Thursday, December 4, 2008

Welcome to my realm

My mom, the Yarn Princess, will keep this site updated on the saga of "Princess Junior's New Room". You didn't think I was going to do it myself, did you? I don't know how to use a computer! Yet.

I guess I should introduce myself. I was born in 2003 so I am five. My parents didn't know it when I was born but I had a rare chromosome disorder that would change the family drastically.

I didn't do things that babies were supposed to do when they were supposed to. When I was about 5 months old my doctor said that maybe it would be a good idea to have me tested so they took me to a geneticist. That doctor found that I had Trisomy 14 Mosaic Partial. I have since also been diagnosed with
Cerebral Palsy, failure to protect airway, chronic reactive airway, chronic lung disease secondary to chronic aspiration, chronic urinary tract infections, failure to thrive, laryngomalacia, physical and neuromuscular delays, scoliosis, and windswept hip syndrome. I have been in the hospital about 21 times since I was 7 months old. I have had 24/7 nursing this past year and it is helping to keep me healthier and out of the hospital. My nurses take real good care of me.

Because of my medical problems there are things around the house that need to be changed around or remodeled. I have lots of medical equipment. I use oxygen almost all the time and there is a probe the nurses keep on my toes that monitors my pulse rate and oxygen level. I have a humidifier to keep the oxygen warm and moist because I have a trachostomy. I lots of other things that are needed for my care too, like a nebulizer and a compression vest systen that are used for my breathing treatments. I also have other equipment that just won't fit in the room.

My mom and dad tried to make it easier on everyone and they put a counter and sink in my room. There is a refrigerator for my medicines (the nurses use it for their lunches too). With all this equipment and my special bed it makes my 10x10' room very cramped.

My mom and dad thought about it and they came up with an idea. We don't have a garage but there is a space on the end of the house for a garage. If they could add a big room there they could move their bedroom and their "office" into that room and give me the master bedroom and small retreat space off of it. This would give me more than twice the space in the main bedroom than I have now and allow me and the nurses to spread out. My nurses would have lots more room to work with me comfortably. The smaller room will be used for my equipment (things like my stander, gait trainer, bath lift, easy seat chair) when they aren't being used. The nurses could also store my extra supplies in there so there aren't boxes piled up all over the house. It would also give me access to the master bathroom!

The biggest problem is that this will cost a lot of money that they don't have because of all my medical expenses. We have been very blessed that some friends have offered to help is in many ways. One has arranged to have our driveway widened to make it easier for me to get in and out of the van. My mom is collecting Home Depot gift cards through a program she does online that she is putting in my building fund. We have had someone else pledge money towards the project.

So this will be the place where you can see how the project is doing. It's a big project and it won't happen overnight, even thought we'd love for that to happen. Several people have suggested that my mom and dad apply for "Extreme Home Makeover." This was considered but we don't really need a whole house remodeled, we just an extra space so I can be more comfortable and taken care of better. Also it isn't a good match for a couple other reasons so we'll just let them do their magic for other deserving families.

If you would like to be a part of the project please feel free to contribute to the building fund via the donation link on the right. We truly appreciate any help and that includes any thoughts and preyers sent this way on the project.