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!