Who needs prime time TV when you have the Mia Chronicles?
For two days we have been trialing rice milk. We gave two ounces the first day, which was probably overkill, but it's like I'm new to feeding all over again. We gave three ounces yesterday and about three and a half today. We had TWO normal poops in a row! I won't go into detail, but to this mamma it was like beautiful art! I ran out of the room with the diaper and showed Gary, who was looking at me like I'd gone off the deep end. If we can get rice, that opens such a BIG ornate door! Just as important, this could mean that the Ketotifen is working! If we can avoid immunosuppression, we'll be over the moon with happiness!
On a little bummer note, the allergist is afraid that she's showing the first signs of asthma. She has been coughing a lot for seemingly no good reason and is also waking in the night from coughing. We now have an inhaler for Flovent twice a day and albuterol for "attacks". They gave us a walk-in slot in Peds for her first dose to make sure she wouldn't react. The Major gave an excellent tutorial on how to use it, but I still feel so mean pressing the mask against her face. She was extremely unhappy with me today. We went to the swimming pool afterwards so she forgave me pretty quick.
And so I don't leavey ou with bad news, we are weaning her off of the IVIG infusions. Instead of three weeks apart, this next will be four, then five and finally six. After that she'll be done and we can see what her immune system will do with it's own devices. I'm not sure what we'll do about the mediport. I'm not in favor of removing it right after, just in case she has to start the infusions again. I'm not being a pessimist and saying that I think her body will flip out again, I just don't want to remove it and need it again.
Sorry about the pictureless post, Gary has the harddrive with the photos :/
2 comments:
Yae for rice! I hope that it works out for her and opens that ornate door you all want to go through.
Rice!!! How great! We are praying for this to be it!
Toby is on the inhaler thing, and he does not like us at all. We found out it is easy when he is asleep.
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