Adaptive Programs & Athletics

I remember the first time I saw Morgan break a sweat.  It was just a few years ago (she was 8), when she stepped off the ice from her first Minnesota Special Hockey practice and took her helmet off.  Her head was soaked, her face was flushed pink, and she was exhausted from working so hard to try to skate.  I smile now at this picture in my mind because its something most parents wouldn't think twice about (sweating is a near daily occurance for my active son since the day he could start running) but for Morgan this was a sight that nearly brought me to tears.  I remember thinking it was so amazing to finally find an activity that she could get such great physical exercise from. 

We are a family that loves sports, I am a firm believer in keeping my children active with whatever activities they are passionate about and we encourage them to try new things.  Whether it be music lessons, hockey, baseball, rubiks cubing, dance, football, art class, cheer, swimming and so on, there are so many benefits for children to be part of something.  They develop physical and motor skills, get exercise, make friends, improve their self esteem, learn teamwork, and have fun!  For neuro-typical, able-bodied children this is simple, you find your local community and sports organization(s) and sign them up! The options are endless and the most challenging part is figuring out what they like best and navigating schedules.  Their chosen activities shape their core group of childhood friends,  entertainment values, and (hopefully) keep them busy and out of trouble.  

For children like Morgan with special needs (whether physically disabled, neurodivergent or children with complex medical issues) finding activities and sports to participate in is MUCH more challenging.  We started looking for activites for Morgan when she was a preschooler but realized early on the options were limited for a child who couldn't yet walk, had poor attention span, and limited fine motor abilities.  We started with music, something that seemed theraputic and catered to her sweet little voice.  After spending hours researching online and asking her therapists and hospital resources for recommendations, we settled on MacPhail Music Therapy adaptive program.  Taught by board-certified music therapists, she loved this amazing program and it gave her something to look forward to once per week.  But, like most adaptive programs, it was far (thiry minute drive each way), expensive, and individualized.  We then found an adaptive dance program at Studio 4, another amazing program and a chance for her to interact with other children with disabilities like her but also nearly a thirty minute drive.  A couple years later we were thrilled to learn about a Darby's Dancers program opening at our local Prior Lake Premier Dance Academy and made the switch so she could meet friends within our community.  I believe Darby's is still the only adaptive sports option in our city for elementary age children.  As Morgan grew older, she wanted to do and try all of the things she saw her brother and cousins participating in.  Over time, through various resources and word of mouth, we have found many awesome adaptive programs in the Twin Cities area and Morgan has been fotunate to participate in MN Special Hockey, Shockwaves Adaptive Waterskiing, Courage Kenny Adaptive downhill skiing, and Miracle League Baseball.  

These sports and her activites bring her so much joy and have helped her both physically and cognitively.  I love that she now has the confidence to participate in our family backyard baseball games and she can pridefully wear her hockey jersey to school on jersey day like her classmates.  We are so grateful for the programs that do exist but realize the barriers to entry are still so high for many children with extra needs- distance, costs, diverse abilities, resources, and even aptitude to find them!  Children with special needs already require so much EXTRA (frequent appointments, therapies, extra time to get out the door, additional time on school work, more coordination of resources, the list goes on) so adding a long drive to an activity that should be fun often just causes more stress. 

Morgan has also asked me many times why she can't be a Laker and play for Prior Lake like her friends and brother.  I wish I could give her a good answer for this!  As a communinity, I believe we can do so much better to be more inclusive with our offerings to accomodate for children (and adults) with disabilities and extra needs. 

There are over twelve hundred students in our district receiving special education services yet there is not a single adaptive program offered in our community education catolog.  Our city boasts more than 55 parks and close to as many baseball/softball fields used by our athletic program but not one of them was built with our adaptive athletes in mind.  Even activites like Choir or Play Theater, which may seem very accessible, are challenging for someone like Morgan who has dyslexia and can't read the lyrics/script as quickly, could be easily modified to better accomodate.  It is something we should all be mindful of for programs and events, to explore possible modifications and accessible offerings for people with physical and cognitive challenges.  Some activities might require minor modifications to be more sensory friendly or better cater to children with cognitive delays and of course other options like building an adaptive baseball field or park require much larger financial support, but as a community it is important to give opportunities to citizens of all abilities!  For me of course, my passion to help and support local adaptive programs is fueled by the smiles and joy I see them bring to my daughters face and the adaptive athletes and buddies around her. 

