Submitted by kim on Tue, 03/18/2014 - 09:42 in Nathaniel's Story
I'm a bit caught. Due to Nathaniel being in the custody of Children's Division for the first six months he was with us, I couldn't share information or photos publicly. The telling of Nathaniel's Story is back in August for the most part. But life today is fun and exciting and I'm eager to share what is happening in Nathaniel's and our family life THIS week.
The easiest solution that I can come up with is to share lots of photos from our fall together. A picture is worth a thousand words, right? Here are some photos of Nathaniel and our family as we settled in the last weeks of August.
Thinking back on yesterday's augmented communication appointment, I must have looked like a crazy mom. I hauled in a large bag of stuff that I had made, his toys, the talker that Nathaniel's speech therapist was trying to use, his iPad, copies of research articles I had found, and my go-everywhere-Nathaniel-binder.
I feel like skipping tonight! And it's not just the spring weather in St. Louis. Nathaniel participated in a two hour augmented communication study at St. Louis Children's Hospital today and it was AMAZING!
Let me back up and give some necessary info.
We know Nathaniel will be non-verbal for a number of years at least. His trachea abnormality prevents him from passing air over his vocal chords. As a side note, yes, that means Nathaniel does not make an audible cry. He cries like all babies, but the only sound is an increased respiratory rate. Everyone knows he needs a different way to communicate. The go to option of course is speech therapy.
Nathaniel came home from the hospital with round the clock private duty nursing. I would love to write a blog post on how smooth Nathaniel's second first night home went. But it didn't. We were up all night fixing problems the night nurse was creating. At two in the morning I asked her to sit in the living room. She had told me she was afraid to drive in the dark and I couldn't turn her out in the middle of the night.
And I would love to write that she was the exception and that all of Nathaniel's nurses since have been fantastic. But they haven't. I've come to realize that private duty nursing care is a lot like homeschooling. It is as good or bad as the individual doing the job.
Submitted by kim on Thu, 03/06/2014 - 16:14 in Nathaniel's Story
Packing up Nathaniel's things and waiting for discharge. Ben and Josiah took a CPR for trach patients class while I worked with hospital staff on discharge.