Thursday, December 31, 2009
Friday, December 25, 2009
Thursday, December 24, 2009
I know PFTs are just one aspect of how well I am doing and that I shouldn't dwell on the numbers but I can't help it....it's what I do. My doctor did tell me that my right upper airway has a few more crackles than usual and that is probably why my FEV1 went down a little. So he wants me to do an extra breathing treatment everyday and also concentrate a little extra time pounding on my upper lobes when I am done with the vest.
On a good note from my appointment my weight is still really good. I think its the highest its ever been at 115.5!! WOO HOO! They keep asking me at my appts what I am doing different to keep the weight on and honestly I have know idea...all I know is I have had to buy several pairs of new jeans! :)
Well I hope everyone has a wonderful Christmas Eve and Christmas! I have to go to the grocery store soon to get all the ingredients to make a Red Velvet cake to take to my moms tomorrow! YUM!
Sunday, December 20, 2009
Friday night, was my dads birthday but it was also my moms holiday party for her co-workers so they kind of combined the two parties and Danny and I went down to Naples and had a great time hanging out with everyone at my parents house. I made a yummy German Chocolate Cake (my dads favorite) and surprised him since he didn't know we were coming! :)
Saturday, Danny and I did a little last minute errands. I went and spent a butt load of money mailing Danny's grandma her Christmas presents out to Arizona. I kept waiting to send it because Danny's brother was going to get her something and throw it in our box and then he kept not doing it so finally I had to tell him he was on his own....hopefully the box gets to her by Christmas. If it doesn't I guess it wouldn't be the end of the world....but if it was up to me I would have had it shipped a week ago.
Saturday night some friends of ours had a Christmas party. I couldn't go to there party last year because I was sick so it was nice to be out and feeling great last night! The weather was beautiful...it was like 50 degrees last night. LOVE IT! Its not often I get to bust out the jacket. The only problem is I was wearing black flats so my feet were freezing by the time I finally pulled my crazy husband from the party at 2am!! :)
Today, I was up by 9 (that's right not getting home till 2:30am and then I had to do my vest too and I was still up early!) and then Danny and I went and met up with a childhood friend that I recently re-connected with on facebook. It just so happens that her mom lives in the same town as I do now (45min from where we grew up) and she comes up here to visit her all the time. So we met her over at her mom's house and we had lunch and a TON of christmas cookies! Its such a small world sometimes but it was nice seeing her and boy was it funny when she started pulling out the pictures from when we were like 10!! LOL
Anyway...I had a fabulous weekend and I hope everyone else did too. I am getting a little hungry though so I should try and figure out what is for dinner that is going to require the LEAST amount of energy cause honestly I am running on empty! :)
Monday, December 14, 2009
Anyway, so I woke up because I was in extreme pain (my joint pain is usually worse after I have been sleeping all night) short of breath and running a temperature. I got up to use the restroom and thats when I saw my reflection in the bathroom mirror and I noticed the red spots on my arms which where only a few last night when I went to bed had now multiplied to many all over from my elbow up on BOTH arms!
So after I used the bathroom, did a breathing treatment and took an Ibuprofen I laid back down shivering under the covers until I fell back asleep until about 9am.
Once I woke back up I called my doctors office and told them that I wasn't any better than last week and that my symptoms had even gotten worse and now I was getting SOB too. So the nurse called me back after she talked to the DR and they ended up calling me in 7 days of prednisone.
I have never used prednisone for my joint pain before but Piper had wrote a comment on my last post saying that is what she usually gets when she has similar pain/syptoms so I am hopeful that it will help.
**On a side note Piper had asked a question about my red spots so to answer her...no the spots are not tender to touch and dont really hurt at all. Some almost resemble bug bites (some are flat and some are bumpy like bites) but they are never itchy and if I accidently scratch my arm where they are thats when they hurt a little. Other than that they come and go with the joint pain and they are just there.**
Danny just pulled up so I will probably go downstairs and explain to him how to cook the pork tenderloin for dinner since I am still not able to move that well! Hopefully the prednisone that I just took will kick in soon and make me start feeling better. :)
Saturday, December 12, 2009
It usually starts with my wrist, its a little achy like I might have slept on my arm wrong. Then it gradually gets worse moving up my arm to my shoulders and it almost always is accompanied with red spots on my arm and a low grade temp. Sometimes it even effects my knees.
I called my doctor a couple days ago when it first started to hurt more hoping that he could give me something better for the pain because my trusty 600mg Ibuprofen wasn't even touching it.
Danny was gonna pick the prescription up for me at his office if need be but instead my doctor decided to call in Toradol and its not helping. NOW im stuck at home on a Saturday in excruciating pain and I can't even do anything about it until Monday because even IF my doctor is on-call he wouldn't be able to call anything in over the phone.
IM miserable and all I want to do is feel better and not hurt anymore! :(
Tuesday, December 8, 2009
In the mean time my awesome mom made a few calls and her friend Heidi got me a loaner regulator until my company can get there acts together.
The problem now though is that the loaner one will NOT stop pulsing!! All it does is pulse even if I am not breathing in...and I thought the whole point of the pulse was to conserve the O2 when not inhaling!!?? Its very annoying and almost unbearable to wear.
Hopefully my permanent replacement will come soon.
Well....last night I went down stairs at 5:00pm like usual to start dinner for when Danny got home from work and I set my tank on the kitchen counter like I always do. I was just getting things out of the fridge when the phone rang so I went to reach for it and it was just out of my reach so I stretched my arm a little to get it and when I did my tank went crashing to the floor and now my regulator is broken!! :(
I called the oxygen company right away because I was so upset and the guy who is my case manager called me back and basically said I had the ONLY pulse regulator in the whole company and he doesn't know if he can get another one. WTH....how can I have the only one?? and even if I did have the only one isn't it his job to order me a new one if the one I have breaks? I mean he is my oxygen supply company!!
For now I have a regular regulator on my tank so at least I can still go down stairs to eat and take Brodie out but it wastes so much oxygen using that kind I hate it.
The guy is supposed to be calling me back today....hopefully with good news.
Tuesday, December 1, 2009
Here are a few photos of our day!
It was SO nice to be home for Thanksgiving and to feel good enough to participate in the cooking. My mom and I also went out shopping on Black Friday (not 5 am) and got some nice things.
Danny had his birthday party Saturday night so I will post some pictures from that later. I had a full weekend but it was great! :)
Friday, November 20, 2009
I am feeling good so I have know doubt I will make it through the New Year without needing abx again. My weight is still really good, the last time I got weighed I was 115 pounds which for me is AWESOME. I can remember is high school it seemed like such a chore just to keep my weight above 100 pounds! In the last couple of months I have gone from being a size 0 jean (which I have been since high school) to a 1, then 2 and now today I just bought a size 3!!