11! and Summer Updates

Hard to believe summer is almost over and Morgan just turned 11 earlier this week and off to 5th grade in two weeks!  We've had a crazy past several weeks with lots of appointments and some fun times also with our annual camping trip up north, a trip to the Jersey shore to visit family filled with waterparks, boardwalk and beach time and celebrating Morgan's 11th Birthday.  Trying to fit in as many appointments (even the regular stuff like dentist) as we can before school starts and while we thought a lot of this was routine follow ups there have been a few concerns raised to update on.

We saw endocrynologist earlier this year I don't think I ever updated on, since Morgan's height continues to plot before the 1st percentile, discussed the option of going forward with a growth hormone stimulation test, but she thought unlikely to show a growth hormone deficiency since Morgan's rate of growth is within normal limits. We did a bone age x ray for now and thought the results were interesting:  her chronologic age at the time was 10 years + 5 months, Bone age approximates were 8 years + 4 months.  So ~2 years behind still on bone age growth.  We will just continue to monitor growth and check back in a year or so. 

Gillette Children's is where she sees her PMR (Pediatric Rehabilitation Medicine Physician) and orthopedic surgeon.  We've had a few follow up appointments there to do another gait analysis following her osteotomy surgery, new AFO fittings to get back to hinged and give her more flexibility, and general CP follow up.  They noted some onset of right knee flexion contracture (her joint can't be straightened) and recommendation is to continue stretching, wear her knee immobilizer regularly overnight (we have been really bad about and got fitted for a larger size) and ideally do another round of seriel casting for ~4 weeks- ugh.  We see her orthopedic surgeon in a couple of weeks again and know it is recommended to schedule her pin removal near a year post op so one thought we discussed is to see if we can have them cast her right out of surgery since she will have stiches and have to stay out of water for a few weeks anyway.  Will make a decision and look at timing at this appointment coming up.

MHealth Fairview is where her new neurosurgeon is and we did have some concerns in May with some consistent headaches she was having so bumped up her annual MRI appointment to May and her symptoms seemed to go away so kept our July follow up with her neurosurgeon.  He is not comfortable with where her lateral ventrical size is.  Fluid in her head has increased some and might be impacting her negatively (potentially related to some of the behavioral & incontinence things we have seen).  This led us to some choices on next steps for testing and decided to do a dye injection into her shunt to check the flow.  She was quite nervous about this procedure and in tears until it started and realized she couldn't even feel it!  The dye flowed into her ventricals quickly (no obstruction in the catheter) but while laying under observation it did not flow down her tubing to her abdominal cavity until they had her up and moving around for about 30 mins.  So its draining slower than they would like which might be just due to pressure level in her head or might be some intermittent blockage in the tubing.  We had a remote meeting with her neurosurgeon to discuss next steps and today I took her in to try to turn her shunt setting down with the goal of having it drain more.  Well unfortunately after 2 1/2 hours of nurse and doctor trying to reset and a couple of x rays to confirm they could not get her shunt to program to lower setting :(.  Odd thing is we thought it was at 120, found out it was at 70 somehow from the x ray (we don't know how long its been like this but potentially since May maybe it didn't reset after MRI and they are trying to get it to 40.  Will wait to hear from Neurosurgeon tomorrow but we will likely have to go back in and see if he can get it to program maybe with the Codman rep.  Praying we can get this reset and an MRI in a few weeks shows smaller ventricals, want to hang on to this "old" shunt as long as possible!  

We've wrapped up summer swimming lessons (still really pushing this to get her swimming independently) and Miracle League (adaptive) Baseball but already started sideline cheer and will start up fall ML Baseball and swimming lessons again in a couple of weeks!  

Cast off, Recovery & New School

Overdue post, a lot going on! Morgan got her cast off on Mon, Nov28th and I think we grossly underestimated the amount of time it would take her to walk again but getting stronger every day!  Of course she was glad to have that stinky thing off, take a normal bath and have a wider selection of pants!

She took her wheelchair to school the first week after her cast removal and was hesitant to walk much (with her orthotic on only), I think still some pain and just weakness.  After the first week though we had her at home over the weekend and used the walker only and now she is using the walker still some but also walking a little without. Still slow and steps are challenging but getting stronger everyday…the MN ice/snow is making this extra tricky!  We had her orthotic adjusted also a week or so after she got it (was rubbing and giving her red spots) so it’s fitting better and got some new Billy’s shoes and Boots since she has to have the orthotic on at all times to walk for now.  We have a follow up apt with her Surgeon in early Jan (4-6 weeks after cast).  

