The year I didn't post because it was overwhelming, and I'm not sharing that part yet.

I've been meaning to post Lydia's medical update since her comprehensive clinic visit on July 3, 2024.  The notes have been written and laying next to my keyboard since then.  I've added images and more specialists throughout the year.  The stack keeps growing.  I keep intending too.  

I held a lot in for 6 months. I finally shared some.  It got easier.  She taught me it was okay. She's unbelievable.  The way she handles things with admirable resilience - and I wish she didn't have to experience a single day of any of it. 

Med changes. New diagnosis. Providers retiring. Hospital customer service declining. Surgery postponements. Pneumonia.  Always pneumonia.  It was a rocky year and we trudged up that mountain and she conquered another hill. I really hope she gets a chance to just ski downhill someday and get a break from the climb. 

Shall we go specialist by specialist?

ADHD: Provider changed because of me.  Provider changed because of retirement.  New provider for Lydia is a psychiatrist, seems good. New provider for only parents is a psychologist, has been helpful for us and our home routines and approach.  Not new provider but so hard to get into, a psychologist for Lydia.  Who knew it was going to take all that and meds!  We've switched meds about 3 or 4 times in the last year and may be in a good place for awhile, so long as we can get them.  After several years we've finally run into the ADHD med shortages.  In the past month we've added an SSRI to Lydia's meds and are waiting as we titrate up to know how it's working.  The thing about these meds is they can cause the same behaviors they may help treat?!?!

Cardio:  All her heart repairs are stable and functioning as they should.  Her aortic arch repair remains large and over-sized for her body right now.  It presses on her trachea creating more pulmonary issues for Lydia but you don't have open heart surgery to rework a repair in order to have a right shaped trachea.  You live with the misshaped trachea and deal.  We are waiting to have a CT Scan when she goes in for ENT surgery - which has been postponed 3 times because of pneumonia which Lydia is more prone to because of her pulmonary issues, vicious circle.

Endocrine: Lydia remains on growth hormone therapy and will until she reaches puberty.  One shot a day, six days a week since she was 5. Her "catch up" growth is over and she's really leveled out to a normal growth pattern of a couple inches a year. One of our favorite providers in Endocrine retired and we'll miss her a lot.  She's known Lydia for nearly 10 years.  And it was she who sent us to our latest specialist...more in the next blog.

ENT: The life long pain in the neck for this kid!  She's had ENT issues...and surgeries...since birth.  She produces so much snot, wax, phlegm, sputum, whatever your name of choice is for the gunk that can come out of your head, she's got it.  We've had drops and rinses and inhalers and more.  Ear tubes, let us count the pairs. This year Lydia was referred for allergy testing - nothing, nope, she's fine, just the seasonal kind.  Her surgery that just won't happen is for ENT to replace her "T" shaped ear tubes and do an exploratory scope to see if any other interventions are needed.  Those could be any of the usual things for Lydia, adenoids that grow back,inferior turbinate reductions, again, etc. Every illness over the last two years seems to turn into a sinus infection that turns into ear infections that turn into pneumonia.  If any of this helps, I'll take it.  Say a prayer for no pneumonia or Covid or anything else in August so we can finally have this surgery a year after it was first scheduled!

Immunology: all good, kind of.  Lydia can have all vaccines and they kind of work.  When measuring the effectiveness of a vaccine it's done by measuring titers, basically the amount of antibodies to fight the infectious disease.  Lydia has low titers for pneumonia, has had the vaccine and a booster within 2 years. 

Pulmonology: With the number of times she's had pneumonia in the past year, we are considering a prophylactic antibiotic. The urgent care doc will suggest amoxicillin and I laugh and say, give us the augmentin-calvunate with a steroid, an inhaled steroid, ear drops and a nose spray please. Again, we watch and see how things change and how her heart repair is impacting her.  There is a continuum here and it's not lost on me.  Remember I go worst case scenario on things...so Lydia's breathing, I fully understand that the way to solve big bad lung issues is with a trach and no part of me wants to ever go back to trach life, but just how I have to steel myself for a 3rd open heart surgery someday, I also steel myself for this.  Pray it never happens?

Speech: Easy Peasy Lemon Squeezy. All good, supportive of Lydia's IEP initiatives in speech.  

The real easy normal typical stuff?  Eyes are good, still in glasses.  Teeth are good, working through orthodontia now. Pediatrician - she retired and we meet the new one tomorrow. I keep them around for FMLA paperwork, which I now realize I forgot to request. Shoot. You'd think with all these specialist I could get one of them to sign FMLA paperwork - reminder: they used to.  That's another story for another day. 

Goodnight.  I'll tell you about the new specialist soon.  We see the majority of these specialists in July, so here is hoping for no new things this year.  Let's just keep 2025 as is, except for that surgery in August!

I'll take you from June to June real quick.

I have not posted since September of 2024, 

so on the eve of the eve of Lydia's 10th birthday, let's catch up.  

