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.

Service Project 2024

We had not done a home school service project in far too long and this year felt like it needed it, so the kids organized a food drive.  Little One and Middle Kiddo collected in our neighborhood and Big Girl at her school.  The food drive allowed each of our children to participate at their individual capacity from creating and distributing flyers to making calls to picking up and sorting donations.  It was also an opportunity to learn about hunger and food insecurity.  Next week, we will drop off 162 pounds of donated food  at our local food pantry. 

Thanks to our village, including our in-home teachers, neighbors, and the community at the home school school, for making the food drive a success.

IAC Sessions 614 to 623 Results

 The following referrals were issued in IAC Session 614 on August 1, 2024:

1) French dossier from February 2026 referred a male child aged 2 years and 2 months with a family history

2) French dossier from February 2018 referred a female child aged 8 years and 5 months with features in health status and a family history

3) US dossier from May 2023 referred sisters aged 10 years and 7 months and 7 years with features in health status

4) US dossier from June 2023 referred brothers aged 9 year and 4 months and 8 years and 1 month with features in health status

5) US dossier from July 2023 referred a female child aged 13 years and 2 months

6) Canadian dossier from April 2024 referred a female child aged 3 years and 2 moths with features in health status and a family history

 The following referrals were issued in IAC Session 615 on August 8, 2024:

1) US dossier from October 2019 referred a sister and brother aged 9 years and 2 months and 7 years and 7 months

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

 The following referrals were issued in IAC Session 616 on August 22, 2024:

1) Finish dossier from January 2015 referred a female child aged 1 year and 4 months with features in health status

2) Italian dossier from June 2020 referred a male child aged 8 years and 9 months

3) US dossier from May 2023 referred a female child aged 3 years and 7 months with features in health status and a family history

4) Canadian dossier from September 2023 referred a brother and sister aged 8 years and 11 months and 6 years and 7 months with features in health status and a family history

5) US dossier from December 2023 referred a male child aged 1 year and 8 months with features in health status

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

 The following referrals were issued in IAC Session 617 on August 29, 2024:

1) German dossier from January 2015 referred a female child aged 7 years and 3 months

2) Italian dossier from December 2022 referred a sister and brother aged 8 years and 8 months and 6 years and 5 months

3) Italian dossier from August 2023 referred a brother and sister aged 11 years and 9 months and 10 years and 2 months with features in health status

 The following referrals were issued in IAC Session 618 on September 12, 2024:

1) Cyprus dossier from December 2015 referred a male child aged 1 year and 6 months

2) French dossier from October 17 referred a female child aged 5 years and 7 months with features in health status

3) Spanish dossier from February 2021 referred a male child aged 5 years with features in health status

4) Italian dossier from June 2023 referred brothers aged 7 years and 1 month and 8 years and 2 months with features in health status

 The following referrals were issued in IAC Session 619 on September 19, 2024:

1) French dossier from September 2018 referred a male child aged 3 years and 7 months with features in health status

2) US dossier from April 2019 referred a brother and sister aged 3 years and 2 years and 3 months with features in health status

3) Italian dossier from March 2022 referred a female child aged 1 year and 8 months with features in health status and a family history

4) Italian dossier from August 2024 referred brothers aged 10 years and 2 months and 12 years and 6 months

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

 The following referrals were issued in IAC Session 620 on September 27, 2024:

1) US dossier from September 2018 referred a female child aged 1 year and 8 months with features in health status

2) French dossier from April 2023 referred a male child aged 7 years with features in health status and a family history

 The following referrals were issued in IAC Session 621 on October 3, 2024:

1) Italian dossier from November 2023 referred an identified waiting child

2) Italian dossier from February 2024 referred a female child aged 10 years and 10 months with features in health status and a family history

 The following referrals were issued in IAC Session 622 on October 11, 2024:

1) French dossier from June 2020 referred a male child aged 9 years and 5 months with features in health status

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

3) US dossier from September 2024 referred a female child aged 4 years and 9 months with features in health status

4) US dossier from October 2024 referred an identified waiting child

 The following referrals were issued in IAC Session 623 on October 18, 2024:

1) Canadian dossier from June 2017 referred a female child aged 4 years and 7 months with features in health status

2) Maltese dossier from September 2022 referred a male child aged 2 years and 4 months with features in health status and a family history

3) Italian dossier from November 2023 referred a brother and sister aged 11 years and 11 months and 10 years and 4 months with features in health status

4) US dossier from August 2024 referred an identified waiting child

Under One Roof 2024

Big Girl once again submitted an art panel to the annual Under One Roof exhibit at our local JCC.  This year, she was chosen for one of the Superlative Category awards.  Congrats to our resident artist.  She worked hard on this piece and it was recognized.

Busy October

I don't know why but sometimes you live through a month that seems busier than the rest and also busier than you had expected.  October was that for us this year.

We had...

1) Two IEP meetings

2) One driver's test

3) One long weekend vacation with friends

4) One art show opening with dinner

5) Three ballet classes

6) One visit to the zoo

7) One school open house

8) Two blood draws

9) One medical appointment

10) Two neurofeedback appointments

11) One photography class

12) One Daddy Daughter Dance

13) One performing arts event: Cirque Kalabanté: Afrique en Cirque

14) Halloween

15) Blink Cincinnati

16) Two dental appointments

And you know what we did after all of this?  We made November 1 a vacation day and gave ourselves a long weekend to rest... except, of course, for that additional blood draw and the impossible to miss ballet class because Little One keeps her own calendar.  Life is good.

Home Schoolers Don't Get Out Much...

 .... ummmmmm...

Just this week we had an art dinner/reception for an exhibit in which one of our kids has a piece on display, one community photography class through Artswave, two therapy appointments, volunteering, ballet class, a father/daughter dance, a teen hang-out party, a trip to the library, and we went to see a performance by Cirque Kalabante.

If only these home schoolers would get out more...

Girls' Birthdays 2024

The girls' birthdays have come and gone for the year.

We had a big surprise Sweet 16 party for Big Girl and I can still hardly believe that we were able to pull it off amid the renovations here.  I planned everything in secret and then we took Big Girl out to breakfast and to get a haircut and second ear piercings.  Meanwhile at home, grandma and auntie put up the decorations, helped the caterer set up, and welcomed in the guests.  It takes a village, of course, so we were thankful to our neighbors for letting the guests park in their driveways and to our Ms, Rie for watching Little One and Middle Kiddo before the party.

We kept it much smaller for Little One who was still reeling from the year-long construction here and invited only a few valued teachers and friends.

What are they like right now?  

Little One loves Dutch conductor Andre Rieu and opera singers Kimmy Skota and Montserrat Caballe (yes, she listens to opera for fun several times a week) as well as all kinds of music and dance from the latest releases to classical.  She dances daily at home and continues to take ballet at the Cincinnati Ballet where she has also announced her plans for future employment.  She has made great progress with self-help skills and communication.  She showers all of us with hugs, kisses and exuberant declarations of her love.  At her own insistence, she now sleeps in her own bedroom and sits with the family for dinner.

Big Girl is into all the trends in fashion, hair, make-up and contemporary music. She continues to pursue her interests in drawing and painting and has also added photography to that list.  She writes poetry, prepares her own lunches and breakfasts, and takes self-care rather seriously with long baths and yoga.  She makes her own spending money via regular babysitting.  Friendships are front and center now with sleepovers and hang-outs/outings and communication throughout the day.