She also wanted to try hockey again (MN Special Hockey) last Sunday so after trying on a few pairs of hand me down skates we found a pair that are wide enough to fit over her orthotic and she skated for a short period of time with the trainer but was super frustrated and I think just tired.  

Morgan also switched schools two weeks ago so that has been a bit of an adjustment!  This situation at her small private school was challenging with her disabilities so this has been an ongoing topic of discussion for a few months and ultimately decided to move back into the public school where she receives SPED services (and received an in district transfer approval to do so).  I could probably write for days on the topic of school and children with disabilities and the constant battle this is for parents but will just say its exhausting!  So far so good, she seems happy and continues to work one evening per week with her tutor also for reading (dislexyia) so we will pray for continued happiness, progression and that we made the right choice!       

We also still celebrate her micro preemie “adjusted” birthday every year with a cupcake on December 8th (her original due date)!  

Update - one week post op

Morgan is doing MUCH better!  I definitely underestimated the amount of pain and bruising she would have (she’s black & blue even above her cast up by her knee)- it hurts her to even pick her up but getting better every day.  We stopped the Oxycodone on Friday night after just one dose and never took the Valium they prescribed because they were just messing with her stomach and I think making her feel worse.  Just alternating ibuprofen & Tylenol have worked much better but haven’t needed much the last couple of days and just trying to keep ice bags over her cast when we can also.  Yesterday she went in to Gillettes to have her cast slits sealed & casted over and she was in pain yesterday afternoon I think because of it being tighter.  She went back to school on Monday and I think it’s been helpful it was Halloween and themed dress up days this week to mix in some fun and keep her mind off of! 

We bought a smaller wheelchair and it’s much better but I do think she’s realizing not been able to walk and sitting in a chair all day is not so fun! 3 1/2 more weeks to go!  Thank goodness for our unseasonably warm weather because this might get tricky transporting her up and down to vehicles and around school with snow/ice! 

Home

Last night was maybe one of the most difficult hospital nights we’ve had :( 

It’s been challenging to manage Morgan’s pain/discomfort- she had a plethora of meds yesterday afternoon/evening and just nothing else they could give her, they finally tried a narcotic via IV I think about 10:30pm after she couldn’t fall asleep and was in tears, which made her feel like she was going to vomit so took a while for that to pass.  I think she maybe had a couple hours of sleep and of course shortly after she finally dozed off a couple of times a nurse would come in for a blood pressure check or her pulse ox would go off from her tossing etc, I finally had to ask (beg) them to remove the monitors and leave her sleep (which they did reluctantly) and rubbed her back until she fell asleep and she got a couple hour stretch. 

She was getting pretty agitated and told us at one point “I think these meds are fake” and to “Call Dr G because he could give her some real ones”…some humor in a challenging situation! 

Anyway the morning was long and a bit of a fiasco with getting prescriptions filled and discharged (we got home around 2:30) plus trying to find a wheelchair in the right size. They brought one a size bigger than she needs and unfortunately the medical equipment rental place doesn’t have the 14” we need so we have a 16” for now and ordered one which hopefully should be here on Sunday. She did have PT come in this morning and showed her how to transfer, gave us a walker (mostly for stabilization and toileting) and had her do the wheelchair.  If we are late everywhere we go for the next month it’s because she won’t let us push her and has to do it herself! I keep telling myself her stubbornness and determination is a good thing!  

I am usually a planner but for those reading this who may go through this surgery at some point a few things I wish I would have asked pre op or purchased in advance you need for home- over the counter ibuprofen & Tylenol and a pill cutter, cast cover and a bath chair, ask for a walker, ensure they have a wheelchair in correct size or order before, and several pairs of wide leg sweat pants to fit over cast. 

Of course bring sharpies for cast signing! One of the few things that brightened her day. 

She was still in quite a bit of pain this afternoon and evening, they did leave her cast slit up the sides because of swelling and we will go in next week to have it closed/wrapped. Bags of ice over her cast seem to help but I think it’s the Oxycodone now making her stomach upset also so will try to wean her off that tonight/tomorrow. Grandma came over to tonight (to allow us to step out and watch Max’s first hockey scrimmage) but she was definitely in pain, tummy ache, and think slept for a little bit at least.   We have her in our bed, foot elevated and ice over and she finally ate some bread and watching a movie now, hopefully a better night at home

Post Op

Surgery went great. Her surgeon said they did not have to do the muscle lengthening which is a good thing. This is something they assess during surgery after they rotate the bone depending how the muscle looks and if more length needed but they try not to do it because it weakens the muscle and recovery/getting strength back takes longer.  Hoping with  casting over the next month flexing her foot it will keep it stretched and help prevent further toe walking. 

