Inconclusive is so not helping me

This week was the big MRI. The MRI that we’ve been putting off for a long long time. Finally, it’s over, or so we thought.

Let’s get right to the news about it. The answer is inconclusive. They cannot yet make a definitive diagnosis if she has tethered cord, or any other condition. ARG!!! We hate not knowing! The doc said that he will pass along the test to a neurological surgeon to see if he can come up with more answers for us. What they did see in the MRI was that her “conus”, the base of her spinal column, is still low lying, just as it was with her initial exams when she was still an inpatient as a preemie. But they could not see any masses, or anything that would for sure point to a tethered cord diagnosis. The other thing of note, is that her conus is more posterior, rather than centered. Since she is not experiencing any clinical symptoms of tethered cord syndrome, that is another reason they cannot diagnosis and treat it. Hopefully the Neurosurgeon can give us a good opinion.

Here is River and I waiting for her MRI, she is feeling very relaxed after being given Versed. She received an IV in her hand, and then was eventually given Propofol to fall asleep for the 25 minute MRI. She was actually quite silly to watch being sedated. She fought it, but in a happy cooing way. She waved at the nurses, and babbled a lot. The MRI experience was very benign for her, thankfully. We want to avoid any medical related trauma for her, naturally.

But in very Conclusive news: River is doing fabulous with her feeding therapy and oral skills!!! This week was a great one for oral advancement. This week during our Mended Little Hearts meeting, we were trying to entertain her with a water bottle, and the lid, she loves playing with lids of all types. I noticed her suckling at the lid edge when I was giving her a sip of water. The next day I gave her a bottle (baby bottle) of juice, I was able to get her to suck a few times. She is very willing now to take a bottle nipple in her mouth now, mainly to bite on, but still she gets the juice out and swallows it. This is just great! She opens her mouth wide for me to put in if she’s in the mood. She has even tried out a few new textures this week. Applesauce and some yogurt melts, both which previously elicited gag response from her. She is doing well with both of these this week! She is actually eating maybe TWO teaspoons worth of food a day, as opposed to her one teaspoon that she’d been achieving.
We are all very excited with these noticeable changes!

Food play with Brother

We’ve been getting out the play food and play pots and pans for her lately, and she loves them. Ewan jumps right in to play with her, and she gets a ton of encouragement from him to put spoons and food in her mouth. You can’t see it very well, but there is applesauce all over those toys, and anything she puts in her mouth she gets some flavor, and then we will also give her a spoon of applesauce during the play and can usually get a bunch of bites down her. What a good girl!  And as soon as she’s ready to be done, she is effectively using the “all done” sign! She loves to tell us All Done now, whenever we are doing PT exercises, feeding her, or trying to put her to bed. LOL! She knows what she doesn’t like!