Alex and Maddy

Alex and Maddy

Saturday, May 13, 2017

Trying to get back to Normal

This week has been all about trying to get back to normal. It has been really hard for all of us to get into our routine! Maddy was back to therapy this week and we had a few Doctor's appointments. On Tuesday, Alex had an appointment with Infectious Disease. She was happy with how he is doing and decided we are experienced enough at doing IV antibiotics that they don't need to see us weekly as previously planned. That was a nice surprise!

On Friday we saw GI with both kiddos. I was pleased that he had a plan on trying to sort out both. For Alex we are slowing restarting feeds at half strength. Dr. O is also going to increase his calories quite a bit in his TPN as he has lost 10 lbs since January. On Friday Alex will have some unpleasant testing to see if we can find a cause for some of his lower GI issues. Then Dr. O will piggyback on his surgery next Monday to try and manually remove some of the huge amounts of air in his colon. He may also perform another procedure depending on the results of Friday's testing.

Maddy has only gained 1 pound in the past nine months. She has also started vomiting at night. Dr. O wants to look at her with fresh eyes and make sure we are not missing something before assuming she has the same issues as Alex. He ordered a ton of labs, urine and stool tests. She will also have a sweat test to rule out cystic fibrosis and a gastric emptying scan. Based on those results he will determine the next steps.

Please continue to pray for us as we are all drained after the past month and have another tough week with the testing on the kids this week.


PS- Sorry for the short, boring update!

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