Alex and Maddy

Alex and Maddy

Sunday, June 11, 2017

Medical Update

The other post was much more fun to write, but I do need to also get out a medical update. I will keep this one pretty short.

Right before we left on the trip, we had a few major things happen. Alex had his CT Scan to try and look at the growth that was found during the colonoscopy. Unfortunately because Alex has such severe gastroparesis (dysmotility) we could not get any oral contrast in to him and they were not able to visualize it. He has another GI procedure on Wednesday with anesthesia to try and help his motility. Dr O was also going to talk to radiology and find out what we need to do to figure out what this growth is and what need to happen next.

As we were walking to the CT Scan, We ran into Dr. O and he stopped me in the hall. All of Maddy's testing came back. The good news is that she does not have Cystic Fibrosis or Celiac Disease and her motility is not as bad as Alex's. However, she is still having significant malabsorption. She eats over 2000 calories a day and has only gained one pound in a year. She is also chronically dehydrated. With all of that Dr. O has decided we cannot sit back and wait anymore. She will be having surgery on Wednesday to have a feeding tube placed. She will continue to eat (because anyone who has ever been with Maddy knows she LOVES to eat) and we will use the tube to supplement her with a specialty formula that she can absorb. I had hoped not to travel down this path with Maddy, but am hopeful that she will feel better and start to make more progress in therapy!

Please pray for this Mama's heart on Wednesday as I hand over both of my babies to the anesthesiologists and Dr. O and Dr I.

Ali

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