Miss Lydia Rose

Tuesday, August 5, 2025

Surgery complete!

We've been trying to schedule a CT scan and an ENT surgery for a year now. COVID and pneumonia have gotten in the way four times. Yesterday it was go for launch.

CT scan complete, that's for cardio and pulmonology to use. A heart echo only tells us so much and the chest x ray only tells us so much. CT scans are super neat to look at because it's basically a cross section layer by layer scan of her body. We will be able to see the impacts of repeat pneumonias on her lungs, not cool. We will be able to see how her original aortic arch repairs are affecting her trachea.

The ENT procedure was for a new set of T tube ear tubes and an endoscopy. That showed her adenoids are doing all right with no further growth, but her inferior turbinates needed to be reduced. Eardrops for a week, some saline gel in her nose for 3 weeks. All good!

Friday, August 1, 2025

The last bits of summer!

Summertime Fun in July before we head back to school.

We are welcoming a new baby into the family in August. Congrats!

Mom and Lydia First Watch Breakfast Dates!

As much pool time as we can get, though it seems very limited this year!

Cooking something up!

Our friends from Indy came to town over the 4th.

We went to Black Bob Bay, celebrated the 4th with our neighbors, went to Science City at Union Station, ate at Jack Stack, then played mini golf at Craft Putt before going to Twisters for ice cream.

Harry Potter camp!

We explored the Rabbit Hole!

Visited the Toy and Miniature Museum!

I introduced Lydia to TOUS les JOURS and I think she'd go every day if it were closer.

Dad played the National Anthem at the Monarchs game and Lydia met the Mizzou cheerleaders.

Possibly the best news of the summer is that we tried boba and bought a labubu!!!

Double Digits Era!

Happy 10th Birthday, Lydia!

Welcome to your double digits era!

Morning breakfast treat at McClain's when we went to pick up her cakes.

These girls made personalized pens, got manicures,

and ate that chunky cookie cake!

We celebrated with family, Robux, and more cake!

Lydia's new adventures with Scoliosis.

Finally writing the update that I've been holding on to for a long time because I don't like it and it's been really hard for me to talk about. It's a year since we first started on Lydia's scoliosis path, I still don't like it and now I can champion it, teach you all about it, and most importantly, advocate for her.

As you know, Lydia has 22q11 and it affects the midline of her body. What's more midline than your spine? Through her entire life her endocrinologist and pediatrician have kept a watchful eye for scoliosis. Last year I had been noticing some muscle that was more pronounced on the left side of Lydia's spine. At her June 2024 appointment with endocrine we updated x-rays and the measurement of curvature was around 22 degrees. We were then sent to the orthopedic clinic for closer monitoring. We saw them in September and went over treatment options for when the curvature reaches 25 degrees. Then in March 2025, with new x-ray evidence, the time has come to implement those treatments for her 27 degree curvature.

There are two paths. The one not recommended and not very scientifically backed option, which is daily intensive therapies and exercises with expensive equipment or daily trips to the singular provider in the metro area. Even if it did work and was recommended, how are we going to swing 1 hour of therapy and exercises with a 10 year old? It's not as fun as dance practice and riding a bike and it's daily and cost prohibitive. The other recommended and scientifically backed option is wearing a scoliosis brace. So away we went on a new medical adventure and here is our path.

1. New x-rays and getting measured and fitted. DONE.

2. Pick up the new brace and make any adjustments to it. APRIL 11.

3. Work on wearing it a few hours at a time and build up to wearing it 18 hours a day.

4. New braces will be made year over year as Lydia grows and develops.

5. This will be worn 2 years post first menstrual cycle, so into high school most likely.

Lydia will sleep in it and wear it to school and for most of the evening.
Lydia will remove it, with assistance, for PE, dance, swimming, and other similar activities.
Lydia will wear a seamless tank under it and her clothes will fit over it.
Lydia may need to take it off or adjust it to do basic things like use the restroom.
Lydia may need seating options in school due to the fit and limitations of it.

The brace will not fix or cure Lydia's scoliosis. The absolute best case is that the curvature does correct itself by a few degrees. The absolute worst case is that the curvature continues to get worse and reaches 45+ degrees and Lydia would need surgery to place rods to straighten her spine. The typical outcome is that the brace is worn as prescribed, keeping the curvature from worsening too much and too quickly through the main growth years. The hope is that Lydia grows and her spine maintains it's 25 to 30 degree curve and doesn't worsen too much more.

Here is a link that provides a quick overview. Lydia's scoliosis is idiopathic and we know that it is more common in 22q11 kids.

https://www.hopkinsmedicine.org/health/conditions-and-diseases/scoliosis

Here is a link to the type of brace Lydia will be wearing. She picked out the blue swirl pattern you'll see in the picture and hers will have front closure straps. Also, they inserted a monitor that detects body heat so we know exactly how many hours a day it is being worn.

https://www.childrenshospital.org/treatments/scoliosis-bracing

I'm better at talking about this so feel free to ask questions if you want to learn. I'm pretty much over the grieving period that made me cry a lot. That is my normal path with all of Lydia's diagnoses. You'd think I'd be better at it all by now but I'm only better at recognizing it is my path. It's just another thing that will make her different, or let's say unique, approaching middle school years. The need for this, the brace, the wear time - that's the easy part I think. Lydia can manage all that, she triumphs over hard things. It's the middle school mean girl routine I'm most worried about for her. You hear that kids these days are kinder and more inclusive, well, here's hoping!

Right now we are battling skin breakdown on her hip bones and along the bottom of her breast bone where her sternum wires from open heart surgery make it protrude.

Thanks for reading and not taking it poorly that I needed to write this to you a year after the fact.

I only have one picture of her in the brace when it's not covered up. She's adjusted to it beautifully and rarely ever complains. What can't this girl do? She's been dealt a difficult hand and I like to believe that it's all building her up to change the world one day.

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.

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.

Friday, June 13, 2025

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!

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!