After the Thanksgiving festivities had wrapped up, Anna was back to JMU and Jared would soon be headed back to CU Boulder for a few weeks until Christmas, Lilly and I hopped in the car Sunday evening and drove up towards Philly (avoiding Thanksgiving traffic by leaving late) and spent the night in Delaware for early morning appointments at CHOP for Lilly's 6-month followup after her last VEPTR surgery back in May. (our originally scheduled followup appointment got shifted because Dr. Anari was on paternity leave! So excited for his wife and him and their new little baby girl!)
Early Monday morning, we got new x-rays and spent some time with Dr. Anari reviewing them and talking about how Lilly has been doing. The x-rays confirmed that she has reached skeletal maturity, that her remaining two VETPR rods are looking good, that her spine is, indeed, auto-fusing and therefore the ridigity of her curvature keeps her thoracic cavity adequately expanded without the third rod that they had to remove back in May. Her declared her officially a "VEPTR Graduate" and feels that, barring any complications, loss of pulmonary function, or hardware malfunctions, she will only require annual check ups and xrays from this point forward! The rods will stay in as long as there are no problems, with no need for further expansions.
We next saw Dr. Mayer, the pulmonologist. Lilly's pulmonary function test (PFT) administered that morning showed that her pulmonary function, while low, remains stable. Her lung capacity and air flow are still only about 30% of what they should be for someone her age and her size (based on her wing-span height, which is a good measure of what her height might have been without her scoliosis and shows that her scoliosis has really taken a good 8 inches off of her actual height). But, her daily functioning isn't severely compromised by this fact--she was able to take part in a Turkey Trot 5K on Thanksgiving, walking and occasionally running, she does weekly horseback riding, and she rarely gets sick and recovers in a normal amount of time when she does, showing good pulmonary reserve. We are grateful for the fact that she does so well considering how low her lung capacity is. We know this is not something to take for granted as many of the kids with severe spinal deformities like Lilly have much more serious lung issues that can severely compromise quality of life. Dr. Mayer also felt that there is no need for him to see her unless she exhibits any marked decline in pulmonary function, and that annual PFTs when she sees Dr. Anari will be sufficient to monitor her status.
All in all, great news. Praise the Lord for Lilly's official "graduate" status! It was good to be at CHOP, though very weird to be there and not be preparing for surgery the next day!
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| Pulmonary Function Testing |
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| Lilly with Dr. Anari |
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| Sleepy girl as we arrived to CHOP that morning. |
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| A dreary morning, but CHOP is always bright and cheerful! |
