Specialists Update 2025

Look at me posting only a month after the annual appointments. 

Progress.  Acceptance.  Resilience.  

I also took a vacation day to "catch up" on things. 

Lydia had her comprehensive clinic visit on July 2, 2025.   

Specialist by specialist:

ADHD: I dropped the parent psychologist.  I'll reach out if things are going south or I have questions.  I don't have time, mental capacity, or the bandwidth for that.  We met with Lydia's psychologist that she's seen a few times over the years.  They had a really nice talk and we all agreed that we're good and it's not needed right now.  Meds are staying steady ut 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, but it's looking better and more appropriately sized for her anatomy.  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 is Monday, August 4th. 

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. 

ENT: Her surgery that we've been rescheduling for a year is happening Monday, August 4th. It's 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. 

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.  Because Lydia has reoccurring pneumonia and is prescribed so many antibiotics to fight these infections we are exploring a prophylactic.  During her surgery she will have more labs drawn to ensure we are taking the right path and picking the right one.  One more pill or liquid med she has to take each day but what if she's not sick as often or doesn't get as bad when she does catch a bug?  That would be amazing. 

Pulmonology: No update.  We see Pulm in February.

Speech: 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 met the new one, she seems thorough and great, interested in taking her time with us and learning about Lydia. 

Next Blog...the new specialist soon.