I don't know how to explain all of a sudden being able to gain weight AND keep it on but its kind of nice. I just wish it would spread out to my legs and arms...no matter how much I weigh I have super skinny arms and legs and I hate that.
To switch topics a bit...I know I have talked a little about wanting to start yoga and that there was a class at the gym I wanted try, but I kept hesitating since I know NOTHING about yoga at all. I don't want to go in there and be completely lost and look like an idiot. So I have been doing tons of research online reading reviews from people who have purchased DVDs and I finally decided on an at home beginners yoga to buy. Its called Yoga Zone: Premiere Collection for beginners and its specifically for someone like me with no prior knowledge of yoga. I figure I can work on these for awhile until I feel somewhat comfortable and then when I need more of a challenge I can sign up for the classes! Wish me luck!! :)
I went to the grocery store the other day and I bought all my ingredients for Thanksgiving. I am making 3 pies (apple, pumpkin, and english toffee pecan!) and green bean casserole (my fav.) In the words of Rachael Ray...YUMMO! I can't wait, oh and the day before TG my mom, little sister and my SIL Stephanie are going to see NEW MOON...I have been so excited for this movies release I can hardly contain myself its going to be so good! All four of us are MAJOR Twilight fans.
Other than that I did a little more Christmas shopping today. Can you believe I am almost done already? I only need a few more items and I can officially say I don't ever have to step inside a mall/store in the whole month of December and I am very happy to be able to say that! I hate stores during the holidays way to many people.
Well I hope everyone enjoys there weekend. We have our nieces birthday party tomorrow but other than that we have no plans. We just started the first season of Dexter tonight. Very interesting show...anyone watch it?
Saturday, November 14, 2009
Last night we went to our favorite Japanese Steak house for dinner. Danny had a meal from the hibachi table while I had 2 sushi rolls...it was delicious! :)
I also had one of the best pedicures ever yesterday. I went in with a little bit of a headache and after an hour of feet rubbing and sitting in a massage chair I was very relaxed. I was going to get my eyebrows waxed yesterday too but the chick who usually does it wasn't there so I am going in an hour to get them done.
This afternoon my Uncle is coming into town so once he gets to my house we are all gonna caravan down to my parents house together. I haven't decided if we are gonna sleep there or not....its just such a pain to pack ALL my stuff for one night somewhere when its so much easier just to drive home. We'll see.
Have a great weekend! :o)
Oh Yeah...I also wanna give a shout out to Sara who is running in the Iron Girl 5k tomorrow in AZ....Have fun and Good Luck!!
Monday, November 9, 2009
He did end up putting me on prednisone but I will probably be done by the time I leave. He also has me doing 3% hypertonic saline twice a day which I hate.
I used to do that treatment all the time even at home but it used to irritate my lungs so much and make me wheeze that he ended up just d/c it because it wasn't doing me any good. I just started it yesterday and it seemed ok so we will see...
Danny brought Brodie into see me on Saturday! He had him in a little bag...it was so cute his little face was sticking out the zipper trying to see out! LOL All the nurses loved him and thought he was being a very good boy just laying with me in bed. He misses his mom! :o)
Thursday, November 5, 2009
I do still have a little bit of tightness in my upper airways and my doc said today that he could hear a little weez on the right side. If its still there by Saturday or I still feel tight he will start me on some steroids.
Not much else is going on so as long as I continue to get better I am planning to go home sometime next week!
Friday, October 30, 2009
So far everything looks ok...my doctor came in this morning and says I already sound like I am moving air better than yesterday so thats good! All I have to do is hopefully not get any fevers. Oh yeah and I just got my flu shot and I should be getting the H1N1 shot before I go home.
There are ALOT of sick people admitted right now...several with CF, some RSV and many with other types of viruses so my doctor said to really make sure EVERYONE is gowning up and gloving when they come in my room. Some of the nurses tend to only gown up when my doc is around so they don't get in trouble. Hopefully I don't have to say anything.
Wednesday, October 28, 2009
I called my doctors office today and told them how I was feeling so I will have a bed ready sometime tomorrow, that way I can have tonight to get all my things together.
I am just glad to be getting it over with now cause I will be out in time for Thanksgiving and hopefully be fine through Christmas too! Oh yeah and don't forget New Moon on Nov. 20!! ;)
Sunday, October 25, 2009
On a side note...I feel kind of congested today and have noticed the past couple days that I am bringing up more stuff than usual when I cough so I am going to call the doctor in the morning. Last year I had to spend Thanksgiving AND Danny's birthday in the hospital and I don't want to repeat that this year so if I am not feeling good now I want to nip it in the bud! I will let you know what he says tomorrow!
Saturday, October 17, 2009
Wednesday was my trip up to Gainesville for my tx check-up. I am doing great (which I knew from Dr. Faverio's office last Friday) but I was shocked to see that my weight was up even more than it was last week! I am up to 115 pounds which for me is alot...I usually hang around 105 and thats if im not sick cause it sometimes drops below that to like 101 if I haven't been feeling well. I don't know what I am doing different but hopefully I can keep it up!
Friday, my mom and I had a meeting with the interior designer of the hospital about the stuff she has pulled together for us to look at. I do like the colors she has chosen and I like the architectural design of the rooms but if I am being 100% honest I am not entirely sold on the project as a whole. I just don't see any of my ideas/suggestions that I gave her anywhere and I feel like all she did was give me the exact color palette/fabrics that they already use in other pediatric areas of there other hospitals and I didn't want my project looking like any other peds floor out there. Does that make sense? So we will see what happens.
Last night we went to a comedy show with Curt and Karen. It was ok, I thought the 2nd comic was funnier than the first but apparently the table next to us didn't agree so they proceeded to talk VERY loud through his entire set to the point where he told them to shut the F***up! I thought they were incredibly rude and was annoyed by them...and they weren't even young people they were older retired-ish age people who you would think would have better manners. I mean this is this guys job and I thought he was funny...even if they didn't they shouldn't have ruined it for everyone else! Ok...im done now! :O)
Here is a picture of us from last night:
Sunday, October 11, 2009
I have been pretty busy. Thursday I had to take Brodie to the vet for his yearly check-up and shots. I was shocked when I left there and the amount of money I had to spend. I was seriously not expecting it to be as much as it was!
Friday, I had my CF doctors appt and I am doing great. My PFT's are all up (not as high as I want but improved from when I did them in August) I sound clear and am moving air well and my weight was up another 1 1/2 pounds! WOO HOO! :O)
Friday night we then went to see my little brother's high school football game. His school didn't win but he did really well and stopped the other team 3 times from completing a play. Great job Jordan!!
