Today was the first of a few audiology appointment. We did get good news. Casey CAN hear. She doesn’t have perfect hearing, and MAY need an aide, but she CAN hear. I was so happy when they confirmed that for me. I always thought she could, but it was nice to be validated. We have to go back at least one more, possibly a few more times before we know if she will need the aide or not. We will keep our readers posted as we find out more.
Casey has gained half a pound. That’s pretty good. Her GI clinic and her GI surgeon talked and have decided it would be best to move her to the G/J Tube. This tube will offer a feed into the stomach (like she has now) as well as a way to bypass directly into the intestine. The hope is that by going directly to the intestine that she will not have reflux anymore. Once we are past the reflux we will be able to advance her feeds, and hopefully soon finally get to bolus. I imagine once we start moving her feeds up she is going to grow really fast. The procedure will be on Wednesday. It is an out-patient procedure so she will be home that same day and she will not have to be intubated.
We saw Ortho this week. As for now they are still saying to hold off on correcting the hips. We are going to move forward with botox. The Ortho got us into a clinic that they do every Wednesday morning for CP patients. In this clinic we have access to Ortho, OT, Neuro, and the botox doctors. I will be taking Casey in Wednesday before her GI procedure. OT should be able to get her new splints, and if we like this Neuro we will look at transferring her over. We don’t have a problem with her current Neuro, but it makes more sense for us to get them all in one rather than having to bring in an outside party. I am glad we are in this clinic. As Tim pointed out, not only will we have access to the medical resources, but we will also be with other families with CP kids.
We have been battling our supplier (AGAIN) and have finally found a new one. With my insurance being terminated as of today, Casey has been switched to Tim’s for everything. So it was a good time to get a new supplier. It was a lot more work than you can imagine, but at least its done. We should have her new equipment next week. Once we get it we will call the current provider and tell them to come get their stuff. We can’t wait, that is going to be a great call.
With the CP clinic being Wednesday morning and her GI clinic is Wednesday afternoons her current PT session were set up for Wednesday mornings. That won’t work anymore so I talked to the PT today about changing her time and about the objectives of the session. She really doesn’t seem to have the same objectives as Tim and I and in addition doesn’t have a very flexible schedule outside of Wednesdays. We are looking to change PT now. I really hope we get someone that is as good as the PT she had in the NICU.
Tim is in the process of upgrading the camera. So we sold our camera and will be buying a new one soon. For now I can’t take any pictures of the cutie. I will take some and post as soon as we get the new camera.