Happy Family Day at the Doctor's Office

So it's Family Day here in Canada and naturally we spent the day doing what we do a lot as a family- going to the doctor with Zoe! Zoe has a gastro infection and is getting dehydrated so we had to take her in. When the doctor weighed her, we discovered that she lost over a pound in the last three days. The doctor advised us to start syringe force feeding her and if she does not take in 24 ounces in the next 24 hours, we have to take her back tomorrow to discuss IV or NG tube hydration.

Arrrgghhhhhhh!

We just got the weight back on that she lost with the pneumonia! She is having a very tough winter. We are so sick and tired of worrying about weight loss and force feeding. Zoe, as always looks good though. Through all of this she is playing and mostly happy. The skin on her feet is beginning to wrinkle and turn dusky from lack of blood flow but if you looked at her, you would have no idea this is a kid who has lost 5% of her body weight and is dehydrated. She is amazing and so resilient. That is what we keep reminding ourselves. If we can just get through this winter perhaps the spring/summer season will be easier for her.

An Update on Equipment
We haven't had time to write with Zoe being sick but I wanted to give an update on the equipment. First, our friend Erin (whose daughter also has 1P36) gave us a seating system/special needs stroller. We are not sure if Zoe will need this but we took it to try it out. The place that has loaned us Zoe's corner chair for the last year needs to take the chair back. So we are going to see if the seating system is a good replacement for the chair. If not, we will look into purchasing a corner chair. Zoe has really gained in fine motor skills from having the support of the chair and we don't want to lose those gains.

Second, the pony walker and stander are scheduled to be dropped off tomorrow (if we are able to be here instead of the doctor's office) so we can check them out for the next week or so. If they work for Zoe, we will order them. It takes 6-8 weeks to get the government approval so they will pay 75%. Then we are hoping our personal insurance will cover the other 25%. We are frustrated that it will take several months to get the equipment that Zoe would benefit from now. But I guess that is the way the system works. We are supposed to think ahead by six months but how are we supposed to know what Zoe will need in six months? At this point I can barely think six hours ahead, let alone months!