Grace was discharged from speech therapy today for reasons that I don’t think are fair. It was disheartening, to say the least. We handled our disappointment I think pretty well and left on positive terms – but I cried. I wanted to just sit down and cry when we left and told Kevin – “I … Continue reading Crying Days
I hesitate to even write this. I hesitate to even begin. I’m not one to post on politics. I choose more often to focus on the less controversial topics that we deal with as a special needs family. My hesitation is also based on me finding myself trying really hard not to judge based on … Continue reading Pre-existing Condition
Grace is home. I’m relieved. And as if she wasn’t being watched carefully enough by doctors we’ve added an infectious disease doctor to the mix for the next two weeks or so to make sure she is all clear. We like him – he’s been amazing to work with. It sounds like we’ve actually been … Continue reading My stuffing is showing
At 7:39 am last Wednesday I received a text message from Rachel, Grace’s speech therapist that said, “The device has arrived!!!:)” I replied like this….”Waaaaa!!!! That’s so exciting” Grace now has a communication device that she can use with her eyes. Just with her eyes! This means that on a good day or bad day … Continue reading The device has arrived!!!
Grace has a schedule: 6:15 – Morning meds 6:45 – Out of bed (allow time to wake up before next step) 7:15 – Cath, get dressed, G-tube feeding 10:00 – Water 11:30 – Cath Noon – Meds and G-tube feeding 2:30 – Water 3:30 – Cath 4:00 – G-tube feeding 5:00 – Meds and water … Continue reading The Rhythm of Grace