I'll take you from June to June real quick. 

Lydia the ballerina danced to Shooting Star at her first dance recital in June 2024.

A picture of the birthday girl at breakfast the day she turned 9. 

Splish Splash Slip 'n' Slide 9th Birthday Party

A KSU fan in the making thanks to her Papa and nearly every teacher she's had.

Lydia Rose, 4th grader.

Fall fun at the pumpkin patch in October 2024.

Girl Scout Troop overnight sleepover at the Zoo!

Our Halloween Witch.

We made a trip to Tulsa, OK to visit The Gathering Place.

Lydia's first choir concert in November 2024. 

We kicked off the holidays at the Hip Hop Nutcracker!

We kept it going with Home Alone at the Symphony!

Happy 1/2 Birthday sweet girl.

Thanks for for making my birthday special, too. 

Lydia played a lot of volleyball.  Two clinics and one season of practices.  

She hasn't played a game yet but is loving getting a hang of the fundamentals. 

Winter Style, it was a cold one.

Snow Days!

Girl Scout Cookie Season!

We went to Phoenix for Spring Break.  Went to a Spring Training game, 

the Musical Instrument Museum, and the Botanical Gardens. 

Father Daughter Dance with the Girl Scouts.

2nd Choir Concert in April 2025. 

And now Lydia the Hip Hop dancer performed at her 2nd recital to the song Hair.

McDonald's has Squishmallows in the Happy Meals!

Posing after spring volleyball.

The last day of 4th grade.

Lydia earned free Royal's Tickets for selling so many Girl Scout Cookies!

Inside Out: Lydia's Version

Anxiety - yep, about most things.

Envy - uh huh, and wondering why she's different.

(scars, treatments, growth hormone shots, CPAP, IEP, doctors)

Embarrassment - it's real, and thankfully mild still.

Fear - yes, see anxiety above. 

Sadness - We're all a little sad this week, or disappointed, angry, grieving.

Lydia's anxiety has been soaring to new heights since early August. It kicked in at the last week of summer camp when she began to worry about 4th grade math. Then we had 2 excellent drop offs at school and it started crashing. We've had tears and sobs, running and refusing, worry and sadness, and more. We've not had a super consistent routine because we didn't need one the last two years at morning drop off. Either one of us could take her, early or right on time, skip YCare and be a walker - none of it mattered. 

3 1/2 weeks into the school year and we are tightening things up around here. After our typical solid morning routine at home, I'm taking Lydia to YCare between 7:30 and 7:45. We walk and repeat our to do list all the way there. "We buzz in, we sign in, we hug and kiss. To the stage for Lydia and to the door for mom." It's been in improving stages of success for three days in a row.  

This comes after a very hard and emotional Monday and Tuesday. We have some new news about Lydia since Monday and are grappling with that. Lydia is of the age that she picks up on things and asks more questions at the doctor, so it's me trying to listen and learn with the doctor, keep my immediate emotions in check when hearing new things about Lydia, and supporting her understanding and emotions at the same time.  I wasn't ready for it on Monday.  More in another blog, at another time. I'm almost ready.  

The bits and pieces I can't fix for her.

For all of 9 years we've mostly been able to help Lydia, or allow her medical professionals to help her , with medical intervention.  Surgeries, feeding tubes, trachs, medications, hormones, occupational therapy, physical therapy, assistive devices. When it comes to her brain, when it comes to any of our brains, it's a bit more complicated. 

Lydia was diagnosed with generalized anxiety disorder and combined type ADHD when she was in kindergarten.  She started a 504 plan at school in the first grade.  In second grade we started medication to help with her ADHD.  BVSD does reading and math assessments often and her scores started dropping in the second grade. Third grade was an absolute roller coaster.  Fourth grade, we'll start with an IEP.

A little bit about what all these things are first.

From https://www.verywellmind.com/:

Generalized anxiety disorder (GAD) is characterized by unfounded chronic and exaggerated worry or apprehension that is more severe than the normal anxiety most people experience. If you've been diagnosed with GAD, certain medications may be used to help manage your condition.

Combined type ADHD is a presentation of attention-deficit hyperactivity disorder characterized by symptoms of both inattention and hyperactivity-impulsivity. To be diagnosed with this type, a person must have six inattention symptoms and six hyperactivity-impulsivity symptoms.

From understood.org: 

504 plans are formal plans that schools develop to give kids with disabilities the support they need. That covers any condition that limits daily activities in a major way.

These plans prevent discrimination. And they protect the rights of kids with disabilities in school. They’re covered under Section 504 of the Rehabilitation Act. This is a civil rights law.

An IEP is more than just a written legal document (or “plan”). It’s a map that lays out the program of special education instruction, supports, and services kids need to make progress and thrive in school.

IEPs are covered by special education law, or the Individuals with Disabilities Education Act (IDEA). They’re created for eligible kids who attend public school, which includes charter schools.

