Thursday, July 30, 2009

Gastroparesis - Update


I realize that the "Spreading Joy Corporation" blog may not be the "best" place for these types of update - but if just one other person can relate to what Megan is going through and it helps them to find joy in their journey, then it is worth it to me. Besides, if we can't talk about every step of our journey with friends, family, twitter friends and such - then who can we talk to them about? If you are here, you are at the very least a friend.


Here is the latest on Megan and where she stands.

The Doctors office did finally call and Megan did show some digestion on her scan this past Wednesday! Now, its not a lot, but it is a start.

He is going to continue her medication, deep relaxation and pain management techniques. The relaxation and pain mgmt is due to the fact she has been removed from ALL pain medications as they tend to relax her stomach and we need it to contract. Also - the insurance has denied the zophran - which helps to ease the nausea caused by the extremely strong antibiotic that she takes 3 times a day. They will not even approve 1 a day - only 24 for the month and she needs 3 a day. We are in "official" appeal mode but that could take a month.

She has also got to learn to "relax" (in a good way, not medicated) her stomach before eating so that it can do what it needs to do.

She has been eating a few ounces of pudding and yogurt and while it "hurts" her to eat it, she is keeping it down. She is now up to mashed potato type food for the next few days and then we can ease her into more of a solid after that continues to do well. Being the typical teenager that she is and the fact that she loves to eat, she really wants pizza. If she continues to keep down 2-3 ounces of mashed potato type soft solids, then we will get her a very small slice of pizza that she will take an hour to eat.

Jeff over at Bear 2 Care 2009 has issued his readers a challenge to stay away from pizza for 5 days to encourage Megan - to let her know that she is being thought of and prayed for and a time will come when she can have pizza again. It's a goal to shoot for!


Her next appointment is Aug 26th and I am concerned that the pain of eating that has been there for 2 years is still there and wonder if/when it will ever go away...and if this wasn't one of the "causes" to begin with. Also she will be starting school around that same time. Right now she lays down and completely relaxes 35 minutes prior to eating and will not be able to do that when school starts. We need wisdom and direction as to what to do for her for that.


Thank you for your prayers, tweets and emails of encouragement. You keep us going! My princess has such a long way to go, but I know she will be one amazing lady on the other side of this! She already is!


Photo: Megan playing w/statue at last Dr. Visit

4 comments:

Ronnie "Sickboy" Sharpe said...

You daughter is still in my prayers and I hope that her stomach starts to "work with her". I had to make some major dietary changes as well and it's not fun :(

Ronnie

David said...

It is finding joy in times of difficulties that usually distinguishes what true joy is. I commend you for sharing your joys in even the smallest things.

We continue to pray for Megan, and am thankful for the progress. We believe and hope for a full recovery prior to school, so she may enjoy school and friends without any worries and pain.

Take care,
David

Marie said...

@Ronnie Thank you so much! I can't believe that you have to deal with Gastroparesis in addition to all the other things on your plate. I'm in awe of your strength and you continue to encourage me. Thanks for praying for her and for coming by and encouraging!

@David this has been one of the hardest trials we've ever had to go through but there is still joy in the journey. We work hard to notice the blessings through disappointments. Thank you for your prayers for Megan! We are encouraged by it.

susan lani said...

You know I am continuing to pray for Megan. Saying a prayer right now.

 
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