Saturday, I went down to Fort Myers Beach with my Sister-in-law and Brother-in-law and there kids (Danny was working.) It was such a gorgeous day out and I needed sun BAD. I am a little pink today especially on my one knee for some reason...I must not have put enough lotion on it or something. weird I know! LOL
Saturday night, Danny and I and my other brother Josh along with our good friends Curt and Karen went to TGIFridays for dinner and then went to see Couple's Retreat. It was such a funny movie. Oh yeah and did I mention I love Vince Vaughn! :)
Today Danny is helping his brother again so I have a whole day by myself! Hmmm...what to do?
Saturday, October 3, 2009
Oh where to begin...well my BFF Amanda and her family like I said in a previous post are all out of our house now but it wasn't until this past Tuesday that they actually moved into a house of there own. So Tuesday night Danny and I drove both our vehicles down to Naples (where I grew up about 45min-to an hour away from where I live now) to bring her all her stuff that was in our garage. It took two cars because Danny had a queen size mattress in the back of his truck while ALL her boxes where everywhere in my car...I could barely even see out the back that's how bad it was!
It wasn't until we were already on the road did I realize that the dust from the garage/left over cat hair that was all over the boxes was making it a little hard for me to breath. So when we got there I did a couple puffs of my inhaler and ate my Mcd's but I wasn't really feeling any better. Wednesday when I woke up I felt ok but not by much so by like 7:00pm that night I called my doctor and he called me in some good ol' prednisone. It did the trick and I am feeling fine now!
I just finished week 3 of Azli and I have one more week and then Fri Oct. 9th I have a Dr. appt at Faverio's office so we will see how I do. I think the following week is a Gainesville/TX check-up but I don't have any test or anything that appt so it should be really fast in and out that day.
Last night Danny and I went out to Pearl Lounge. We have a friend who works there and it was his birthday so Pearl thru a big Black and White birthday bash for him. It was nice cause we got to see/hang out with friends we dont get to see all the time! Plus I like Pearl because since they serve sushi there too its like the only club/bar you can't smoke inside so its perfect for me! :O)
Well I think that is it....I am off to drop Mr. Brodie to the groomer's for a MUCH needed hair cut! Poor little guys bangs are so long it looks like you can't even see his eyes...I say he looks like my little surfer dude! LOL
On a quick side note...did anybody else hear they came out with a Scene It: Twilight Edition?? How fricking cool is that?!?! LOL We happen to love all the Scene It games (minus the Seinfeld one I was never a fan of that show!) and now that they came out with one about Twilight I can hardly contain my excitement. I smell a girls night IN around the corner!! :)
Saturday, September 26, 2009
Update on AzLi: I have finished my 2nd week of the abx and I am still not sure if I notice a difference yet. The only thing I think I notice is my cough is a little more productive. Not necessarily while I am doing the treatment (I actually sometimes feel a little bronco spasms after) but through out the day in general. I just keep hoping that when I go to the doctor in a couple weeks I have had some sort of improvement even if its just a little one!
Went to a candle party last night. I love partylite candles but they are SO expensive! I have this thing also with buying candles and then I hate to burn them (I know I am a weirdo) so even though I saw some really cute things last night I resisted the urge to buy candles and instead bought some stuff from there spa line. I got this instant manicure scrub and a soothing hand lotion because for whatever reason my hands have been a little on the dry side lately and I know my bff Eva just raves about the hand set so I will try them and see what I think.
Tonight is a girls night out....woo hoo! We are going to dinner at 5 and then at 6:30 we are going to play BINGO...LOL. I went a few months back when Danny's grandma was in town and actually had a pretty good time. Danny's mom actually won $500 bucks so I am hoping I get some good luck this time! **Keep your fingers crossed**
Well I hope everyone has a great weekend!!
Monday, September 14, 2009
Its very sad and I know his wife will miss him but at least he isn't in pain anymore. I think I might have to watch Dirty Dancing this weekend...and then maybe ghost too! :)
On a more positive note Friday I went to the doctors and I am doing great! I was up 2 pounds from a couple weeks prior and he said I sound great. I also got to pick up the Azli medication and I started it on Saturday. For those of you who don't know its a new inhaled antibiotic that is in its 3rd phase of clinical trials. Obviously I have only been on it a few days so I don't really notice a difference yet but I am very optimistic about it.
One of the best parts is I do the abx in a new eflow machine. It takes less than 3 minutes to do and is COMPLETELY silent! Its awesome...I do the medication 3 times a day for 28 days then off a month and then on again. Its taking the place of my Colistin that I do every other month. I will keep you posted on how I think I am doing with it.
Oh did anyone watch the VMA's last night on Mtv? I just have to say that Kanye West is a jerk, what he did to Taylor Swift was horrible and I felt so bad for her. If you didnt see it I am sure you can youtube it so you can see what I am talking about. I hope that he gets a HUGE backlash from his actions so he can finally realize he can't just do whatever he wants. He's done things like this before but never to this magnitude.
OK well Happy Monday and have a good week!
Friday, September 11, 2009
Take a listen:
Have a great Friday everyone!
Wednesday, September 9, 2009
My bf Amanda who moved here from Georgia a couple weeks ago needed a place to stay so her and her Fiance and 2 kids (6 year old boy and an 11mth old girl) are staying with us for the next two weeks, so our house is packed full of people! Its kinda nice having her here....we are getting to catch up on hanging out since we haven't seen each other in 3 years. Let's just hope I survive the kids!! :-)
I think this weekend we are going to have a pool day cause I am in serious need of some color! Oh BTW last weekend I saw the Ugly Truth and the Proposal both were really good chick flicks so if you are looking to see that type of movie I dont think you will be disappointed.
Any-who...that's all that has been going on with me. Have a great rest of the week!
Friday, September 4, 2009
I am on my way out the door to the social security office....always a fun experience. But today is my last day of antibiotic so I am extremely happy!
Tonight some friends are coming over and we are getting chinese food and playing some games. We LOVE game nights at our house I am not to sure what we will play yet but it will probably be either Scene It Squabble (battle of the sexes~love this one!) or Pictionary.
Unfortunately when we play battle of the sexes the boys usually win but ONLY because they usually cheat! Hopefully the girls can defeat them tonight I am tired of hearing them gloat. :-)
Well have a great Friday and a great Labor Day weekend if I don't post anything before Monday!
Tuesday, September 1, 2009
I didn't get to donate it because I would have needed 10 inches to do so and I chickened out with how short my hair would have had to be (plus Danny was REALLY not wanting me to go that short) so I went with just a little bit below my shoulders.
I am feeling much better and have an appointment with Dr. Faverio on Friday for a check-up and for my FINAL day of antibiotics!!! HOORAY! :)
Here are some pics of my hair...
Have a good evening everyone!! :-)
Wednesday, August 26, 2009
I did my PFT's which were not at all to my liking, but my doctor told me to not dwell on that (I tend to overreact sometimes) because I had only been on the good antibiotics for a week. I go back next Friday so hopefully I improve by then.
