Cleaning Tubes

On the Parent-2-Parent forum, there are tons of helpful hints from parents on feeding tube stuff. One of the things we struggle with is keeping the feeding tube connectors clean so that they last. By feeding tube connector I mean the tube you connect to the feeding tube button. They are usually 12 or 24 inches long and are designed for the specific button you have (Mic-Key, Genie, Wizard, Bard Button, etc.) One of the suggestions on the forum was to pour some liquid soap in the connector tube and then use the back of a knife and your thumb to pinch the tube. Then you pull the tube through, running it between the knife and thumb much like the way one would curl ribbons on a present. This works but I always worry I may pull the end of the tube off. I have found that I can simply pour the soap in the tube and let it slowly run its course through the tube. Then I turn the tube over and let it drain the other way and repeat it and rinse it out well. It seems to get out all the gunk. 

Foam Pillow

We were exposed to a product called Versa Form and it is a great little invention. It is used in a few different applications, but we have been trying out the pillow. The pillow is full of foam pellets and it has a valve on the end that you attach a small hand pump to. Then you form the pillow into whatever shape you want and hold it there while you pump the air out of the pillow. Once the air is out, it stays in the shape you put it in. It is great for forming around Macayla's legs at night to keep them in a position that helps her hips. Unfortunately, she doesn't like it and has trouble sleeping with it. It can feel rigid and I think it makes her feel strange. But it certainly has many helpful uses and they make other products using the same concept. You can make a custom fit form for abduction or support and change it as needed. It hasn't been the best match for Macayla, but it is certainly a product worth checking out.

Funeral

The end of life decisions are difficult on every level. It is difficult to even think about planning for a loved one's death. As a parent, it is paralyzing to consider planning the funeral of my child. We have started the process, nonetheless. It is easy to avoid this process while you're in the midst of caring for your child or loved one, but at some point it is a process we must face. I would rather not face all of the decisions and planning the day our daughter passes. It will be a most difficult day as it is and the last thing I want to have to deal with is where, how, who and what will be done at her funeral during the 24-48 hours after her death. So, we decided to begin preplanning and that process started yesterday. As we gain more information that might be helpful, we will share it here. This blog tends to be more informational and technical in nature whereas our other blog share a bit more than that. Hopefully both will be helpful and bit more holistic. As parents we cannot live in denial of the prognosis of our daughter. It will not help her if we do not acknowledge her needs; the needs of today and the needs to come. We see her funeral as another step in the journey she is on. It is not the end. It is the next step. 

We actually experienced relief to some level to start the process. We also felt relief as we discovered that funerals do not have to be as expensive as we thought. There are many options to lower costs, depending on one's viewpoint of life and funerals. We will share all we can and we invite others to share as well.