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. 

Oh where, oh where has my wheelchair rolled off to...

My parents are not happy campers at the moment. You see, someone went into our van during the night and took my wheelchair. Now I can't go to my therapy appointments and doctor appointments without it really being a big ordeal.

Check mom's blog to see what happened... CLICK HERE

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.

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!

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.

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.