Lydia’s photo shoot
Lydia has had another good week of baby step progress. She has been off her nasal cannula for a week and finally has nothing attached to her face! They are increasing the amount of formula in her G-tube and decreasing her IV nutrition in her PICC line and she has not had much drainage from her chest tube so hopefully it will be pulled on Monday. She is beginning to smile at us more and will even chat with us at times. We are still in pursuit of going to Children’s Hospital at Boston in the coming weeks so hopefully all he kinks will work out. I’ve been in touch with Dr. Foker who developed the technique used to grow the esophagus and has had much luck with doing a primary repair even in children with a long gap. His other specialty area is hypoplastic hearts so we feel he is the guy Lydia needs to see. He has basically retired but does do a few cases and has been wonderful in speaking with us. He returned an email to me from Tunisia and then called last Sunday night before heading to Cuba. He feels that a primary repair could be possible even with her spit fistula and heart condition. I am cautiously optimistic that this trip could be the answer to many prayers and Lydia might be able to actually eat normally by her first birthday!
If interested, here is the webpage for Boston that goes into more detail about the procedure.
And from her latest photo shoot – courtesy of her awesome primary nurse Noel who we hope we can take to Boston with us!
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