She has a plate/pins in and casted for about a month. They left slits on the sides of her cast to allow for swelling and depending on how it looks in the morning they will close/ wrap it either here before discharge or come back in a few days.  

She was quite entertaining coming out of anesthesia and the first thing she said to us was “I need to get some pants on and get up to my room, I have visitors coming”. We are just relaxing now, she ate some food and trying to manager her pain.

Surgery

Everything ran smoothly this morning! 

Morgan’s largest concerns were if she got to pick her cast color and she interrupted our discussion of the procedure(s) with her surgeon with a very important question of “what color sharpies work best on pink?”.  We also made sure she got to pick the flavor of smuckers that goes on her mask (went with vanilla, no fruit) and even found a small mask for boogers (her blanky that’s been through many surgeries with her). 

I was able to bring her back to the surgical room and hold her hand while she went to sleep. This is always the scariest/hardest part and there were some tears but she clenched onto bunny and boogers in one hand and mine in the other! 

They called with an update a few minutes ago and said they started about 5 minutes ago and she’s doing great.

Tibial Derotational Osteotomy - Round 2

Lets try this again...

Morgan is scheduled to check in at Gillette's at 8:45 am tomorrow morning with surgery at 10:15 am. 

Pre Op exam and labs completed last Monday and she was a rockstar with the blood draws, no tears!  No COVID test required since we are within the 90 day window of her last positive PCR test.  We did her first surgical bath this evening and have to do another one in the morning.

In hindsight, the month and a half delay was probably a good thing.  A bit of a pain to rearrange & redo everything but it allowed her to enjoy a full season of cheer this fall, walk in her aunt's wedding, and enjoy a fun MEA break with friends at a waterpark hotel in Okoboji.  Her expression at the waterpark says it all!  

We appreciate your thoughts and prayers for Morgan and the skilled hands of her surgical team tomorrow!

PCR results & cancelled surgery

UGH. Morgan's COVID PCR test from Saturday morning came back positive and we had to cancel the surgery this morning :(

She doesn't have symptoms at all and I have done two at home tests on her (one before the PCR test out of curiousity and one this morning after it came back) and both were negative.  I spoke to the nurse this morning and apparently the tests are highly sensitive and would detect if she had within the last 90 days so she must have had recently.

She was quite upset when we broke the news and "tell them I'm not sick", she is on a bit of an emotional rollercoaster after all of the prep and mentally preparing I think.  Will update when rescheduled.

10!, 4th Grade, Tying Shoes & Surgery Prep

Confession...I've had a hospital bag packed in my closet and ready to go at any moments notice for several years.  A small bag with an overnight change of clothes for Morgan and I, toiletries, some small toys etc.  I'm not typically the superstitious type but probably a Hydrocephalus mom lessons learned, type A, thing after we ended up in the ER unprepared one too many times and now I'm just afraid to unpack it! I discovered this was actually a common mom practice after a fellow hydro moms brought it up this summer over lunch at the hydrocephalus conference and felt much better about myself!  Anyway, I pulled this bag out of my closet yesterday and happily removed the toddler sized clothing after several years collecting dust to update for Morgan's surgery tomorrow.

We've had a bit of a fiasco scheduling labs, Pre Op , etc and timing it all to prepare for sugery.  Note to self, do not schedule surgeries the day after a holiday weekend. 

Tonight we gave Morgan her evening surgical prep bath, removed nail polish, jewelry, answered a lot of questions, and all ready to go for bright and early tomorrow morning.  Please keep Morgan, us and her surgeon in your prayers for all to go well and a successful surgery!

Morgan turned 10 on August 21st and had a fun movie night and sleepover themed birthday party with her amazing friends.  She started 4th grade this week, is looking forward to her auntie's upcoming wedding with her flower girl duty, and her OT shared a "YouTube" video from last spring of her finally tying her shoes!  I wasn't sure she would ever be able to accomplish this feat with her fine motor delays but yet another amazing accomplishment!  