I have been seriously debating the idea of joining the gym that's right around the corner from my house. Its open 24/7 and offer some really cool classes that I am interested in trying. One is a "integrative yoga" its a beginners yoga for older people and the "less active" that keep medical conditions under consideration. Which obviously I need since I would have my O2 with me!
I did buy some workout videos which Sara had suggested awhile ago that I like but my motivation for actually doing the videos at home is very low and I know its something that I need to do. Whenever I get the energy to want to workout I do the DVDs for a couple of weeks religiously and then eventually I get lazy again. Its horrible I know and something has to change.
On a high note...my best friend is moving back to Florida this weekend and I couldn't be more excited!! She moved to Georgia over 3 years ago and I haven't seen her since so I am really happy that her and her family will be at my house for dinner on Sunday night. I have known her since kindergarten and besides Danny and my family she probably knows me better than anyone. Even if I don't talk to her for a few months when I do its like no time has passed and we pick up right where we left off. I will be glad to have her home again.
Have a great Wednesday and Happy Hump Day!! :-)
Thursday, August 20, 2009
He agreed and switched both abx which I am supposed to do for 2 more weeks for a grand total of 5 1/2 weeks of medication. It sucks but the good news is tomorrow is only a week on the new abx and I feel better than I did the whole time on the old abx. I am also on 50mg of prednisone every other day for the rest of the time too so of course I have been needing insulin.
Luckily my little sister doesn't start her sophomore year till Monday so she has stayed with me the whole week and has been such a great help. I couldn't have done it without her. She has been my personal chef making sure I eat a good breakfast and lunch everyday. We have a two story house and when I feel really crappy I hate going downstairs if I don't absolutely have to and skipping a meal isn't an option for me especially when I am sick. I don't know many 15 yr olds that are that great I am lucky to have such a great baby sister! :-)
I am going to see Dr. Faverio tomorrow so I will let you know how I do. I have to do PFT's for the Azli study because the last ones I did were longer than 30 days ago. I don't think they are going to be to good since I still have a week of abx but you never know. Just be visualizing good numbers for me!
Tuesday, August 11, 2009
Monday, August 10, 2009
Yesterday I thought I was feeling a little tight in my upper airways and sure enough this morning my doc confirmed my suspicions. So I am back on prednisone, every other day for the next week with an additional week of abx.
It sucks but at least I am going home. One more week in this room and I was seriously going to loose my mind. I am just SO ready to get home and back to everyday things. I feel myself getting more and more in a funk the longer I stay here.
I am not sure what time I am being discharged tomorrow (hopefully sooner than later) so I will post something from home tomorrow night! Keep me in your thoughts that this last week of abx does the trick. :)
Wednesday, August 5, 2009
I am SO sick of sitting in this room, I am ready to be outside among the world again. The little sun I managed to get pre-admission is all gone and I am white again. I guess I will just have to hall my butt to the beach...rough life I know! :)
Also, I have seriously been considering for awhile now that I want to cut my hair off. I don't know if you guys can tell or not in some of my pictures but its all the way down my back almost to my waist. Don't get me wrong I love my hair it just takes SO much energy maintaining it. Between washing & conditioning, blow drying and straightening by the time I am done I need a break before going out! I just think if it was like shoulder length it would be a lot easier for me I just haven't been brave enough to actually make the appointment and do it. I am to much of a chicken and I am worried I will be disappointed. The one good thing is my hair grows SO fast that if I do hate it it wouldn't be long before it would grow out again.
Anyway, I will just be sitting here waiting to go home trying not to go crazy. If anything fun or exciting or ridiculous happens to me until then I will be sure to let you all know but I don't foresee there being any problems. Although my DR is going out of town today to help his daughter who is in college move from and apt to a house so the "on call" guy will be seeing me and that is always interesting.
Well its almost dinner time so I have to check my blood sugars, get enzymes etc. my last day of prednisone is Friday thank goodness so my blood sugars can get back in the normal range again!
Have a great night! :)
Monday, August 3, 2009
Nancy and Jeff who work at the station did everything they could to make me feel comfortable and I trust that they won't make me look to bad. :-)
Once it airs they will also have a link on their website so I will post it when I get a chance. I am going to be on at 5:30pm tonight on NBC 2 for anyone local who wants to check it out.
Today I also got the chance to meet Jim Nathan who is the President of Lee Memorial Health System which covers all the hospitals in Lee County including HealthPark where the Children's Hospital is located.
He is a very nice man and its obvious that he cares a great deal about things that go on in his hospitals and the quality of care that patients get. The meeting was supposed to be at his office but since I am still in the hospital he came to me and I thought that was very nice considering how busy he is! :)
Oh yeah one more thing....just wanted to give a shout out to my wonderful friend/nurse Jackie who I made be on the news too this afternoon even though she was kicking and screaming the whole time before hand...YOU DID GREAT!! I love all you guys! :)
Wednesday, July 29, 2009
I had to cancel the news interview I had set for Monday cause I was still really sick so its rescheduled for this coming Monday so hopefully I will feel up to it. I just want to be well enough to do the interview without my oxygen on. I know I wear my oxygen out all places now but there is just something about being on tv with my oxygen that makes me really upset. It's very hard to explain why I feel this way and I know its stupid but I can't help it and I worry about it a lot.
Not to mention it causes my mom and I to fight because she doesn't understand why I have a problem and thinks that the positive things that will come out of the news interview for Jen's Kids outweighs my issue of not wanting to wear the oxygen on screen. I totally agree with her that I need to do this its just hard. I don't even know if I am making sense right now trying to explain my feelings. Oh Well.
On a side note its my little sister's birthday today and she is 15!! She has been studying for her learners permit so everyone on the road in Collier County should be a little more cautious. LOL
Tuesday, July 28, 2009
Prior to today if a person went to the DMV they could choose whether or not to become organ donors at that time by saying so on there license. The only problem with this is if the person who passed away didn't have there wishes documented somewhere other than just on there id a family member could make the final decision and NOT donate.
So today thanks to the Joshua Abbott Organ and Tissue Donor Registry Floridians can now join the state donor registry through the Donate Life Florida website, when renewing their driver license online, or when obtaining/renewing their license at a local driver license office. The best part is once your name is added to the registry your family can not veto your right to be an organ donor! You can also join the Registry by calling Donate Life Florida directly at 1-877-35-SHARE (1-877-357-4273) and requesting a registry form.
I encourage any and everyone to take a look at the website and get signed up if you live in Florida. One person can have the chance to save up to eight lives and that truly is an amazing thing.
P.S. The over 5 MILLION driver's license holders in Florida who have already said they want to be donors have been added to the list today!
Friday, July 24, 2009
Now of course anybody who knows me or has read this blog while I was in the hospital before knows that the first couple of days (no matter how well I try to be pro-active about coming in) I am in the hospital I get very high fevers and feel 10x worse than when I was admitted before I start to feel better. This admission has been no different...I haven't had any fevers yet today but the day isn't over so I am not holding breath!
