Archive for Updates

Ready for recovery

2017-06-02 09.07.50

Miriam was released at 10:30 this morning. She woke up chatty and cheerful, and other than an unpleasant bandage change kept in good spirits. We took a quick trip to the playroom, and were able to attend a children’s prayer service in the chapel before heading home. She’s glad to be home with her sisters and grandparents and her own bed. Recovery will probably take a little longer than usual due to the size of her incisions, but the swelling on her shoulder has already disappeared.

2017-06-02 09.11.12

Expansion and Cradle Exchange

Miriam was in a good mood as usual for our early arrival at the hospital this morning.

2017-06-01 07.21.49


After we got her undressed, we took a look at the spot where the end of her rod was protruding, and it was significantly more prominent than even a week ago. It is the oval-shaped lump on her right side, halfway between her spine and shoulder blade. (The smaller, bonier lumps on her lower back are also hardware attachments, but they always look like that and are secure.) We brought it up with Dr. Williams, who promised to take a thorough look at it in the OR.

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On the left, here is the x-ray from her pre-op visit to his office last week, with last year’s x-ray on the right for a comparison. You can see how much less bone is inside the top of the long rod in the newer image, and how much closer it is to the surface of the skin.

2017-05-23 14.22.33

After the operation, Dr. Williams let us know that her hardware had not come loose, but it had deformed the rib so much that the attachment cradle was aggravating the overlying skin. The swelling was a bursa (a fluid-filled sac) that her body was forming over it in an attempt to protect itself. He knew this wasn’t a sustainable situation, so he removed the cradle and attached a new one to the next rib down. This required some searching for a suitable spot, as the ribs in that area have largely fused together due to the stress of the hardware. Because the distance between attachment points was shortened, he was able to retract the rod a few notches. This means that instead of replacing the entire rod, we have actually gotten back more time with this one and we can wait longer before eventually replacing it. He was also able to expand her rib-to-rib device as usual.

Because of the need to remove and replace the cradle (and to find a new attachment point), Dr. Williams had to make a large incision around her shoulder blade. This was the biggest incision since her initial implant. Knowing it would be very painful, he attached an On-Q Pain Pump to the area. It bathes the incision area with anesthetic to reduce the nerve activity so less pain medicine is required. He let us know it would be attached for at least 24 hours, so we were in for an overnight stay.

I took the opportunity to thank Dr. Williams for listening to our concerns and taking the time to follow up with them in the OR. We have heard several horror stories recently of other kids similar to Miriam who have developed complications which could have been minimized if caught early, but which have turned into catastrophic events because doctors ignored parents’ concerns. After I thanked him, Dr. Williams answered, “I always listen to moms!” As any parent can tell you, especially of kids with special needs, we really do know our kids better than anyone else, no matter what their expertise, and we really appreciate having a doctor who trusts us.

Unsurprisingly, the recovery room wasn’t easy for Miriam today. She had a hard time getting comfortable, and the medication was giving her double vision for a while. Sprite and a grape popsicle made things a little better.

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Once we got up to a room at 2, she was ready for lunch. She ate normally, enjoying pasta and meatballs and Coke for a special treat. Soon we had visitors: her wonderful Godmother, than her amazing grandparents (visiting from New York) and her sisters. And of course, balloons and presents.

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2017-06-01 15.23.08This has definitely been a harder day one than most of her other procedures. She has struggled more to position herself, and despite being very tired didn’t manage to get to sleep until after 11. Thankfully she had lots of new activities and Mary Poppins on the DVD player to pass the time and distract her. The plan is to go home tomorrow after the Q-ball has run its course, as long as everything still looks good. I know she’ll sleep better in her own bed, and her sisters will keep her mind off the pain much better than a TV. She is hoping to make it over to the playroom here before we go, because otherwise our stay wouldn’t be complete.

Please pray for her total healing, and for her comfort over the next few days. We are so blessed to have her grandparents here to help, and her other pair of grandparents coming on Saturday. No matter what trials she endures, Miriam knows she is loved and in God’s hands. Thank you.


Expansion #9

Miriam's First Communion

Miriam will have another expansion tomorrow morning. This one may be routine, which would mean a short surgery and an outpatient stay. However, her long rod has started eroding the rib where it is attached near her shoulder. The attachment point has become more prominent under her skin, but the rod does not feel loose and she isn’t in pain. Her orthopedic surgeon could not tell based on the pre-op x-ray how much it has moved, so he will be investigating during surgery tomorrow. If the attachment seems loose or in danger of eroding through the bone before the next surgery, he will go ahead and exchange the rod for a larger one and re-seat the attachment point on a different rib. In that case, she will be admitted for observation and stay overnight. If the attachment still seems secure, he will only expand the existing rod, and we will plan to exchange and re-seat the rod next time since she has nearly outgrown it.

