Another School Year On The Books

Friday was the last day of 8th grade for Little One and Middle Kiddo and the last day of 10th grade for Big Girl.  All three have done some very wonderful things this school year.

Big Girl joined the Patient Advisory Council at CCHMC and enjoys volunteering in this capacity once a month.  She got her driver's license and, after jumping through many bureaucratic hoops, received her adapted car.  She has been driving herself to school and other places since February.  Big Girl was also accepted into a state program called College Credit Plus and is already two weeks into her first semester at UC, taking an English Comp and an Art History class.  These classes will keep her quite busy for the next eleven weeks.  Finally, Big Girl has a regular weekly babysitting job with frequent opportunities for extra hours, so she has been able to keep herself in some generous pocket money, too.

Middle Kiddo has had many staffing changes this year and instead of two or three team members, the revolving door has brought him seven different teachers/therapists since August and a great number of lost instruction hours.  He has taken these changes in admirable stride and continues to be motivated to become more independent around our home.  We have enjoyed seeing him take the initiative on different tasks rather than rely on help and show real pride in his accomplishments. Middle Kiddo has been volunteering once a week since the fall as well.

Little One's improved health has allowed her to blow the objectives of two IEPs largely out of the water and to participate more fully again in the community. She had her best season and best showcase at the Cincinnati Ballet yet and has grown tremendously physically.  She continues to explore her interests in opera, classical music, and really all performing arts and is never bored as long as she has space to let her creativity flow.

Great job, kids, and now on to a fun summer... if it ever stops raining.

2025 Cincinnati Ballet Showcase

Another successful season of ballet came to a close for our Little One yesterday with the performance of her class in the 2025 Community Showcase.  She loves being on the stage as much as she loves to see others there and she is a natural performer.  I kept my tears at bay this time and and simply delighted in her talent and her captivating exuberance.

Before she got on the stage, she told us, "I'm gonna kill it" and when we met her after the performance her first words were, "I wanna do that again!"  Thank you, Cincinnati Ballet, for giving our girl so much joy, purpose, and belonging.

Spring Break 2025: Plans and Pivots

It had been over three years since we traveled by air, initially due to unexplained medical issues for one of our kids (eventually diagnosed as a platelet disorder and severe iron deficiency) and last year due to our home expansion and reno.  So we decided that 2025 was the year to get adventurous again.

Zion National Park

We booked non-stop, round trip tickets to Las Vegas and made a detailed plan for drives, lodging, food stops, sightseeing:

1 night in Las Vegas

2 nights near Zion

2 nights in the Grand Canyon

2 nights in Las Vegas

But the massive late and unusual March snow storm had us pivoting after 3 nights, re-routing drives and re-booking lodging.  We ended up needing a highway closure overnight stay in Kingman, Arizona, followed by one planned and one last minute added night in the Grand Canyon with a final single night in Las Vegas.  Even with all the changes, we had a great vacation.

Hoover Dam

When we travel, as a rule, we do not eat at chain restaurants, but try to visit one of a kind local places.  I enjoyed the best cinnamon roll I've ever had on this trip.

River Rock Roasting Company 
in La Verkin, UT did not disappoint

We also had stuffed Prickly Pear French Toast, a blue corn pancake, and a Warrior Navajo Taco at the Cameron Trading Post which tends to be busy with tour bus visitors unless you get there early which we did.  Such a pleasant experience and super friendly staff.

With all the re-routes, we logged over 1200 miles in the car on this trip and got to see a lot of great and varied scenery in Utah, Nevada and Arizona where the snow that mixed up our plans created a picturesque drive.

Our grand finale was the Grand Canyon where we visited the entire south rim from Desert View Point to Hermits Rest.  Due to mobility and safety concerns, we had to limit our on foot explorations to around Mather and Yavapai Points and used our rental car/ park shuttle to reach all other overlooks.  I did walk the short distance between Powell and Hopi Points on my own and Hopi Point ended up being my favorite view at the park.

