Gastro Visit

Today we finally had our visit with Dr. Devenyi, a pediatric gastroenterologist in Lancaster. He was highly recommended and lived up to his reputation for being kind, knowledgeable, and insightful. He was fantastic. He had a few suggestions for us to help improve Lily’s gastro functions. We’re going to try adding psyllium fiber to her flushes to see if that helps keep things moving. ๐Ÿ˜‰ Lily is also having an upper GI study done next Friday. Dr. Devenyi also explained that she could possibly have had a slight shift in the blood vessels that are behind the intestinal area, and that can also lead to reflux because of the compression of that area. This may have happened as a result of the spinal fusion surgery, which he said is not common but does happen sometimes when the spine is repositioned. I am sure I am not explaining all of this very well, but I think that’s kinda sorta what he said. ๐Ÿ™‚ ย She may also have to have an endoscopy if they think she has any esophageal damage due to the reflux, but that will depend on the results of the upper GI study. We will go back to see him in six weeks to see if things are getting better by using the psyllium and then make any changes at that time.

It is such a relief to at least have a start on solutions to this issue! Poor Lily has been dealing with this for so long now and I hope this protocol will bring some relief.

I would like to say Happy Nurses’ Week to all of the awesome nurses out there! We have been blessed to have many amazing nurses for Lily over the past four years and we are very grateful for all of you. We would not be able to have jobs, sleep, or do pretty much anything else without our home nurses. They take such good care of Lily and do other things like do Lily’s laundry (and even fold ours if needed). We are extremely grateful for all of you and everything you do every day!

Here are a few recent photos of the Lilster!

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Snuggling on the sofa bed for movie night! ย  Taking a walk in the park on a beautiful day!


Thank you all for your continued support and prayers. We love you!

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