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.

Mommy... I don't feel good.

I hadn't been feeling good all weekend. My nurse called the pulmo on Monday and he wanted my pediatrician to rule out some things before they got involved so my nurse called the pediatrician first thing Tuesday. We headed there and they did some blood work and took a urine sample (I hate both of those procedures!) and they came to the conclusion that I have another UTI. They put me on an antibiotic.

I still wasn't feeling good yesterday morning. It was very obvious because I wasn't moving around much and had the half eyed "Make it better!" look. Plus I was still running up and down fevers and my pulse was a bit higher than it should be, especially for being so still. So my nurse called the pulmo again and told them what my pediatrician had found and what was still going on. He gave her a couple things to do (one she had already done just before she called) and said that if I wasn't starting to get better in an hour to call back and he would probably be sending us to the ER. Well, that is where we ended up. None of us ever like going there because it's always a long, drawn out event.

I coughed up some huge green chunks while they were doing the pre-visit paperwork. I tend to be stingy with coughs so that was good. After they got us into a room I managed to fall asleep pretty quickly. Mommy says that about five or six people worked on getting an IV in me. I slept though the first three attempts. After that I was awake but because I didn't feel good I really didn't fight them that much. They used a machine that Mommy and my nurse thought was really cool. It's called a Vein Viewer. It shines a green rectangle of light on a body part and the viens under the skin show up! This is what it looked like on Mommy's arm. (Gamer Boy came to the hospital with me and he took the picture.)


Even with the Vein Viewer Mommy says that there were at least six or seven sticks in my hands arms and feet but they never did get an IV started.

They also did a chest x-ray but the doctor says that my lungs looked about the same as the x-rays from last August so he wasn't worried about anything there. He consulted with my pulmo and, because there was pseudonymonas in my trach (not uncommon) he changed the antibiotic to one that would hit the UTI and the pseudonymonas. They helped out Mommy and called it in to the pharmacy so she could just pick it up on the way home. She was worried because it was getting close to the pharmacy's closing time. It turned out that they didn't have any in stock but they called another pharmacy to fill it for her and that one was a 24 pharmacy.

So we got to go home and I didn't have to stay! YEA!!!!! Trips to the ER don't ususally end that way here. Mommy is pretty sure that it helped that I have the nursing staff here at home. It was a welcome surprise to get to go home and get in my own bed!

I'm feeling a bit better today. My fever is staying down better and my pulse, although still high at times, isn't what it has been. Something happened to my good thermometer a couple days ago. We tried changing the batteries but it still gives the same error message. :( We have a working one but this is the favorite and works the best so Mommy is going to have to get another one later today.

Decorated by my doc!

Friday Mom and Dad took me to see one of my docs for Botox. I look thrilled about it, don't I? Believe me, I was.

You can see the little white globs on my cheeks. That is the numbing cream to make the shots hurt less. I had it on my neck too. I had started arching my neck so Mom surprised me by talking to the doc about it so then I ended up getting four shots instead of just two. I knew I was getting the shots in my jaws but because she said something I also got them in the back of my neck. At least I don't have to get those or the ones in my shoulders too often.

Here Daddy is playing with me. I had been swinging my hands up in the air so I guess he was hoping I would hit his hands.


The best part of the trip was that we had a nurse sub and the one filling in is one of my buddies. I'm always glad to see him! (My regular nurse had car trouble on the way to my house and had to call to have them send someone else. And my night nurse was very kind and stayed until the sub could get there.)

I was pretty much over being out and either in my car seat of my wheelchair and my pulse was a bit high so Dad ended up giving me something to calm me down. Then I started running a fever. But I had a good nurse that night and she managed to make me feel better. I've been running one off and on since but seem to be doing ok now.

Happy Mother's Day!!!

My momma loves me lots.

Guess what today is?!?!?!?!

IT'S MY BIRTHDAY!!!!!!!

I turned six years old this morning! Mommy and Daddy and my brother brought surprises in to me this morning! Mommy had given me a Winnie the Pooh birthday balloon yesterday. My brother bought me a HUGE Disney Princess balloon that SINGS!!! REALLY!!! When you tap on the balloon one of the Disney Princesses sings Happy Birthday and she wished that all my birthday wishes come true.


You can see the blanket Mommy made me under the balloon. Then Daddy opened my birthday present. It was wrapped in pink paper and it's a Winnie the Pooh book that talks and has things for me to do. It will be fun for the nurses and me to play with.



Then Mommy brought in cupcakes for the nurses.


I can't have any but my brother was creative enough to make my formula PINK! Now he says the feeding tube blends in with my bed.

Is your baby a Good Baby baby?????

I want to tell you all about some new "equipment" that Princess Junior now has in her arsenal. I can't even remember for sure how I stumbled across it but there were several things that struck me and I decided that I wanted to try it. When I arrived I was very impressed.

Princess Junior will most likely be in diapers for a long time. Diapers = the inevitable rashes. We don't have to deal with that often but when we do, we need something reliable. And what mother wouldn't want something that is not packed with things that aren't necessarily good for their child's skin?

What did I find??? Why did I ask if your baby was a Good Baby baby??? THIS is why...

Introducing the Mayron's Good Baby product line!

When I found this online what struck me first was that it was co-developed and created by someone I had actually heard of, Melanie Mayron, the actress I loved to watch in the TV series "thirtysomething", and not by not some big corporation that also makes furniture polish and drain cleaner. Then I read some more and saw that she and her dad really did have the credentials to do this. It wasn't just some Hollywood "star" slapping her name on some product in exchange for an occasional check.

Melanie cared about what she used on her children. She didn't want the chemical laden products that flood the market. She is in the trenches with this one because she believes in the products! And part of the proceeds from the Good Baby line go to support Womens' Health Research in honor of her mother, a breast cancer survivor. How cool is that!?!

