Okay, actually we have had a few of these days, so let me back track a bit!
On Tuesday night, after her last bolus (timed) feeding of the day, Emily was spending some time playing on the floor. By 9 pm, she's got the whole living room to herself! So, she has been rolling on to her side (her right more than her left) for awhile now. During therapy we have been practicing going all the way over and a few times she has gotten almost all the way there but her right arm gets pinned underneath her, stopping her from making it completely. But, this time, she made it! Now I was sitting right next to her (watching Biggest Loser), looked at her on her side, looked up at the screen, looked back at her and she was on her belly! Wooohooooooooo! :)
Yes, I missed it! But I got lots of pictures while she was on her belly. ;)
Last night, she did it again! I missed it again too!
Now tonight, I watched the whole thing and took pictures! But she decided to step it up a notch this time. Once she was on her belly she fussed to get back onto her back. Once I put her on her back, she went right over onto her belly, fussed to go back, rolled onto her belly, fussed to go back, you get the idea! She did it at least four times. Go Em!
Oh, but that is not all!
She has also been doing more with her mouth lately. She constantly has her hands in her mouth, and she started sucking, actually sucking on her fingers and thumb! She will tolerate me cleaning her mouth with the oral swab now and has even grabbed it. We've been giving her little tastes of things with flavor like candy cane, lemon, chocolate, sweet potatoes, etc., and she hasn't been choking. She's even been putting her hands in her mouth afterward like she's looking for more.
But at the last feeding team meeting in September, they said they didn't want to see her back until she was more stable because she really wasn't doing well then (actually she just had a cold and was sleeping during the appt.). They wanted her therapists to give the ok for any further feeding trials. Well, her therapists wanted the ok from the doctors. What to do?
At her GI appt. I asked her doc if he thought we should try a test he had suggested a while ago, before she got her g-tube, called a modified barium swallow study with speech. This test would involve taking an xray of Emily's throat area while she is being fed various foods/liquids by a speech therapist to see if she is aspirating anything, and check her suck and swallow. He thought it sounded like a good idea and sent an email to one of the speech therapists and someone would call me when it was scheduled.
Back to Tuesday. I get a phone call from the hospital to confirm Emily's appt. for her swallow study on Wednesday!!! That was the first I had heard of the actual appointment, but I jumped on it and luckily Grandmom was able to come watch the rest of the kiddos so we could go!
We got there in plenty of time - even though the South Street Bridge is now closed for 2 years and I had to find another route - and they took us in right about on time! There was a problem with the prescription for the test from the doctor so we had to wait almost 45 minutes once we were in the radiology room. But I met the speech therapist who would be feeding Em and she was super sweet! She explained everything she would be giving her and I filled her in on Emily's history since we had never met.
And then it was time. Emily was sitting in tumble form chair (think extra large reclining Bumbo seat) next to the xray machine. The ST (speech theapist) gave her the pacifier and she started sucking. Then she gave her a spoonful of honey consistency food with barium so we could watch it go down her throat on the xray. She sucked it up and swallowed it right down! She took at least four more spoonfuls and looked like she loved it! The ST was happily surprised and I - well if you know me by now - I was crying. So proud of my little girl! And I just knew the ST was going to tell me I could feed her again!
Next she went for the bottle, a special squeeze bottle. At the first squeeze, Emily refluxed and a bit came back out. But the ST tried again and she took about 3 more squeezes and swallowed them fine! Yes! More tears from Mommy, who by now couldn't speak but just nodded and smiled at the ST, radiologist and tech who were all thrilled by what they saw.
And she said what I had been waiting for - "She can eat!"
The ST didn't do any more. She told me she was satisfied that she could handle honey consistency foods and formula. She recommended to try food once a day, just a few spoonfuls. We have to start slowly. And just a bit from the bottle.
Now that's a good day! :)
Emily had about 6 spoonfuls of yogurt at dinner time tonight and did great!