School days, snow days and spring days

Chillin' like a villain with her tablet.

Showing off her work at the school art walk.

Found my up and down paddle for work.

She's officially outgrown it, time to sell the BOB.

Lydia made a snow day cafe and fixed all our lunches.

Chef Lydia then made apple, peanut butter cars.

Shawnee St. Paddy's Day Parade and Cookie Baking!

 

We LOVE Endocrine

When Lydia turned one she had her first visit at the 22q11 clinic. This is a clinic with most of the specialists related to 22q11 pulled together.  We sit in a room and they all roll through one by one.  It's a super long day but it's a blessing to not have to schedule all those visits separately.

At her very first visit in 2016, we met with Dr. Feldt for the first time.  He is our Endocrinologist.  I remember his words to this day, "If anything is wrong with the Endocrine system, we can fix it."  Little did I know we would need to fix anything.  

For 5 years we did labs with okay results.  Lydia was growing in height and weight on a curve, never on the growth chart, but on her own curve.  Most of you know the typical kid growth chart and percentiles.  Lydia is on the 22q11 growth chart and percentiles since these kids are typically short in stature.

Lydia started Growth Hormone Therapy in October 2020 after her height started falling away from the curve.  Since that time she is injected with growth hormone before bed 6 nights a week. And because of that she's grown 6 inches in just under 1.5 years.  

She is now on the chart...the typical kid chart...for height and weight and wearing a size 6.  She is right where she is supposed to be. Thank goodness for growth hormone and an Endocrine visit for almost guaranteed good news!

HEIGHT                                                WEIGHT

The latest ingredient in Lydia's Medical Alphabet Soup

    22Q11        Anemia        Asthma        Atrial Septal Defect        

Attention Deficit Hyperactivity Disorder     Bifid Uvula        Chronic Otitis

 Media with Effusion        Cleft Soft Palate        Congenital Heart Defect        

Continuous Positive Airway Pressure        DiGeorge Syndrome        Dysphagia  

Gastronomy Tube        Generalized Anxiety Disorder     Growth Hormone Deficiency       

 Hyponasality        Interrupted Aortic Arch      Laryngomalacia        

Left Ventricular Outflow Tract Obstruction     Lymphopenia        Nasal Turbinate Hypertrophy   

Obstructive Sleep Apnea         Reactive Airway Disease        Ventricular Septal Defect       

 Tracheostomy        Tracheobronchomalacia    

Every diagnosis is hard at first.  You'd rather your child not have the thing.  Certain things about our life don't sit so heavy any longer, some do, especially when I'm in a dark mood.  Her heart and lungs and airway are those heavy things.  

In 2020 Growth Hormone Deficiency hit me hard, it was the toughest thing for me since Lydia needed a trach. It was the idea of something else, something else that we would continue through puberty, something else that needed daily injections, something else when I thought we were finishing up the toughest chapters.  I think that last piece is still lingering, we thought we were done with the trach and done with the g-tube and then we were faced with something else.  It's gotten better though, it's just a daily thing we do and Lydia is really good about it. 

 We added a new diagnosis this fall, 

one we've been suspecting since last spring.

Attention Deficit Hyperactivity Disorder and Generalized Anxiety Disorder

ADHD and GAD went about the same way but I'm not to the other side yet, in fact it took me 4.5 months to write this blog.

Lydia spent about 3 hours testing one day while I spent 3 hours talking to her psychologist.  What an amazing human that lady is and fortunate for our situation, she's raised her own son with similar diagnosis in our same school district.  She knows the ropes and has been a tremendous guide and advocate.  Lydia's school and teachers have also been terrific.

It's another thing.  It's another diagnosis.  It's going to be with her for a lifetime. 

And I know nothing about it.  Like every other diagnosis I'm learning from square one.  This time around I'm just starting at a point of exhaustion and depletion, not because of my sweet girl, but because of the ways of the world.  The end of 2021 and the start of 2022 have not been easy. I see this as a challenge but this one feels harder, ever changing, unpredictable and so many factors are outside of my control.  

Lydia is outside of my control and I must remember that every day, every trying morning, every dramatic bedtime, every time she seems less mature than your child, every time she's having separation anxiety.  Lydia is a beautiful human making her own mark on this world and she's teaching her mama so many things.  Lydia is just right, exactly how God intended and her brain works a little differently than mine and maybe yours.  I had 32 years of pretty simple living before I had Lydia, which I now know was my rest, my calm, my preparation for my greatest adventure...being Lydia's mom.

So, ADHD and GAD.  It's going alright.  Her psychologist is a wonderful resource.  Lydia's Kindergarten and First Grade teachers were accommodating her before there was even talk of a 504 plan.  The school counselor is a phenomenal person who has stepped us through the 504 process.  I'm signed up for a Parent Group Class at CMH to learn as much as I can.  I'm reading or preparing to read two books recommended by doctors and friends. 

We're going to be alright.  That seems funny to say because when I've shared this with some they respond with "oh, don't all kids have ADHD these days?" or "well that's not so uncommon."  They mean no harm and I believe that.  Yes, it is one of the most common forms of neurodivergence.  We'll learn, she'll manage, it'll be okay...right now it just feels like another mountain to climb and there is already an entire mountain range. I'm taking it slow.  Lend me your hand if you're on your way up or give a high five if you pass me on the way down.