Miriam is missing the last day of second grade for surgery, but she is ready to move on to third grade. She brought home literal piles of work from school over the last few days, and we are always amazed by her creativity and her maturity in writing. We’ve had lots of big events in the family in recent months: Miriam and her cousin Kate both received their first communions, we traveled to New York to witness the ordination of her grandfather as a deacon in the Catholic Church, and we attended the baptism of her newest baby cousin. God has been good to bring many joys to our family, and we pray Miriam will bounce back from this procedure quickly so she can embrace all the new adventures of summer. Thank you as always for your prayers and support.


Miriam’s last expansion in November went perfectly. She healed well and was back to herself in time for the holidays. Her health has been good so far this winter, except that she has begun to make a lot of noise in her breathing while she is asleep. Sometimes it has sounded like typical snoring; other times, it has sounded raspy and there have been strange clicks and pops. We are hyper-aware of any strange noises from her airway because of the fibrous granuloma that grew in her larynx after her first VEPTR surgery which nearly choked her to death. Thankfully it was removed and has not been a problem for the last three years, but as the strange noises continued we decided to take her back to the ENT for an evaluation. Based on some recordings of her night breathing, he decided she probably has enlarged adenoids and ordered an x-ray to check. When the nurse called with the results, she said that according to the doctor’s notes Miriam’s adenoids were not only enlarged, but “enormous.” So tomorrow morning she is scheduled for adenoid removal, as well as a scope of her throat to make sure there is no change in the area where she previously had that growth excised. Please pray that the procedure goes smoothly and her breathing and her sleep will be improved because of it.

In happier news, Miriam’s amazing imagination led her to win first place in the entire district at the second grade UIL creative writing competition. She never ceases to awe us with her brilliance and creativity, not to mention her fantastic attitude despite all of her procedures.

2017-01-21 08.26.34

Expansion #8

It’s hard to believe it’s that time again, but Miriam is headed in for her next expansion in the morning. She has done really well for the last six months. Her health has been great, she’s keeping up in growth with her younger sister, and she’s been active and energetic at home and at school. This surgery should be a routine expansion, with only two small incisions performed outpatient. Please pray to avoid any complications so she can bounce back in plenty of time for the holidays.

In absence of other news, I always like to share cute pictures to show what a joyful and peaceful life Miriam has despite the unique stresses of her life. Here she is receiving a Pride award from her school for her excellent behavior and attitude.


And here she is with her sisters, dressed up as Hermione Granger for Halloween.



Expansion #7


Field Trip to the Thinkery

Field Trip to the Thinkery

It’s hard to believe another six months have passed, but it’s time for Miriam’s next VEPTR expansion surgery. There has been very little medical news to share about her since her last expansion and exchange, because she has been feeling great! She has only complained once about soreness a week ago; this is so much better than some previous expansions where she has been aching enough to need tylenol for the weeks leading up to surgery. She has been feeling so good that she has been able to have a pretty normal seven-year-old life as she finishes first grade. She has been running laps around the track for her school’s running club and actively participating in PE. She performed in her third ballet recital, a version of Alice in Wonderland, where she was a white rose with her sister Hildi. (Cecilia was an excellent audience member.)

Wonderland ballerinas

This surgery, scheduled for tomorrow morning (May 22), should be as simple and straightforward as possible. There will be a small incision over the middle of each VEPTR rod, the expanding device will crank each rod a few millimeters longer, and the surgeon will sew her up again. We should be home from the hospital just after lunchtime. Of course, prayers for her protection from complication and infection and minimal pain while the incisions heal are greatly appreciated. Thank you!

Expansion #6 and first Exchange/Revision

Miriam did great this morning throughout the check-in process. She was excited and happy to head to the hospital (she’s been looking forward to it for weeks), and even tolerated the “B’air” warming gown better than ever before. In surgery, her doctor expanded her spine-to-rib VEPTR a few millimeters as usual and exchanged her rib-to-rib device on her side for a new larger one. He had told us he was planning to open up her large incision (from the initial placement) in order to remove the old rod, but while in surgery he decided to try a less invasive technique. He created small incisions near the top and bottom of the rod, disconnected the middle of the rod from its rib connectors, and used a chest tube to surround the rod and pull it out. He then used the chest tube to place the new rod and secured it to the connectors. He told us to expect soreness from all the movement around and under the tissue, but we’re grateful she does not have a new huge incision to heal.


