Baby Blair’s beats are strong and continuing to get stronger

By Joey McWilliams

Angie Sullivan is spending her birthday today in Tulsa. She will be watching her daughter Brooklyn take part in dance competition and she said she is going to enjoy the day with her family.

Of course, she has spent the last couple of birthdays with her family. But each has had a different feel than this one.

Sullivan has been with her youngest daughter, Blair, on recent birthdays as she has dealt with heart issues since birth. Feb. 15 marked the two-year anniversary since Blair received a heart transplant and her recovery and growth have been slow, but sure.

“She’s doing very well,” Sullivan said. “The first year was a little rougher, but this past year has been really good.

“Every year, we have to do a cath procedure and they go in and they check her heart for rejection. That’s the main thing they worry about – her body rejecting the heart. We go the results back from that about a week ago and she is a 1R, which means they’re not going to change anything up for that. And that’s good.

Sullivan referred to the Acute Cellular Rejection grading numbers, which run from 0R through 3R. Blair’s number of 1R is a low grade and considered fair.

“That’s really good because they don’t think she needs medical changes,” Sullivan said. “Everything looked really good as they went in and measured the pressures on her heart and her veins. We were really pleased to get good results from that.”

Now 2 1/2 years old, Angie said Blair is progressing slowly, but steadily.

“She’s not walking yet, but she will pull up and walk around holding something. She does crawl everywhere.

“She still has a G-button (gastronomy button) for all of her feeding. It’s basically a button on her stomach and you hook up a tube to it and it puts milk directly to her stomach because she’s not very good at swallowing. She won’t take enough by mouth to give her the nutrition she needs. She is connected to that feed all night long, continuously through the night for about eight hours, and she has three feeds during the day.

“And we still do work with speech and physical therapy. We see them twice a week. And she’s getting better. She’ll eat a little bit of baby food by mouth and so we’re taking small steps forward.”

Blair Sullivan with some of the many Beads of Courage she has collected. Photo provided.

Blair has also been amassing a large number of beads during this time. As she continues to grow, it’s a collection she can look back on and see just how far she has come. The insert picture with this story shows Blair with some of her beads.

“These are called Beads of Courage,” Sullivan said. “She got a bead for every procedure she had while in the hospital. Like a black bead is for every time she got lab draws. The big bead is for the transplant. She got a bead for every time she got an x-ray, for every time she had a cath procedure and we’re not even caught up on all her beads.

“It’s kind of a cool program. The older kids love it because they can take that with them as they continue the process.”

Sullivan said she will enjoy the different direction this birthday is taking her and Blair and her family while watching another daughter dance. And she said she is very grateful for all the support the community has given to her daughter and her family.

“It’s just great to see how people have loved us and supported us through all of this and even today. People still ask me how Blair is doing and what’s going on. It’s something that you really only see in a small town setting like this and we’re really thankful for it.”