  

Last Thursday we also had her Gait & Motion analysis follow up at Gillette's, they do this about a year post Rhizotomy surgery to compare results.  Robot Morgan was in full effect again and she was very cooperative except for her refusal to wear a mask to measure stamina (again), poor girl is terrified of the mask due to the numerous surgeries she's had!  We have an appointment early Monday morning to review the results and I will post an update at some point following.

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!