I'm getting a new wheelchair!!!

Mom and dad just found out from the insurance companies that they have decided a new wheelchair is "medically necessary" for me! I'm so glad!!! I am getting around better in the stroller we were given because one of my nurses made a panel that makes the back taller so my head doesn't fall backwards, but a wheelchair fit to me will be better.

It will look something like this one but customized to fit me. And it will be PINK!!!!!

To the people have donated money to the wheelchair/room fund. Thank you all so very much!!! Because the wheelchair will now be covered by the insurance and there isn't anything else I really, really need at the moment, Mommy says that the goal of that fund is currently for getting me into a bigger room.

Oh, she also told me that she is still working on getting enough recipes for the cookbook (a room fundraiser) so if anyone has any recipes they really like and would like to share PLEASE send them to her. She is still collecting them and will be until there is enough to make a good cookbook. She was really hoping to get it out last Fall so people could give them as Christmas presents. You can send them to her by CLICKING HERE. 

They wrote about me!

I asked Daddy to post this for me. A nice lady and man from The Daily Times came to my house yesterday, and today they wrote a story about me and the nasty people who stole my wheelchair! [Edit: link updated!] We are so grateful for all the folks who are interested and want to help. Daddy said I should tell you that the fund here began as a way to help me get a bigger room, but that we're going to have to use it to help me in whatever way I need most.

We still hope that insurance (that's a funny word!) will replace the one the nasty people stole, and if so, then we can use any donations to help get more space for me. I'm a little person, but all my equipment and the people who take care of me need a lot of room. But if insurance can't replace it, then we'll have to use any donations to help with that, because (don't let Daddy hear this) Daddy says he has gotten too decrepit (that's another funny word!) to haul me around. He's wrong. He should have said like a sack of sugar, because I'm an awful lot sweeter than flour.

Cookbook news

Mommy really, really had hoped to have the cookbook ready for sale by Fall but that didn't happen. She is still in need of recipes so feel free to continue to send your favorites in to her by clicking here recipes@soapboxorations.com. I'm still dreaming of my bigger room, with enough space for all my equipment and space to move around better. I'm being patient.

As for me, Princess Junior, I am doing well. I was able to get my flu shot (regular flu - they never got the H1N1, or Hiny flu as my grandma called it, in.) and I have managed to dodge all other illnesses so far this Winter. I keep the nurses on their toes by having some up and down temp issues and because of that Mommy is being very selective about taking me out in the cold, I even missed a Christmas party yesterday, but she thinks it best to maintain my health. Mommy says that we are weathering some nursing issues but she trusts they will be resolved soon so I can have all my favorites here again.

My new Dafoes should be arriving very soon and we will be able to pick them up locally because the company has opened a new location much closer to home. They will be purple and pink. Yea!!! I'm also getting new hand splints that will help me keep my fingers open more. I'm still working hard at therapy. Mommy thought she was being nice and she bought me a wedge for home so now I have to work harder at home too.

I hope everyone is on Santa's nice list and that you all have a very blessed Christmas.

Update...

We are still planning to expand the house for Princess Junior but at the moment things are at a stand still due to other family things that need to be dealt with. And we still need LOTS of recipes!!! I'll try and post a list of what categories are needed most soon. Please contribute even if you have already!

On the health front: We took Princess Junior to the surgeon last week because her G-tube button seemed to be dimpling in. Consensus was that she still has a bit of growing room before it really has to be changed. We verified this with her physiatrist a few days later in case her diet was causing the dimpling.

Changing her particular button (A BARD not a Mic-Key) is done at the surgeon's office (or in the hospital if the child is there) by the surgeon or his/her assistant. It is NOT something that the nurses or we do here at home. A lot of parents like the Mic-Key button better but we have not had any major issues with the BARD and really like it. Another negative for some kids is that the change (taking the old one out and putting the new one in) is done sans anesthesia. And we have been told it really hurts. But Princess Junior doesn't register pain "normally" and actually slept through her first button change. So this isn't really an issue we have to contend with.

So, at least for a few more months or so, we are good to go on the feeding button issue! We are now massaging vitamin E oil the scars from the original insertion (There was some cutting done when the original button was put in and, yes, there was anesthesia at that point.) as her physiatrist thinks that the scar tissue may be pulling in the underlying skin and that is causing the dimpling. Massage is much better than pain!

And a big thank you!!!

We have been getting recipes for the upcoming cook book. Thank you all! But we need more, so please keep them coming. We appreciate the help. Mom says that she can see she will be trying new recipes for a long time, everything sounds so good.

Blankets and throws to keep you warm

These are some of the throws that my mom has done. She is offering them for sale to benefit the building fund for my room. If you are interested in buying one please e-mail my mom at jlvking@soapboxorations.com

Throw 1 - Pink Cabled Fans (32"x48") - $40

Throw 2 - Green and Pink Ripple (48"x56") - $40

Throw 3 - Pink Spikes ( 40"x68") - $40

Throw 4 - Diamonds (heavyweight) (44"x62") - $50

Throw 5 - Geometrics - $50

Throw 6 - Bright Stripes (32"x48") - $30

Throw 7 - Neon Ripples (32"x36") - $30

Throw 8 - Red and purple curliques (lapthrow for two or shawl)(23"x62") - $30

Throw 9 - Neon Stripes (44"x40") - $35

Throw 10 - Pastel Grannies (48"x48") - $60

Throw 11 - Pastel Teardrops (36"x33")

Throw 12 - Pastel Spiked Scallops (37"x38")

Throw 13 - Purple and Pastel Fans (32"x33") - $50

Available... Warm scarves for cold necks

These are some of the handmade scarves that are currently available. $15 each to benifit the building fund. Please e-mail my mom to verify that they have not been sold.

Scarf #1

Scarf #2

Scarf #3

Scarf #4

Scarf #5

Scarf #6

Scarf #7

Scarf #8

Scarf #9

Scarf #10

Scarf #11

Scarf #12

Scarf #13

Scarf #14

EWWWW... go wash your face!!!!

Mom has made me some really soft handmade washcloths. Since they work so nicely and feel so good she thought other people might like them too...

They are wonderfully soft, 100% cotton. Because the are not too terribly large (about 6 inches across), they are great for faces! She can make them round or square. They are $1.50 each or three for $4.00 and mom is going to put the proceeds in my building fund. Just e-mail mom HERE to tell her how many you would like and give her some color ideas (some colors you like and if you prefer variegated or solid). She will get back to you on the possibilities and your total. Shipping will be minimal.

(Mommy can do custom candy bar wrappers and some of her wrapper friends also do gift baskets and decorated paint cans. If any of you do gift baskets or cans, these are great as additions to Spa or New Baby sets.)

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 recipes@soapboxorations.com to make it easier for Mom and Dad to keep them all together and not miss one. Thanks!

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!

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.

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.

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.