Hello, Friends,

A few weeks ago, I wrote a blog post about what Fiona can do at two. It’s here if you’d like to check it out.


I didn’t write about how she’s doing medically, but I’ll do that here. But first, a wicked cute photo!

closeup 2

– She still has febrile seizures (so far ranging from 2 to 7 minutes) and she’s had one non-febrile seizure. We have diastat on hand.
– She’s not on any daily medication, but the neurologist wants to discuss meds due to her abnormal EEG. Because it seems neurologists vary on their opinions about whether to treat abnormal EEG’s, and because of the side-effects of meds, I’m not convinced yet that we’ll go down that road.
– She’ll get an MRI of her spine to double-check that her spine isn’t tethered, and we’ll do an MRI of her brain then too, since she’ll be “under” anyway.
– She sees nephrology to monitory her kidneys. Other than a slight dilation, all seems good there. So we’re monitoring.
– She has scoliosis, and we monitor that with twice yearly x-rays.
– Her ASD and pulmonary valve stenosis are also being watched, and there’s no rush so far to do anything about either.
– She currently has PT twice a week, OT once a week, and Speech once a week. She also works with an intervention specialist a few hours a week, who reinforces the skills she learns with each therapist. Soon, we’ll up her OT to twice a week so that the therapist can focus one hour a week on feeding–she’s not chewing well, and she isn’t using a sippy cup yet.
– She’s 100% orally fed, and eats a variety of foods, mostly very spicy and/or salty.
– We get about 12 hours a week from the state of Vermont for something called a “personal care attendant.” We’ve hired a friend and special ed worker, who Fiona adores (and who adores Fiona). As soon as the “PCA” walks into door, Fiona thrusts her arms toward her, eager to get out of the house. She returns giddy and enlivened. It’s great.
– She’s got a new sister, and we’re working diligently only “gentle touch”!


That’s about all for now. Here’s to age 2!


4 Responses to Fiona at 2

  1. shirley bidnick says:

    All of Fiona’s photo’s are wickedly cute. She looks innocently mischievous. Rochelle is frequently reminded to be ‘gentle’, especially when she reaches for someones face or hair. She likes to grab and squeeze faces, sort of like Fiona is doing to her sister. She is very fast and moves quickly from sweet gentle touch to inflicting pain, while watching to see if anyone is going to stop her before she executes her move. The cat is very cautious around her.

  2. Kristen Faccioli Licari says:

    So how is Fiona adjusting to life as being a big sister and no longer being an only child? I know my son had a hard time at first – he vacillated between trying to smack Emily and ignoring her! Fill us in! <3

  3. heather18 says:

    Hah, smacking and ignoring. Sounds about right!
    Here’s an update on that:


  4. letty says:

    First of all, Congrats on your new addition! Secondly, I must say the your precious baby girl is adorable….

Leave a Reply

Your email address will not be published. Required fields are marked *