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.