Archive for November 2014

Expansion #4

Miriam’s surgery went as smoothly as possible today. She was so happy and excited as we went through the pre-op process this morning. We thank you for your prayers and thoughts. We know it is the grace and strength coming from all of you that protects her from fear and keeps her heart joyful. And Dell Children’s Hospital is such a gift to us. Here she is modeling the new gowns they have today:

modeling the gown

modeling the gown


Her surgeon was able to move the attachment point of her spinal rod up to the next vertebra so he did not need to exchange the device. Instead, he trimmed the existing rod a little and connected it to the new hook on the higher vertebra. This way he was able to get the usual expansion without having to adjust the length of the device. He mentioned that the other rod, connected rib-to-rib on her side, may need to be exchanged at her surgery in the spring, as it appears to be nearing the end of its expansion (although one more might be possible).

This afternoon she has had visits from her grandfather, her sweet Godmother, and her wonderful kindergarten teacher. She has a bag full of cards from her classmates, many coloring projects, a beautiful handmade bag full of crafts from her grandmother, numerous new toys, and six big balloons. No wonder this girl is always so brave for surgery – she knows the outpouring of love is always more than enough to cover the pain (and the drugs help, too).

We are spending the night to make sure pain is under control and then we should go home tomorrow. Right now she is sleeping peacefully so we seem to be on the right track for a morning discharge. As always, thanks for your love and support!

Miriam’s thank you letter


Miriam_thankyou1 1

Miriam was looking at all the cards and letters that you wonderful friends sent to her before and after her first surgery. She got an excited look in her eyes and said, “I have to write a letter!” After she finished, she said, “I don’t know who to mail this to!” I promised her I’d put it where everyone could see it. Thank you again to all who have supported her and prayed for her. We are so blessed to have you in our lives!

Here is the text in case you can’t read it:

“Dear all people that gave me cards at my 1st surgery

I will say a BIG thanks to evrey one of [continue] you. Espesley the ones that I know! <3 MIRIAM

P.S. I have another surgery on November 17th.”

Expansion (and more) coming Monday

We have not updated Miriam’s page for a while, but as anyone with a health issue knows, no news is usually good news. Miriam’s last expansion in May went very well, with no complications. She had a fun and easy summer. The highlight was definitely when she and her sisters got to spend a week with their cousins at their grandparents’ house. They called it “cousin camp” and had a great time. Now she has started school! She is in kindergarten, enrolled in a dual language program where her classes alternate between instruction in English and in Spanish. It is challenging, but she enjoys it and loves her teacher and her new friends. Here is her school picture (we can’t believe how old she looks!):



Miriam had a CT scan in October to check the volume of her lungs. Her last CT was done just before her initial VEPTR surgery, so this gave us a chance to see how much separating her fused ribs and inserting the VEPTRs has allowed her lungs to grow. Her doctors were all thrilled to see that her lung volume has nearly doubled in the (almost) two years since her first surgery. The rest of her has only grown a few inches, so proportionately it is a huge change. It was a welcome affirmation of our decision to go ahead with surgery. While the corrections made to her spinal curve are a wonderful byproduct of the surgeries, it is the lung growth that should likely most improve her quality of life and possibly extend her life down the road.

Three weeks ago, we visited Dr. Williams for Miriam’s pre-op visit and got some disappointing news. Based on her x-ray, and the fact that rod bump on her back has gotten more prominent, he thinks that the hardware that attaches the long rod to her spine has worked its way through the bone and is no longer anchoring her VEPTR. This means that in addition to the planned expansion, he will need to move the hook which anchors the rod to another vertebra. We are hoping he can move the anchor up to the vertebra above and shorten her rod to match. If for some reason that is not possible, he will need to move the anchor to the vertebra below where it is now. He would then replace the entire long rod, as the one she has now would need to fully extend to reach the next vertebra and would need to be replaced at the next extension anyway. We are of course hoping that she can keep the existing rod as that surgery would be less invasive and have a quicker recovery time. We won’t find out what will work best until she is in surgery, so please pray with us that it is as easy as possible for her.

Surgery is scheduled for this Monday, Nov. 17. The girls are excited because their grandparents arrived today to help. Here are a couple of cute photos of Miriam and her sisters from Halloween. Thank you so much for keeping Miriam in your prayers!

Cecilia, Hildi, and Miriam

Cecilia, Hildi, and Miriam

Halloween donuts

Halloween donuts