COVID, 8 and 2nd Grade!

My last journal post was in mid-March, I believe just a few days before the COVID-19 Pandemic really hit home in the US and school closures started.  I think its important to share the impacts this has had on children with special needs, medical needs and specifically for Morgan.  Let me start by saying how grateful I am for our families health and we are very fortunate to be in the position we are in.  We have been through a lot with Morgan over the years but the last 6 months have been really tough!  

Several medical appointments we had on the books & therapy were all cancelled.  Her Neurosurgeon appointment was pushed out three times for her regular & 1 yr post op follow up- this finally happened on June 30th and thankfully no hydrocephalus complications (knock on wood).  We also discussed her SDR surgery getting her "about halfway there" and he agreed her bone deformity needs to be addressed at some point in the near future.   He was very disappointed to see some regression as a result of no physical therapy for over 3 months.  Unfortunately PT is not considered an "essential" business and her AFO was giving her blisters and we couldn't get her an Orthotics appointment.  We were finally able to get a new AFO made (she had outgrown) as soon as Gillette's opened up in July but her Physical Therapy is still not open and her walking is really struggling as a result which is so disappointing after the work we went through last year. 

School (or lack of) has been the main source of our frustration and has had a major impact on her mental health and behavior.  We tried distance learning in the Spring as much as we could (after a few weeks we were lucky to have our nanny back a few hours in the morning to help and provide childcare) but as two working parents this was impossible for even a "normal" child.  Morgan has fine and gross motor (CP) delays so she can't work an ipad or laptop independently.  Trying to do on screen assignments on an iPad in Seesaw almost always resulted in tears or throwing it across the room.  She tried to attend remote sessions with teachers and her para (after several weeks once she became available to us for help) but with her non verbal learning disability, dyslexia  and ADHD this also often ended in tears and she would tell us she couldn't see the screen and follow what they were doing.  Our evenings were a nightmare trying to help her through school work (in Spanish I should add) and I think at the end of it we had a couple hundred untouched assignments.  Her IEP was largely ignored, services weren't provided because they couldn't be remotely without someone by her side to facilitate and guide, and I really don't think any of this added any knowledge or value but instead caused a lot of headaches and frustration.  Her outbursts and behavior became quite unbearable during this time, violent behavior toward us and her brother, she shook the medicine cabinet so hard one day that the mirror fell on her head and another fit resulted in tearing the door off of the laundry chute.  I should note prior to COVID she had a few weeks of a "screen freeze" and her behavior was amazing during that time (I highly recommend doing this per the book, "Reset Your Child's Brain" by Victoria Dunckley), well of course during COVID they spent hours a day in front of a screen (both for school and sadly to occupy them while we worked) and this went straight downhill.  I could write for days on all of the devastating impacts of no in person learning for children with special needs and it breaks my heart to hear from other families and children dealing with this who are being left to struggle and falling further behind.  I, along with many special needs parents in our situation, spent a lot of energy calling and writing many letters to PACER, the district, the school board, our representatives, governor etc and unfortunately our voices don't seem to be heard and I have received no acknowledgements back other than blanket statements.  We hoped through the spring they would find a safe way to return to school to finish out the year, they didn't.  I hoped in early summer they would offer the extended school year or small summer school classes in person to help catch her up, they didn't.  I hoped all summer they would open back up this fall for in person learning (at least for elementary and/or kids on IEPs) and they are not.  

We were really left with no choice but to look for private (and unfortunately very expensive so not an option for many) services to help Morgan.  Early summer we had a tutor here twice a week to focus on phonetics/reading.  In the meantime, we had an assessment done at Lindamood Bell in Edina and she was a good fit for their Seeing Stars program.  They reopened in June and had an opening a few weeks later so she started this in person several weeks ago in the mornings.  This 10 week program is amazing- it is 1:1 learning, intensive/daily and already I am seeing her sound out and read words on her own (she had no concept of this and tested below a kindergarten level prior to starting)!  She will continue this for a few more weeks and they are recommending we extend it which is something we will take under consideration.  We also enrolled her in a private school, St Paul's Lutheran in Prior Lake for the '20-'21 school year which has full time in person learning with very small classroom sizes (Christian and Spanish classes a bonus!).  We were very nervous about a private school for Morgan since they do not have special ed or a para on premise but it feels like the right fit and felt like it was meant to be when we discovered one of her teachers from Lindamood Bell is a teacher there also :).  We have been working hard on her self sufficiency and care over the last several weeks to get her more independent and stressing her need to advocate for herself when she needs help at school.  STPL School started Tuesday, 2nd Grade! and she seems to love it there so far!

Her behavior, anxiety, meltdowns and inability to calm down, and ADHD we continue to struggle with.  We tried several natural things- clean diet, supplements, etc. but really not doing much to help.  We continue to try to stick to no screen time (only minimal passive screen time) which does help her behavior.  Several weeks ago we tried Methylphenida (Ritalin essentially) finally after focus was a concern at Lindamood Bell.  This was prescribed pre-COVID but we couldn't get her back into the doctor for monitor & follow up so didn't take. She was a hot mess on it and it definitely made her anxiety much worse - drop offs were terrible, several meltdowns over simple decisions she couldn't make, her sleep seemed much worse (if that's even possible), etc.  We stopped taking and saw her doctor again last week and we discussed now addressing the anxiety instead- both revisiting child Psychology (also closed and cancelled and we haven't been able to get back in due to COVID) and trying a new medicine, Escitalopram Oxalate.  We started this yesterday and she has had two good days in a row so far but this is still very much an area of concern and focus.  

In lighter news, we had a great and warm summer with lots of family time and close friends- at least our MN summer weather and the lake/being outside in the yard were great for social distancing!  We were also able to find private swimming lessons for Morgan with her cousin that she did for several weeks, she celebrated her 8th birthday with a "spa party", and now started (non-adaptive) Cheer this fall also!   

 

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.