With the fevers come chills, then when the fever breaks cause of the motrin I get the sweats and going back and forth with the temp does nothing to help my breathing and I feel very short of breath and then the O2 has to go up.
This brings me to the last couple of days and my nurse. She is a very nice girl and I like her just fine, its just that I feel that she barely comes in here to check on me and I am really not feeling good and when she does come in its like she doesn't get just how not feeling good I am! I don't know I think I am being a little to sensitive because I don't feel good and people tend to get on my nerves a little easier when I am sick but dang people how hard is it to check on your patient to see if she is still breathing when she is on like 6 liters of oxygen!
OK now that that is done on to some good news. I had a meeting scheduled for yesterday afternoon with the Architect and Interior Designer of the hospital but since I was in the hospital the came to me! We went over some of my ideas (which they liked) and they are gonna work on getting everything set up and we are going to meet again in a month to see what they have come up with. Since we obviously can't close the whole unit we can only complete two rooms at a time until the whole project is done but thats ok. I am SO excited and dont worry I will be documenting everything along the way! :)
Have a wonderful weekend and think good thoughts for me so I can start feeling better and go home to my hubby and puppy!!
Tuesday, July 14, 2009
Naples Daily News
On January 27th we have to go back to Healthpark (were the Childrens Hospital is located) cause now our local ABC and NBC news wants to do a story! YIKES!!
Saturday, July 11, 2009
Once the check presentation was over it was time to do my interview for the "mini commercial." It was excruciating in the fact that I hate being on camera answering questions about myself and talking about my CF...but the videographer was awesome and he made it as easy as possible for me! I can't wait to see the finished product and hopefully I don't sound to much like an idiot. Hopefully when its done I can get a copy and upload it to blogger so you guys can check it out too!
We don't really have to much planned for the rest of the weekend. Its raining right now, I want to go to the beach tomorrow so I am hoping its nice out. Have a great weekend everyone! :)
Thursday, July 9, 2009
I weighed in at 114lbs (which I think is up from 3 months ago when I was there but I forgot to ask what I was last) my six minute walk went great and my FEV1 went up by one percentage point! I know that's not really a big difference but the fact that it didn't go down is good in my book.
So since nothing has really changed I have my next appointment set for 3 months from now. I honestly believe that the fact that I am wearing my oxygen more and in turn I am walking and getting around WAY better than I have in a long time is what is making me feel better. I have lots of energy and I am out of my house enjoying life with family and friends again. Its great!
Tomorrow is my "commercial" for Jen's kids at the hospital along with us presenting the first $30,000 to the hospital to get started on stuff. I am super excited to present the check but not really looking forward to being in the video...my mom is kind of making me do that part! You know with it being "my vision" she says I need to do it...so I am. I just hate being on camera! :(
Next Friday I finally have an appointment with Dr. Faverio to sign all the paper work so that I can have the inhaled Azli. I am really looking forward to starting it and I am hoping it will be beneficial.
I am going to bring my camera tomorrow so hopefully I can get some pictures to post tomorrow night.
Monday, July 6, 2009
My job is to come up with 4 songs to play while the video is in progress. I can pick whatever I want I just need to have it by Friday.
I am having a little bit of trouble deciding on what to do. I was kind of thinking of going with a theme about going home/making the peds floor like some kids "home away from home." With that in mind some of the songs I have thought of so far are as follows:
Carrie Underwoods version of Motley Crue's-Home Sweet Home
Bon Jovi's-Who says you can't go home
Check them out on Youtube and let me know what you think...or if you have any better ideas/suggestions I will take those too!!!
Thanks guys!! :)
I had another really great weekend. That makes two in a row so I am just wondering how long this trend is gonna last or when am I gonna start feeling crappy!!
Danny's grandma is in town visiting so Friday night we went out to dinner with her and his parents and then just came home and watched a movie. They had never seen Bride Wars yet so we watched that movie (I have already seen it like a million times!) which is fine because I love it and could watch it over and over again.
Then on Saturday my whole family (mom, dad, 2 brothers and sister, brothers girlfriend, plus my mom's two crazy dogs!) came up to our house for the 4th. I made a big pan of baked ziti for dinner and then we all (minus dogs) went downtown to our cities 4th of July celebration called...Red White and Boom! It was hands down the best fireworks display I have ever seen it lasted a good 20 minutes with like 3 finales all set to different american themed songs. It was awesome.
Sunday, was our niece/god daughter Delaney's 2nd birthday party and then after the party Danny and I along with Curt and Karen went to the beach for a couple of hours. I love going to the beach but HATE it when it is time to leave and there is sand EVERYWHERE!! Not fun. :(
Wednesday is a tx check-up in Gainesville so either that night or the next day I will update you all on how I am doing. I have a feeling they are going to tell me I am doing good...and by good I mean stable so I am sure I won't be moving anywhere up the list anytime soon. I have PFT's, six minute walk and blood work this go round so I am sure its going to be along day. Wish me luck!
Have a good week everyone! :)
Monday, June 29, 2009
We got to Fort Lauderdale at around 10:15 Saturday morning. Luckily when we got to the hotel and told them we were there they had our room all ready (normally check-in isn't till 3!) so we were able to put all our stuff in the room and head straight for the beach!
Karen and I spent most of Saturday on the beach while the guys walked up and down A1A in search of rum runners! I was hell bent on getting color but NOT turning into a lobster so I applied SPF 50 like a mad woman every 45 min and I did a pretty good job because I am only pink in a few spots where I missed on accident and the best part was I didn't need my 02 while I was on the beach so I have no oxygen marks on my face..WOO HOO!! :)
Around 3:00 it started to rain so Karen and I were forced inside by mother nature. It was ok cause we were a little hungry anyway so we went to the poolside restaurant for a quick bite then headed to our room to get ready to go out that night.
For dinner the 4 of us went to Lulu's Bait Shack. It was SO good...I think I had the best fish and chips I have ever had there. Danny and Curt both had rum runners (again) and Karen and I shared a Fish Bowl full of Tropical Ecstasy...it was VERY good! :)
After dinner we walked up and down the strip looking at different tattoo shops but didn't get anything. Karen wasn't feeling that great so we went back to the room by 11:30. That's right...for once I wanted to stay out and someone else wasn't feeling good! oh well.
Sunday morning we got up and I ate a humongous breakfast at Denny's and then we headed back home stopping at a few places to sight see on the way.
All in all it was a quick but fun trip and I am glad we went. Its not very often I feel great so when I do its nice to be able to enjoy myself and have fun. Next weekend is 4th of July so I am hoping I can continue feeling good so I can enjoy fireworks with everybody downtown!