Here is a handy chart to explain the difference: 

https://www.understood.org/en/articles/the-difference-between-ieps-and-504-plans

Lydia was so excited for third grade and she had the teacher she wanted with a great group of friends in class.  She was ready to go!  Lydia's maturity level is at least 1 to 2 years behind her peers because of her ADHD diagnosis.  We saw a lot of maturity in her this year, especially with regards to attachment issues, transitions, and knowing behavioral expectations.  Teachers at school and parents would comment on it.  I believe that this is what led to a successful Nutcracker snowflake performance by Lydia. In years past it would have never happened.  This year she stayed on stage, performed and didn't shed a tear.  She may have had zero finger nails the month of December because she was so nervous she chewed them all off, but she did it!

Lydia had a tutor that worked with her all year, twice a week.  Lydia did extra math work every week this year on top of the typical multiplication flash cards.  It was exhausting to fit in all the extra math work, the daily reading time, the flashcards, the extracurriculars and time to just be a kid.  Her teacher was amazing for her first and foremost but she was also a coach to me.  She helped me put the worksheets aside sometimes, just enjoy the story at night reading to her, and ensuring Lydia's brain had time to turn off and rest at night - for her to just be a kid. 

She remained exited about school through the year but it was quickly obvious that she was working so hard to focus and read accurately that any hopes of comprehension was out the window. Her assessment scores started dropping.  Her fabulous teacher recommended general education reading intervention and so we started that.  Thankfully we had that all year as we discovered other areas that Lydia could use a boost in to be successful at learning.  Her math became troublesome because the curriculum is so text heavy.  If you are giving it your all to read it accurately and you are not comprehending it, how are you going to figure out the math problem? 

In the new year we started down the special education path.  That looked like three things:

1. Lydia would take all the normal assessments for BVSD and the state testing would start this year.

2. Lydia would complete a few weeks worth of rigorous special education evaluation outside of class.

3. Lydia would spend a day at CMH with her psychologist to assess her behavioral health.

By spring she was wiped out, we all were.  Wiped out, tired, a bit sad, maybe disappointed or frustrated.  Not in her, she is working so hard, so hard every day.  Maybe a bit in myself questioning if I could have helped more, done anything different, not started her in school the year I did.  I go through peaks and valleys about all medical things related to Lydia.  Lydia has been teaching me how to be out of control for 9 years, why stop now?

During all this we continue to try different medications for her ADHD.  Some work for awhile and then shut down like she didn't even take anything.  Some work for a bit longer giving you false hope that you found the right one. I think we are on our 6th or 7th variation currently and maybe it's working, maybe not.  She certainly behaves better for teachers than her parents and when among good peer role models.  Most days we spend time with her morning and night, before and after meds.   It's hard to gauge what the meds are doing for her at summer school and camps.

Lydia also started sleeping very poorly again during all of this.  It was increasingly harder for her to get to sleep, stay asleep and sleep until a decent time in the morning.  It was not uncommon for us to be working on bedtime routine and falling asleep until 9 or 10.  Then she would wake up 6 to 8 times night and we would all wake up.  She'd get up for the day at 5:30 or 5:45.  She was tired but you wouldn't know it because she couldn't sit still.  We made a few medicine changes but it was restarting the CPAP that really did it.  We are all more rested these days with her asleep by 9, up at 6:30.

Okay, back to special ed and IEPs. Lydia's testing and assessments showed the need for an IEP, so we did all that work, had the plan written up just in time for school to end.  She'll start fresh with the IEP in 4th grade, spending time with a para in the classroom, spending time out of the classroom with some pretty awesome teachers and having all sorts of supports in place to help her with her inattention and hyperactive tendencies.  This summer she is attending the BVSD summer step up program in the month of June and that really focuses on reading.  She's working with one of the special education teachers this summer for tutoring in math and other things. She's attending camps in the afternoons in June and then full day in July.  Most of her camps are art related with a little slime, dodgeball, and cooking thrown in.  

Our journey continues.  

I told someone recently that all people have complex stories and they often start when they are children or teens.  My childhood wasn't complex.  It was super normal, on the rails, storybook.  I had the family, I followed the rules, got the grades, I played the sports, went to college, got a job and tada - nothing was out of place.  I was in control.

Lydia is my greatest adventure.  Lydia is my why.  Lydia is amazing, brave, and courageous. We are meant to be mother and daughter.  I hope I do right by her and I thank my lucky stars she is the ball of sunshine and energy that gets to teach me how to be a better person each and every day. 

2nd Annual Memorial Day Weekend Trip to STL

 We made it two in a row!  The P's from Indy met us in St. Louis for another Memorial Day weekend full of fun.  The girls took no time to refriend one another after the year apart.  I hope we make it a 3rd and 4th and 5th.  This trip we visited Grant's Farm and the Magic House, swimming in the afternoons before dinner and game nights. 

 I held that snake!