Friday, March 23, 2012 2:46 PM, EDT
Okay...now that I have calmed down the situation is not as bad as I thought.
By the time I knew Ally's button had fallen out, it was too late to put another one in.
In reality we have not used her button very much in the last couple of months. If she does a good enough job eating, we have been letting her sleep without her night time feeds. We keep track of her blood sugar every once in a while, and they are always good, even when she has not had her feeds.
Daddy and I discussed having the button taken out at her next set of scans (which are in just a few weeks). It looks like Ally made the decision for us. I was mostly freaked out because I had not mentally prepared myself or Ally for the button to actually be out...it has been our blood sugar safety net, and we will still need to talk to the endocrinologist about low blood sugars. The emotional upheaval (on my part...Ally is completely fine with the situation) has passed, and we are looking forward to this new, unbuttoned Ally.
The doctor was fine with letting it close up, and just told us to put a band-aid over the hole. By the next morning the hole was completely closed up on her stomach. We will be cautious with it for the next week or so.
Ally has promised to step up her eating...our goal is for her to be 30 pounds by the end of the school year (she is hovering around 27 right now). Of course, as soon as she hits 30 pounds we will up the goal to 35, but she doesn't need to know that right now!
So, it looks like everything will be ok...on the up side, she no longer has to do the CT scan, so she won't have to drink the yucky liquid (we have always put it through her tubie, to avoid the yucky taste). There is always a silver lining....plus, Ally is REALLY happy her button is gone; she is starting to realize no one else has one, and there is something "different" about her...not sure how I feel about that.
Okay...that's all for now. Nothing exciting coming up. I will post if we have any new information; our next thing on the horizon is an MIBG scan sometime in April.
Happy Spring!
Okay...now that I have calmed down the situation is not as bad as I thought.
By the time I knew Ally's button had fallen out, it was too late to put another one in.
In reality we have not used her button very much in the last couple of months. If she does a good enough job eating, we have been letting her sleep without her night time feeds. We keep track of her blood sugar every once in a while, and they are always good, even when she has not had her feeds.
Daddy and I discussed having the button taken out at her next set of scans (which are in just a few weeks). It looks like Ally made the decision for us. I was mostly freaked out because I had not mentally prepared myself or Ally for the button to actually be out...it has been our blood sugar safety net, and we will still need to talk to the endocrinologist about low blood sugars. The emotional upheaval (on my part...Ally is completely fine with the situation) has passed, and we are looking forward to this new, unbuttoned Ally.
The doctor was fine with letting it close up, and just told us to put a band-aid over the hole. By the next morning the hole was completely closed up on her stomach. We will be cautious with it for the next week or so.
Ally has promised to step up her eating...our goal is for her to be 30 pounds by the end of the school year (she is hovering around 27 right now). Of course, as soon as she hits 30 pounds we will up the goal to 35, but she doesn't need to know that right now!
So, it looks like everything will be ok...on the up side, she no longer has to do the CT scan, so she won't have to drink the yucky liquid (we have always put it through her tubie, to avoid the yucky taste). There is always a silver lining....plus, Ally is REALLY happy her button is gone; she is starting to realize no one else has one, and there is something "different" about her...not sure how I feel about that.
Okay...that's all for now. Nothing exciting coming up. I will post if we have any new information; our next thing on the horizon is an MIBG scan sometime in April.
Happy Spring!
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