Friday, June 26, 2009
I can't remember if I said this already but last week our ice maker broke. Our fridge is 1 1/2 yrs old (just old enough not to be covered under warranty) and it just stopped making ice! So we had a handy man come out and $200 later we have a brand new ice maker. Then the very next day our microwave stopped working! Unbelievable, we spent all this money to get "Kenmore Elite" appliances and we haven't been in our house 2 years yet and things are breaking....they just dont make things like they used to! So I have been without a microwave all week and let me tell you...you don realize how much you use a microwave until you CAN'T use it! The handy man ordered the part yesterday and is coming back Monday to fix it. Luckily it was only a little part that cost like $30.
I am super excited about this weekend. Danny and I along with our good friends Curt and Karen are all going to Fort Lauderdale! WOO HOO! We are leaving super early tomorrow so we can get a full day on the beach. We are only staying one night but I can't wait. I will try and take a bunch of pictures and post them when I get back.
Also, can you all believe Michael Jackson passed away yesterday? Regardless of what he may or may not have done (and I tend to lean more towards he did do) I LOVED his music. I have MJ greatest hits, I have Jackson 5 greatest hits...I love them all!
Wednesday, June 17, 2009
Last Thursday, I went to my mom's Rotary Club meeting with her. They did the first ever Jen's Kids presentation on there own club as practice before going around to all the other clubs in the area to try and get donations for the foundation. My mom's club voted that same day and decided that they wanted to contribute $30,000 to Jen's Kids!! I am so excited to get started!
The weekend was pretty good. Friday night Danny's brother and his wife and kids were here and we ordered pizza for dinner and then spent the rest of the night playing Wii. It was SO funny...I never played before I always just watched but I played this time and had a blast! Danny's brother who is 28 (29 on Saturday) did the Wii fitness thing where it estimates how old you are by how well you can do tennis, baseball and bowling....well he was a 63!! LOL we thought that was funny.
Saturday, Danny worked so I read Breaking Dawn most of the day and then Saturday night Me, Danny , our friends Curt and Karen, and Danny's brother Sean and his wife Tiffany went to Sakura for dinner. That is our favorite Japaneese restaurant in our town. Everybody there knows us because we go there so often. We LOVE it there! After dinner, we all went to the movies and saw The Hangover. It was hilarious...if you want a good laugh the entire time kind of movie go see it. Its from the director of Old School so we knew it was going to be funny!
Sunday Danny worked again (story of my life) so I finished up Breaking Dawn. I am happy I finished all the books but I am sad the story is over :( I could read about Bella and Edward Forever! <3
Yesterday I babysat my nieces. It was supposed to only be for a couple of hours but ended up being 4! Trying to keep a 4 and 2 year old entertained is not easy. Luckily they brought lots of toys and movies with them. Unfortuantly whenever the girls are over I have to put Brodie in his cage...he isn't used to little people and I don't trust him around them!
Well, I caught you all up....its not to exciting but hey we have fun! Have a great rest of the week ya'll! :)
Tuesday, June 9, 2009
2 years ago today I married the best guy ever!! I couldn't have dreamed of a better husband and I am so thankful everyday that we are together. He makes me laugh all the time (even when I am trying to be mad at him) and I think that's the key, that we always have a good time together...whether it be in a group of people or just me and him. I love him with all of my heart and always will!
I woke up to my standard 2 cards beside me (1 funny and 1 serious) and we are going out to dinner tonight when Danny gets home from work!
Thursday, June 4, 2009
I love these book and can't wait for New Moon to come out in theaters November 20!
CF health wise I am still doing great but I woke up this morning and I have my joint pains again. It used to spring up like once a year and now it seems like every few months my joints hurt and I hate it. The last time I went to Target I was looking at Glucosamine pills thinking that might help but I didn't buy them because I wasn't sure. Does anyone else ever have joint pains and if so what do you do??
Monday, June 1, 2009
Friday night our good friends Curt and Karen had there house warming party. I made my delicious swedish meatball recipe that I got from my best friend Eva years ago. Its so easy and everyone LOVES them! We ended up not getting home until 3am...the part that sucks about getting home so late is Danny passes right out and I am stuck up doing my breathing treatments and vest before I go to bed! But I do it! :)
Saturday I actually slept in till 11:00 which I never do but I was tired from the night before. Once I got up I did my morning routine and right as I finished my mom and sister pulled in the drive-way. They were bringing home Brodie (my mom had him at her house while I was in the hospital and while we were away on our trip) and then we went shopping! I got a fantastic mirror at Home Goods for my dining room and some new plants for by my front door since Danny let my old ones die while I was away!
Danny worked all day on Saturday (when I say all day I mean he didn't get home till 11:00pm) so after I was done shopping and potting my plants with my mom, I walked next door to my In-Laws house (yes that's right I live next to my mother and father-in-law) cause my nieces were next door swimming so I went and visited with them for a few hours before coming home and reading a few chapters of New Moon. I ended up having Chili's for dinner with my SIL & BIL since Danny still wasn't home...note to self NEVER sit between a 2 yr old and 4 yr old again if you plan on actually eating your dinner! Every minute it was Aunt Jen, open my crackers. Aunt Jen, what's this. Aunt Jen, Aunt Jen, Aunt Jen!! I think I am going to change my name! :)
Sunday, was our nieces birthday party so we went to that for a few hours and then had some errands to run. I had to return a couple things to TJ Maxx and then we went to Target to get some cleaning suppiles which for whatever reason Danny will only get a Target. After we dropped the stuff off at home, we grabbed Brodie and went over to Curt and Karens for dinner. They have a cat and its so funny to see her and brodie interact. He is SUCH a wuss!
Tonight, Danny is bowling....he just started on a league for the summer so I am probably going up there to cheer him on!
Have a great Monday!! :)
Wednesday, May 27, 2009
I had a wonderful visit at my uncles house despite not feeling good because I didn't have a working nebulizer cup. Note to self: open new neb cup and check that it works before going 8 hours away from your house!
I thought for sure since I had a crappy weekend health wise plus the fact that my doctor had to call me in a prescription of prednisone while I was up there that he would have wanted me to do an extra week of IV abx, but luckily he said that today could be my last day like we had planned.
Thankfully I am done today...I am SO white and pale I need sun! I am going to set my beach chair up on our deck and start sitting outside a little bit each day. Even if its just an hour while I read its better than what I am doing now.
Danny's friend Curt has his sister here visiting from Minnesota and when she walks in and is WAY tanner than me who lives in Florida there is a problem! :)
I have some pictures that I want to put up later...right now Danny and I have to go to Target to get a birthday present for our niece and then we have to go food shopping! I was gone for 2 weeks in the hospital and then away for a long weekend so we have NOTHING in our house. When I am gone no cooking happens so I have to stock up again so I have stuff to cook for dinner.
