Friday, January 30, 2009

Another trip!!!

We got word yesterday that Ana has to go back to Cincinnati in four weeks! This trip was suppose to be the end of April, but after long discussions between the motility doctor and the neurologist... it can't wait. Ana will have a scope and biopsies done of the small intestine and they will do the manometry studies again. These are the studies she had done in August of 2007 in Boston. This study shows which exact parts of the intestine and stomach are working and how well they respond to food. Only certain hospitals have access to such testing.

The neurologist is going to start the blood work to figure out how much of the meds she is metabolizing. Shey and I are just thankful that everyone is finally being aggressive!

Ana's sleep study results are in and not great. Ana is not breathing off her CO2 when sleeping. This is a "not so good" change and is very common in this disease. As these kids lose muscle tone, they breath more shallow in their sleep. We are not sure how this is going to be treated until we meet with the pulmonologist on Feb. 12th. She may wait a couple of months and then repeat the sleep study, or she may put her on BiPAP. We weren't expecting a change like this... we know these things are coming... I guess you can never be truly prepared for these types of things.

Please pray about this trip and these signs of progression.

A fundraiser is in the works for April 18th. This fundraiser will help pay for the next years worth of medical expenses. We need everyone praying about this event! If you are local and wish to help in any way, you can e-mail me and I will get you in contact with the planning team. I will give you more details as they become available to me!


  1. So sorry to hear that your trip is going to be sooner then expected. I hope and pray that everything goes well. I'm glad that the doctors there in Cincinnati are doing a great job at trying to help figure Miss Anna out. I know I will welcome the same when we go because I get tired of doctors just guessing and throwing a medicine at us and telling us they'll see us in 6 months.
    Continuing to pray for Anna and your entire family.

  2. Hugs and prayers!! Can't wait to see you guys again!!!! When you come through KY I hope we have enough time to take some pics!!!!