We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Thursday, July 28, 2011
Knock on wood ....
I spoke to the GI on the phone yesterday morning and we decided to wean off the Baclofen that was started to help with Emily's retching. I told her that we hadn't noticed a difference. Then my husband reminds me that Emily didn't wake up retching yesterday morning. She just woke up. It was such a NORMAL thing, that it didn't strike me as to how abnormal for her that was! This morning, no retching.
Could it be? I need the most gigantic piece of wood ever to knock on as I say that two mornings in a row she hasn't retched ..... KNOCK KNOCK KNOCK.
I just emailed the GI again to let her know that I am not weaning the Baclofen after all and perhaps it's working!!
We are going to try a gj-tube again for Emily. It will be placed by the GI herself during an endoscopy. This is a last ditch effort to get meds in Emily. Please cross your fingers, pray, turn in circles, and hope it works!
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10 comments:
Yeah!!! for no retching.
Praying the GJ tube will work
knocking on all wooden things and things that look like wood as well. Imitation wood products....
:)
very good news, finally! i hope this continues for you and your family!
My head is a big ole piece of wood so I will be knockin'!
yayy! I will definately pray for the mornings good to continue. What do you use for drainage bags. They look different then ours and I like how they are close to her body. I hate having 4 feet of tubing before it sucks it in :)
I hope this is the beginning of better times for your princess.
Oh I so hope that this works. Praying for you all.
Praying for relief! Hope it works!
I can't imagine what you have been going through for so long. All the back and forth, good moments on top of a string of bad days, so much hospital time. Constantly praying for you all.
Hugs...
Yay for no retching! I didn't get your email! Can you try again to a diff one? Colofisch at comcast dot net?
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