Saturday, May 23, 2009
I am having a little bit of an issue though. Yesterday when we got here we unloaded all of my crap and set me up to do a breathing treatment and my vest and my neb cup wasn't working right. Its a brand new cup that I opened when I got here but the problem is it is barely smoking so I feel like I am not getting the full amount of medication and it takes an EXTREMELY long time to finish. I don't know what the problem is but because I haven't had a good treatment since I got here. I feel very congested and that's not a good thing. My mom and Uncle Eric just went to a local medical supply store to see about getting me a new med cup...hopefully that helps if not I am going to call my doctor.
Another thing that is kind of annoying is the time difference. We are on eastern time at home and they are on central time here. They are an hour behind us which is making my IV schedule real interesting.
We are going around and sightseeing today....its rainy out so we aren't going on the boat like we had planned. Tonight we are doing a crab and shrimp boil...YUM!
Sunday, May 17, 2009
I am discharged Wednesday, then Thursday I have to get my hair cut, get my eye brows waxed and possibly get my toes done (depends on how much time I have) and pack because early Friday morning me, my mom and my sister are leaving my house to go and visit my Aunt and Uncle in Panama City Beach! WOO HOO!!
I will still be on abx for a week when I leave the hospital but its not that big of a deal. One med is due once a day and the other med is every 8 hours so its a piece of cake.
I can't wait to get home and be able to drink my iced tea again! I have been drinking Sierra Mist Free for a week and half. When I was first admitted I asked for unsweetened tea because I did not want to go back to soda since I have done so good at home at not drinking it anymore, well I can not describe to you just how bad there tea taste...it disgusting! I really tried for a few days to drink it but I just couldn't so instead of going right back to Coke I chose the lesser of the two and went with SM Free. Its not that great, I have never been a fan of diet sodas but its ok for a temporary thing. I just drink it with my meals and drink water the rest of the time.
There is this big block party thing that is gonna be in our town memorial day weekend (the weekend I am going out of town) its like 3 days long and there's gonna be tons of bands and things to do. Well Danny just told me the other day that he heard Vanilla Ice was gonna be there...how funny is that? Ice Ice Baby....
Well, I guess I will let you all know if anything happens from now until I go home. Until then enjoy the rest of your Sunday and have a good week!
Tuesday, May 12, 2009
Not only did I have 2 days of fevers...but I also spent 2 days over a trash can throwing up anything I ate or drank! It was NOT fun.
On Wednesday I felt better as far as no fevers went but then I started having my joint pain. So by Thursday my doctor had given me Tylenol w/codeine because nothing else was helping the pain. My pain started to go away but then the codeine messed up my stomach and that's what was making me get sick. I started throwing up Thursday at midnight (Friday morning) and was up all night getting/feeling sick. So ALL day Friday I was NPO and getting continuous IV fluids (so I wouldn't dehydrate) and Zofran every 8 hours for the nausea. I was able to eat a little bit by Sunday but it wasn't till yesterday my appettite got back to normal. Luckily not eating for 2 days didn't affect my weight at all which is surprising.
So now that the week from hell is over hopefully I can kick my health into high gear so that I can be discharged by next week.....I have a trip to go on! :)
Thursday, May 7, 2009
Unfortunately, the one antibiotic I am on Fortaz makes me itch like crazy so that is the only thing not going my way.
Otherwise I am doing great...im only on the third day of abx and I already feel better so hopefully I can keep this up!
The benadryl I am taking for the itchiness is making me a little sleepy so I think I am gonna lay down for a few minutes! I will let you know if anything changes. :)
Tuesday, May 5, 2009
Well around 4am I woke up and I was freezing! I kept trying to warm myself up but it wasn't happening. That's when the RT came in to do my breathing treatment and I told her to get my nurse because I thought I had a fever...which of course I did. So I took Motrin and then went back to sleep. When I woke up again at 8 I had another fever and its been pretty much the same all day, once the motrin wares off the fever comes right back. I have been miserable all day! :(
Hopefully this doesn't last all night! I am super tired and want a good night sleep...if that's even possible.
Monday, May 4, 2009
Sunday evening we had Danny's brother and his wife and our friends Curt and Karen come over and we played Scene It: Squabble. Its a battle of the sexes type game and its HILARIOUS to play! The boys won but we are convinced the game likes them better they always get the easy questions!! By the end of the night I was feeling a lot better and this morning I feel ok but I still can feel the congestion a little bit so I am going to be admitted....I am just waiting for them to call me and say there is a bed available.
I will let you all know how I am doing once I see my doctor.
Sunday, May 3, 2009
I had a pretty normal week the only difference being on Thursday I had an appointment at the social security office. I don't know about the offices in your towns but here you might as well pack a lunch because you will be there all day!
The weekend so far has been pretty good. Friday night Danny and I watched Bride Wars, I saw it in the theaters on my birthday but I cried AGAIN just like the first time! Its a really good movie and I suggest you see it if you haven't already. :)
This past week I have got back in touch with a friend who I haven't talked to or seen in 2 years so on Saturday she drove up to my house (I live about 45 minutes from where I used to live with my parents) and we hung out all day. It was so nice to see her and I found one other person who hasn't seen my wedding video yet!! I will will show that thing to anyone who stands still long enough! :)
We also went to Ruby Tuesday's last night. I usually like that restaurant (especially the salad bar) but last night my dinner was NOT very good. I think we might put it on the back burner for awhile Danny hasn't been to impressed the last few time we have gone there so I think we need a break from it. When we got home we watched Paul Blart: Mall Cop. It was a funny movie but from seeing the previews on tv I thought it was going to be funnier than it actually was.
Today our plan is to go see the new Wolverine movie im just not sure at what time my cousin John is supposed to be calling to let us know. I will let you all know how it is. I liked all the X-Men movies so I think I will like this too.
Oh yeah....Danny's back is feeling WAY better. It took a good 4 or 5 days for him to be able to move around without being like an 80 year old. He was able to go back to work on Tuesday (he hurt his back on Friday.)
I hope everyone has a great week!
Sunday, April 26, 2009
Luckily my sister-in-laws dad is a chiropractor so we called him and he came over yesterday afternoon and worked on Danny's back. He is coming back tonight to work on it some more. Danny has been wearing a lower back brace and keeping it on ice continuously. Hopefully it should be feeling better tomorrow.
He doesn't know what he did to it but he has been in construction for over 1o years and he is constantly lifting, bending, pulling, climbing...you get the point.
We were supposed to go to the beach today but had to cancel because Danny didn't feel good. :( I told him he can't fall apart...that's my job!!
Sunday, April 19, 2009
Friday night we watched Role Models....it was hilarious! I recommend it to anyone who is in the mood for a good comedy.
Saturday, Danny worked around the house during the day then Saturday night I worked on making Danny a resume (construction is VERY slow here) so he can look for a part-time job and then Saturday night we finished off season 2 of Weeds. Weeds is a showtime show that we just started watching.