Melanie and her father, David, have spent years developing a great product. David was an Assistant Director of Pharmaceuticals and Manager of International Pharmaceutical Services at SmithKline & French Laboratories. In 1988, he founded Mayron Research Laboratories, Inc., a contract laboratory specializing in formulation of liquid and semi-solid pharmaceuticals, cosmetic and personal care products, and re-formulation of products that need improvement in stability, texture or taste. He even holds a patent on the time-release tablet, among others. I know my son, who suffers from migraines, would thank him for that one!

So... what's so special about Good Baby? Simple. No Paraben. No sodium lauryl sulfate. No DEA. Just clean, natural ingredients including essential oils, vitamins, and anti-oxidants in the aromatherapuetic tradition.

When I first opened the tube, what impressed me was that it didn't smell funny. It was a nice clean, fresh smell! That was refreshing! And when I put some on the back of my hand, it went on smooth and wasn't at all sticky. Exactly the kind of thing I want for Princess Junior!!!

The barrier cream is currently available in tubes and in handy travel packets!


As you can see by the photo at the top of this posting, there is a complete line planned. And I have it on good authority (thanks, Melanie!) that there will be a new product launch in the next month or two. I know I'm looking forward to it!

So be sure and check it out! You don't have to be a baby or have a baby to use Good Baby. There are loads of reasons that it can be used by people of any age. I know when I was a teen I would get chaffing because I didn't listen and change out of a wet swim suit. I wish this stuff had been around then!

And, to quote a certain celebrity mom... ...you don’t have to be a baby to use it. After all, we’re all somebody's baby.

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!

Do I sleep well???? YES!

When you are a Princess you are a Princess 24-7. One of my night nurses found this out when I took a regal nap. I must be waving to my loyal subjects in my dreams. And I need to work on the leg crossing thing. Mom says that crossing them at the ankles is much more lady like.

Rambling thoughts

Rambling thoughts from mom today.

Yesterday morning we lost another child on the support group we are a part of because of Princess Junior. This time a beautiful little 4 year old girl left us. This is now about the fifth or sixth child that we have lost since the beginning of the year. Just one scares me but this many is terrifying.

Even before this would I get a sick feeling in the pit of my stomach when Hannah gets sick. Things like this just make it worse. Thankfully we have no illnesses going on with her right now. And no gaps in nursing coverage for a few days.

Please keep the Hayes family in your thoughts as they deal with Charlotte's leaving.

Princess Junior update

Poor Princess Junior. I had to go to the doctor today. It was a scheduled visit. I had to get the second dose of the Hepititus A vacine. For that matter, so did Gamer Boy. So we were scheduled to get them together. I didn't really seem to think it was all that bad. I was rather relaxed, as a matter of fact. (Mom note: Her pulse was running between 95 and 110, which six months ago would have meant she was asleep!) Gamer boy, on the other hand, was not amused. He has never liked shots. Mom says that it took 3 HOURS to give him a tetnus shot when he was about 7 or 8?

One reason that he doesn't like going in for shots is that Nurse T, who did that tetanus shot, is still with the practice and remembers him well. It's a fun relationship to watch.

During one visit a couple years ago when we were in there Nurse T decided to play a trick on him. The timing worked out impeccably! She filled a 60cc syringe with dish soap and was just about to walk in the exam room when he went to go to the bathroom and opened the door. There she stood, ready to open the door herself (I told you the timing was impeccable!) They both just stood there and looked at each other. Gamer boy made the first move. He very quickly and firmly closed the door and ran to the farthest corner of the room and curled up in a ball on the floor. Needless to say Mom and Dad were just doubled over laughing like crazy.



This practice has been through a lot with us. Both with Gamer Boy's infamous shot incident, Chatty and her illnesses and following me on my medical journey. We are very grateful for their professionalism and their kindness. I don't think Mom and Dad could have found a better group of docs for all of us!

As I said earlier, today's visit was for shots. Because I don't seem to register pain "normally" the look on my face doesn't seem to change a bit when the needle goes in. That is a blessing in this instance. Gamer Boy still isn't thrilled with them but he knows the importance of getting his shots to help keep me healthy so he tolerates them. And he is very good about it. Now. He has worked past the "anything I can do to delay this" phase, through the "several false starts" phase and he can now just let them go ahead and give the shot.

Mom had them check me while we were there because Chatty has a suspected case of strep. (She went to the walk in clinic and although the quick test said no, the visual and symptom evidence said yes so that is what the docs went with.) I was extra juicy this morning and requiring more suctioning so Mom and my nurse thought it best to have it checked out while we were there. The verdict was no strep and no flu. YEA!!!! So probably something viral if anything.

Yesterday we went to the pulmonologist. This was a follow up visit that had already been rescheduled twice because of the weather. We made it this time and got a good report there. They adjusted some of my meds. One of them is real expensive (Several THOUSAND dollars!!!) and the pharmacy doesn't usually have it in stock so has to order it for us. We are just waiting for it to come in. And now we don't have to go back for 4-6 months unless something comes up.

Still need those recipes!

Mommy said she still needs lots of recipes. She is hoping that she can get enough together to have the cookbook done by sometime this summer. If you have special recipes please share them with Mommy! You can e-mail them to her here.

Thank you!

Big words make people sad

This request isn't for me. One of my day nurses has been gone for a week. She is back and mommy just found out why she had to leave. Her 34 year old son was murdered last Tuesday morning. That's a big word for me and I don't know what it means but I do know that it has made her very sad. It has also made his wife and three children sad, too. Please send good thoughts and prayers their way to make them feel better.

Thank you!

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.)