Red Rock Canyon

On our final day in Las Vegas, we hiked at Red Rock Canyon, visited an impressive cactus garden, and enjoyed Luv's Custard.  We made it back home on a Wednesday at 6:00 am and went straight to bed.

There was one new state added on our mission to visit all 50: Utah.

The first trip of 2025 was a success!

UC Here She Comes

Ohio offers a program in which qualifying high school students can take college classes for credit that counts toward both their high school diplomas and their eventual college degree. Big Girl applied for this program at two local colleges and was accepted by both.  She just registered for her first two college classes for the Summer 2025 semester: Art History 1 and English Composition.

MOJ IAC Referral Results Sessions 624-629

 The following referrals were issued in IAC Session 624 which was held on November 1, 2024:

1) Spanish dossier from November 2014 referred a male child aged 8 years and 7 months

2) Spanish dossier from February 2016 referred a female child aged 4 years and 4 months with features in health status

3) French dossier from February 2018 referred a male child aged 10 years and 6 months

4) US dossier from December 2022 referred a female child age 2 years with features in health and developmental status and a family history

 The following referrals were issued in IAC Session 625 which was held on November 8, 2024:

1) Italian dossier from December 2023 referred three brothers aged 6 years, 4 years and 5 months, and 2 years and 4 months

2) US dossier from November 2024 referred an identified waiting child

 The following referrals were issued in IAC Session 626 which was held on November 22, 2024:

1) Canadian dossier from June 2023 referred a male child aged 8 years and 4 months with features in health and developmental status 

2) US dossier from November 2024 referred an identified waiting child

3) US dossier from November 2024 referred an identified waiting child

 The following referrals were issued in IAC Session 627 which was held on November 29, 2024:

1) US dossier from May 2026 referred a female child aged 3 years and 8 months

2) Canadian dossier from October 2023 referred a male child aged 4 years and 7 months with features in health and developmental status 

3) Canadian dossier from February 2024 referred a male child aged 9 years and 5 months with features in health and developmental status and a family history

4) US dossier from August 2024 referred a male child aged 2 years and 2 months with features in health and developmental status 

5) US dossier from November 2024 referred an identified waiting child

 The following referrals were issued in IAC Session 628 which was held on December 13, 2024:

1) Finnish dossier from April 2016 referred a male child aged 1 year and 9 months

2) French dossier from February 2022 referred a male child aged 6 year with features in health status

 The following referrals were issued in IAC Session 629 which was held on December 18, 2024:

1) US dossier from October 2020 referred a male child aged 3 years with features in health status

2) Italian dossier from December 2022 referred a male child aged 10 years and 2 months

3) US dossier from September 2024 referred a brother and sister aged 3 years and 3 months and 2 years and 6 months with features in health status

4) US dossier from November 2024 referred a male child aged 4 years and 5 months with features in health and developmental status and a family history

We See Her Rollin'...

It's been over three months since Big Girl got her driver's license.  Finally earlier this month the adaptive equipment for her own car was received and installed.  On Wednesday, she took her first solo drive to her weekly babysitting job.  There she goes!

Patient Advisory Council At CCHMC

There are no coincidences and Big Girl happened to be in the right place at the right time (and I should mention a place she did not want to be just then at all) and a single spontaneous conversation led to her being invited to participate in the Cincinnati Children's Hospital and Medical Center Patient Advisory Council.  After some consideration and with a healthy dose of her typical skepticism, she decided to join if for no other reason than to obtain 20 hours of community service for the Community Service Seal as part of the Ohio Graduation Requirements.

Last night was Big Girl's first meeting as a PAC member and she couldn't have enjoyed it more.  In this particular meeting, the Council was taste testing a full buffet of potential new menu items for the patient menu and also undergoing and evaluating the food ordering process from in-patient rooms.  We were told Big Girl suggested a picture menu for patients who cannot read or visualize the food choices via print.  She also noted that most kids she knows (herself not included) don't want broccoli or other veggies to touch their spaghetti and recommended serving the vegetables in a separate dish.

We're so proud of our Big Girl and thrilled for all the new opportunities that have come her way in 2024. She is working hard and her efforts are paying off.