So this week River had a series of new things: first, she had an eye appointment, then her first OT appointment, she also got a new pump this week, and we have big new plans!
She saw Dr. Deem for actually the 2nd time. He was the ophthalmologist that checks the retinas in preemies at the hospital. He saw River when she was about 2 months old. We were visiting for several reasons which I won’t get into, but not because we were concerned about her eye sight. Turns out we might have to be. First to say is that the anatomy of her eye is totally normal and healthy! Dr. Deem was super good with the little ones, and River behaved pretty well at this new experience. Her Horner’s Syndrome is still very present, although he doesn’t think it causes her sight problems. He did say that she was developing an astigmatism. That’s the bummer news. I have astigmatism and it makes me terribly nearsighted. I got my first glasses I think in the 5th grade. I believe River may be needing correction at a much younger age unfortunately. But he doesn’t think he needs to see her for another year!
After that we went to her first OT appointment. It went swimmingly considering she keeps refusing to nap, but obviously still needs them. She sat in a swing for a long time! The OTA says that River will get more comfortable with her balance and her sense of movement by working on such things as playing on moving items, swings, slides etc… and getting her feet up off the ground. We hope this helps her want to learn to walk!
The other advancement this week was getting her new Infinity pump. It’s smaller, lighter, and she can wear it as a backpack! We do this about once a day, but the hope and dream is that she won’t need it for very long!
I was inspired by a story I heard recently, and it led me to read about several inpatient feeding clinics in the world, and some research that’s been done about weaning children off of their feeding tubes. I decided that it’s time to give it a try, here at home, a short weaning program over two weeks. The last two weeks in December are the most ideal since i’m off of school, and am staying at home, and my mom is coming to town! I’ve spoken to her dietician, and even Dr. P her GI doctor is onboard! We are super excited and we believe whole-heartedly that River is ready. She has a high interest in food and wanting to eat lately. She has been teething in her molars and it’s made her congested and drooly and uncomfortable, but that comes and goes. She nibbles all day long, not enough to count, but she always wants a bite of our food. I really believe if we can shut off the tube feedings and get her surrounded by food everyday that she’ll take off with her consumption!
I’m going to loosely follow the program that they do at Seattle Children’s Hospital, and the Graz clinic in Austria. I’m attaching a paper that I read that is a medical research paper regarding the success rate at this clinic in Austria and what they do. tubeweaning-paper-nov-081
I’ve found this mom’s story nothing but joyful and tear-jerking to inspire me: http://www.anunexpectedpath.com/gias-tube-weaning-story. And here’s another great blog on tube weaning: http://lifeandtimesofstella.com/tube-weaning-resources-and-tips/
I still have a bunch of planning and reading to do, and we have an appointment with Dr. P on the day we plan to start, December 16. We will go through just after Christmas. We are visiting the family back home and leaving on December 29th, so we will wrap up our attempt by then. We have great feelings about this! And even if she’s not completely weaned, which I think is not possible at this time, it could take her up to eating 50% or more of her daily requirements! I’m really hoping for that! Also we are looking for other babies to come join us for our daily Play Picnic in my kitchen for the weaning period! It will help River to see peer models playing and having positive experiences with food. Anyone up for getting messy??!?