Then today there was a craft fair that comes to town like once or twice a year and I really wanted to go but my mom had things to do today and Danny was NOT letting me talk him into going! :) So I did nothing today either....I feel like such a bum.
Health wise I am good. I felt kind of congested the other night but I had Danny do CPT by hand after I did my vest and the next day I felt better. Does anybody have any other tips or suggestions on how to get the junk out of my lungs?
My mom wants to go see my uncle at the end of May and I am not letting myself get excited about the possible trip because my track record has been I get sick every 2 months or so and its right around that time so I am doing all I can to try and stay well. Unfortunately we all know that I can do everything right and I could still get sick so we will see.
News on Jen's Kids: Next week my mom and I will be meeting with a guy from the hospital to finalize the paperwork on the Jen's Kids Fund. Then all we need is money and we are in business!
To answer Somers question from a previous post Jen's Kids is not its own 501(c)3 because its under the "umbrella" of Lee Memorial Hospital's Foundation but it's its own deal meaning the money can only be used for what we say and is sepearte from any other money the hospital raises.
Well I have to go food shopping now...lucky me! Have a great week everyone. :)
Wednesday, April 15, 2009
I didn't have any test to do this time all I gave them was a sputum culture. So when I go back the first week of July I will have the usual blood work, six minute walk and PFTs to do.
My tour of the hospital went well last night and my mom and I spent the whole car ride to Gainesville and back making lists of our different ideas for the peds unit. I am going with my mom to her Rotary meeting tomorrow afternoon again so we can talk about Jen's Kids afterwards.
Well that's all I got for today...I am super tired after getting up at 5:30 this morning to get ready to leave for my check-up so hopefully I can get to bed early tonight!
Have a good night.
Tuesday, April 14, 2009
Also....I am going to Gainesville tomorrow for a tx check-up. My appointment isn't till 11:30 so we actually don't have to leave the house till 7:oo (we usually leave between 6 and 6:30) which is nice!
Have a great day! :)
Saturday, April 11, 2009
I am going to the grocery store later today to pick up all the ingredients I need for the two desserts I am making tomorrow for dinner at my moms. YUM!
In case I don't post anything tomorrow, I just wanted to tell everyone to have a Happy Easter!! :)
Wednesday, April 8, 2009
Other than that I don't really have anything to report. I had a good weekend my mom was here on Saturday and we went out shopping and then on Sunday 2 of my childhood girlfriends came over to my house and we had lunch and cocktails...it was a great afternoon and I can't wait to do it again! :)
Did anyone watch American Idol last night? I definitely think the blind guy has to be going home. He was HORRIBLE last night and I hate to say this but if he doesn't go home I am thinking its because of sympathy votes...does that make me horrible? :(
Friday, April 3, 2009
Our friends Curt and Karen finally closed on there house and moved out last weekend. Its nice but sad too, they have been her for 8 months so I got used to having them around...plus I have become really close with Karen so I miss her! It's ok though they literally moved 3 minutes away from us! and believe me we haven't seen Curt ANY less he has been over everyday this week! LOL :)
Now for my project news.
As most of you know from my many hospital postings I am usually admitted to the pediatrics floor because I still have the same doctor from when I was a kid. The last couple of times I have been admitted (lets be honest its been a lot this past year) I have really noticed how run down the peds floor looks. To my recollection the only things that have been done since it opened (in 1995) was paint and they switched the hallway floor to linoleum instead of carpet. So its taken quite a beating over the years.
This last admission I was talking to Kelly who is the child life specialist at the hospital and I was asking her why it was that Peds Oncology was always so nice while normal pediatrics was like the red headed step child of the children's hospital. She informed me that there was a foundation set up by a girl's parents after she passed away from cancer that raises money every year and that money goes to peds oncology to keep it updated and looking nice and to buy anything the floor needs for the kids.
Well that got me thinking and I was kind of annoyed. I understand that having cancer as a kid must suck and they want to make there time in the hospital as nice as possible but there are plenty of kids with other illnesses that spend just as much time if not more on the regular peds floor as some kids in oncology and if you saw the difference between the two floors you would be appalled.
So when my mom came to see me in the hospital I told her what I had learned and told her that I wanted to start a foundation and raise money for peds so that it could get a "face lift" and be a nice place for these kids (and young adults) who spend so much time there. Well if anybody knows my mom you know that she is a go getter and that's all I needed to say for her to get the ball rolling!
Long story short and FF 3 weeks....we now have Jen's Kids formed and with the help of my moms awesome Rotary club we are working on getting the money together to actually fix up the hospital and I am super excited about it! We are going in a couple weeks to tour the hospital so everyone on the Jen's Kids committee can see the world of difference between peds onc and peds. I will keep you guys posted on the progress and I am hoping they will let me take pictures of the before and after so you guys can see the improvements we do along the way!!
Oh and....I get to help pick out what I want it to look like (with the help of the hospital's interior designer of course) isn't that cool??
I am just SO glad I am getting an opportunity to do this....the nurses and staff are so awesome on peds (with the exception of a few who I won't mention) and have taken such good care of me it makes me feel good that I can make this happen and all the little CFers out there and other kids who spend time there deserve a nice place as well. We all know first hand that being in the hospital is not fun AT LEAST they should have a nice place to be without broken everything!!
OK well have a great weekend everyone!! :)
Sunday, March 29, 2009
I got home at 11:30pm so of course didn't get to bed till almost 2:00am. Today it has been raining ALL day outside perfect weather to sleep in! Danny has even been lazin around today and he does not do that often.
Here are some pictures from last night...we got yelled at SEVERAL times for taking pictures, they thought we were taking pictures of the stage (the first time we were) but once we were told not to do that we started taking pictures of ourselves and we still got in trouble cause they thought we were taking pictures of the stage!! I tell ya we always get in trouble together. :)
I always have a good time when me and Kasey get together, we used to go to lunch a couple of times a month when I worked by her work but since I work from home now we don't see each other that often. We will definitely have to have more "girls night out" I had a blast! :)
Thursday, March 26, 2009
Tuesday, March 24, 2009
We were gone ALL day and didn't get home till 5:00. We had so much fun and the best part was I had the energy to walk the entire time without sitting down and needing a break. I did have my O2 with me but usually even with oxygen I still need to take a break but this time I was fine! It was so nice to be feeling good and be out an about. It sure as heck beats being stuck at home or in the hospital!
Once we got home we planted my new flowers in there pots (that was funny we had potting soil everywhere!!) Then we watched TV for awhile waiting for Danny to get home and then we went back out to get dinner and go to Target! I was so tired by the end of the night that as soon as my head hit the pillow I was out like a light! :)
Here are some photos of my pretty flowers....lets just hope I can keep them alive!!
Sooner or later my house will come together. We have lived here a little over a year and its just now starting to feel homey to me. A little at a time....