Fall update

I have been meaning to write this update for a little over a month now. So finally, here you go!

At the end of September we went back to Boston for another urology follow up. While we were there we also saw an oculoplastic surgeon, Julia’s  facial plastic surgeon, her hand and foot plastic surgeon, and her orthopaedic surgeon.

First up was the oculoplastic surgeon. We were referred to her from the opthamologist up there. She mentioned the possibility of putting a sling in Julia’s left eye to help raise her eyelid. We also talked about a type of lens that would have a hand painted iris to match her other eye. These are way down the road though. So for now we just let her be and continue to visit our opthamologist here in Charleston (who we think is great!).

Later that day was an appointment with Julia’s facial plastic surgeon, as well as her hand & foot plastic surgeon. We discussed the timeframe for her first surgery with them which looks like it would be sometime in early 2018. Her left two fingers will be separated, her left foot will be worked on, the left corner of her mouth will be made to close better (it’s rounded right now), and an area on her nose will be worked on. The good news is that Julia should not need to stay in the hospital very long, meaning we should not need to stay in Boston too long. While surgery is scary, Sean and I take comfort in knowing that she will receive the best possible care at a hospital who already knows how to  handle all of her requirements. We’ll keep you all updated as we receive more information.

The next day is the day we were most looking forward to, Urology day! The day started with some scans. Julia had an ultrasound of her abdomen, then we went to get an x-ray of her hand and foot for plastic surgery. She was a trooper for both.

Now during the x-ray, Sean and I were expecting to have an image taken of Julia’s spine. However after having the technician double check her orders, there wasn’t one requested, so off we went to see her orthopeadic surgeon. To be completely honest, we were a little disappointed with this visit. We like the doctor, but we did not feel he came prepared to the appointment. And when you are traveling from out of state for said appointment, you expect everyone to be prepared. Anyways, we reminded him of our concerns about a curve in Julia’s spine. He reviewed the images from our last visit and said that while there are some areas to keep an eye on, she is OK. He would like to get an MRI when she is about a year old to get better pictures, but nothing to do at the moment.

And finally, our favorite department! Dr. Borer and his team did their exam and went over everything with us. Julia looks great and everything continues to do what it’s supposed to. She still has some reflux of urine back into her kidneys, but the amount is not at a level to be concerned. We do not have to go back for a follow up until Julia is a year old. We just need to keep her healthy and let her continue to grow. While we will miss seeing our Boston family, we are thrilled to know that Julia is doing so well. Keep it up princess!

6 months

Half a year. I cannot believe our little princess is 6 months old today! She loves to smile, be held, grab your necklace or hat or glasses, play with her big sisters, sleep on her side, take showers, talk, jump, and dance. She has a little tooth making its way on the bottom, and is getting the hang of eating baby food. 

Since my last post we have seen a few more specialists here in Charleston. We met the dermatologist that came so highly recommended, and we love her. We also saw the local ENT doctor, and ophthalmologist. So far Julia is doing great. 

Later this month we will be heading back to Boston. It’s going to be a busy couple of days for Julia. We’ll start our trip off with a visit to three different plastic surgeons, a maxillofacial doctor, have some imaging done, meet with the orthopedic doctor, and finally wrap up our visit with our favorite urologist. We will update you all on how everything goes. 

Thank you for following along with Julia’s story, and of course for keeping her in your thoughts and prayers. 

If you have Instagram, feel free to follow me for pictures of my little family (torisc). 


Did you hear? Boston Children’s Hospital was ranked #1 again by U.S. News & World Report. Not only that, but the Urology team was ranked #1 too! We certainly aren’t surprised. In case you can’t tell from our posts, we may have fallen in love with Boston Children’s Hospital. There are some great superstars providing outstanding care to families just like ours.

Speaking of superstars. We have our very own superstar living with us. After Julia’s surgery Dr. Borer approached us about being interviewed for their website to help inform other families about bladder exstrophy, and hopefully help parents make a decision about care for their child. Sean and I of course said yes. Well the story was just published today. You can view it in two different places on Boston Children’s Hospital website. The more in depth story is under Patients’ Stories, and the other is under their Greatest Children’s Stories. Feel free to share these stories on your social media sites. The more we share them the more informed people will be, and hopefully parents like us will feel a little better knowing that they are not alone.