Little A attended school for four weeks~the first two weeks were rough (she cried every time I left her, and cried on and off the entire three hours she was there) but her last two weeks went VERY well and her teachers were very positive about her growth. We are attempting potty training, but only because they started it at school and I am trying to continue it here at home. I am failing, as she carries her potty into her bedroom and sits on it in front of the mirror (cute, but telling), but may give it up until after this house sells and we move into a new one.
Little A had her six month appointment with her GI doctor and the GI dietician two weeks ago. She is doing so well eating that they agreed to stop tube feeds for six weeks. As long as she doesn’t lose weight, we may be able to continue past the six week mark. We were told that she has to feed 100% percent orally for a minimum of one year before they will consider removing her g-tube. How exciting!!! At this time next year she could be tube-free!!! She had an ear infection last week and is just now getting her full appetite back. Still working with a feeding therapist on drinking thin liquids, but she’s almost there. So proud of how far Little A has come this past year 🙂
My stress fracture and torn ligaments are healing nicely, so I’ve started taking Little A back to The Little Gym this week. She seems happy to be back there, and actually participated and allowed herself to be used for demonstrations of a front roll and wheel barrows. I was pleasantly surprised and excessively proud of her, and happy that my little girl is getting stronger and more independent.
I do not think of myself of an activist, but I have been advocating for the DS community more this year than in the past. This week, at the urging of a friend and mother of a daughter with Down syndrome, I wrote emails to my congressman via the legislative lead for the TIME Act in Congressman Sessions’ office, encouraging him to sign the Transition to Integrated Meaningful Employment (TIME) Act.
This Act is important because it would phase out special wage certificates over a six- year period that allow employers to pay individuals with disabilities sub-minimum wages, sometimes as low as thirty cents per hour. It will also help pave the way for equality in the workplace for people with Down syndrome and other disabilities, many of whom work in settings that fail to prepare them for integrated employment in the mainstream economy. If you live in Texas, please consider supporting this effort by sending an email of your own to: firstname.lastname@example.org
In other news, our home renovation project is almost complete, and a photographer is coming next week to take photos for our sale listing. I will post the renovation photos in my next blog post, but leave you with these photos from the past two weeks. Thank you for following my Down syndrome journey~~~