Monday, December 29, 2008

Can I have the recipe for that????????

My mom and dad are putting together a cookbook as a fundraiser for my new room. They would love for you to help out by sending them a recipe or two or three or more that you really like. Maybe it’s a heirloom recipe that you HAVE to bring to a family gathering or they won’t even let you in… maybe it’s your favorite comfort food… or maybe it’s your favorite decadent indulgence.

There are really no real “rules” but when submitting more than one recipe please make sure they are different kinds of dishes! Although it would be fun, they don’t want to end up with 300 dessert recipes and one casserole. Please proofread your recipes. Mom and Dad might be able to figure out that “ground beff” should really be “ground BEEF” but they won’t know if you typed 1 teaspoon and really meant 1 tablespoon. If you can, please do not use abbreviations. Abbreviations might end up in the cookbook, but if you don’t use them in your submissions it will make it easier to get your recipe printed correctly in the cookbook. If you can, submit each in a separate e-mail with the category you see the recipe fitting and the recipe name listed as the subject. Example: Side dish – Baked Mac n’ Cheese

Some category suggestions: Appetizers, Soups, Salads, Beverages, Vegetables, Side dishes, Main Dishes and Casseroles, Breads and Rolls, Cakes, Candies, Cookies, Desserts, and the much loved, “Other.”

We are all really excited about this project and appreciate your help in getting the recipes together!

Please send your recipes to to make it easier for Mom and Dad to keep them all together and not miss one. Thanks!

Saturday, December 27, 2008


Look what we gave daddy for his birthday! He really likes them and is impressed with how nice they are. Mommy says that these mugs and other stuff to help raise money for my room is available here.

Tuesday, December 23, 2008

Look what I did!!!

I was in a Christmas Nativity on Sunday night. Don't I make a cute angel???

Friday, December 19, 2008

Don't forget me, Santa!

I wasn't able to go to the ETTAC Christmas party this year so I missed seeing Santa Claus. It kind of looks like I won't get to see him before Christmas at all. Mommy is glad I didn't make a "special" trip to see him at Children's Hospital. That is probably a good thing. Mommy has a friend who saw Santa at the party and she has a special toy for me (OH! A surprise!!!) She will be dropping it off for Mommy to pick up next week.

The weather here isn't helping the yucky stuff (that's a very technical term!) in my lungs. I have been having oxygen issues for a couple days because the stuff is so thick. Thankfully my nurses are right there to help get it out for me. I don't know what we would do without my suction machine. And when I sneeze I can get a whole lot out! It hasn't been bad enough to call my doctor but I go see him in a few weeks anyway.

Mommy showed me some t-shirts that will be sold as fundraisers for my room. She is hoping to get Daddy to help her get information and pictures of them online this weekend. So maybe there will be a surprise next time you visit!

Monday, December 15, 2008

Early Christmas...

Yesterday my mom and dad went to visit some of their friends. There was a surprise there for my parents. One of their friends online buddies (you know who you are!) had sent a card to their house for my mom and dad. Inside there was a nice note and a check for the building fund! Wow. They are so grateful to those special people. And I am too!

And mom did some crocheting for one of my nurses (can't say what it was because they are for Christmas!) and that added a bit to the fund. Many thanks to her too!

My parent's had to deal with some medical issues with my little big sister today and while that was going on one my pieces of medical equipment for my oxygen broke. The company that supplies it is really great, they sent someone out with a new piece to replace the broken part and everything is ok now.
Fortunately we had the e-tanks to use while we waited for the part.

Because of the medical crisis with my sister today, my nurse had to reschedule the doctor's appointment that I was supposed to go to this afternoon. Now I don't go until the late part of January. My doctors are busy people! But that's because they are good doctors! :)

Wednesday, December 10, 2008

They didn't poke me!!!! YIPPIEE!!!!

I came back from the doctor's and I didn't have a band-aid! Nope, no sticks this trip. That is probably why I tried to smile at Nurse Rachel. :)

But they did suck some stuff out of my trach to culture and they did put me on an antibiotic for 10 days so hopefully that will deal with whatever is making me feel lousy and have fevers off and on.

Oh, mom sent off a blanket to Lena. I hope she enjoys it, and we are very grateful she has helped my room fund along. Thank you, Lena.

Tuesday, December 9, 2008

Thank you, Carol!

One of my mom's virtual crochet friends from Crochetville bought some kits that mom had bought but wasn't going to use. One of them was a poncho she had intended to make for me but now with my trach I can't wear it so she never made it. Some lucky little girl will get to wear it instead.

Carol also benefited from mom not sending back the afghan kit she ordered that was sent in the wrong color scheme. She waited too long to send back to exchange for the correct color.

And the building fund grows a bit! Thank you, Carol!

Oh, tomorrow I'm going to go to the pediatrician because I'm still getting off and on fevers and the nurses and my parents don't know why. My nurse called and talked to a nurse at my doctor's office and they want to see me. I think they want to poke me to take some blood. I really don't like them doing that, they have to hold me down, but it does have to be done. Hopefully it won't be anything serious and I can go right home. If I have to take a new medicine for a while that's ok. As long as I can stay home and do it.

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.