     

Summer & Tibial derotation osteotomy

I am not quite sure where the last year went but hard to believe it is August already and the last time I posted was about a year ago!  Morgan's hydrocephalus and her gross motor abilties have been stable and we continue to do weekly PT but our focus has been more on her education and behavior.  She wrapped up 3rd grade and received reading, math, OT and adaptive PE services through the school district all year and still loving the small private school and the amazing teacher and friends she has there!  This summer she has a reading tutor who is Orton-Gillingham trained for dyslexia and works on her math workbook (her least favorite subject) several times a week with her nanny who is a teacher.  Sadly we have been on a waiting list for a child psychologist for nearly 2 years and seems impossible to get in person services anywhere local but we are still addressing her anxiety with medication (escitalopram) and have increased dosage as needed. She still really struggles to control her frustration and emotions at times so continue to try to address!

Unfortunately we also learned several months ago that her neurosurgeon (who we love and she has been with for several years) was leaving Children's hospital in Mpls/St Paul and we have been forced to shop around for a new pediatric neurosurgeon :(.  She has an appointment coming up with a new Dr at M Health Fairview in a couple of weeks. 

She has had a few appointments at Gillette's over the last year- watching her CP, growth, and her right leg external tibial torsion.  She had another gait & motion analysis done a few months ago (robot Morgan) and a couple of appointments with her orthopedic surgeon.  After watching for a while and much discusion we did decide last week to move forward with scheduling surgery to correct her right tibial deformation.  The surgery is scheduled for September 6th, it is called Tibial Derotation Osteotomy.  Timing is not ideal for many reasons - school, sports, weddings etc this fall but due to insurance changes we need to have it done before October and it is better for her functionality & mobility to have it done before next year & winter.  From what I understand typically this surgery just requires an overnight hospital stay and she will be casted and in a wheelchair for ~ 1 month, then a walking cast/brace and PT for several weeks until fully recovered.  She will likely always have to wear a right orthotic but it will give her more functionality with her foot straight, help prevent potential knee & hip issues down the road, and hopefully to allow her to skate better for hockey and give her ability to try new things!  The surgeon also said he may look to do some muscular lengthening in her calf muscle, this will be determined when she is in surgery. I will post updates during this time. 

Meanwhile, we will continue to enjoy our last month of summer!  So far this summer she has done swimming lessons for a couple of months, lots of lake time with friends, Adaptive water skiing again with Shockwaves, family camping weekend, she starts cheer this week, and we had a great trip to Austin TX for the Hydrocephalus conference again a couple of weeks ago!  

MRI, Neurosurgery apt and Waterskiing!

Last Thursday Morgan had a MRI and her annual neurosurgery follow up appointment.  She was very nervous about the MRI, it has been over 2 years since her last one (a good thing!) and she was actually sedated for that before her SDR surgery so had lots of questions.  She started to freak out a bit as we were getting her all strapped in and ear plugs in but was able to calm down after a minute and was great that Children's has a movie playing during it so went by pretty quickly and she was a rockstar!  

Following the MRI we met with Dr Petronio, her neurosurgeon, her scans look stable so that is amazing!  I have mentioned in the past but her right frontal shunt which goes to her 4th ventricle is really not in her 4th ventricle so at some point we think shifted (into a space that has some CSF behind it) so he suspects this probably isn't even working but so far she hasn't needed it and not going to touch it!  They were also able to get both shunts settings reset (has to be done after each MRI) on the 2nd try which is usually a painpoint so went well and no x rays required after to check them!  We talked alot about the upcoming years and what to expect if her shunt tubing starts to bother her, sounds typical during growth spurts, and may start getting brittle over time or the scar tissue could become problematic.  He also raised her Tibial bone torsion which we continue to watch with Gillette's orthopedic surgeon (she has another follow up in September) and suggested looking at casting her right leg again to gain better calf flexibility, also something we have discussed with Gillette's Rehab doctor but wanted to hold off until after summer and unfortunately I think we will have to look at doing this soon.  Overall things are going great medically, she really hasn't been having headaches as much as she used to and we pray we don't have to see him again until next year!

Morgan is having a great and busy summer with a mix of nanny at home, PL Kidsco which she is loving, and weekend fun boating, hanging with friends and family, pools, parks, great weather and more!  She was SO excited for the opportunity to join the Shockwaves Adaptive ski squad a couple of times this summer also and had a blast skiing!  What an amazing organization we are so fortunate to have nearby for all of these kids!

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.

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!