It’s been a very busy summer with the whole family! River and Ewan and I spent a near month in Utah visiting our family and friends. We traveled from Washington through Idaho, into Montana, down through Yellowstone, into Wyoming, and on to Utah. 1200 miles one direction! The kids did great on the road. We got to see many friends and family along the way, and then spent many hot days down at our relatives. Highlights of the trip were the many water slides we encountered. Both Ewan and River went down them from the first time in their lives.
Now that we are back home after our long trip it’s back to business with River’s treatments. Throughout the summer River has improved in her motor skills, her walking and running and jumping have all gotten better! She’s getting faster and taller all the time! Her drinking fluids also improved during our hot months. She’s up to around 5 ounces a day now of oral fluids, which is a pretty big improvement over around 1-3 oz. in a day.
Last week we had feeding therapy with Jennifer and she managed to get her to eat half of an avocado and drink a juice box. Those food themselves are not unusual but the amount was! Although River is usually full of energy and couldn’t sit still during the session, she mostly ran back and forth. We’ve also decided to stop the use of the Periactin, we think that it’s usefulness has declined(which is typical).
This week we’ve traveled back to Seattle Children’s Hospital for an appointment with the nurse practitioner that works with the Intensive Feeding Clinic. She wanted to clear River medically so she can attend the clinic. She was very impressed with River’s progress so far, and her previous weaning, and overall condition. She gave us more insight into the program, and assured us she will try to help us find a way to stay up in Seattle during. So far this will prove the biggest challenge. I spoke to the Ronald McDonald House last week and we are a whole 4 miles too close to qualify for housing. Yes that seems ridiculous but they must have their guidelines. But they may make an exception. We also have to go through her insurance first to see what they will cover as far as housing and/or gas. We may end up doing the drive everyday (which is of course a last resort for us). It’s a two-week long program (10 actual days), and the commute would be over an hour in each direction usually. The NP also wants River to get a swallow study done. She’s never had a real swallow study, and they have to be completely assured River has no swallowing dysfunction before attending. So that’s on the books soon. So we definitely have some details to work out before we go to the Intensive Feeding Clinic. But we are scheduled to go September 10th.
Today we go back to Jean for physical therapy. River needs to be seen periodically to make sure she’s progressing. I believe Jean will see many improvements. Next week we will check up with her GI clinic. Also I scheduled a check-up with her neurologist. He previously saw her for her Horner’s syndrome back as an infant. I have been wanting to follow up about her eye for sometime. There are times when she has her left eye closed all the way, and I’m concerned it’s impeding her vision, or going to cause her eyesight to decline faster. We may need to see her ophthalmologist sooner than expected as well. We will also be discussing possible balance or other neurological conditions that might be causing River movement and gait problems. She does lose her balance easily and appears to get dizzy at times, especially on a nonuniform surface.
So there will be many new things coming up for River this month and next! We are still working at having a great summer as well. We will be leaving this weekend for the coast, and we are very excited to show River the ocean(not just the sound) for the first time! The kids, even the dog, get to have another great adventure soon.
In other toddler news: we had a recent potty training attempt. It will ill-fated though. I know River is ready to start, she is showing great signs and interest. We bought the undies and got the potties out. We are also trying to move our rooms around in the house and I spent the weekend cleaning and painting the upstairs room for them. Daddy spent the weekend also cleaning and working. We just didn’t have the time to dedicate to potty business. Next week things will be a lot more settled and we can try again!