She had a rough time in the recovery room (which is normal for her; morphine makes her cranky and itchy), but once she got to her own room and got her lunch she started feeling much better. Since 1 p.m. she has eaten three large meals, gone for two short walks, and visited the play-room for some art time [well, mostly art-directing Mom doing her work for her]. She has had some complaints of pain but no worse than when she has had to have her connectors re-positioned in the past. She will see Dr. Williams one more time in the morning, and as long as everything is clear we should be home by tomorrow afternoon. She will probably stay home from school for the rest of the week until she feels good enough to get off narcotics. In the past she has switched to regular Tylenol (alternating with Ibuprofen) in just a few days, but her doctor has warned we will probably have a longer recovery time this time around.


We have not updated in a while, so we should add that Miriam is in first grade now, and will turn 7 in January. She qualified to enter into the Talented and Gifted program at her school, so starting in the new year she will get to choose an independent project to research and present. She loves to create things; as soon as she comes home from school she runs off to the playroom to start drawing or writing another idea. She has lots of friends at school, but her best friends are still her sisters and her cousins. She continues to learn ballet and started in the higher level class this year (though she will be missing the next several weeks while she heals). The last six months she has been blessedly healthy and care-free, and she has had a lot of fun. Here’s an example: her grandmother made all three girls Powerpuff Girl costumes for Halloween. We’re hoping she’ll get back to playing with her sisters like this soon. Thank you for all your prayers and support.


Expansion #6

This is just a quick note to let everyone know that Miriam is having her sixth expansion surgery tomorrow morning (Monday, Nov. 30). There is a good chance she will also have her first exchange, where one device is removed and replaced with a larger size. The rib-to-rib device on her right side is nearly fully expanded and may not have enough room left to get the necessary growth this time, so Dr. Williams may have to take it out and replace it with the next size up. The attachment points on her ribs don’t have to be removed; they stay in place and only the rod between them is exchanged. This will be nowhere near as intense as her initial placement surgery (no separating ribs, no hole in the chest wall, no extended intubation), but if the exchange happens it will mean larger incisions and possibly incisions in new places. If she has the exchange we will likely stay overnight in the hospital. If her doctor just performs an expansion we should be home tomorrow afternoon. We’ll share a more extensive update after surgery. Thank you for your prayers and support!

Expansion #5 update

Thankfully there is not much to report about Miriam’s surgery today. Dr. Williams expanded both veptrs about 1 cm and was done within 2 hours of Miriam heading back to surgery. We were able to bring her home before noon. She had a bit of a rough time coming out of anesthesia in the recovery room, but was feeling well enough to color and play gently with her sisters in the evening. She seems very happy to be sleeping in her own bed tonight.

She was excited to be at the hospital this morning, as you might be able to tell from this video of her waiting to go back:

Expansion #5


The last six months have probably been the easiest and healthiest of Miriam’s life since before she started surgeries. She seems much more comfortable since Dr. Williams moved her long VEPTR up a vertebra at the last procedure. She has only complained of pain once or twice in the last month, which is a huge change from the lead-up to her previous surgeries. In the past, as we got close to time for another expansion, she has complained often of soreness around her devices and has acted worn out in the evening. This time, she still seems comfortable, and her energy level (even with the business of kindergarten) has been great.

Cinderella Snow Angels

Among her recent accomplishments, she danced in a ballet recital with her sister Cecilia. It was a production of Cinderella, and they danced as the snow angels that arrive with the Winter Fairy. We tried to take a picture of Miriam’s back to show off her scars in her costume, but they are hardly noticeable! We thank God for her body’s incredible ability to heal, and pray it will continue to recover quickly from each procedure.

VEPTR back!

Her next surgery is scheduled for Monday, May 11. This time her doctor anticipates a simple expansion on both devices. This is great news, as it means she will need only a small incision over the middle of both devices – just enough to fit the tool which is used to ratchet the devices out to expand the ribs. This surgery should be outpatient, and we should go home Monday afternoon if all goes well. We were able to do outpatient surgery just once before, and Miriam bounced back in only a few days. We pray it will go as easily this time, and as always that she will be protected from infection or other complication. She has shown almost no anxiety, though she is fully aware of the coming surgery and what it entails. We are so grateful for her peace of mind and heart, and we pray it will stay with her as she continues to grow. Thank you all for joining us in these prayers!