Archive for August 2013

VEPTR awareness day

The folks over at the Room to Breathe Foundation and the Titanium Rib Foundation are celebrating “VEPTR Awareness Day” today across the country. They want to make sure all children who could benefit from this technology, as well as their parents and doctors, know that help is available. We will celebrate by sharing this video made just a few weeks ago to celebrate the 25th anniversary of the first rib implantation. The people speaking are some of the first to undergo the surgery, and their stories are heartfelt and hopeful.

Miriam is currently having a great time visiting her grandparents in Michigan. We’re grateful for this relatively healthy time, when she is able to play outside like any other kid.



Hope for Miriam’s Throat

Six weeks after Miriam’s expansion surgery, we started hearing some irregularities in her voice indicating that the polyp in her throat might be re-growing once again. She has already had the growth removed four times surgically, and her ENT has had no advice on how to keep it from returning except to put her on a steroid inhaler. While this seemed to slow the growth of the polyp, he did not expect it to grow at all and was surprised to keep seeing us. Something more is clearly going on. We decided to get a second opinion, as Miriam cannot continue to have surgery every six weeks. This week we consulted with a new ENT, a throat specialist named Dr. Cheung-Phillips at Capital Otolaryngology. Dr. CP was very friendly and patient, listened attentively to the background of Miriam’s story, and asked many appropriate questions. She performed a videostrobolaryngoscopy, which used a stationary camera on a stick that sat on Miriam’s tongue to record a short video of the movement of her vocal cords. Miriam did not enjoy the procedure, but it was over in less than a minute and was certainly preferable to having a camera sent through her nose or being put under anesthesia again. And she got to go choose a prize from the prize tower while the doctor went over the video with us. There was some irregularity visible on one side of her vocal cords, probably in the same spot where she has had the polyp removed repeatedly. Additionally, Dr. CP saw clear signs of reflux (swollen & red throat surrounding the vocal cords), which can cause polyps, or in Miriam’s case perhaps cause one to return. Miriam has started taking Pepcid to see if it can reduce her stomach acid and give her throat a chance to heal. We will return to the doctor in two months to re-scope and check her progress. We are praying the polyp will resolve itself this time, or if it needs to be removed surgically, that removing the reflux will allow it to heal completely.

Follow-up from First Expansion

This has been an extremely busy two months for our family, so we apologize for failing to post after Miriam’s first expansion in June. The surgery went beautifully. Miriam was really comfortable with the routine of waking early and checking in at the hospital. Her dear friend Miss Emily (the Child Life specialist) arrived in time to talk with her and escort her into surgery (with a dress-up game on her iPad, of course). Dr. Nowlin, Miriam’s ENT, began the procedure by scoping her throat to check on the polyp in her vocal cords. Though she had been having hardly any symptoms, there was a small lump in the same place as seen in the previous endoscopies, and Dr. Nowlin removed it. Then Dr. Williams took over and expanded Miriam’s two VEPTRs. He was able to get good expansion within the rib-to-rib device, and was able to move the spine-to-rib device up so that there is no longer any tail sticking out. This left her back much smoother, with hardly any protrusion of the end of the device. You can see the expanded devices and the improved position of the long rod in the x-rays below.


Miriam’s recovery was very fast. She went home from the hospital that afternoon and was back to herself after only a few days. It was a big help that Abeea and Papatoes, her grandparents, came to visit and take care of us. The adjustment of the spinal rod position has made a world of difference in her comfort level with the device. She used to complain of pain anytime she sat in a hard-backed chair or her car seat for more than a few minutes, and that no longer seems to bother her. Dr. Williams also got very good muscle tissue to close over the incision site so the scar is much more solid than last time.

We were very grateful for her quick recovery because shortly after surgery we made a huge life change for our family. We moved into our first real house! Until just a few weeks ago the five of us (and our dog) were living in a tiny two-bedroom apartment. All three girls were crammed into one bedroom, which was sometimes a challenge during Miriam’s recovery from her initial surgery. Now we have four bedrooms, with one currently in use as a playroom. If there are times in the future when Miriam needs privacy and quiet during a recovery, we can arrange it so she has her own room.

One of the best features of the house is the swing-set left by the previous owners. Miriam and her sisters love having a yard, especially with swings. Here they are playing with Papteaux just a week after the expansion.