LIVing with Diamond Blackfan Anemia

02/07/2022

Liv and I like to look to see where her blood came from. Today’s blood is from TX- she was excited and thinks maybe it is from Aunt Teri or Uncle Grover! ❤️❤️❤️ Whoever it is from in Texas we are thankful ❤️❤️

01/13/2022

Lots of extra tests lately- she is a champ though!

01/13/2022

We have been so busy- I just wanted to give some updates and share some pics!

Liv was a busy girl at her last transfusions of 2021! She was so excited to get a bag of things made by a mom of children at her school- she just loved everything and had so much fun with it! We are so lucky to have so many people that care about her! Thank you so much Jill Min - we really appreciated it and it was so nice of you!!!

Liv also decided to go in her unicorn costume from Aunt Charlotte Cantrell Wagner at one of the transfusions (she just loves it and wears it all the time) and wore her antlers to her transfusion before Christmas! :) She was so excited to take Christmas cookies to all of her nurses and staff before the holidays as well.

Things have been pretty much the same with her transfusions. We get worried when we see all of the blood shortages right now but so far there haven't been any issues. Elle wants to coordinate a blood drive in Liv;s honor - we need to find a location willing to let us do this though- so tbd.

Liv's iron levels were not good for so long but all of her testing so far has come back normal (hearing and heart). She still needs a CT scan done where she will need to be put under anesthesia. We need this done to make sure none of her other organs have been affected but we are still working to get that coordinated at the hospital. We finally found a way to get her to take the medicine every day to lower the iron levels and we were very happy to hear they are finally starting to come down at her last appointment!

After two years of being so careful Covid finally hit our house over Christmas break. We spent the break quarantining and had a LOT of together time. We were so lucky though- Liv did not get it and the other cases were mild. Thankful that we are all vaccinated and Tim and I boosted! Not the greatest start to the year but not the worst we have had. ;)

We hope everyone else is off to a great 2022! Wishing everyone good health and happiness!

xoxoxo- Tim O'Connell and Meg O'Connell

09/20/2021

This stuff is AMAZING!!!! One of the worst parts hands down of all of the things Liv goes through physically used to be bandages removal. It was sooo painful for her! She would scream and cry so loudly.
I came across this as a recommendation on another site and bought it on Amazon immediately! It works SO well!
Everyone at the Children’s hematology department at Beaumont was so impressed by it that they are in the process of getting it approved to use there now for all of their patients! Liv was even chosen to be in a video of how to use it for the staff and how it works!

It makes us so happy to know that other children will be in less pain now along with Liv! We are counting this as a big win in this journey - it is the little things that are so big to us! ❤️ 🤗

08/27/2021

Miles is joining Liv today - he needed a blood draw/visit with their hematologist and she needed blood before school starts on Monday! She is so excited for Kindergarten!

06/14/2021

Today is World Blood Donation Day! Just a friendly reminder that if you are able- please donate blood! ❤❤❤

06/14/2021

We just received the link to the Amazon Wish List for Beaumont Pediatric Oncology department. These donations go straight to the hospital for the children! You can find this site at any time also listed on the ways to help portion of the blog.

https://www.amazon.com/hz/wishlist/ls/26M00L5UW7HXK/ref=nav_wishlist_lists_1?_encoding=UTF8&type=wishlist

06/02/2021

Transfusion today with Gramps! ❤❤

06/01/2021

05/14/2021

05/11/2021

Currently transfused every 3 weeks. Happy 5th Birthday Liv- at her transfusion this week with her hematologist and nurses ❤

05/10/2021

Transfusions